We have a lot of body armor. Many days seem like we are preparing for battle with all the armor and paraphernalia we have to put on. This week we added some new pieces, so I’ve been thinking a lot about it all and my love/hate relationship with our armor.
Ben’s armor consists of AFOs (ankle-foot orthosis). He got his first pair of these at 18 months old. At that age he wore something called Sure Steps. These are a small, plastic brace that are molded to one’s unique foot. Ben has very low muscle tone or hypotonia. He also pronates his ankle inward. If you watch him walk barefoot, you might find yourself perplexed as to how he walks at all. It’s like his inner-side of his ankle is actually touching the ground…on both feet. He also has very flat feet. The flattest feet that probably exist. His ankle and foot anatomy and function seem to really amaze doctors and orthopedic surgeons. Not necessarily something to be proud of…unless you have Menkes Disease, maybe.
When Ben first got these AFOs in the spring of 2009, I really struggled. These little braces with their cute little sports decoration were the first visual cue to the outside world that Ben was different…a Scarlet Letter, if you will. It was “one more thing.” They caused many questions from curious kids along the way. Just as he was starting to stand and cruise, and have a real need for shoes, these braces meant that shoe shopping would never be the same. I remember calling my mom in a panic because we had no socks or shoes that would fit under and over the brace. And in “those days,” online shopping was not as <ah-hem> easy as it is today. I had not found Amazon.com to save the day yet. My personal shopper, Ben’s Mom Mom, went on a mission and came back with about 25 pairs of socks and 5 pairs of shoes…pretty much the same as Amazon but without the yearly “Prime” membership fee. It wasn’t easy, but we found something to fit. And slowly, over the years, these braces went from something I hated, to something I am so grateful for. They have grown in sizes and types many times over. Now he wears an SMO. The transition to this brace, right before kindergarten was another trying time. We tried about 5 pairs of shoes before finding ones that worked. In case you’re in the market, New Balance seems to work the best. They have an easy-to-remove insole, come in extra wide sizes, and are trendy and non-medicinal looking. They’re cool. They make him look cool.
I love his braces now. They helped him learn to walk. They helped him to be steady. They helped him to walk longer distances, climb taller slides, and navigate a large school building over the last 6 years.
While they help him to be the boy he is, and while I don’t like sending him out into his world without them, they are still a big pain in the butt. They require an XW shoe, only to be found on my precious Amazon. And only sneakers fit. No Crocs. No flipflops. No sandals. No dress shoes. Just sneakers. Also, they require a taller sock. Great in these days of cool, neon, tall basketball socks, but not when you’re a foot shorter than most of your peers and therefore have much smaller feet that don’t fit the fun socks yet. He has callouses on his feet because of his braces. And when he wants to go outside at 4:45pm while I’m making dinner, his sister is crying and his dad is out of town for work, we have to stop to put his braces on. He can’t do this on his own yet because of his limited dexterity and hand strength. And when you go on a field trip to a pumpkin patch that requires a ton of walking and a need for the precious braces, it’s a real pain and a sign of differences when your mom has to help you take your braces off to go jump on the bouncing pillow with all your friends (and give said mom a heart-attack because you are brace-less)…it well, sucks!
During the Turkey Trot at school, this past November, Ben was having a really hard time participating in the run. His awesome adaptive PE teacher was with him every step of the laborious run. Ben was complaining but didn’t want to stop. But he couldn’t go further either. He begged his teacher to let him take his braces off. His great teacher hesitated for a long time, but could tell Ben really wanted this. The teacher allowed him to lose the braces and Ben took OFF! He ran so fast, completed the race, and felt awesome about it…without his braces. While the braces, well, brace and support his foot, they are restrictive. Ben knows himself, fought for himself, and succeeded without his armor when he needed to. Proud Mama.
Ben’s braces are not easy. But they are his armor. He needs them. They help him to succeed. And we love them…well, I do…not so sure about him. But he accepts them.
Kelsey currently wins for having the most armor in the family and she too, needs AFOs. When she was 15 months old, we took her to Ben’s orthopedist under her physical therapist’s suggestion. To our relief, the orthopedist first said Kelsey didn’t need a brace. She was still within normal limits for not walking, especially since she was five weeks early and had many major medical hiccups along the way to keep her from developing on a normal timeline. This was great because while armor is so helpful, it’s a much easier world to live in if you don’t need it…or at least that’s the way it looks to a mom looking in from the other side.
But, three months later, when Kelsey still wasn’t walking and showed weakness in her trunk, hips, and legs, the same doctor prescribed AFOs. I was devastated. Kelsey is a girl. When I pictured my baby girl, I had visions like every girly mom like me does…cute shoes, dresses, skinny jeans and leggings, sandals and tights (not necessarily together!). I did not picture tall socks, a plastic calf-high brace and clunky athletic shoes. And I knew what AFOs meant. I knew what to expect (or so I thought). I knew about the shoe search, the clothing restrictions, the Scarlet Letter.
But, like everything else, it was something we had to do, so we did. Kelsey was casted, cute colors were picked for the straps and the expensive, unwanted braces were ordered. A few hundred dollars and dozens of shoes later and we have a pair of cute shoes to fit (New Balance, no less!). But, unlike her brother, Kelsey’s braces have not been as magical. Her foot, no matter who puts the AFO on, slips up and out of the brace until they become not only useless, but a walking hazard. I tried. Her therapists tried. Dave tried. Nothing seemed to work. So, a new pair (different design) has been ordered and will hopefully fix the problem. Hopefully the shoes will still fit, and more importantly, the new AFO will help her to get the stability she needs to walk for the first time at almost two years old. Stay tuned…
In addition to her AFOs, Kelsey wears glasses. She was first prescribed glasses at 5 months old for astigmatism, (crossing eyes), and near-sightedness. Her prescription, acuity, and strabismus have all changed, but she still wears glasses. She is on her second pair (third prescription) of glasses and we just bought a third pair. This new pair has transition lenses (for sunlight protection) in a new fun color. We also thought it a good idea to have a back-up pair of glasses. A very expensive pair of uncovered-by-insurance back-up pair of glasses, but nevertheless, it was something we felt she needed.
The glasses journey has not been an easy one. You can read more about that here and here, if you haven’t yet. Right now, Miss Thing has been accepting her specs. About three weeks ago, she got a new prescription to help her eyes to work binocularly, instead of using one for distance and one for up-close. Then two weeks ago, her developmental optometrist put some opaque film on the inner corners of glasses. You can see it in the purple frames above, as well. This is to help with any double vision if her eyes do start to converge inward. At first these changes caused Kelsey to take the glasses off a lot more than she had with her previous glasses (after months and months…a year?… of trying to keep them on her for even 2 minutes). But, recently they are staying on for longer stretches, which is reassuring…and one less thing to stress over at the moment.
The AFO braces both kids wear (or should be wearing) and Kelsey’s glasses are their main pieces of body armor that help them to be stronger and to develop like their typically-functioning peers. Most days I put them all on and go about our day, thankful that they are helping, but there are other days when all the gear is a real drag and I’d like to throw it all in a big fire! This week, during therapy and doctor appointments, I got to thinking a lot about kids born long before Ben and Kelsey with similar ailments…or worse…that didn’t have access to all this equipment and therapy. And I feel lucky that they were born when they were in the very modern world of medical science advances.
But like I said, it’s not all sunshine and roses. We have not hit the age of bullying yet, and I fear for what’s ahead with their armor and differences and how they will be a ‘reason’ to tease my babies. I know it’s coming. I’m so thankful for Ben’s school community that have known him and seen him in the halls since he was 3 years old. He is loved and adored and has lots of friends. But I know things won’t always be as “easy.”
I don’t have any major medical needs like my children (although I do wear glasses and contacts!) but I definitely have armor to get through my day. My first piece of necessary equipment for our everyday battles of bus stop drop offs and pick ups, errands, and therapy appointments is our chariot…The Shaggin’ Wagon. I drive a Toyota Sienna mini-van and I am damn proud of it! I never had an aversion to mini-vans growing up or in my 20s and early 30s like most of my friends. A van was always a symbol of a big family to me…which was always a dream of mine (and by ‘big,’ I find four to be perfectly big enough!). I am an only child and we never had any need for a mini-van. I always secretly loved the idea of a van, because to me it meant lots of bodies to fill the many seats. I liked that vision…still do. We bought the van when I was pregnant with Kelsey but it was much more of a necessity for Ben than it was for us or our baby-to-be. Ben can’t get in and out of cars like typical seven year olds. He has trouble opening and closing regular car doors. He can’t buckle his own seat-belt because of his fine-motor limitations (although this is a summer goal for us!). The van is so great for Ben. With push button doors, low entry levels, and many other bells and whistles, the van makes life so much easier. So I guess the van is armor for Ben too! Even with Ben in school most of the days and weeks, the van is part of my armor that helps me get through each day. When Dave suggests I take his nicer, newer, smaller, sportier car if the occasion suits it, I get admittedly a little anxious that life will be harder in the non-van.
Besides the van, find it impossible to survive my life without an awesome diaper bag. After a handful of doctor’s appointments that consisted of full wardrobe changes (and even a stroller purchase), I knew I needed a new bag of tricks. My old bag wasn’t working. A couple weeks ago I found this one and I’m in love. I highly recommend buying it on Amazon.* It’s lightweight, has tons of functional pockets, and isn’t meant to be a diaper bag…which always seem to work better for some reason. And it’s pretty cute and matches everything. Win! I might not be able to control a lot of this life I’ve got going here, but I can control my accessories!! Under our armor, we are four pretty strong people. We’ve got to be…there’s no other choice. But a little extra help from ankle braces, glasses, and cute purses sure helps.
*I have not been paid by Amazon.com to write about my love for them.