"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."
There are lots of things that are really hard about having a child that's 'high maintenance,' which is not to be confused with the huge amount of blessings that also come from having a special needs angel in our home 24/7. When one of those huge blessings come along, I love to share! So.... Let me introduce you to AAC Camp! (Alternative and Augmentative Communication Camp)
Approximately 40 campers came together from the Northwest United States and Canada that all use something called a communication device, often referred to as a 'talker.' It's similar to an iPad that's used to talk. Some kids have multiple disabilities and some kids are only challenged by speech. The campers' spoken language each vary from completely non-verbal to saying their own words and sentences that may be harder for the untrained ear to understand, or expanding on the thoughts they can't physically put into words.
Bryer is one of the latter. We understand nearly everything she says, and most people that are around her for an hour or two catch on to her language and vocabulary, but in the meantime, it's been helpful to have a communication device help bridge that gap, especially with her starting school this fall. One problem - I didn't understand the potential, how to help her use it, how to program it, or how to use it in every day activities. This camp covered all of these bases and so much more!
Let me introduce you to Bryer's very favorite part of camp - her camp counselor, Jackie. Most of the camp counselors are grad students studying speech therapy. It is no coincidence that Bryer and Jackie were matched up together. As nervous as I was about leaving her, these two were fast friends and away they went, leaving me to try to figure out what to do with my day in between parent trainings. Jackie will be an amazing speech therapist someday soon! She is so intuitive, patient, willing to learn right along with the kids, and so dedicated to details! She was hooked right away to Bryer's sense of humor and personality.
The mornings were filled with stations. On the last day we got to come for Family Day so Bryer could show us what she learned. It was a big hit playing games while Bryer used her 'talker' to give directions, ask questions, and interact.
The stations were Games (and therapy dogs), Drama, Music and Movement, and Computers.
Another favorite part was the afternoon activities... Square dancers performed for the kids and included them in dancing, they went swimming, and the BSU football players even came to play one day! It was touching to see these tough guys in uniform cheer the kids on as they made it through the obstacle course, or push their wheelchairs down to the touchdown cones.
Another afternoon activity... A beauty pageant! Bryer isn't one for getting dressed up, but she did get her nails painted and her wheelchair decked out to meet a pageant queen!
Her least favorite part of camp was the Drama Station, as she doesn't like getting dressed up or messing with things on her head. It was here that she learned to navigate on her talker to say, "I need to go to the bathroom," just to play hookie from drama! This tactic has since become popular when she's done shopping at the grocery store, or during therapy when she needs a break!
She does have a bossy side and on family day she loved telling her brother to put on the 'brown hat,' with her talker.
Bowling on her command of ready, set, "GO!" She also loved playing the color game where she would tell Jackie which colored dot on the floor to go to next while Jackie pushed her around in circles from color to color. Again, that bossy side coming out!
Computer time with her favorite camp counselor!
She used a big paint roller to help make this big teepee with the other kids, which she showed off to us on family day.
Adaptive painting, with marbles... She could push on one side of the tray to make the marbles roll through the paint to the other side, and then back the other way.
They did a scavenger hunt using talking buttons to tell them where to go to find the next clue.
*You'll also notice that Bryer is wearing Jackie's name tag in this picture. She's a goof and likes to change names often. It was the best compliment she could give Jackie to want to be her for the day!
This is how Bryer was after picking her up from swimming one afternoon - and really every day at the end of camp. Her brain was full and she was exhausted!
I can't say that I didn't feel the same! While she was doing her thing, I was soaking in as much as I could too. They had parent trainings for an hour or so each morning and again each afternoon. Everything from stretching your child's vocabulary and sentence length to learning to use the talker in everyday situations. They had a class on programming, and another with questions for the doctor. They welcomed guest speakers, and it was so refreshing to network with other parents that are in the same boat!
These kids are amazing! A few of the campers use 'Eye Gaze' to access their talkers. The machine tracks their eyes while they look at the screen to tell you what they want to say! Another boy in a wheelchair doesn't have control of his upper body and uses his toes to point to what he wants to say on his talker. At one point he held a craft he made in between his toes on one foot and then used his other set of toes to tell about it! I was in awe watching these kids!
When we first got Bryer's talker over a year ago, we used auditory scanning. Her talker would go through choices (quietly) and she would hit a button when it got to the one she wanted and her talker would say it out loud. Her eye sight and motor functions have improved so much that now she points with her finger to what she wants to say, which is much quicker and more efficient. We are learning to navigate between pages for different activities and situations, but she's gotten very comfortable with her 'Quick Fires' which are phrases she uses on a regular basis:
I have to go to the bathroom.
I am hungry. Can you get me something to eat?
Go away please. (Which is very useful when her smothering siblings are around!)
Come here please.
Can you give me some choices please?
I want to play!
I am tired.
The very, very best part of camp has been watching her own vocal vocabulary grow! That's the ultimate goal - for the kids to use their own voice if/when they are capable. Prior to camp, this would have been a typical conversation:
Bryer (with her own voice): More hungry Mom!
Me: Ok. I'll warm up some chicken enchiladas for you.
Here's how a conversation went this past week after camp.
Bryer (with talker, trying to copy as it said it): I am hungry. Can you get me something to eat?
Me: Yes. What do you want me to fix you?
Bryer (with talker): Can you give me some choices please?
Me: Ok. Do you want me to warm up lasagna or chicken enchiladas?
Bryer (with her own voice): MOM! Chicken enchiladas yucky!
*I have been giving her chicken enchiladas for years and she has never once told me that she didn't like them!
This week she also got to 'call' the Twister game for her siblings. In her game section of her talker we created buttons for Right Hand, Left Hand, Right Foot, and Left Foot. We'll practice navigating back to the colors page, but for now it was her turn to call out the body part and I would call out the color.
She has WORDS - real, live words - that she can voice her opinion, needs, and share what is going on in that smart brain of hers! That is the power and miracle of communication, however it comes about!
I have been hesitant to post any videos of Bryer. As her parents, we are her protectors. Her safe place. Her rock. We spent the first 3 years of her life fighting to keep her and our family together, which is a whole other story you can read HERE. We see her as a blessing - a real live angel right here in our home... A very loud, very opinionated angel! One loud and opinionated angel that they said would never show emotion, would never talk, eat on her own, and would certainly never give back. At this time of year 5 years ago she was literally fighting for her life with every. single. breath.
I won't lie. There are days that are rough. My back aches from carrying her on the days I don't get a workout in. She pushes us to be better than we were the day before. Her personality is to naturally be a mover. She's a go-getter. She's a motivating little being that keeps us on our toes. Her main challenge in life is relying on everyone else to get her where she needs to go. The motivation and the fight is there, but the messages from her brain to tell her muscles to go-get-em are challenged.
As one of her main protectors, my biggest hope is for others to see her as we see her. So releasing a video of her is scary for me. It shows her flaws, her challenges, and her set backs. Without fully appreciating those things, you can't share in the excitement of how far she has come either. So with that, I put this video together... The first of its kind.
Enjoy and feel the joy of what her little spirit brings to this world sometimes full of chaos, sadness, and frustration. You can give full appreciation to the good times when you can acknowledge those low times. May YOU also find the courage, energy, and confidence God has in you to overcome struggles and challenges!
This post is for other parents that are also interested in this surgery. There are Facebook groups that have been irreplaceable in answering questions, getting feedback from other parents, and understanding how others have arrived at this decision also.
I'll give you a rundown on:
*Bryer's background
*What our choices were
*How we made the decision for SPML and SLOB
*The pre-op and surgery process
*Contact names and numbers, and other helpful people along the way
*A rundown of cost and how we did our fundraising
*Our 3 week post op and how she's feeling now!
*4 week post op with casts coming off!
Feel free to skip to the part in the above list that pertains to you, or skim through the whole thing. Welcome to Bryer's Fan Club!
Bryer's Background
This whole blog is about her, so feel free to start at the beginning with THIS LINK. In a nutshell, Bryer is experiencing spastic quadrapaligia cerebral palsy, which means it affects all 4 of her limbs (quad) and makes them tight (spastic). Even the suggestion to move her right arm will produce more tightness. She is able to roll from back to tummy, tummy to back, army crawl/scoot 3-6 feet, sit unassisted on soft surfaces, as she is still gaining strength and balance in her hips and torso.
She is cognitively very aware. She has nicknames for all 6 of her family members, likes to play pretend, sings songs well enough that we know what she's singing, but has speech delays. She speaks about 9 dozen words, although she's not always understood by others outside our family. She lights up with music, loves other kids, and is learning to use a communication device similar to an ipad (Dynavox).
What our Choices Were
Because of Bryer's diagnoses of cerebral palsy, her brain tells her muscles to stay tight. We knew it was coming, but a big part of me wasn't ready to take the next step. We have tried lots of options to help relax the muscles. All were a help in one way or another, but none was a cure-all. In addition to regular physical therapy, occupational therapy, and speech therapy, we have also had success with:
Essential oils (less sickness, no seizures, and increase in vocals)
Foot zoning (relaxed the muscles in her hips, opened things up for her brain and spinal cord)
Cranial-sacral therapy (a way to release where her body has held tension, which has increased vocals, sleep quality, regulated digestion, clearing her sinuses during a cold, and helped her body feel relaxed usually for the next several hours)
Myofascial release (a way to keep her muscles, tendons, and connective tissue healthy and mobile) Hyperbaric oxygen therapy (huge digestion regulation, permanently stopped all prescription medications, eye tracking became better, increase in vocals)
Fish oil, magnesium, and other supplements (because we need to feed the body and brain to give it the best fuel to work with).
We had 2 issues in front of us -
1- Muscle tightness
2 - Because of the tightness, it was pulling her hip out of socket
I feel like we've been led to the next clue in this puzzle every step of the way and am thankful for answered prayers. What has been right for us, may not be for the next child. Each human body is so individual and unique.
Still, nothing touched those tight muscles longer than the next nap or night's sleep. We have gone through phases of stretch-all-the-time, to don't-stretch-and-see-what-happens. I finally made the appointment with the doctors in our area for surgery options.
To address the muscle tightness, there seemed to be only 2 choices - botox injections or baclofen (oral or a surgical pump). Neither seemed quite right - pumping my little girl with toxins (botox) that her body would eventually build a resistance to; or inserting a (baclofen) pump the size of a hockey puck in her abdomen to administer drugs 24/7 to keep her body loose. Even though it didn't feel right, I decided to give it a good chance and meet with the doctor who would do a pump. 4 hour appointment... Solid conversation with the doctor... He is known to be the best of the best in the whole country for baclofen pumps, yet I walked out of there knowing there HAD to be something else.
Second, we still had the issue of her hip dislocating if left untreated. Our local doctor recommended a procedure where he would cut a wedge from the femur and tilt the femoral head (ball) into the socket. I had questions about leg length, leading to scholiosis, and the actual cutting of bone. If we moved forward with this procedure, we also needed something to manage the spasticity or we'd be sending her back for another identical surgery in 3-6 years.
About this same time I was learning about 2 procedures called SPML and SLOB. I'll explain those in depth, as that's what we eventually decided to go with.
This is a picture taken from Dr. Nuzzo's website that shows in the upper right corner how a wedge would be cut out to tilt the femur head into the socket
How We Made the Decision
I joined a few Facebook groups to ask questions of other parents and adults. To be fair, I joined groups for both the baclofen pump and SPML and SLOB procedures. I was also looking for something outside our area. What are they doing in other parts of the U.S? The world? The SPML group intrigued me and nothing I found on there was contrary to what I already felt about the human body. Also, despite searching for negative experiences, I found NONE. There were reports that 10% of patients had a return visit for the same procedure (SPML, not SLOB) 5+ years later, but with it being so non-evasive, I felt that the 10% chance was worth it.
For some, the baclofen pump may be the right answer. For us, it clearly was not. I was not even willing to do the trial, so I can't tell you what outcome that would have had.
The Pre-Op and Surgery Process
With spastic quad cerebral palsy, the brain sends messages to the muscles to stay tight, stay tight, stay tight. The part of the nerve that helps with the brain transmission is the covering called the myelin sheath (this will be important later) and is a fatty covering (which is one reason why healthy fats like fish oil, coconut oil, and avocados are so good for the brain).
SPML is a type of tendon lengthening and stands for Selective Percutaneous Myofascial Lengthening. It's different than a typical lengthening because the tendons are not actually cut, so there is little to no scar tissue around the site, providing a super quick recovery . She had this procedure done in her achelles tendon (heel cords) and adductors (inside, upper legs). It can also be done in the hamstrings, but hers had good range.
Here's a cool video explaining what the facia is (as in the MYOFASCIAL piece of that big long surgery word), which is what is 'pin pricked' to provide lengthening. The human body is absolutely amazing to me!
She also had alcohol blocks in her adductors and biceps (upper arm). The alcohol blocks are an injection that 'melts' away that fatty substance covering the nerve (remember I said it would be important). It interrupts the signal to 'stay tight, stay tight, stay tight' and gives the body a chance to do something else.
Because Bryer's hip was 'too far gone,' for only the tendon lengthening and alchol blocks, she also had to have a hip surgery refered to as an osteotomy, or SLOB procedure. As the doctor explained, it's like a softball in a glove, where the ball (head of the femur) is coming out of the glove (hip socket). Being a college softball player, I knew immediately that this was my kind of guy, speaking my language! He explained that he would lengthen the fingers of the glove to secure the ball into the glove. (This is different than the other procedure where they wanted to cut a wedge from the femur bone and tilt it into the socket. Adding to, rather than taking away from, her body made sense to me.) For some patients, it's enough to put them in a hip positioning brace. Bryer's hips were considered 70% out, and they call them 'too far gone' and need to do this surgery to form the socket around the femoral head.
Another picture taken from Dr. Nuzzo's website showing the landmarks of the hip. See this link for more info, but basicly the center of the femoral head should to be within the lower inner quadrant (where the little dashed lines are) of where the H and P lines cross.
Once we knew that the SPML and SLOB was the route to go, I started researching doctors. There are only 2 in the United States that do these unique procedures. Their contact info is below. Dr. Nuzzo trained Dr. Yngve, who is who we ultimately ended up going with.
I called Dr. Yngve's office and they sent a packet within the week for us to fill out and return with recent hip x-rays taken by our local doctor. Within about 2 weeks of them receiving our packet, Dr. Yngve looked it over and personally called us. I had my list of questions ready and had an hour long discussion with him about the procedure, what to expect, specifics about Bryer, etc. He is very easy to talk to and left more than enough time for me to get a full understanding. He also said this would not be the only time we talked before surgery and that he would be open to more phone calls as needed.
Contact names and numbers,
and other helpful people along the way
Dr. David Yngve (409) 747-5700
(Belia is the one who answers and is very friendly and helpful)
We chose surgery with him at UTMB - 301 University Blvd Galveston, TX 77555-0165
The doctor who trained Dr. Yngve is Dr. Nuzzo in New Jersey.
Dr. Roy Nuzzo (908) 522-5801
99 Beauvoir Ave, Summit, NJ 07901
His comprehensive website (though not super reader friendly) is
Other helpful contacts if you are using Dr. Yngve:
The hospital social worker can arrange for housing with the Ronald McDonald House
Linda Perez (409) 772-1541 was very helpful. Call 3-4 weeks prior to surgery for her to fill out the referral paperwork
Ronald McDonald House in Galvaston (409) 762-8770 They can't guarantee a room and will probably ask you to call a few days prior to surgery to make sure they have room
A rundown of cost and how we did our fundraising
Maybe it sounds silly that we got this far into the process before we knew how much this would cost, but it had all fallen into place so well and was clearly the answer to our prayers. The hospital sent us an original self-pay quote of $112,000. (Don't stop reading at this figure... I'll explain!) This did include an 8-night hospital stay, should it be needed. It also included the SLOB procedure, which is the most evasive part for Bryer. Those that have only the SPML done are considered out patient and would be significantly less without a hospital stay.
Needless to say, $112,000 was a hard number to choke down. Her current disability insurance wouldn't cover the surgery. More prayers. More research. More asking on the Facebook pages (no one wants to talk money or insurance). We found that Blue Cross/Blue Shield was accepted by the hospital and very easy to work with, so we started an additional insurance plan with them. Minus the premium, our out of pocket and travel expenses were expected around the $10,000 range.
More prayers. More research. I decided to run a t-shirt campaign. We encouraged Bryer's supporters to decide on a personal goal for themselves to "Wake Up and Be Different," just as she would after surgery. They bought t-shirts to commit to their goal, and show their support for Bryer. We raised $9000 for her surgery in a matter of a few weeks!
Here are her 3 month post op x-rays. You can see the 'shelf' built on her right hip socket (our left by looking at the x-ray). We have done all the follow up with our local doctor, who has been impressed with the work done and the outcome.
What's on an x-ray is one thing. What really matters (to me anyway) is how it has affected her functioning in everyday life.
She spent a whole, hot, sticky, 3 month summer in a hip brace and 4 weeks of that in ankle casts. Besides getting to take it off while we made adjustments, she was only out of it 4 other times - and 1/2 hour at a time at that. If I felt that surgery was the answer, then she deserved the best way to recover with the best outcome.
We tried to find other ways for her to play with water without getting wet. (The water pillow with floating toys her siblings helped make for her)
This is the summer we really learned to serve. We're lucky we have such a cute project to practice with!
The brace is not cute. It's not a fun accessory. I'm not gonna lie. Some of the summer, it was just a plain pain in the rear. It was hard to get her in a car seat, a stroller, and she had to have a different wheelchair to accommodate her wider legs.
There were tears - more on my part then hers. And then I'd see her happy face and realize that if she could endure it with a smile, then I could too. She began to stand with lots of help about 6 week post op.
Then there were more tears when she had to lay down - she wanted to be up, up, UP!
At about 10 weeks post op, at the end of July, she started taking steps! The doctor warned us not to worry about walking, that it would be hard to do in her hip brace. He forgot to tell Bryer!
It was a long summer of no baths, no swimming, and only splashing on the edge!
3 Month Post Op
After 3 long months, her brace came off and her once tight, rigid legs were floppy like a baby giraffe. I worried that she would loose her balance and core strength, but with the decreased spacticity it actually helped her gain more of an understanding of where her body is at.
The only area we didn't see longer improvement with was her right arm function. We were good in the beginning about tying up her good arm to make her use her right, but within a month or so, it was back to being tight again. With the rest of the improvements, I'll take it how we can get it!
It happens almost every time we go to the grocery store. Or the toy store. Or the school. Or a sports event. Or really anytime we leave our house. At first I didn't know how to react. Being a mom to a little girl with special needs does not automatically arm me with some power to deflect stares and pointing. I didn't ask to be the center of attention and neither did she, but the most awkward situations usually leave the most room for growth.
At four, she doesn't walk or crawl (yet). When she's really concentrating, sometimes she drools. She has a vision impairment, and she tunes in so well with her "bionic ears," as we call them, that sometimes she forgets to use her eyes to see. With all her challenges, she has curls that often get comments, and a genuine smile and giggle that will melt a person. She understands almost everything around her and even picks up on us spelling out, "I-C-E-C-R-E-A-M" when we suggest it to her siblings, thinking we can hide messier things like that from her. She speaks dozens of words and puts together short phrases, but is still not understood by everyone. She is preserved in a state of innocence and only cries over getting her hair combed and having to end bath time - familiarly typical of a 4 year old.
From the time she was little, we got comments of "Aww, she's so sleepy on your shoulder!" when really she couldn't hold her head up yet. I thought as she got older, it would get better - at least people would realize she had a disability and not mistake it for being tired.
*****
I remember the first time I found a different end to the stares. We were standing in line at the grocery store and an innocent little girl stood staring from the next checkout stand over. I could sense her little eyes and I had the deep feeling for her to know my little girl as I did - not as someone different than her, but as someone with so many things in common. With the little girl's eyes glued to me, I reached forward and kissed the top of my daughter's head as she worked hard to balance herself in the cart. I continued to talk to her as we stood in line, gave her hugs, and sang songs. By the time we were both checking out, that little girl was staring even more intently at us as her mom led her away out of the store - not because she noticed my daughter was different, but she was smiling and wanted to be a part of our fun games while we waited in line.
I snapped this picture, proud that Bryer could get her tight right hand out enough for her attempt to hold on, even though it wasn't very functional if she started falling over. I later noticed the lady behind her watching, maybe wondering why it was a big deal that my daughter was riding in a shopping cart.
It was that experience that shed the first bit of light and a way to shape how people view those with disabilities. Gaining confidence, I used this little game several times in circumstances that the staring could have been uncomfortable. Maybe I was ready for the next step.
Again in line at the grocery store several months later, I heard a little girl ask her mom something about my daughter. I looked over in time to see the mom grab her little girl's pointing finger and say, "It's not nice to point. Don't stare at her." My heart sank again.
I have always been touched by the innocence of children. It was okay for her daughter to be curious.
Going against everything that seemed logical and socially acceptable, I wheeled my daughter over to the little girl and her mom and said, "This is Bryer. I noticed you were looking at her. She is 4. How old are you?" The little girl perked right up, "I gonna have a birfday and then I be 4 too!" Ding! Ding! Ding! We found something in common! I told her that Bryer loves to sing songs and listen to music on my phone. "I play my mom's phone!" she giggled, as she held up her little fist with a tight grip on her mom's phone. Bonus! More things in common! At the sound of the little girl's voice, Bryer smiled her big, whole-face smile. I explained that Bryer's body doesn't work like ours, so she is still learning to do things that we do. I told her that she understands almost everything we tell her and she answers questions to tell us what she needs. With a little explanation, I could see the mother's face soften and I knew I was on safe ground with her too. For some reason it was easier to talk to the curious little girl than the grown mom.
After a couple questions from the mom and quick answers about what cerebral palsy is, we walked away and found ourselves at the back of the line. I hope that little girl will stare next time - and then I hope her mom helps her follow it up with a hello. I hope she will step outside her comfort zone and make friends with someone in her school down the road that has special needs. I hope her mom won't feel ashamed that she caught her daughter pointing, but instead, honors that curiosity and sees it as an opportunity to get to know someone that may look or act differently than she does. Everyone deserves kindness. Everyone deserves a friend, even if it starts by staring and just being curious.
As a special needs mom, I love it when people ask about my daughter! I am not offended in the slightest and welcome an opportunity, as most moms do, to talk about my pride and joy! It's more awkward to avoid the obvious and wonder what someone thinks. Before I was a special needs mom, I always wondered what the 'right way' to ask about someone was. Now I know a friendly hello or a sincere compliment is all it takes and conversation will follow. I've had other special needs parents ask, "What is her diagnoses?" which is a tactful way to want to know more.
Bryer mastered sitting while holding on to the cart just before her long legs grew out of it. These days she rides in the cart for most shopping trips - and is a good sport to organize things that I pile on top of her legs. It's easier than maneuvering her wheelchair while pulling a full cart behind me.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
*****
I have had the incredible experience to meet two people that helped me appreciate my experience in "Holland." We attended a beautiful wedding. Every decoration, every piece of lace, every letter on every name tag was dripping with thoughtfulness. It wasn't overdone or flashy, but was in perfect harmony with the bride and groom's fun personalities.
It was a little like Italy from the poem. Perfectly planned.
I sat holding Bryer who was hot, sweaty, and awkward in her post-op brace, her damp hair sticking to my face. I did my best to fan her to keep her cool, but let's just say (with the best sense of humor)
It Just Was Not Italy.
At the reception I had someone introduce herself and want to meet Bryer in person. It was like she had read brochures about Holland and wanted a taste of it herself. She was so sincere and warm, although she pointed out that she felt strange following The Briar Effect and trying to find a way to introduce herself.
Bryer was sweaty and not too social in her thick hip brace, but I was reminded again that Holland is where I belong. It makes my day for someone to want to meet Bryer and see her the way we see her.
Later on in the evening, I met another mom - one that had also taken "a trip to Holland!" Our brief conversation was just what I needed. There's a bond between people that have 'lived' in the same place. At first she just pointed out how beautiful Bryer was and asked about her diagnoses, but once she revealed that she had been on her own 'trip to Holland,' well I wanted to hug this near-stranger right then and there!
I am blessed to have 4 older kids and got to experience 'Italy' with all of them. While that was where I was supposed to be at that time in my life, there's not a doubt in my mind that we were asked to take this family trip to 'Holland' for a reason. Sometimes it's hot, and sticky, and stressful. But often times I hear her giggle or watch her master a new skill, and I feel bad for families that don't have this opportunity like we do of having an angel living right in our midst. 'Holland' is a lot of hard work for sure, but all great things are worth working for.
Once in a while Jason and I get to escape. We go on a date in the evening, or a yearly work trip to a far away place. We are pampered and waited on. People make our beds, serve us food, clean up our mess, and we pretend we're in 'Italy' - but the whole time our hearts long for 'Holland.' While it's not where we expected our flight plans to take us, it's just not a place I would give up for anything.
As a mom of 5 kids - 3 of them being active boys, I am always looking for ways to apply the gospel to their lives in a 'manly' kind of way. The scriptures don't mention the word 'basketball,' or 'weight lifting' or 'March Madness.' They DO use action words like 'fishing,' 'building,' and 'swords'... you know, words a tough guy can understand! I'm always satisfied when they connect to something within the gospel they can apply to their lives.
We had our church missionaries over for dinner a few months ago. They always leave us with some sort of devotional or verse of scripture to think about, so one missionary read a few verses of scripture and the other missionary followed up with applying it to our lives. The second missionary had connected well with our family, being a hunter and basketball player himself before he came into the mission field. He applied the scripture by saying that Heavenly Father is like our coach. He can see the court as a whole. He can see what connections need to be made, who needs to go where, and what spots need filled. He sees the big picture.
My boys' ears perked up with the application to basketball. And what this missionary shared with our family was inspired and timely.
In the time since then, our family has participated in numerous basketball tournaments. One exciting one was an extremely close game with the only team we hadn't beat all season. It also happened to be the championship game! As the clock wound down, the game ended in a tie, forcing it into overtime. The crowd was obnoxiously loud with signs waving, screaming, and cheering.
I looked to their coach, who was giving instructions to the players to set up on the court. He was not in the same position as the player on the court with an opponent in his face, or the one scrambling to get out of a double team. He saw the big picture. He knew when and where the passes needed to be, the plays they needed to run, and the defense they would need to have to overcome the opponent.
What's more... From where I sat, I could see the coach's lips moving, but could not hear a single word he was saying while I was sitting in the crowd, most of who were on their feet cheering loudly. My mom leaned over to me and asked, "Can they even hear what he's saying?!"
Those boys had gone to practice in a quiet gym every day for the past 2 months, training their ears to hear what their coach had to say. Spots in their brains had been reserved for the frequency of his voice's sound waves. They had played in other close games and practiced tuning into his voice amidst the distractions and cheers. When the time came for them to meet head on in the championship game, they were prepared.
We also have times that we can practice listening to our coach - our Heavenly Father. It may be in church, while we read our scriptures, when we find a quiet time to pray, as we turn the radio off when we drive, or think out loud. Those are the times we train our ears and hearts to listen to what God has for us - what He needs us to do and where He needs us to be.
Then we go into the crazy world of carpools and school or work and rushing to and from appointments. Our ears and hearts can still be in tune for what He needs from us. If we have practiced tuning in to Him in our quiet places, we can hear and understand our Heavenly Father (our coach) from the sidelines directing us.
At one point in the championship game, the coach got very upset with a player that was out of position and because of it, they gave up a basket and the lead. The coach was jumping around and yelling. My mom leaned over to me again and said, "Is that really necessary?" Being in positions like this myself in tight scoring games, I told her it was absolutely necessary that he let that boy know where he needed to be exactly when he needed him to be in a particular spot on the floor.
While I don't picture Heavenly Father frantically jumping around, He does remind us when we are 'out of position.' He has sent the Holy Ghost to help us decipher those times as a way to get us back on track to where we are supposed to be. As my mom asked, "Is that really necessary?" Absolutely! He needs us! AND... We are in the last days. This is when it gets heated. This is the 'overtime' before the Savior comes. This is when He saves his best players to be on the floor when the going gets tough. THIS is what it's all about! This is what we practice and pray for, to be a part of - not to be sitting the bench for pete's sake!
In the end (my son pointed out that the ending is the best part and I better not leave it out), our team came out on top... In overtime... By just 2 points... and also earned the Sportsmanship Award for the year. Ask any of those boys if it was worth all the time, effort, and sacrifice and I know what their answer would be.
If you missed the Thank You video for those that bought shirts...
We made it to the 4 week post-op mark! So, what has surgery and 4 weeks in foot casts and a body brace brought us? Let me tell you...
Morning stretches with BOTH arms - something she would rarely do before. We know the left side of her brain is affected because that's what tells the right side of the body what to do. I have been reading an amazing book called "The Brain That Changes Itself" and how to rewire the brain. Let me say that again - REWIRE the brain! Once thought to have a certain number of cells to learn with, Bryer is proof of brain plasticity - it can change! This picture has "Wake Up and Be Different" written all over it, RIGHT?!
Nothing better than giggle therapy of dropping toys on your brother's head! Practice of opening and closing her hands on target - things we don't think of having to learn.
God picked these siblings just for Bryer - and picked Bryer just for her siblings!
I caught this very sweet picture of Piper (in the pink hat) explaining to her friend what Cerebral Palsy is, how Bryer's brain works, and what the surgery has done for her. I'm not gonna lie - to see her handle it with such grace, accurate information, and speak in a way that kids understand - man, it just melts my heart until it leaks out of my eyes!
Sitting around in a brace and casts is not much fun - unless your brother builds you a pillow fort to play in!
...Or if you get to do fun therapy like this! It might be mistaken for fun, but there's actually a lot of vestibular input and proprioception going on here - training the body, brain, and inner ear to know where it's at in space and how to find balance in it.
There won't be swimming for Bryer all summer, so Piper, Walker, and I made her this water pillow with plastic and packing tape. We put floaty toys in it to play with so she could feel a little like she was swimming.
More entertainment on the couch - "Guess That Voice" (or breathing, feeling hair, etc.) without seeing the face. Again - check out the right hand reaching instead of the left. Not a full time improvement, but an improvement nonetheless. A-Mazing!
More hammock play with concentration - and holding on with both hands, thumbs opposing, to get pulled to swing. The hair can get a little out of control in the hammock!
4 of our 5 kids enjoyed the hammocks on this day. They had to use teamwork to get everyone swinging without anyone letting go - no matter the position they were in!
Finally, the big day arrived! 28 days post op means the casts can come off and we get a peek at those new feet! Our other kids might have been just as excited as we were - it's like Christmas unwrapping a new present!
Real quick first, here's a before shot in the hotel the night before surgery. Pointy ballerina toes that were so tight I could not get them to a 90 degree angle no matter how hard I tried. I couldn't even bend them with her legs straight - I'd have to bend her knee, and then bend at her ankle, but even that wasn't much.
And Ta-Da! Let me introduce you to her new cast-free feet! At rest, they look like this, but we can get them beyond 90 degrees with her feet flat on the floor! Toe stretching is in her future to keep those tootsies extended too!
It's amazing to me that these little pokes in the back of her leg could have that huge of an effect. I love the phrase "least evasive."
She has had a few muscle spasms, especially right after they took her casts off. A Costco run after the doctor is not the most convenient place for painful spasms, but Walker was such a good help to climb in the cart and keep her feet flexed for her while we finished our shopping. As the doctor has requested, she'll wear her casts (or we can take them off and keep her feet at 90 degrees) until her new braces come in next week. It will help keep the spasms down and keep her feet flexed in the position we need them.
While she was fitted for her foot braces (afo's) we also had some adjustments made to her body brace (see the red mark on her leg?!). She got about 10 minutes without any casts and brace! Her body feels so loose and wobbly - like a baby learning to sit and learn to train those muscles in a whole new way. She did put both hands down in front of her and then pushed through both arms to sit up tall - another new skill she couldn't do before since her arms were tight and her legs wanted to stick straight out together and make the rest of her body go into pencil-mode. If she wanted to sit up before, we'd have to cross her legs into a tight criss-cross applesauce for her to find her balance.
Now to put the brace and casts back on. :-)
This little girl simply amazes me!
By the request of blog readers, I am going to try to get back on my Sunday posts - whether that's updates on Bryer or other thoughts and stories that move through my brain.
