A Compilation from entries up through January 2, 2010
Bryer decided today - enough is enough. After a day of taking a bottle, she reached up and ripped out her own feeding tube! Less than 2 weeks ago we sat across from doctors who told us that she could go home with a feeding tube for 1-2 months. God's miracles are working through her. I know that God hears all prayers, but sometimes it's hard to pray with an open heart for His will to be done. I just wanted so bad that He would answer our prayers in a way that we wanted - for Bryer to improve. I'm so glad that He has decided that this is His will. Today the prayers of so many people have been answered in the same way we had hoped.
More good news - another milestone we were hoping for - she got to nurse today! Sometimes the scriptures refer to something that is so precious that the words cannot be written. From my own heart, I cannot relate in words the tender feelings I have had while I hold Bryer and now get to nurse. That alone is a blessing and is enough to complete me. It takes more work for Bryer to nurse than to take my milk from a bottle. A miracle all in itself that she has the strength to do it. We have to ease her back into it to make sure she's getting enough since what she nurses can't be measured; so we are alternating every other feeding with a bottle of my milk.
If our day couldn't get any better, Bryer gave me another surprise.... Her first smile in the hospital! All our other kids have smiled at Jason first as babies, except Bryer. Jason had joked and said this trip to the hospital would be her 'reset button' for him to get the first smile out of her. Today she was just waking up in her hospital bed as I stood by her. I used my best, deep Dad voice and said, "Good Morning Bryer!" Her eyes jumped and the corners of her little mouth turned up as she focused on my face. It was enough to melt me and my eyes started watering. It's a strong contrast of being in a 'vegetative state' of what the doctors predicted as a possibility.
They have been worried about her weight gain, as she is supposed to gain 1/2 ounce a day and she only gained 3 oz. yesterday. They want to see a balance between weight gain and fluid retention before they release her from the hospital. We had our family doctor talk to these hospital doctors to be sure that the reason was legit. She seems to be progressing quickly now, but the doctors still act strangely cautious. We just want to make sure they aren't holding her longer than they need to. I just simply don't trust them after what we've been through.
She has been alert a lot, focusing on faces, and tracking things with her eyes a little bit. I'm excited to have her out of the hospital, but a little nervous too about having her home in normal life with 5 kids in such a fragile state. I did get the okay from the doctors to walk the hall with her, which feels so strangely 'normal.' It helps pass time, it wears her out, it's fun to have something new to look at and show her, and it just feels wonderful to be out and about with my baby!
January 3, 2011
I took this picture of Jason this morning before our whole world came crashing down. He left shortly after and I sat by Bryer's bed sorting through information my family had printed out about alternatives to SBS. I sorted through Menkes disease, chicken pox on the brain, meningitis, vaccine reactions, vitamin deficiencies, and more. The more I read, the bigger the lump grew in my throat. I felt strongly that I should put the papers down, but my curiosity got the best of me. I had to research to prove myself innocent. I couldn't just sit around and waste any spare minutes while the doctors put their files together against me.
At that point, a nurse came into Bryer's room and told me there was someone to see me. Bryer was sleeping in her bed, so I stepped outside the room to find a woman police officer. She asked if we could talk in a room down the hall. I filled the nurses in on Bryer - that she was sleeping and I would be back in a minute.
I was led back down to the same room where I had sat with the investigator until the week hours of the morning 2 weeks prior. The same room Jason and I were questioned by the child abuse doctor. The room did not have a welcoming feel to me right off the bat, despite the cushy chairs and end tables. The officer sat down across from me and handed me a form. She said they were declaring Bryer in Eminent Danger. This is the same kind of form they handed Jason and I just before Christmas with all 5 of our kids' names printed on it. This time it only had Bryer's name.
My heart sank. My mind went blank. They were taking her away from us! Last time I had my husband to lean on. We found strength in the Lord's preparation for us in having our kids at his parents' house. This time it completely blind-sided me. They were taking my baby right out from under me. I sat at her bedside for two weeks and literally nursed her back to health. They left me unattended with her behind closed doors for hours at a time. Yet now they chose to declare her in danger of me?! How is this even legally possible that they can come in a yank a baby away from her mother? How is it possible that doctors can have so much say over a happy, well-adjusted family?
I tried to find words. A question to ask. Something to say. Anything. A person can never be ready to hear that their child is being taken from them. The only thing that came out was, "Can I go back to tell her good bye?" I will never forget the officer's reply. It was like the scene out of a movie when they zoom in on the lips to make a drastic emphasis. She said, "If you can promise me... that you won't hurt her." Tears immediately poured from my eyes and I just stared at her and shook my head, unable to get any other words out. I wanted to tell her, "I didn't hurt her in the first place, I'm not going to hurt her now!" I am not a yeller. I am not an arguer. So what else was I supposed to say in response to that?
As I walked down the hall back to Bryer's room, sobbing, I asked if I could call Jason. She said that would be fine, but that they could only wait long enough for me to get my things out of Bryer's room. He was just pulling into the hospital parking lot when I told him the news, and to hurry.
They brought me a big red wagon to pack all my things - the kind you see kids riding in at the zoo or the park. My arms and legs shook as I tried to get around the room to gather my things. My mind was scattered and I couldn't concentrate. In between packing things, I would go over and kiss Bryer. My body was half-way stalling so that Jason would get there in time, and half-way stalling just because it wasn't working right. The emotional trauma had taken over my mind, my body, my decision-making skills. I had to stop to blow my nose and wipe my eyes to even see what I was doing. I tried to decide what was mine and what was Bryer's. We had been so engaged in each other, even our physical items were hard for me to decide between.
I heard stories of foster kids being pulled from homes in the middle of the night with only their jammies. How could that be my baby now, somehow in someone else's care that knew nothing about her?! I left her 2 extra pairs of clothes, wrapped in her pink and brown blanket, the stuffed animals, and family pictures on her bed. I wanted whoever had her to know that she was loved very much.
Jason got there just in time as I was placing the last of my things in the wagon. He helped me gather it together and talked with the officer briefly. I kissed Bryer as she slept. I whispered to her that I loved her and that Heavenly Father loves her and He would watch over her. Jason walked over to tell her good-bye too. This was a moment a parent can never be prepared to do.
We walked by the nurses station, sobbing. My voice was not working, but I got it across that she likes her white binky better than the green one, but that I couldn't find it. I also told them about the breast milk in the freezer down the hall. The nurses also had tears in their eyes as I tried to give them instructions. Jason and I were escorted down the hall by several police officers to the sleep room where we kept the rest of our things.
As we tried to quickly pack up our belongings from the last 2 weeks, I found the shirt I had been wearing the day before. I wrote a note to put with it that explained that it smelled like me and to please keep it with Bryer so she would feel secure. The pain I felt as I wrote was unbearable. What else can a mom send with her baby that is being ripped away from her? I again went through the 5 senses. Smell - check. Sight - the family pictures would have to do. Taste - my milk, check. Hearing - there was no way and I couldn't think straight. Touch - I emotionally lost it. How could I transport touch to my sweet baby girl that needed me so much right now for her recovery? I sobbed and packed, hoping that I had covered as much as I could.
Jason and I stepped outside the sleep room with our arms full, and now pulling a wagon. I gave the officer my shirt with the note. Again, several officers walked behind us down the hall to escort us to the hospital main doors.
"I guess I thought life with five kids was going to be harder than this." Sometimes I catch myself going back to that comment. I wonder what God thought when He heard me say that. I wondered if He flinched at my pride or if He frowned at my smugness. What I believe now is that He smiled down on us, rubbed His hands together firmly and thought, "They have been prepared and are ready for a challenge."
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Sunday, March 16, 2014
Sunday, March 9, 2014
#12 - Journal Entry From December 29, 2010
It feels so good to slip back into the role I'm used to being. A Mom. I snuggled Bryer as she slept today on my chest. As we rocked in the chair next to her hospital bed, I got a whiff of her sweet baby smell. Before that moment, I hadn't realized how much I missed her scent. I had been conscience of keeping my own 'yesterday's-shirt' next to her for my scent, but not the reverse. A flood of emotion came and I blinked back the tears, worried that if the nurses came in at that moment they would read too much into it and see my tears as sadness, not the gratitude I was filled with to hold my sleeping baby. I feel like every action or question I ask is being read into or documented, just in case they need to use it against me. It would be much easier to just let them have a look into my heart and see my every intention.
Now that she's very limited on the amount of monitors she's attached to, I have wanted to know about walking around with her in the hospital unit. After the feeling of a walk to the x-ray room, I was hooked. Bryer liked movement and being carried around before she went to the hospital and I can't help but think she would like it now. Even when babies are in utero, they get used to the movement patterns of their Moms. The physical therapist has been working with us to provide sensations Bryer would have felt from the womb - pressing on her hands and feet; deep, constant pressure as she's wrapped up in her blanket; they haven't mentioned my heartbeat and voice, but naturally that's sure to be beneficial. After a little pep talk to myself justifying a walk all in the name of Bryer's development, I got up enough courage to walk out to the nurse's station and ask if I could walk around with her. Both nurses just stared blankly at me, acting like they were completely caught off guard. Then they looked at each other, and decided that they needed to talk to the doctors first. I wanted to crawl in a hole. I wasn't asking to unhook my baby and take her home. I was just asking to walk around with her within the pediatrics unit - one hallway that goes in a circle around the nurse's station. As much as I would have liked to pack up right then, bundle up my baby, and escape with her from all the judgements and accusations and criticizing, it was not the best for Bryer. I walked back to my room, ready to say a prayer and have another pep talk with myself that I can withstand this.
None of this makes any sense. If they think I am a threat, why have they allowed me to sit by her bedside for the last 10 days? Why do they let me sleep in her room? Why am I allowed to shut the door and be with her alone, only for a nurse to check on us every 4 hours to take her vitals and weigh her wet diapers? I'm not complaining, but just frustrated with the double standards. Emotionally, I will be strong for her, if not for myself. She's needs a strong momma to stand by her and protect her. However this is working for me to be with her, it must be with God's help.
They turned Bryer's feeding tube off this morning (that's the tube in her nose in the top picture). She took a 2 ounce bottle, which according to the nurses was amazing. Then she took 3 ounces a few hours later - deemed crazy. Maybe I'm not fully understanding what a miracle this is that she's bottle feeding, by the reaction from the nurses. 4 ounces was pushing it, but she did it this evening! Our feeding ritual takes double time for me since I feed her and then after she's asleep, I stay up longer to pump more milk to replenish the stockpile in the freezer. I have gained a new understanding and appreciation for those moms who have to go back to work, but pump anyway. And I understand how some moms choose not to and give formula. I have faith that someday soon she'll have the strength and stamina to nurse and I will appreciate cutting feeding time in half...And I won't have to wear ridiculous plastic gloves to feed my own baby.
Most days are spent pumping, rocking, feeding, talking to Jason and our kids on the phone, and making myself eat when the hospital staff brings food. I still don't have an appetite, but I will eat to make milk for Bryer. My mom brought a cot for me and set it up at the foot of Bryer's bed. It's better than the chair/bed I was scrunched onto.
They also put the EEG back on Bryer's little head. The purplish marks haven't even healed from the last time it was on (you can see them in the first picture), but they needed to monitor any seizure activity, just for 20 minutes. There were a couple spikes, but nothing to be worried about. The tech said it looked better than she's ever seen it, but wasn't allowed to report on the results, so she added, "You didn't hear that from me!" Bryer weighs in at a tiny 11 pounds, 11 ounces as she approaches her 3-month-old mark.
Jason and I have had to take more time out today find another attorney. We've been through 2, but we have been advised that we need an attorney with a strong background dealing with criminal cases (before it was for family law). It's all confusing and more time is wasted while I have to leave Bryer to interview attorneys. My mom and my grandma were here with Bryer today while I had to leave. The physical therapist came to work with her. We try to keep a sense of humor, and refer to these appointments as Bryer's personal trainer; her own Gold's Gym; yoga practice. I don't like being gone and missing these things with her. I want to soak it all in, to learn and understand what I can do to help her.
A social worker from Health and Welfare also came by today while I wasn't there. It makes me sick to my stomach that she was allowed to see my baby without me being there. This is the exact reason I felt so strongly about having a family member there when I'm not. I feel violated knowing she has access to Bryer. This is the same case worker several of my in-laws have been in contact with. They have been very proactive about making sure legally everything is being taken care of so that Bryer can be released from the hospital into the care of family, if not with Jason and I. The verbal agreement with the Prosecuting Attorney stands that our kids will be questioned by abuse professionals and if everything checks out, then we can take them all home. Until then, they will stay with family and be 'supervised' when Jason and I are around. Bryer was included in that original paperwork when all 5 of them were declared in 'Eminent Danger,' so we just want to make sure we have all bases covered. Despite my in-laws being proactive, the Health and Welfare workers seem annoyed with them. My brother-in-law was instructed not to call anymore and that there was nothing he could do to be pre-qualified to have Bryer in their home. My mom was polite to the worker that came by the hospital today. The social worker said she was just putting a face with a name and came to see Bryer. She informed my mom that Health and Welfare are not the evil people everyone thinks they are and they strongly believe in keeping families together. My mom told her that was comforting to know.
Things are getting strange, but I can't exactly put my finger on it. With the case worker coming while I wasn't there, all the attorney shopping, dealing with the nurses and doctors, it's just a lot to take in, especially on top of Bryer's recovery and caring for her. I find peace at the end of the day when I can talk to my kids on the phone before bed, sit and rock my baby, and escape to my thoughts. I still feel a sincere, close presence of God here, right in the middle of all this chaos. In the middle of the day when things are crazy it's harder to feel, but as each day winds down, that feeling is so strong. So comforting. So 'hit-the-spot' good that I know He has great confidence in me. I used to have a sticky note on my bathroom mirror that said, "Be the kind of woman that when you wake up in the morning, Satan says, "Oh crap! She's awake again!" At the end of the day, that's the confidence I have surging through my body. We can do this with His help.
Now that she's very limited on the amount of monitors she's attached to, I have wanted to know about walking around with her in the hospital unit. After the feeling of a walk to the x-ray room, I was hooked. Bryer liked movement and being carried around before she went to the hospital and I can't help but think she would like it now. Even when babies are in utero, they get used to the movement patterns of their Moms. The physical therapist has been working with us to provide sensations Bryer would have felt from the womb - pressing on her hands and feet; deep, constant pressure as she's wrapped up in her blanket; they haven't mentioned my heartbeat and voice, but naturally that's sure to be beneficial. After a little pep talk to myself justifying a walk all in the name of Bryer's development, I got up enough courage to walk out to the nurse's station and ask if I could walk around with her. Both nurses just stared blankly at me, acting like they were completely caught off guard. Then they looked at each other, and decided that they needed to talk to the doctors first. I wanted to crawl in a hole. I wasn't asking to unhook my baby and take her home. I was just asking to walk around with her within the pediatrics unit - one hallway that goes in a circle around the nurse's station. As much as I would have liked to pack up right then, bundle up my baby, and escape with her from all the judgements and accusations and criticizing, it was not the best for Bryer. I walked back to my room, ready to say a prayer and have another pep talk with myself that I can withstand this.
None of this makes any sense. If they think I am a threat, why have they allowed me to sit by her bedside for the last 10 days? Why do they let me sleep in her room? Why am I allowed to shut the door and be with her alone, only for a nurse to check on us every 4 hours to take her vitals and weigh her wet diapers? I'm not complaining, but just frustrated with the double standards. Emotionally, I will be strong for her, if not for myself. She's needs a strong momma to stand by her and protect her. However this is working for me to be with her, it must be with God's help.
They turned Bryer's feeding tube off this morning (that's the tube in her nose in the top picture). She took a 2 ounce bottle, which according to the nurses was amazing. Then she took 3 ounces a few hours later - deemed crazy. Maybe I'm not fully understanding what a miracle this is that she's bottle feeding, by the reaction from the nurses. 4 ounces was pushing it, but she did it this evening! Our feeding ritual takes double time for me since I feed her and then after she's asleep, I stay up longer to pump more milk to replenish the stockpile in the freezer. I have gained a new understanding and appreciation for those moms who have to go back to work, but pump anyway. And I understand how some moms choose not to and give formula. I have faith that someday soon she'll have the strength and stamina to nurse and I will appreciate cutting feeding time in half...And I won't have to wear ridiculous plastic gloves to feed my own baby.
Most days are spent pumping, rocking, feeding, talking to Jason and our kids on the phone, and making myself eat when the hospital staff brings food. I still don't have an appetite, but I will eat to make milk for Bryer. My mom brought a cot for me and set it up at the foot of Bryer's bed. It's better than the chair/bed I was scrunched onto.
They also put the EEG back on Bryer's little head. The purplish marks haven't even healed from the last time it was on (you can see them in the first picture), but they needed to monitor any seizure activity, just for 20 minutes. There were a couple spikes, but nothing to be worried about. The tech said it looked better than she's ever seen it, but wasn't allowed to report on the results, so she added, "You didn't hear that from me!" Bryer weighs in at a tiny 11 pounds, 11 ounces as she approaches her 3-month-old mark.
Jason and I have had to take more time out today find another attorney. We've been through 2, but we have been advised that we need an attorney with a strong background dealing with criminal cases (before it was for family law). It's all confusing and more time is wasted while I have to leave Bryer to interview attorneys. My mom and my grandma were here with Bryer today while I had to leave. The physical therapist came to work with her. We try to keep a sense of humor, and refer to these appointments as Bryer's personal trainer; her own Gold's Gym; yoga practice. I don't like being gone and missing these things with her. I want to soak it all in, to learn and understand what I can do to help her.
A social worker from Health and Welfare also came by today while I wasn't there. It makes me sick to my stomach that she was allowed to see my baby without me being there. This is the exact reason I felt so strongly about having a family member there when I'm not. I feel violated knowing she has access to Bryer. This is the same case worker several of my in-laws have been in contact with. They have been very proactive about making sure legally everything is being taken care of so that Bryer can be released from the hospital into the care of family, if not with Jason and I. The verbal agreement with the Prosecuting Attorney stands that our kids will be questioned by abuse professionals and if everything checks out, then we can take them all home. Until then, they will stay with family and be 'supervised' when Jason and I are around. Bryer was included in that original paperwork when all 5 of them were declared in 'Eminent Danger,' so we just want to make sure we have all bases covered. Despite my in-laws being proactive, the Health and Welfare workers seem annoyed with them. My brother-in-law was instructed not to call anymore and that there was nothing he could do to be pre-qualified to have Bryer in their home. My mom was polite to the worker that came by the hospital today. The social worker said she was just putting a face with a name and came to see Bryer. She informed my mom that Health and Welfare are not the evil people everyone thinks they are and they strongly believe in keeping families together. My mom told her that was comforting to know.
Things are getting strange, but I can't exactly put my finger on it. With the case worker coming while I wasn't there, all the attorney shopping, dealing with the nurses and doctors, it's just a lot to take in, especially on top of Bryer's recovery and caring for her. I find peace at the end of the day when I can talk to my kids on the phone before bed, sit and rock my baby, and escape to my thoughts. I still feel a sincere, close presence of God here, right in the middle of all this chaos. In the middle of the day when things are crazy it's harder to feel, but as each day winds down, that feeling is so strong. So comforting. So 'hit-the-spot' good that I know He has great confidence in me. I used to have a sticky note on my bathroom mirror that said, "Be the kind of woman that when you wake up in the morning, Satan says, "Oh crap! She's awake again!" At the end of the day, that's the confidence I have surging through my body. We can do this with His help.
Sunday, March 2, 2014
#11 - Journal Entry from December 28, 2010
Today was the day I've been waiting for. I got to hold my baby girl! They have moved her out of intensive care and she now has her own room in the regular pediatric unit. There is a comfy rocking chair next to her hospital bed and one of those uncomfortable chair/beds on the other side. It's not home, but it's one step closer! She snuggled in and melted right into my arms like she had never left. I can't describe the feeling with only a pen and paper. My heart is full and complete again. I can't help but think that the scent of my shirt by her for the past week has helped tide her over until she could really feel that close to me. She feels like a big newborn in my arms, swaddled in blankets. She still has her feeding tube and a couple monitors just for precautionary reasons, but other than that she is cord-free! No warmer above her bed. No breathing tube. No EEG probes attached to her head. In fact, they have been replaced by a pink bow, which kind of goes with her painted toe nails hanging out of her blanket with one of the monitors on. She is a tiny ball of huge miracles! We taped her picture back up on her new bed. The one with our themed quote on it...
With this move to the new unit I will be sleeping in the same room as her since she doesn't have her one-on-one nurse anymore. If we need something one of the nurses from the nurses station outside her door will come in to help. That's a big shift from having her own nurse right outside her sliding glass door watching her so closely. It's comforting for me to have more time with Bryer and respond to her as my instincts tell me instead of relying on a nurse or doctor to tell me what she needs. I've been forced to put my 'mother's intuition' on the back burner for long enough.
Bryer had her suck and swallow study done today. I was able to carry her down to where they do the x-ray. It's the first place I have walked with her in over a week. It's such a good feeling to just go for a normal little walk. Who knew that would feel so great?!
The hospital therapist put Bryer in a chair that held her propped up. It looked like such an un-natural way for her first bottle feeding, but I understood the purpose. They had a bottle full of barium so they could watch the liquid moving on the x-ray as she sucked. My mom and I stood in another room to watch the monitors. The doctors had told the nurse they didn't think she would pass. There's a lot to concentrate on with the suck, swallow, and breathing synchronized all at the same time. They fully expected her to aspirate into her lungs, which could cause issues with breathing or pneumonia later if it is left unchecked. I was reminded that as we sat around the table of doctors a week ago they said there was a chance she could be in a very compromised state the rest of her life, including the possibly of a feeding tube. Obviously they don't know what a miracle baby we have because she passed her test wonderfully! Her mouth did get tired quickly and then she just bit on the nipple, but she kept a good rhythm of suck, swallow, breath. One more big step for my sweet baby girl! The occupational therapist came in today and showed me some way to stretch out her mouth so we can slowly begin to feed her with a bottle. She is still taking my breast milk through her feeding tube so it's taking a lot of my time to pump and then hold her and rock her since it doesn't all happen at the same time. Someday soon... Someday soon...
Always in our minds is what happened that Sunday when I found Bryer not breathing. My time and internet use is limited since Bryer is getting more interactive with us now. The internet seems to be inundated with articles and reading on false claims of Shaken Baby Syndrome. Our extended families have started doing research also. I don't understand it all, but I've started making a list of other possibilities. It makes me sick to my stomach as I read about all these other sad stories, so I can only handle a little at a time. I don't even like to say or write the words Shaken Baby Syndrome, so from now on I will just call it SBS. You'd think that in a hospital full of doctors I could ask questions of what I am finding, but it's scary to me to even talk to them. I already know what they think. They are not interested in the truth or helping me find the cause. They feel they already have, and may fully use it against me. In our state criminal charges can be filed anytime within 5 years of the alleged crime. We have also learned that a case with Health and Welfare is completely separate from a criminal case. They could choose to file criminal charges on me at anytime.
Today I passed by a TV on my way to the bathroom. I caught a glimpse of a guy's mug shot with the newscaster reporting on the allegations. I looked at the guy's picture long enough to see his long oily hair, rough skin, tattooed neck, and a couple facial piercings. I try to be non-judgmental, but sometimes thoughts come before I realize I'm judging. For the first time, the thought entered my mind while seeing someone like this on the news, "What if he's not really guilty?"
"We are not human beings having a spiritual experience.
We are spiritual beings having a human experience."
With this move to the new unit I will be sleeping in the same room as her since she doesn't have her one-on-one nurse anymore. If we need something one of the nurses from the nurses station outside her door will come in to help. That's a big shift from having her own nurse right outside her sliding glass door watching her so closely. It's comforting for me to have more time with Bryer and respond to her as my instincts tell me instead of relying on a nurse or doctor to tell me what she needs. I've been forced to put my 'mother's intuition' on the back burner for long enough.
Bryer had her suck and swallow study done today. I was able to carry her down to where they do the x-ray. It's the first place I have walked with her in over a week. It's such a good feeling to just go for a normal little walk. Who knew that would feel so great?!
The hospital therapist put Bryer in a chair that held her propped up. It looked like such an un-natural way for her first bottle feeding, but I understood the purpose. They had a bottle full of barium so they could watch the liquid moving on the x-ray as she sucked. My mom and I stood in another room to watch the monitors. The doctors had told the nurse they didn't think she would pass. There's a lot to concentrate on with the suck, swallow, and breathing synchronized all at the same time. They fully expected her to aspirate into her lungs, which could cause issues with breathing or pneumonia later if it is left unchecked. I was reminded that as we sat around the table of doctors a week ago they said there was a chance she could be in a very compromised state the rest of her life, including the possibly of a feeding tube. Obviously they don't know what a miracle baby we have because she passed her test wonderfully! Her mouth did get tired quickly and then she just bit on the nipple, but she kept a good rhythm of suck, swallow, breath. One more big step for my sweet baby girl! The occupational therapist came in today and showed me some way to stretch out her mouth so we can slowly begin to feed her with a bottle. She is still taking my breast milk through her feeding tube so it's taking a lot of my time to pump and then hold her and rock her since it doesn't all happen at the same time. Someday soon... Someday soon...
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| Here's a side view of her sucking on the barium bottle (the black in the upper left) |
Jason and I are still using the sleep room to keep our things and for the occasional night that Jason stays at the hospital. Now that Bryer is making such great improvements he's able to spend more time with our 4 older kids. It's such a blessing for his job to be as flexible as it has been. I don't know how else he could have taken almost a week and a half off work on such short notice. His business partner has been a great support for our family and has encouraged Jason to just come back as he feels our family is ready. I am thankful to have a husband that takes care of that side of things while I care for Bryer and her recovery.
Always in our minds is what happened that Sunday when I found Bryer not breathing. My time and internet use is limited since Bryer is getting more interactive with us now. The internet seems to be inundated with articles and reading on false claims of Shaken Baby Syndrome. Our extended families have started doing research also. I don't understand it all, but I've started making a list of other possibilities. It makes me sick to my stomach as I read about all these other sad stories, so I can only handle a little at a time. I don't even like to say or write the words Shaken Baby Syndrome, so from now on I will just call it SBS. You'd think that in a hospital full of doctors I could ask questions of what I am finding, but it's scary to me to even talk to them. I already know what they think. They are not interested in the truth or helping me find the cause. They feel they already have, and may fully use it against me. In our state criminal charges can be filed anytime within 5 years of the alleged crime. We have also learned that a case with Health and Welfare is completely separate from a criminal case. They could choose to file criminal charges on me at anytime.
Today I passed by a TV on my way to the bathroom. I caught a glimpse of a guy's mug shot with the newscaster reporting on the allegations. I looked at the guy's picture long enough to see his long oily hair, rough skin, tattooed neck, and a couple facial piercings. I try to be non-judgmental, but sometimes thoughts come before I realize I'm judging. For the first time, the thought entered my mind while seeing someone like this on the news, "What if he's not really guilty?"
Sunday, February 23, 2014
#10 - Journal Entry from December 26 and 27, 2010
December 26, 2010
Christmas is contagious. You can't help but feel a little better, want to serve a little more, be nicer in the moment when it's Christmastime. I hoped that the feeling wouldn't leave now that it's the day after. I'm glad no one told Bryer that Christmas is over because she has continued to progress just the same. They took her feeding tube out for a while, but they need to do a swallow study to make sure she's swallowing correctly before they allow her to take a bottle. I had no idea the muscles and nerve endings used in the mouth just to suck. It's a miracle that most babies are born with this reflex! The nurses also worry that Bryer won't have enough coordination to suck, swallow, and breath all at the same time. They put the feeding tube back in until the swallow study could be done. She got her catheter out, but they still weigh her diapers. One less thing to be hooked up to!
She opened her eyes quite a bit today and will track a little with her eyes following an object or a penlight. This is such a huge blessing since there was so much retinal bleeding in her eye exam. It means she can see and that what she sees through her eyes is being interpreted into that part of her brain! I had a couple of glimpses where I hoped she could see my face and recognize me. She doesn't show expression, so I don't know what she's thinking or focusing on. The doctors thought maybe I could hold her today, but that didn't happen. Maybe tomorrow. I try hard not to get my hopes up, but I'm so excited for her little body to rest in my arms! Until then we will keep up the quiet singing and reading to her. She gets worn out quickly.
Mandy and I have been texting back and forth. She asked if there was anything I needed her to do. I asked her for one thing - that she would keep our pew warm at church until we could get back. I told her about the empty-nest couple that sits behind us that would help with her kids if she needed. I reminded her that church with kids might be hard, but it is always worth the effort. I asked her to try to be still and just feel the spirit there. One of her last texts to me said, "You are such an inspiration to me. I used to feel intimidated by you, but with all the praying I have done for your family, I know you are confident and I want to be a lot more like you. I am ready for the commitment. You are such a great mom and wife." I sobbed as I read those words. She was intimidated by me?! I try to keep my kids quiet at church, I try to teach strong moral standards, I look for those around us that need help. I never thought of that as being intimidating. Mandy, in fact, was one of those I tried to get to know and reach out to. I felt sad that she viewed me as intimidating. The Lord was using our situation to bring Mandy back to church, along with her kids. He was also using it to change my perspective. My pleading prayer tonight was that God would somehow help her kids be good so that Mandy could sit and feel the spirit; somehow feel rejuvenated. She so desperately needed her cup full this first time back!
Jason and I have interviewed more attorneys in the past several days and decided on a different attorney that deals with Family Law - these cases of children in the foster care system. Our last attorney we needed quickly before the polygraph. His specialty wasn't family law. This new attorney will go with us to our hearing tomorrow.
December 27, 2010
Mandy texted me this morning and said, "Church was amazing. My kids were so good, I couldn't believe it. I have so much to tell you, but it can wait until things are better." I said a silent prayer of thanks that Mandy's spirit was filled. If Bryer's mission is to bring more people to Christ, then I have to fight to maintain that mindset. And it is a fight. I have to remember that no matter how hard it gets for me, no one is exempt from feeling Christ-like love. With my own heart so humbled, it seems to be easier to be tender to those around me. It reminds me of the scripture in Romans that asks if God be for us, then who can be against us? It's hard and I struggle with it, but if it were not for a specific purpose, then why would He let this happen?
Bryer was awake a lot this morning. I was so thankful for that time with her before we had to drive back home 2 hours for our Shelter Care Hearing. I was really hoping to hold her before we had to leave. I needed an extra oomph before we left, but I didn't get to hold her. We had expected her EEG to come off to give her head a rest from all the little probes on it, but that didn't happen either. She isn't having any seizures anymore, but some spikes show on the monitor.
They are wanting to see what she does with something in her mouth to see if she still has the sucking reflex that she should. They tried to give her a binky and she just bit on it. The good news is that she is maintaining her own body temperature now, so they turned the warmer off above her bed and swaddled her tight in a blanket. She looks so comfy now, like a large newborn. Another thing to check off the list that she is doing for herself and one less thing to be plugged into! I needed that progress that she showed before I left for the day. My mom sat with Bryer again while Jason and I had to be gone.
Jason and I drove 2 hours back to our little town for the Shelter Care Hearing. When we got to the courthouse we weren't on the docket to be seen. I tried not to get frustrated. I was sure it was just a mistake. After asking some questions, we learned that over the Christmas holiday the paperwork never got filed. The prosecuting attorney hadn't heard of our case and there wasn't a judge available! My heart hurt. I was sacrificing time away from my baby and other 4 kids to drive to a hearing that wasn't even scheduled. Where is the law that states this hearing should be held within 3 days? Before I let myself get worked up about the legalities, I tried to give them the benefit of the doubt. I really did. It was the Christmas season after all. But these are my children! They are hanging in the balance of Health and Welfare. If the social worker gets any false impressions, they could be moved to another foster care home or cut off from our visitations at any point. It's a hard thing to put my faith in elected officials and a government system that has taken our kids from a very safe, loving home. My only comfort is knowing that this is the plan we put in place months ago in case Jason and I were to die. The kids are with Jason's parents. That's the way God wanted it to be and we followed those promptings.
When I was playing college softball, my coach lectured to us about "controllable and uncontrollables." At the time she related to a bad call from the umpire or the other team's bad sportsmanship. Those were uncontrollable outcomes. Controlables were things like how we reacted after we made a bad play, how we could shake off a bad call, how to improve ourselves. I found myself applying that hard and fast line of what was a controllable today, in my situation now. I could choose to get mad, to get angry, to get frustrated. Or I could make the conscience choice - and it had to be conscience - to see it how God saw it. He prepared us and we had obeyed. Our older kids were exactly where they should be according to that plan. I have to have faith in that plan and know that He has things taken care of, however wrong it seems to be to me. He knows us and our situation. I feel like we are in a maze and can only see the choice to turn right or left. He sees it from the top and although turning left doesn't make any sense to me, He knows the 'when and why' that we don't understand. Maybe turning left means we get out of this whole situation quicker and smoother.
The prosecutor's secretary wasn't in and he didn't know how to turn on his computer. Whew. Deep breath. Really, it's just a computer. Give him the benefit of the doubt. I stretched my patience beyond what I thought I could be stretched. We waited. The prosecutor decided to hand-write an agreement. We waited some more. He came out and said he didn't know how to word it or what it should say. (Please tell me I exercised my right to vote at the last election and did not vote for him.) I was at a loss as much as he was, but he was an elected official. He was being paid to do this job. I had never been in this situation. I just wanted my kids back. We finally came to a verbal agreement. All five kids would be 'ours' (not in the custody of Health and Welfare), and the older four would stay with Jason's parents and we wouldn't take them or be left unattended with them under one condition. The prosecutor requested our older 4 be interviewed by child-abuse professionals. He wanted to make sure we were safe parents for them. (The thought made my want to roll my eyes, but I didn't. I reminded myself this is just another hoop to jump through.) This was actually great news at first. Early on we had asked the child abuse doctor about interviewing our two younger kids since they were in the house the day I found Bryer not breathing. They would know I wasn't frustrated or yelling or whatever state the doctors thought I was in. He had put it off and avoided the option and now over a week had gone by. Having a 2 and 4 year old remember that far back was very unlikely. Jason and I live with integrity so if we say we will or won't do something, that's what it will be, so at first thought, this would be an easy verbal agreement to uphold. I had no question about our home or the safety of our children. It just reminded me of something from Little House on the Prairie with a handshake and everyone was expected to keep their end of the bargain.
We counseled with our new attorney. He explained that it makes him very nervous to have kids interviewed by these kinds of professionals. He said that you just never know how a kid interprets something or what they will say. He told us they could ask leading questions to get our kids to say something they wouldn't normally say. He asked if there was anything in our home that our kids would misinterpret - yelling, hitting, fighting, arguing, punishing them for something they did that was wrong. Jason and I agreed that there wasn't anything we would hide or that our kids would consider abuse. There was the occasional sibling vs. Dad wrestling match, but that was playing. Would the professionals read something else into that? There were times I would raise my voice over two of the kids arguing or for getting out of bed for the 10th time. Would that be considered verbal abuse in the eyes of a professional looking for child abuse?
To be sure, Jason and I asked to visit alone. As our attorney left the room, we both knew this was something we needed to pray about. Would these professionals try to twist our kids' words, our actions, our family atmosphere into something that it wasn't? Should we even put our kids in that situation to have them examined? In that room of the law library, lined with books of worldly knowledge of the laws of our state, Jason and I pulled a chair away from the table and knelt down at it. We asked God for His help. As Jason prayed aloud the thought came to me, "By their fruits shall you know them." At the end of the prayer, I felt the thought again. "By their fruits shall you know them." In the scriptures it refers to a tree being the parent and the fruit as the child. This thought made sense for our situation. I have had revelation before, but usually it comes as a thought or a warm feeling. Very few times in my life have actual words come to me, but this was one of those times. As we talked it over, we came to the conclusion that we were comfortable with exposing our kids to show the kind of people we are. The professionals would know the kind of parents we are through our kids. It's not ever a position I would want to put our kids in, but God knows they will be honest, good representations of us and our parenting. Today, I am thankful to have the tools needed to teach my children in all that they do.
It's a technicality really, but it feels good to know that Health and Welfare is out of the picture according to this verbal agreement. We had started today with our kids in state custody and trying not to be frustrated that the paperwork wasn't filed and the hearing scheduled. We walked out with our kids technically not in custody. I can't explain it any other way than a tender mercy from God. Now we await our kids' interviews and Bryer's progress.
Christmas is contagious. You can't help but feel a little better, want to serve a little more, be nicer in the moment when it's Christmastime. I hoped that the feeling wouldn't leave now that it's the day after. I'm glad no one told Bryer that Christmas is over because she has continued to progress just the same. They took her feeding tube out for a while, but they need to do a swallow study to make sure she's swallowing correctly before they allow her to take a bottle. I had no idea the muscles and nerve endings used in the mouth just to suck. It's a miracle that most babies are born with this reflex! The nurses also worry that Bryer won't have enough coordination to suck, swallow, and breath all at the same time. They put the feeding tube back in until the swallow study could be done. She got her catheter out, but they still weigh her diapers. One less thing to be hooked up to!
She opened her eyes quite a bit today and will track a little with her eyes following an object or a penlight. This is such a huge blessing since there was so much retinal bleeding in her eye exam. It means she can see and that what she sees through her eyes is being interpreted into that part of her brain! I had a couple of glimpses where I hoped she could see my face and recognize me. She doesn't show expression, so I don't know what she's thinking or focusing on. The doctors thought maybe I could hold her today, but that didn't happen. Maybe tomorrow. I try hard not to get my hopes up, but I'm so excited for her little body to rest in my arms! Until then we will keep up the quiet singing and reading to her. She gets worn out quickly.
Mandy and I have been texting back and forth. She asked if there was anything I needed her to do. I asked her for one thing - that she would keep our pew warm at church until we could get back. I told her about the empty-nest couple that sits behind us that would help with her kids if she needed. I reminded her that church with kids might be hard, but it is always worth the effort. I asked her to try to be still and just feel the spirit there. One of her last texts to me said, "You are such an inspiration to me. I used to feel intimidated by you, but with all the praying I have done for your family, I know you are confident and I want to be a lot more like you. I am ready for the commitment. You are such a great mom and wife." I sobbed as I read those words. She was intimidated by me?! I try to keep my kids quiet at church, I try to teach strong moral standards, I look for those around us that need help. I never thought of that as being intimidating. Mandy, in fact, was one of those I tried to get to know and reach out to. I felt sad that she viewed me as intimidating. The Lord was using our situation to bring Mandy back to church, along with her kids. He was also using it to change my perspective. My pleading prayer tonight was that God would somehow help her kids be good so that Mandy could sit and feel the spirit; somehow feel rejuvenated. She so desperately needed her cup full this first time back!
Jason and I have interviewed more attorneys in the past several days and decided on a different attorney that deals with Family Law - these cases of children in the foster care system. Our last attorney we needed quickly before the polygraph. His specialty wasn't family law. This new attorney will go with us to our hearing tomorrow.
December 27, 2010
Mandy texted me this morning and said, "Church was amazing. My kids were so good, I couldn't believe it. I have so much to tell you, but it can wait until things are better." I said a silent prayer of thanks that Mandy's spirit was filled. If Bryer's mission is to bring more people to Christ, then I have to fight to maintain that mindset. And it is a fight. I have to remember that no matter how hard it gets for me, no one is exempt from feeling Christ-like love. With my own heart so humbled, it seems to be easier to be tender to those around me. It reminds me of the scripture in Romans that asks if God be for us, then who can be against us? It's hard and I struggle with it, but if it were not for a specific purpose, then why would He let this happen?
Bryer was awake a lot this morning. I was so thankful for that time with her before we had to drive back home 2 hours for our Shelter Care Hearing. I was really hoping to hold her before we had to leave. I needed an extra oomph before we left, but I didn't get to hold her. We had expected her EEG to come off to give her head a rest from all the little probes on it, but that didn't happen either. She isn't having any seizures anymore, but some spikes show on the monitor.
They are wanting to see what she does with something in her mouth to see if she still has the sucking reflex that she should. They tried to give her a binky and she just bit on it. The good news is that she is maintaining her own body temperature now, so they turned the warmer off above her bed and swaddled her tight in a blanket. She looks so comfy now, like a large newborn. Another thing to check off the list that she is doing for herself and one less thing to be plugged into! I needed that progress that she showed before I left for the day. My mom sat with Bryer again while Jason and I had to be gone.
Jason and I drove 2 hours back to our little town for the Shelter Care Hearing. When we got to the courthouse we weren't on the docket to be seen. I tried not to get frustrated. I was sure it was just a mistake. After asking some questions, we learned that over the Christmas holiday the paperwork never got filed. The prosecuting attorney hadn't heard of our case and there wasn't a judge available! My heart hurt. I was sacrificing time away from my baby and other 4 kids to drive to a hearing that wasn't even scheduled. Where is the law that states this hearing should be held within 3 days? Before I let myself get worked up about the legalities, I tried to give them the benefit of the doubt. I really did. It was the Christmas season after all. But these are my children! They are hanging in the balance of Health and Welfare. If the social worker gets any false impressions, they could be moved to another foster care home or cut off from our visitations at any point. It's a hard thing to put my faith in elected officials and a government system that has taken our kids from a very safe, loving home. My only comfort is knowing that this is the plan we put in place months ago in case Jason and I were to die. The kids are with Jason's parents. That's the way God wanted it to be and we followed those promptings.
When I was playing college softball, my coach lectured to us about "controllable and uncontrollables." At the time she related to a bad call from the umpire or the other team's bad sportsmanship. Those were uncontrollable outcomes. Controlables were things like how we reacted after we made a bad play, how we could shake off a bad call, how to improve ourselves. I found myself applying that hard and fast line of what was a controllable today, in my situation now. I could choose to get mad, to get angry, to get frustrated. Or I could make the conscience choice - and it had to be conscience - to see it how God saw it. He prepared us and we had obeyed. Our older kids were exactly where they should be according to that plan. I have to have faith in that plan and know that He has things taken care of, however wrong it seems to be to me. He knows us and our situation. I feel like we are in a maze and can only see the choice to turn right or left. He sees it from the top and although turning left doesn't make any sense to me, He knows the 'when and why' that we don't understand. Maybe turning left means we get out of this whole situation quicker and smoother.
The prosecutor's secretary wasn't in and he didn't know how to turn on his computer. Whew. Deep breath. Really, it's just a computer. Give him the benefit of the doubt. I stretched my patience beyond what I thought I could be stretched. We waited. The prosecutor decided to hand-write an agreement. We waited some more. He came out and said he didn't know how to word it or what it should say. (Please tell me I exercised my right to vote at the last election and did not vote for him.) I was at a loss as much as he was, but he was an elected official. He was being paid to do this job. I had never been in this situation. I just wanted my kids back. We finally came to a verbal agreement. All five kids would be 'ours' (not in the custody of Health and Welfare), and the older four would stay with Jason's parents and we wouldn't take them or be left unattended with them under one condition. The prosecutor requested our older 4 be interviewed by child-abuse professionals. He wanted to make sure we were safe parents for them. (The thought made my want to roll my eyes, but I didn't. I reminded myself this is just another hoop to jump through.) This was actually great news at first. Early on we had asked the child abuse doctor about interviewing our two younger kids since they were in the house the day I found Bryer not breathing. They would know I wasn't frustrated or yelling or whatever state the doctors thought I was in. He had put it off and avoided the option and now over a week had gone by. Having a 2 and 4 year old remember that far back was very unlikely. Jason and I live with integrity so if we say we will or won't do something, that's what it will be, so at first thought, this would be an easy verbal agreement to uphold. I had no question about our home or the safety of our children. It just reminded me of something from Little House on the Prairie with a handshake and everyone was expected to keep their end of the bargain.
We counseled with our new attorney. He explained that it makes him very nervous to have kids interviewed by these kinds of professionals. He said that you just never know how a kid interprets something or what they will say. He told us they could ask leading questions to get our kids to say something they wouldn't normally say. He asked if there was anything in our home that our kids would misinterpret - yelling, hitting, fighting, arguing, punishing them for something they did that was wrong. Jason and I agreed that there wasn't anything we would hide or that our kids would consider abuse. There was the occasional sibling vs. Dad wrestling match, but that was playing. Would the professionals read something else into that? There were times I would raise my voice over two of the kids arguing or for getting out of bed for the 10th time. Would that be considered verbal abuse in the eyes of a professional looking for child abuse?
To be sure, Jason and I asked to visit alone. As our attorney left the room, we both knew this was something we needed to pray about. Would these professionals try to twist our kids' words, our actions, our family atmosphere into something that it wasn't? Should we even put our kids in that situation to have them examined? In that room of the law library, lined with books of worldly knowledge of the laws of our state, Jason and I pulled a chair away from the table and knelt down at it. We asked God for His help. As Jason prayed aloud the thought came to me, "By their fruits shall you know them." At the end of the prayer, I felt the thought again. "By their fruits shall you know them." In the scriptures it refers to a tree being the parent and the fruit as the child. This thought made sense for our situation. I have had revelation before, but usually it comes as a thought or a warm feeling. Very few times in my life have actual words come to me, but this was one of those times. As we talked it over, we came to the conclusion that we were comfortable with exposing our kids to show the kind of people we are. The professionals would know the kind of parents we are through our kids. It's not ever a position I would want to put our kids in, but God knows they will be honest, good representations of us and our parenting. Today, I am thankful to have the tools needed to teach my children in all that they do.
It's a technicality really, but it feels good to know that Health and Welfare is out of the picture according to this verbal agreement. We had started today with our kids in state custody and trying not to be frustrated that the paperwork wasn't filed and the hearing scheduled. We walked out with our kids technically not in custody. I can't explain it any other way than a tender mercy from God. Now we await our kids' interviews and Bryer's progress.
Sunday, February 16, 2014
#9 - Journal Entry from December 25, 2010
Jason and I spent some time with Bryer in the wee hours of the morning. It makes me want to cry to tell her 'Merry Christmas.' A baby's first Christmas should not be like this. She did open her eyes to little slits this morning though! It didn't last long and her poor little eyes are still so swollen, but she made her eyelids raise just enough to count it for her first waking up! It wasn't the sweet strengthening of 'my eyes meet her eyes' moment I was hoping for, but I will take any bit of reaction from her, especially it being Christmas morning! She went right back to sleep and my mom came to sit with her while we headed over to Jason's parents for when our kids woke up. I'm still not comfortable leaving her with just the doctors and nurses to watch her. They are strangers to me - and to her, so I am so thankful for those that sacrifice their time and sit with her when Jason and I leave. I hate to think of it as a blessing, but my mom has been off work after a surgery she had. The timing has been perfect for her role to just go and sit - a way for her to help while she is also recovering herself. I am so thankful for that specific timing and circumstances of things.
I touched Bryer softly to tell her good-bye before we left. I snuggled my shirt near her face so she could have my scent with her. I hugged my mom and then walked down the hall holding Jason's hand, just sobbing. I told him, "No one should ever have to leave their baby on Christmas morning." How can my heart be in two places at once? Our older kids are big enough to remember Christmas and need us there, but Bryer is so fragile right now it's hard to pull myself away from her. I feel so physically and emotionally torn each time I leave either place. Still in the back of my mind is always the thought that law enforcement could cut us off from either place at any time.
We got there in time to wake the kids up and see their excitement for their Santa gifts - including an outdoor basketball hoop that our 2 older boys wanted and flashlights that our 2 younger ones hoped for. I am so thankful for Jason's family pulling lots of loose ends together - the stockings, the Santa letter, and making the drive to our house to get the things I already bought. The kids laughed at the letter Santa left for them. They read that Hunter's practical joke of salt under the frosting was actually a treat for Rudolf - like a salt lick for him to munch on while Santa went to work. Again, there are no pictures of our morning. I soaked it all in with kids on my lap opening presents, filling up my spiritual cup with just being in the moment and not worrying about the camera. I probably wouldn't have been able to see the lens through my tears anyway. Jason and I received a letter from a family member, sending us to look for a hidden envelope in the house. It contained money for us to help pay for attorney's fees. I am so touched by all the little details that have been accounted for. It's not the amount of money that makes me tender, but the thoughtfulness of all those around us. It makes me wonder what I have done to be so blessed in the middle of all this heartache.
By late morning, Jason's siblings and their families showed up. His brother and wife had a baby boy just a month before Bryer. When they walked in I asked to hold him, something I have not been able to do with Bryer for a week. My arms ached for my own baby and my nephew was the closest thing. When I asked to hold him, I wasn't prepared for the flood of emotion his little 3 month old body would have over me. I held that baby boy and bawled as I swayed back and forth with him, my shoulders shaking with my sobs. He filled a need in my heart so deep and so great, it was an answer to prayer to fill my arms. Did God plan to send my nephew and Bryer to our family, so close in age, for this purpose? Did He know I would need another baby to fill the hole in my heart, even if it only brought relief for a short time? That relief was needed so badly for me emotionally and I felt temporarily consoled holding him. It brought a new wave of assurance for me to continue to be strong. Such a sweet little blessing exposed in that tiny baby boy!
As all Jason's siblings and families arrived, my mom called from the hospital to tell us the doctor took Bryer's breathing tube out! It's another Christmas miracle! She had been weaning down nicely, but I didn't expect to have them take it completely out already. I have so many mixed emotions since we weren't there at the hospital to see her progress through that, especially after waiting so long for even a little breakthrough. Just because I wasn't there, doesn't mean I don't want her to progress. Like I said, my heart aches to be in both places at once.
In the afternoon we went back to the hospital to be with Bryer. There was a wonderful family there serving a hot meal. They lost their little girl years ago, about the same time of year. As a family tradition they serve food to others that spend their Christmas at the hospital. It was so nice to visit with them and feel their sincerity and service. As we ate, I had a substantial thought, "Someday I want to be that person for someone else."
A few hours later I got a text from Mandy - the one growing her faith by praying for our family. Her nephew, about Bryer's age, was being admitted to this same hospital. The baby had come down with a bad case of croup. As soon as I got the room number from Mandy I went to visit with her sister, the mom of this baby. God sent me someone who appreciated a short visit, a hug, and to offer my prayers for their family. Right there in the middle of my own trial - to the same hospital, not far from where Bryer was staying, God knew I would feel better by serving. He didn't wait for my trial to pass or get easier. He allowed me to serve and provided the exact way to make it possible. My spirits were lifted and I felt I did some good in the world today. In another element, Mandy's text said she wished she could be there with her sister. Mandy couldn't get there in time, but God could use me. I don't know that I did as much good for that family as they did for me, just by allowing me to be there. It feels good to be an instrument in the Lord's hands. Somehow I feel that this is only the beginning of experiences maybe I could be a part of.
This afternoon the nurses were lightly touching each of Bryer's arms and legs to see if she would respond... and she did! She hasn't opened her eyes again since this morning, but her little extremities will pull back from the tickle they give her. I'm so impressed with this little fighter we have on our hands and feel so blessed to be her Mom. She has responded more to voices and singing today too - noted with a slight heart rate change and by watching the EEG monitor for brain activity. She is doing great breathing on her own... one more thing checked off the list of the things the doctors said may be a struggle. She is surpassing all their expectations one by one. She is still on 2 seizure meds and under the warmer to make sure she can maintain her own body temperature. That's one of those things I wouldn't even think of as one of our body's responsibilities, but her tiny frame is working so hard that we don't want her to waste energy trying to keep herself warm on top of everything else. They rotate her body from side lying to her back, and then to her other side. They are very careful when moving her - for the physical touch aspect, as well as trying not to bother all the monitors she's hooked up to. They have used a floppy, multicolored stuffed animal frog to prop her arm over as she lays on her side, or under a knee while she's on her back - however they situate her and make her look comfortable. She is surrounded by cards and pictures taped to her bed.
Another big step for her was the introduction of my breast milk! She's been getting the essential nutrients from a solution the doctors said would be easier on her body and not require so much energy from her digestive system. My breast milk is now being pumped through the feeding tube through her nose into her tummy. It's there and it's something of mine I can give her to help her be strong. When our touch and voices have to be so soft, it's comforting to know that full fledged, best-of-the-best, 100% home grown breast milk is now flowing through her digestive system and carrying all those nutrients to her other body systems. There's no holding back in that department. As healing as it may be to her body, it's also very healing for me to know that her body is accepting the power of it. I've been side by side with Bryer through this - pumping all hours of the night, in the car, near her bedside, wherever I can find a discrete place with a plug-in, just hoping that she would get to a point to be able to accept this only gift that I can give her, storing it up in the freezer for the right time. Now I know that all that effort is now where it was intended.
Our attorney has informed us that when Child Protective Services (CPS) is called in, they have 3 days to hold what they call a Shelter Care Hearing, to see if there is a significant reason for the children to be in the system. With the Christmas holiday and the weekend it will be longer than 3 days. We are scheduled to go to court for the hearing on the 27th. I realize that nothing has changed from what we would normally be doing - the 4 older kids are with Jason's parents and we are able to stay by Bryer's side. That is a huge blessing and a tender mercy straight from God! But, the fact that our kids are considered in foster care is very unsettling. We can't take them anywhere or be alone with them, which feels like we've been violated. At anytime, CPS could take away the 'visitation' we have with our kids for whatever reason. I'm ready for our hearing, but I am not looking forward to making the trip back home 2 hours away and be away from Bryer all day long. So far I have been torn between 2 places - Bryer's hospital room and our other kids. Now I will be torn between 3.
I touched Bryer softly to tell her good-bye before we left. I snuggled my shirt near her face so she could have my scent with her. I hugged my mom and then walked down the hall holding Jason's hand, just sobbing. I told him, "No one should ever have to leave their baby on Christmas morning." How can my heart be in two places at once? Our older kids are big enough to remember Christmas and need us there, but Bryer is so fragile right now it's hard to pull myself away from her. I feel so physically and emotionally torn each time I leave either place. Still in the back of my mind is always the thought that law enforcement could cut us off from either place at any time.
We got there in time to wake the kids up and see their excitement for their Santa gifts - including an outdoor basketball hoop that our 2 older boys wanted and flashlights that our 2 younger ones hoped for. I am so thankful for Jason's family pulling lots of loose ends together - the stockings, the Santa letter, and making the drive to our house to get the things I already bought. The kids laughed at the letter Santa left for them. They read that Hunter's practical joke of salt under the frosting was actually a treat for Rudolf - like a salt lick for him to munch on while Santa went to work. Again, there are no pictures of our morning. I soaked it all in with kids on my lap opening presents, filling up my spiritual cup with just being in the moment and not worrying about the camera. I probably wouldn't have been able to see the lens through my tears anyway. Jason and I received a letter from a family member, sending us to look for a hidden envelope in the house. It contained money for us to help pay for attorney's fees. I am so touched by all the little details that have been accounted for. It's not the amount of money that makes me tender, but the thoughtfulness of all those around us. It makes me wonder what I have done to be so blessed in the middle of all this heartache.
By late morning, Jason's siblings and their families showed up. His brother and wife had a baby boy just a month before Bryer. When they walked in I asked to hold him, something I have not been able to do with Bryer for a week. My arms ached for my own baby and my nephew was the closest thing. When I asked to hold him, I wasn't prepared for the flood of emotion his little 3 month old body would have over me. I held that baby boy and bawled as I swayed back and forth with him, my shoulders shaking with my sobs. He filled a need in my heart so deep and so great, it was an answer to prayer to fill my arms. Did God plan to send my nephew and Bryer to our family, so close in age, for this purpose? Did He know I would need another baby to fill the hole in my heart, even if it only brought relief for a short time? That relief was needed so badly for me emotionally and I felt temporarily consoled holding him. It brought a new wave of assurance for me to continue to be strong. Such a sweet little blessing exposed in that tiny baby boy!
As all Jason's siblings and families arrived, my mom called from the hospital to tell us the doctor took Bryer's breathing tube out! It's another Christmas miracle! She had been weaning down nicely, but I didn't expect to have them take it completely out already. I have so many mixed emotions since we weren't there at the hospital to see her progress through that, especially after waiting so long for even a little breakthrough. Just because I wasn't there, doesn't mean I don't want her to progress. Like I said, my heart aches to be in both places at once.
In the afternoon we went back to the hospital to be with Bryer. There was a wonderful family there serving a hot meal. They lost their little girl years ago, about the same time of year. As a family tradition they serve food to others that spend their Christmas at the hospital. It was so nice to visit with them and feel their sincerity and service. As we ate, I had a substantial thought, "Someday I want to be that person for someone else."
A few hours later I got a text from Mandy - the one growing her faith by praying for our family. Her nephew, about Bryer's age, was being admitted to this same hospital. The baby had come down with a bad case of croup. As soon as I got the room number from Mandy I went to visit with her sister, the mom of this baby. God sent me someone who appreciated a short visit, a hug, and to offer my prayers for their family. Right there in the middle of my own trial - to the same hospital, not far from where Bryer was staying, God knew I would feel better by serving. He didn't wait for my trial to pass or get easier. He allowed me to serve and provided the exact way to make it possible. My spirits were lifted and I felt I did some good in the world today. In another element, Mandy's text said she wished she could be there with her sister. Mandy couldn't get there in time, but God could use me. I don't know that I did as much good for that family as they did for me, just by allowing me to be there. It feels good to be an instrument in the Lord's hands. Somehow I feel that this is only the beginning of experiences maybe I could be a part of.
This afternoon the nurses were lightly touching each of Bryer's arms and legs to see if she would respond... and she did! She hasn't opened her eyes again since this morning, but her little extremities will pull back from the tickle they give her. I'm so impressed with this little fighter we have on our hands and feel so blessed to be her Mom. She has responded more to voices and singing today too - noted with a slight heart rate change and by watching the EEG monitor for brain activity. She is doing great breathing on her own... one more thing checked off the list of the things the doctors said may be a struggle. She is surpassing all their expectations one by one. She is still on 2 seizure meds and under the warmer to make sure she can maintain her own body temperature. That's one of those things I wouldn't even think of as one of our body's responsibilities, but her tiny frame is working so hard that we don't want her to waste energy trying to keep herself warm on top of everything else. They rotate her body from side lying to her back, and then to her other side. They are very careful when moving her - for the physical touch aspect, as well as trying not to bother all the monitors she's hooked up to. They have used a floppy, multicolored stuffed animal frog to prop her arm over as she lays on her side, or under a knee while she's on her back - however they situate her and make her look comfortable. She is surrounded by cards and pictures taped to her bed.
Another big step for her was the introduction of my breast milk! She's been getting the essential nutrients from a solution the doctors said would be easier on her body and not require so much energy from her digestive system. My breast milk is now being pumped through the feeding tube through her nose into her tummy. It's there and it's something of mine I can give her to help her be strong. When our touch and voices have to be so soft, it's comforting to know that full fledged, best-of-the-best, 100% home grown breast milk is now flowing through her digestive system and carrying all those nutrients to her other body systems. There's no holding back in that department. As healing as it may be to her body, it's also very healing for me to know that her body is accepting the power of it. I've been side by side with Bryer through this - pumping all hours of the night, in the car, near her bedside, wherever I can find a discrete place with a plug-in, just hoping that she would get to a point to be able to accept this only gift that I can give her, storing it up in the freezer for the right time. Now I know that all that effort is now where it was intended.
Our attorney has informed us that when Child Protective Services (CPS) is called in, they have 3 days to hold what they call a Shelter Care Hearing, to see if there is a significant reason for the children to be in the system. With the Christmas holiday and the weekend it will be longer than 3 days. We are scheduled to go to court for the hearing on the 27th. I realize that nothing has changed from what we would normally be doing - the 4 older kids are with Jason's parents and we are able to stay by Bryer's side. That is a huge blessing and a tender mercy straight from God! But, the fact that our kids are considered in foster care is very unsettling. We can't take them anywhere or be alone with them, which feels like we've been violated. At anytime, CPS could take away the 'visitation' we have with our kids for whatever reason. I'm ready for our hearing, but I am not looking forward to making the trip back home 2 hours away and be away from Bryer all day long. So far I have been torn between 2 places - Bryer's hospital room and our other kids. Now I will be torn between 3.
Sunday, February 9, 2014
#8 - Journal Entry from December 24, 2010
Last night after the polygraph the police sent Health and Welfare to inspect Jason's parent's house so that it would be approved as a safe place for our kids to stay. They informed us that with Christmas coming, we would be fine to visit our kids there, but we are not to be left alone with them, take them anywhere, and we cannot spend the night there. I can't imagine not being able to see my kids over Christmas. It's a tender mercy from God that we are able to be together. It sounds ridiculous to be supervised with our own kids, but we will do whatever they need us to do. It's hard to pull myself from Bryer's side anyway. They also told us that since we are under watchful eye with Bryer since she has her own nurse, that we could continue to stay by her bedside. Jason and I are still sleeping in the hospital Sleep Room a few hours each night, right down the hall from Bryer. It's convenient for pumping breast milk and being near if something changes with her quickly.
Bryer's sedation meds are being weaned slowly and today she proved that she's 'in there' and she's come ready to fight. She had small leg responses this morning. The fluid and brain swelling is continuing to come down, an answer to many prayers. She is proving the doctors wrong on their most extreme scenario that she might not make it. The next step - to prove that she can respond beyond a vegetative state. They expect that she may open her eyes in the next day or so as her meds continue to wear off. Her eyes are still very swollen from the awful eye exam so sleeping just looks like it would be more comfortable for her. Her ears are fading from the purple color they were when I found her not breathing. This afternoon she yawned and stretched her wrinkly little legs! She acts like a little princess that has been asleep a very long time. Jason's good friend came to visit and reminded us that when Sleeping Beauty was in hiding, her name was changed to Briar Rose. It fits her so perfectly - our little Sleeping Beauty, Bryer Rose! We didn't give Bryer a middle name when she was born, but I think Rose may stick. They are also trying to wean her off the oxygen machine to see if she can breath on her own and she has done well with it so far, keeping up her oxygen saturation levels. They have an EEG on her head to monitor seizure activity. It's dozens of little probes stuck to her scalp with wires coming out to attach them to a machine next to her with a screen we can watch. We can see brain activity change when we sing to her. She has gauze wrapped around her head, maybe to keep them protected or coming into contact with anything else. We have been instructed that if we see any seizure activity, we're supposed to click a button attached to the machine and write down what we saw and what time so they can go back to the video. It can be as subtle as a lip quiver or a thumb twitch, so I don't want to miss anything that would be significant. Her little toes stick out from under her blanket, showing off her red polished toe nails I painted last week before this whole nightmare started.
Having someone to sit with Bryer if I have to leave has become more crucial, now that she could show more signs of waking up. I am more torn with spending time with our other 4, but wanting to be there for Bryer too. The timing of Christmas makes it harder for our family to be split in two. I want there to be a familiar face for her to see or a voice to sing and talk to her, but I also want my older kids to remember Christmas as a family. I made sure my yesterday's-shirt was with Bryer when I left today so she has my scent close to her. We left for a little bit to spend time with our kids for Christmas Eve. Our tradition is to use the leftover Halloween candy to decorate a birthday cake for Baby Jesus. We set a piece out for Santa instead of cookies each year. Our Halloween candy was at home, hours away on snowy roads, so my Mom showed up at the hospital this morning with a grocery bag full of supplies to make and decorate the cake, and then sat with Bryer for us, a blessing to allow me to try to enjoy the day. I can't say how refreshing a little bit of 'normal' was for me today, doing that activity with my 4 older kids. During different situations as a mom, I have felt conflicted in making sure the fun times are documented - video, pictures, something. But that distracts from me being involved in the fun. Today it was not a question. For the first time, my eyes weren't behind the camera capturing this yearly tradition. I was soaking in all the giggles and sticky fingers first hand. My spirit desperately needed to enjoy the decorating adventure with my kids, not just record them doing it. Hunter made a mountain of salt and covered it in frosting, his practical joke to trick Santa. With him being 10, I wonder if this is the last year that all my kids will believe in Santa. We piled on the candy, sprinkles, marshmallows, and chocolate chips.
We pulled the kids aside to talk to them about Bryer and our situation. We reminded them about the family night we had when we talked about Mom and Dad dying. They repeated back to us the details of how they would live with Grandma and Grandpa. As we don't know what happened with Bryer on that day, we are careful not to skew their memory or perceptions of things. We explained that the doctors and police wanted to make sure that everyone is safe in our family so this was the plan we would do while we had to stay at the hospital with Bryer. They got it! In their little minds - at 10, 6, 4, and 2, they understood each at their own level and remembered what God had prompted us to do months earlier! That was a great blessing for them to remember and put it into action. It relieved worries and tension and trauma. It was like we were just running through the fire drill we already practiced for.
After our discussion we opened the gifts that I picked out from the hospital toy drive. I explained to the kids where the gifts came from and what a fun blessing it is to our family to have these fun surprises. As an avid photographer, it kind of kills me not to have pictures of our day today, but the memories are etched in my mind. Today my soul was filled up as much as it could be without our littlest girl there with us.
We have received so many cards, texts, visitors, and messages from people letting us know they are praying for Bryer. Some of these are faith-filled people with strong testimonies of prayer. Some people have not had a relationship with God in the past, or have just let life get in the way of the relationship that was once there. A girl named Mandy started texting me, saying she was praying for our family. I felt silly, but asked who she was, unaware of anyone named Mandy that would have my cell number. She gave her full name and I was immediately touched. This was a friend of mine from our small town who had started coming back to church little by little quite a few years back. At first it was our church cooking class, then Relief Society (our church's women's group), then for our regular church meetings. Shortly after, she started bringing her husband and 2 boys. Just when I felt things with their family were progressing, they stopped coming all together. She quit returning my calls, I felt she would avoid me in the grocery store, and our friendship dwindled and I was never sure why she changed so suddenly. Now she was praying for our family?! After texting back and forth with Mandy the past few days, I have started to wonder if our situation has a bigger purpose. Mandy was one, but there are many others praying.
True, honest, heartfelt, pleading prayers to God for one tiny little baby girl.
Conversations with Him that haven't taken place in months or even years.
Can it be that God will use their prayers and the ounces of faith they have left, to help Bryer?
Even as frail and little as she is, could it be that Bryer has a mission on this earth to bring more people back to God or to strengthen the relationships already there? If this is the case, then the rest of us as Bryer's support are just along for the ride to add our faith to theirs. I feel strongly that God has great confidence in us to handle what's been placed before us.
As it says in the scriptures, "...and a little child shall lead them."
Bryer's sedation meds are being weaned slowly and today she proved that she's 'in there' and she's come ready to fight. She had small leg responses this morning. The fluid and brain swelling is continuing to come down, an answer to many prayers. She is proving the doctors wrong on their most extreme scenario that she might not make it. The next step - to prove that she can respond beyond a vegetative state. They expect that she may open her eyes in the next day or so as her meds continue to wear off. Her eyes are still very swollen from the awful eye exam so sleeping just looks like it would be more comfortable for her. Her ears are fading from the purple color they were when I found her not breathing. This afternoon she yawned and stretched her wrinkly little legs! She acts like a little princess that has been asleep a very long time. Jason's good friend came to visit and reminded us that when Sleeping Beauty was in hiding, her name was changed to Briar Rose. It fits her so perfectly - our little Sleeping Beauty, Bryer Rose! We didn't give Bryer a middle name when she was born, but I think Rose may stick. They are also trying to wean her off the oxygen machine to see if she can breath on her own and she has done well with it so far, keeping up her oxygen saturation levels. They have an EEG on her head to monitor seizure activity. It's dozens of little probes stuck to her scalp with wires coming out to attach them to a machine next to her with a screen we can watch. We can see brain activity change when we sing to her. She has gauze wrapped around her head, maybe to keep them protected or coming into contact with anything else. We have been instructed that if we see any seizure activity, we're supposed to click a button attached to the machine and write down what we saw and what time so they can go back to the video. It can be as subtle as a lip quiver or a thumb twitch, so I don't want to miss anything that would be significant. Her little toes stick out from under her blanket, showing off her red polished toe nails I painted last week before this whole nightmare started.
Having someone to sit with Bryer if I have to leave has become more crucial, now that she could show more signs of waking up. I am more torn with spending time with our other 4, but wanting to be there for Bryer too. The timing of Christmas makes it harder for our family to be split in two. I want there to be a familiar face for her to see or a voice to sing and talk to her, but I also want my older kids to remember Christmas as a family. I made sure my yesterday's-shirt was with Bryer when I left today so she has my scent close to her. We left for a little bit to spend time with our kids for Christmas Eve. Our tradition is to use the leftover Halloween candy to decorate a birthday cake for Baby Jesus. We set a piece out for Santa instead of cookies each year. Our Halloween candy was at home, hours away on snowy roads, so my Mom showed up at the hospital this morning with a grocery bag full of supplies to make and decorate the cake, and then sat with Bryer for us, a blessing to allow me to try to enjoy the day. I can't say how refreshing a little bit of 'normal' was for me today, doing that activity with my 4 older kids. During different situations as a mom, I have felt conflicted in making sure the fun times are documented - video, pictures, something. But that distracts from me being involved in the fun. Today it was not a question. For the first time, my eyes weren't behind the camera capturing this yearly tradition. I was soaking in all the giggles and sticky fingers first hand. My spirit desperately needed to enjoy the decorating adventure with my kids, not just record them doing it. Hunter made a mountain of salt and covered it in frosting, his practical joke to trick Santa. With him being 10, I wonder if this is the last year that all my kids will believe in Santa. We piled on the candy, sprinkles, marshmallows, and chocolate chips.
We pulled the kids aside to talk to them about Bryer and our situation. We reminded them about the family night we had when we talked about Mom and Dad dying. They repeated back to us the details of how they would live with Grandma and Grandpa. As we don't know what happened with Bryer on that day, we are careful not to skew their memory or perceptions of things. We explained that the doctors and police wanted to make sure that everyone is safe in our family so this was the plan we would do while we had to stay at the hospital with Bryer. They got it! In their little minds - at 10, 6, 4, and 2, they understood each at their own level and remembered what God had prompted us to do months earlier! That was a great blessing for them to remember and put it into action. It relieved worries and tension and trauma. It was like we were just running through the fire drill we already practiced for.
After our discussion we opened the gifts that I picked out from the hospital toy drive. I explained to the kids where the gifts came from and what a fun blessing it is to our family to have these fun surprises. As an avid photographer, it kind of kills me not to have pictures of our day today, but the memories are etched in my mind. Today my soul was filled up as much as it could be without our littlest girl there with us.
We have received so many cards, texts, visitors, and messages from people letting us know they are praying for Bryer. Some of these are faith-filled people with strong testimonies of prayer. Some people have not had a relationship with God in the past, or have just let life get in the way of the relationship that was once there. A girl named Mandy started texting me, saying she was praying for our family. I felt silly, but asked who she was, unaware of anyone named Mandy that would have my cell number. She gave her full name and I was immediately touched. This was a friend of mine from our small town who had started coming back to church little by little quite a few years back. At first it was our church cooking class, then Relief Society (our church's women's group), then for our regular church meetings. Shortly after, she started bringing her husband and 2 boys. Just when I felt things with their family were progressing, they stopped coming all together. She quit returning my calls, I felt she would avoid me in the grocery store, and our friendship dwindled and I was never sure why she changed so suddenly. Now she was praying for our family?! After texting back and forth with Mandy the past few days, I have started to wonder if our situation has a bigger purpose. Mandy was one, but there are many others praying.
True, honest, heartfelt, pleading prayers to God for one tiny little baby girl.
Conversations with Him that haven't taken place in months or even years.
Can it be that God will use their prayers and the ounces of faith they have left, to help Bryer?
Even as frail and little as she is, could it be that Bryer has a mission on this earth to bring more people back to God or to strengthen the relationships already there? If this is the case, then the rest of us as Bryer's support are just along for the ride to add our faith to theirs. I feel strongly that God has great confidence in us to handle what's been placed before us.
As it says in the scriptures, "...and a little child shall lead them."
Sunday, February 2, 2014
#7 - Journal Entry from December 23, 2010
Bryer has been weaning off the sedation meds today, but we haven't seen a response yet. The neurosurgeon came in - the first doctor to be positive about her status. He said her brain was on the mend, the swelling was looking better, and he wouldn't need to do surgery to put a shunt in at this point. That was a welcome visit! The other doctors are much less positive and are getting more outspoken about abuse. One doctor said, "Out of 100 cases we see like this one, maybe 1 is not what we think it is." In my mind I wanted to scream, "We are the 1! Look at us! Look at me! I did not hurt my baby!" But I am not a screamer. I am not an arguer. To say that I don't like confrontation is an understatement. So all that came out were a few simple tears and shaking my head in opposition. I gathered enough composure to say, "I am held accountable by God, but I need you to know I didn't hurt my baby." For some it wouldn't have taken courage to just state the truth, but I already knew what I was up against and that they would invalidate me. I'm normally a confident person, but when matched with opposition, I'd rather keep my mouth shut and even the facts to myself. I expected the way I lead my life to speak for itself.
We have met with lots of doctors and specialists in the past two days. We sat around a table one day and they told us bluntly what they felt for Bryer's situation. They said there is still a chance that we could lose her. If she does make it, no one could tell exactly how she would be as she develops, but they explained there is a high chance that she could be in a vegetative state the rest of her life. Eating through a tube. No communication. Wheelchair bound. No voluntary movements. Day in and day out of taking care of all of her basic needs. Needless to say I am in denial. How could they say that about my baby that was just smiling last week? She is sweet and innocent and precious and has figured out how to roll over. She coos and loves her siblings and is a part of our family. Things like wheelchairs and feeding tubes do not happen to sweet babies like this. I didn't say much during the meeting and just felt myself getting defensive of Bryer so I let it all seep out through my tears. As if the diagnosis wasn't enough, they told us that they all strongly agreed on a few key phrases. Non-accidental trauma. Child abuse. Traumatic brain injury. Shaken Baby Syndrome.
Sickening. Absolutely sickening. I can think of nothing worse. It makes me sick to even write the words. I don't doubt that some people loose their cool. Or maybe they never had any to lose. Some people, for whatever reason, feel it's okay to hurt children. Or maybe they know it's not okay, but loose their patience and snap anyway. I get it. It happens. But, I am absolutely mortified to think they would categorize me with those people! It made me want to physically throw up, to regurgitate the opinions I heard. To have all the doctors - the higher ups - the most trusted people in the medical profession - those men that I trusted to take the very best care of my baby - say these things about me was beyond my words. I could feel my body tremble with distress. It was beyond my control to help their thought process. In a fight or flight situation, I'm definitely one to fly. Yet I felt trapped there in my seat next to my husband, unable to move or say anything. I don't remember leaving the room, but I must have at some point.
We have had a lot of friends and family come by the hospital, complete moral support for us. Some are there to cry with us, with nothing else to offer but a simple, powerful shoulder. Some bring food - a much needed comfort for Jason, as he isn't the nursing mom eating off the hospital menu. Some have tidied up our house back home. Some have taken meals in to Jason's parents where our kids are staying. Some have brought or sent cards, flowers, toiletries, basic necessities - because what else do you offer to grieving parents who are in a vice grip? I am so thankful for all those small acts of service! In the scriptures we are asked to bear one another's burdens. That's exactly what these people have done! It can be awkward and unnatural to know what to say or how to help, but these people just put themselves out there. They acted on thoughts they had... God-given thoughts on how to help. They have lightened our load. Where we felt the weight of the world as the doctors ridiculed us, there were others that were ready to bear that load, to also expose their own emotions with us and cry with us. They couldn't make Bryer wake up. They couldn't change the doctor's minds. They just chose to care and stand with us, completely vulnerable right along side us.
That's the state of mind I was in as we pulled ourselves away from Bryer's side and drove to the police station for our polygraph exams. Just another hoop to jump through. They asked for Jason and I to both take polygraphs, which was unusual because Jason was in a church meeting when I found Bryer not breathing. The police requested that I go first, for obvious reasons. I had a few people warn us about polygraphs, including our attorney. He said it was his legal obligation to advise us not to take the test. As a defense attorney, I felt he was telling us that for his best interest. Defense attorneys are asked to prove a guilty person innocent, right? An innocent person should be an easy thing to prove.
I sat down opposite a police officer at his desk. The very first thing he said to me was, "Right now, only one of us knows what happened. At the close of this procedure, both of us will know." That's exactly what I needed to hear and it put me at ease, however that was supposed to feel as I worried about my baby back at the hospital. He explained how the polygraph would work; he would put a blood pressure cuff on me, a metal spring around my chest to measure my breathing, and something in my hands to measure sweat. He prepared me with questions like, "Have you ever done something and then lied to cover it up?" My first thought was "Of course not!" I simply answered no. He asked questions about being deceitful and if I was participating on my own free will. He asked direct questions like "Did you hurt your daughter on December 19, 2010?" He asked me if I had ever been dishonest. It was left pretty open-ended. Was I supposed to recount each time I had a piece of candy and then hid the wrapper in the trash so my kids wouldn't find it? Or each time I said nothing was wrong when really it was? Eventually he got to the test, which was video-monitored in another room by my attorney and another police officer. He asked me similar questions during the actual test. By the end, he unstrapped me from all the monitors and said, "Remember when I said that at the beginning only one of us knew what happened, but at the end then both of us would know?" I shook my head that I remembered. He assured me, "Now both of us know." I felt a relief flush through my body. He knew what I knew - that I was innocent. Next stop - back to Bryer. Back to where the attention and energy needed to be in the first place.
The officer left the room and my attorney returned, looking very solemn. He sat down carefully and I saw concern on his face. I was not prepared for him to open his mouth and say, "You failed... Probably worse than I've ever seen someone fail." I remember being confused with his comment and trying to make sense of what that meant. The officer had said that he knew what I knew. That was a good thing. How could that have been failing?
I was escorted out to a meeting room to talk with Jason and our attorney. I told Jason what the results were. He just shrugged his shoulders and in my husband's true matter-of-fact style, he said, "Well, now what?" My attorney stepped out for a minute to talk with the officers and returned a minute later. Jason and I used to watch Law and Order together once in a while. Now we felt like we were living it - right in the center of the hour long TV show that seemed to be taking much longer. Our attorney said he had some bad news. He explained that even though a polygraph is not accurate enough to use in a court of law, it is considered reasonable evidence to proceed with legal action. He said that all 5 of our kids were being declared in imminent danger. They were being taken from us, into the custody of Health and Welfare and would be put in foster care.
My heart sank. My whole body went numb. My mind flooded with fog and depression. Take my kids? That was my life. Not just the last 10 years of being a mom, but all the 31 years of my life's dreams. These were my kids! My own flesh and blood. I felt them kick inside my womb, held them close when they were scared, kissed their knees when they fell down. They are individuals with personalities and talents and tender feelings, not to be tossed into a pool of foster care kids! These were my heart, my soul, my every waking hour. All completely ripped away just like that. I wanted to melt into a puddle into the floor, completely losing my will to breath. I have never struggled with depression, but that must be what it feels like. It's a deep, dark place without reasoning. Sheer desperation. I just didn't care about anything else after that.
My attorney left the room for Jason and I to talk. We cried together - one of the few times in the past several days that we both were at a loss at the same time. We agreed when we got married that only one of us could have a bad day at one time. It had worked most of the time. Now it was hitting both of us head on, all at once with no way to escape it. We hugged each other and bawled, sitting there together on that couch. Everything we had worked hard for. Family nights and sweet prayers before bed and reading together and eating dinner as a family and wrestling on the floor, tickling the kids to hear their giggles. All of it - just ripped out from under us. Our very foundation of what family should be.
In that state of anguish as we sobbed together, a thought came to my mind. I blurted it out before I even made sense of it. "I think God prepared us for this." Jason didn't look up at me. "Remember months ago when you had the strong impression to prepare for the event that we should die?" I will never forget my husband's eyes at that moment. So much grief and heartache, and then hope in his red eyes. We talked about the discussion we had just before Bryer was born and the plan we made to get things ready in the event we both died at the same time. We had looked over life insurance policies to make sure they were sufficient. We hoped that Jason's parents would be willing to take our 5 kids, so we went to them and asked. Not a conversation that we wanted to have, but felt strongly that we should. We discussed with them life insurance plans and living arrangements and reasons why we felt they were the best ones for our kids - lots of family support, the same religious background, the small community we wanted our kids raised in, their experience raising their own 5 kids. We then went back and had a family night and prepared our kids for a 'just-in-case' scenario. We told them how we had felt about getting prepared, even though we were sure we wouldn't die. We just needed to obey God's promptings. We answered their occasional questions for weeks later about the details and how they would get to play with their cousins; they would still see their other grandparents; they would go to church with Grandma and Grandpa, and live at their house. Jason and I agreed, sitting on that couch in the police station, knowing that 4 of our kids were at home with his parents.... That this was exactly the plan that was being put into place. We were prepared. His parents were prepared. And our kids were prepared. We just had never thought we would ever be alive to witness it.
Could it be that God prepares us for our trials? In Ephesians it talks about putting on the whole armor of God, that we will be able to stand against wickedness. It talks about having a breastplate of righteousness, our loins strapped with truth, our feet prepared with the gospel of peace, the helmet of salvation, and shield of faith. More than just 'nice verses' of scripture, these are true! God does not just throw us out here onto earth and expect us to fend for ourselves. He gives us tools - protection - all those pieces of armor to keep us as safe as possible as we go to battle. For Jason and I, we listened to those promptings that prepared our family. That was a huge piece of armor for our family that became a blessing to us. God also put all the people in place that we would need to sustain us, support us, cry with us, and particular blessings we would need in order to endure.
I fully realize that we are not the only ones that go through hard times. You or someone you love may be struggling. I challenge you to look for ways you, or they, have been prepared to endure this trial. God knows us personally. He knows our hearts, our challenges, our heartaches. He also knows our strengths and talents. He knows what we need before we know that we need it. I know that struggles are personal. I encourage you to write a list of how you have been prepared for a certain trial. Use your own pen and paper, a journal, or the comment section on this post. Once we write things down, they are more concrete in our memory and we can bring them back to our remembrance when we most need them. (Kudos to the one who has the courage to leave the first comment! I'm not asking for you to share your trial unless you feel comfortable, but listing the ways you have been prepared may help others see how they have been prepared also.)
We have met with lots of doctors and specialists in the past two days. We sat around a table one day and they told us bluntly what they felt for Bryer's situation. They said there is still a chance that we could lose her. If she does make it, no one could tell exactly how she would be as she develops, but they explained there is a high chance that she could be in a vegetative state the rest of her life. Eating through a tube. No communication. Wheelchair bound. No voluntary movements. Day in and day out of taking care of all of her basic needs. Needless to say I am in denial. How could they say that about my baby that was just smiling last week? She is sweet and innocent and precious and has figured out how to roll over. She coos and loves her siblings and is a part of our family. Things like wheelchairs and feeding tubes do not happen to sweet babies like this. I didn't say much during the meeting and just felt myself getting defensive of Bryer so I let it all seep out through my tears. As if the diagnosis wasn't enough, they told us that they all strongly agreed on a few key phrases. Non-accidental trauma. Child abuse. Traumatic brain injury. Shaken Baby Syndrome.
Sickening. Absolutely sickening. I can think of nothing worse. It makes me sick to even write the words. I don't doubt that some people loose their cool. Or maybe they never had any to lose. Some people, for whatever reason, feel it's okay to hurt children. Or maybe they know it's not okay, but loose their patience and snap anyway. I get it. It happens. But, I am absolutely mortified to think they would categorize me with those people! It made me want to physically throw up, to regurgitate the opinions I heard. To have all the doctors - the higher ups - the most trusted people in the medical profession - those men that I trusted to take the very best care of my baby - say these things about me was beyond my words. I could feel my body tremble with distress. It was beyond my control to help their thought process. In a fight or flight situation, I'm definitely one to fly. Yet I felt trapped there in my seat next to my husband, unable to move or say anything. I don't remember leaving the room, but I must have at some point.
We have had a lot of friends and family come by the hospital, complete moral support for us. Some are there to cry with us, with nothing else to offer but a simple, powerful shoulder. Some bring food - a much needed comfort for Jason, as he isn't the nursing mom eating off the hospital menu. Some have tidied up our house back home. Some have taken meals in to Jason's parents where our kids are staying. Some have brought or sent cards, flowers, toiletries, basic necessities - because what else do you offer to grieving parents who are in a vice grip? I am so thankful for all those small acts of service! In the scriptures we are asked to bear one another's burdens. That's exactly what these people have done! It can be awkward and unnatural to know what to say or how to help, but these people just put themselves out there. They acted on thoughts they had... God-given thoughts on how to help. They have lightened our load. Where we felt the weight of the world as the doctors ridiculed us, there were others that were ready to bear that load, to also expose their own emotions with us and cry with us. They couldn't make Bryer wake up. They couldn't change the doctor's minds. They just chose to care and stand with us, completely vulnerable right along side us.
That's the state of mind I was in as we pulled ourselves away from Bryer's side and drove to the police station for our polygraph exams. Just another hoop to jump through. They asked for Jason and I to both take polygraphs, which was unusual because Jason was in a church meeting when I found Bryer not breathing. The police requested that I go first, for obvious reasons. I had a few people warn us about polygraphs, including our attorney. He said it was his legal obligation to advise us not to take the test. As a defense attorney, I felt he was telling us that for his best interest. Defense attorneys are asked to prove a guilty person innocent, right? An innocent person should be an easy thing to prove.
I sat down opposite a police officer at his desk. The very first thing he said to me was, "Right now, only one of us knows what happened. At the close of this procedure, both of us will know." That's exactly what I needed to hear and it put me at ease, however that was supposed to feel as I worried about my baby back at the hospital. He explained how the polygraph would work; he would put a blood pressure cuff on me, a metal spring around my chest to measure my breathing, and something in my hands to measure sweat. He prepared me with questions like, "Have you ever done something and then lied to cover it up?" My first thought was "Of course not!" I simply answered no. He asked questions about being deceitful and if I was participating on my own free will. He asked direct questions like "Did you hurt your daughter on December 19, 2010?" He asked me if I had ever been dishonest. It was left pretty open-ended. Was I supposed to recount each time I had a piece of candy and then hid the wrapper in the trash so my kids wouldn't find it? Or each time I said nothing was wrong when really it was? Eventually he got to the test, which was video-monitored in another room by my attorney and another police officer. He asked me similar questions during the actual test. By the end, he unstrapped me from all the monitors and said, "Remember when I said that at the beginning only one of us knew what happened, but at the end then both of us would know?" I shook my head that I remembered. He assured me, "Now both of us know." I felt a relief flush through my body. He knew what I knew - that I was innocent. Next stop - back to Bryer. Back to where the attention and energy needed to be in the first place.
The officer left the room and my attorney returned, looking very solemn. He sat down carefully and I saw concern on his face. I was not prepared for him to open his mouth and say, "You failed... Probably worse than I've ever seen someone fail." I remember being confused with his comment and trying to make sense of what that meant. The officer had said that he knew what I knew. That was a good thing. How could that have been failing?
I was escorted out to a meeting room to talk with Jason and our attorney. I told Jason what the results were. He just shrugged his shoulders and in my husband's true matter-of-fact style, he said, "Well, now what?" My attorney stepped out for a minute to talk with the officers and returned a minute later. Jason and I used to watch Law and Order together once in a while. Now we felt like we were living it - right in the center of the hour long TV show that seemed to be taking much longer. Our attorney said he had some bad news. He explained that even though a polygraph is not accurate enough to use in a court of law, it is considered reasonable evidence to proceed with legal action. He said that all 5 of our kids were being declared in imminent danger. They were being taken from us, into the custody of Health and Welfare and would be put in foster care.
My heart sank. My whole body went numb. My mind flooded with fog and depression. Take my kids? That was my life. Not just the last 10 years of being a mom, but all the 31 years of my life's dreams. These were my kids! My own flesh and blood. I felt them kick inside my womb, held them close when they were scared, kissed their knees when they fell down. They are individuals with personalities and talents and tender feelings, not to be tossed into a pool of foster care kids! These were my heart, my soul, my every waking hour. All completely ripped away just like that. I wanted to melt into a puddle into the floor, completely losing my will to breath. I have never struggled with depression, but that must be what it feels like. It's a deep, dark place without reasoning. Sheer desperation. I just didn't care about anything else after that.
My attorney left the room for Jason and I to talk. We cried together - one of the few times in the past several days that we both were at a loss at the same time. We agreed when we got married that only one of us could have a bad day at one time. It had worked most of the time. Now it was hitting both of us head on, all at once with no way to escape it. We hugged each other and bawled, sitting there together on that couch. Everything we had worked hard for. Family nights and sweet prayers before bed and reading together and eating dinner as a family and wrestling on the floor, tickling the kids to hear their giggles. All of it - just ripped out from under us. Our very foundation of what family should be.
In that state of anguish as we sobbed together, a thought came to my mind. I blurted it out before I even made sense of it. "I think God prepared us for this." Jason didn't look up at me. "Remember months ago when you had the strong impression to prepare for the event that we should die?" I will never forget my husband's eyes at that moment. So much grief and heartache, and then hope in his red eyes. We talked about the discussion we had just before Bryer was born and the plan we made to get things ready in the event we both died at the same time. We had looked over life insurance policies to make sure they were sufficient. We hoped that Jason's parents would be willing to take our 5 kids, so we went to them and asked. Not a conversation that we wanted to have, but felt strongly that we should. We discussed with them life insurance plans and living arrangements and reasons why we felt they were the best ones for our kids - lots of family support, the same religious background, the small community we wanted our kids raised in, their experience raising their own 5 kids. We then went back and had a family night and prepared our kids for a 'just-in-case' scenario. We told them how we had felt about getting prepared, even though we were sure we wouldn't die. We just needed to obey God's promptings. We answered their occasional questions for weeks later about the details and how they would get to play with their cousins; they would still see their other grandparents; they would go to church with Grandma and Grandpa, and live at their house. Jason and I agreed, sitting on that couch in the police station, knowing that 4 of our kids were at home with his parents.... That this was exactly the plan that was being put into place. We were prepared. His parents were prepared. And our kids were prepared. We just had never thought we would ever be alive to witness it.
Could it be that God prepares us for our trials? In Ephesians it talks about putting on the whole armor of God, that we will be able to stand against wickedness. It talks about having a breastplate of righteousness, our loins strapped with truth, our feet prepared with the gospel of peace, the helmet of salvation, and shield of faith. More than just 'nice verses' of scripture, these are true! God does not just throw us out here onto earth and expect us to fend for ourselves. He gives us tools - protection - all those pieces of armor to keep us as safe as possible as we go to battle. For Jason and I, we listened to those promptings that prepared our family. That was a huge piece of armor for our family that became a blessing to us. God also put all the people in place that we would need to sustain us, support us, cry with us, and particular blessings we would need in order to endure.
I fully realize that we are not the only ones that go through hard times. You or someone you love may be struggling. I challenge you to look for ways you, or they, have been prepared to endure this trial. God knows us personally. He knows our hearts, our challenges, our heartaches. He also knows our strengths and talents. He knows what we need before we know that we need it. I know that struggles are personal. I encourage you to write a list of how you have been prepared for a certain trial. Use your own pen and paper, a journal, or the comment section on this post. Once we write things down, they are more concrete in our memory and we can bring them back to our remembrance when we most need them. (Kudos to the one who has the courage to leave the first comment! I'm not asking for you to share your trial unless you feel comfortable, but listing the ways you have been prepared may help others see how they have been prepared also.)
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