I’ve written before how the early years are some of the hardest when you are the parent of a child born with developmental delays. In my experience, the years up until about age four were the worst, because I was still coming to grips with the death of my dreams (foolishly trying to read the future!), and kids develop so rapidly during that time that the differences between my kid and the typical kids seemed more pronounced.
Eventually, the rest of the kids slow down a little, and even if your kid isn’t catching up, the slower pace and your evolved level of acceptance make things easier.
But that doesn’t mean the hard ends.
One day, your squeezable preschooler becomes a tween, and then a teen, and you realize that just because you escaped the comparison trap doesn’t mean you aren’t still traveling through a minefield. “It’s always something!” isn’t a flippant comment made because the toilet overflowed, the table leg broke, or your computer has a virus. Something really is around every corner, preparing to blow your carefully constructed way of life to bits. You try to keep your eyes on the path directly in front of you so those mines don’t scare you so much, but the downside of that approach is that when the mine blows, you aren’t ready for it.
Like now.
Several weeks ago, Sarah Kate developed tendinitis. Her ankle was swollen and tender, but a week of Aleve (on the advice of a doctor) seemed to do the trick. The ankle reverted back to its original state, and we went on about our business. The incident never completely left my mind, though, because I didn’t know what caused it and I did know she hasn’t been swimming at all and has only cycled sporadically.
Her physical therapist released her in the fall because she was swimming so much. Even though her progress was slow, she was progressing, but after a full summer and fall of swim, I was nervous about how Sarah Kate would fare without the pool. Knowing how well she did when she was riding the bike a lot, we bought a stationary bike for her room in mid-November and gave her a smart TV for Christmas to keep her entertained while she rode.
She was gung-ho then, but it didn’t last.
For several weeks now, she hasn’t ridden much and generally only when we nag her about it. We have rules in our home to guide behavior, but we also expect that a thirteen year old should manage herself and her commitments – and learn about consequences when she doesn’t follow through on things. We explain to her why it’s important to ride the bike, or practice her clarinet, or prepare in advance for a solo audition, but we expect her to choose whether to ride, or practice, or prepare, without me becoming a Drill Sergeant as soon as the afternoon bell rings.
Now we’re facing unpleasant consequences.
For a couple of days, Sarah Kate has complained about her knee hurting, and she’s stumbled a few times. I gave her some Aleve and told her to try loosening up by riding the bike easy for ten minutes or so at a time and then stretching.
On Wednesday, she couldn’t walk into the kitchen for breakfast without holding onto the wall, counter, or table, so we decided on the fly that she would have to use her wheelchair at school today. I called our neighbor and “borrowed” her daughter to ride to school with us and help Sarah Kate into the building with her backpack, clarinet, and a giant project board. The two girls don’t have any classes together, so I told Sarah Kate she’d be on her own to get help the rest of the day, and I drove away.
I should be concerned, but instead I’m angry.
Why does she have to have so many physical problems now? Almost two years out from surgery, with the major growth spurt behind her, I thought she’d be in better shape. Seventh is one of the toughest grades (and I don’t mean academics) – couldn’t we catch a break this year? Of course, it’s hard to catch a break if you aren’t doing the things you need to do to keep the wolves at bay. Which brings me to…
How do I motivate her to keep moving? Many adults with no physical limitations struggle with maintaining an exercise habit. How do I convince a teenager who hasn’t yet grasped her own mortality? I can become Drill Sergeant Mom and make her bike and stretch and go to PT right now, when she’s thirteen, but what about when she’s nineteen? Or 29? Or 39? Who will force her to do those things then?
I even wonder if she means it when she says she doesn’t want to use the wheelchair all the time.
She could choose to use her wheelchair at school and around town instead of walking. Lots of people don’t have a choice, and they do just fine relying on a chair. Considered in a vacuum with only the knowledge of her physical limitations and a wheelchair that allows her to do things she couldn’t otherwise do, a full-time wheelchair is a pretty great option – especially when it’s a cute, colorful, custom one like hers.
But if that’s going to be her future, why did we bother with trying to improve her walking? The rhizotomy was a good decision, because it provided benefits other than just walking, but what about the major orthopedic surgery cocktail two years ago? What was the point of cutting out wedges of bones and shortening tendons and missing six weeks of school and spending a whole summer crying through daily rehab? We could have taken a different path – the wheelchair path – and eliminated all of it.
Perhaps these back-to-back incidents of pain in her ankle and knee are just a coincidence, and perhaps she’ll be back to her old self in a few days. Whatever is going on with her knee might be no big deal…this time.
But it feels like the wheels are coming off again.
The last time, I was taken by surprise, but it wasn’t because no one warned us. I had chosen to believe that she would be the exception – the kid whose determined attitude would cause her to slog through the big-time growth spurt and come out on the other end without losing a thing. Her body would fight her, but she would fight back and win. But she lost, anyway.
What if she doesn’t want to fight anymore?
Background Image Courtesy christopher cebela/flickr
The “hard doesn’t end” but you have to keep fighting the good fight. I know exactly how you feel. Thanks for posting this! She will fight. It’s not in her to give up.
God is still on the throne and prayer changes things. This world and the things of it can really get us down but don’t forget who is most powerful in the entire universe and who has answers no one can imagine. Let your faith rise up to combat this defeat you are feeling. Trust Him with all of these questions and don’t let yourself shoulder the responsibility of answers!
The second part of that last sentence, “…and don’t let yourself shoulder the responsibility of answers!” is something I need to be told Every. Single. Day.
I believe I had mentioned something when she was getting her chair, something along the lines of “I hope the chair does not become too easy” I fear now that maybe that is just what is happening; a little easier to keep up with friends; a little easier not to have pain; a little easier live. . . But that easier could have drawbacks in the long run, it’s been said, and proven for years, “if you don’t use it, you will loose it”
Just a thought, if Sarah Kate is having some walking issues, maybe a pair of forearm crutches, or just a cane (or 2) may be a better “strengthening” option for her. Though, I am not sure how practical that is.
I will keep you all in prayer and pray that the Lord put’s on all hearts the best way to proceed.
I had forgotten that, but yes, I think you did say that. She doesn’t use it very often – the only times in recent history prior to this week were an all-day school field trip and our trip to Universal. I hate to sell her short, because I don’t think she necessarily prefers to use the chair, but I wonder if she prefers to walk because she really prefers to walk, or because she thinks she is “supposed to” prefer to walk. It will be interesting to see what she has to say when she reads this post – she subscribes to the blog but she does not read the posts until after they are live.
I will have to keep in mind that she reads your blog and the comments and word appropriately so that I am speaking to her and not about her.
HA! I think it’s fine to write things however you want to write them. I have no idea if she reads the comments or not – she has never mentioned them, but she doesn’t always mention reading the post itself, so…
Does she know any adults with CP that could give her insight about what is going to happen to her body if she doesn’t excercise and stretch? Hearing from someone with personal experience could have a big impact on her.
Yes, Meg, we do have a couple of female friends who have CP. One is Sarah Perkins, who blogs here: https://sarahkperkins.wordpress.com/ and another is a lady who is from the area where her grandparents live. My mother-in-law sees her a lot, and I imagine when she reads this post later today she will immediately grab her and ask her what to do. 😉
First of all Sarah Kate is a remarkable young lady. I was fortunate enough to get to see her swim in the pool during the meets first hand and she is amazing! As for the teenage years it is difficult. Having a 17, 14, and a 13 year old who are in sports and/or band they do reach a point when they just want to be normal teenagers. Jeanne, who loved swimming and had a blast swimming for the high school, has even decided swimming all year was not fun. She has not been back in the pool since December. I think it is an age thing honestly. We want to them to do activities knowing it is good for them but don’t want to hound them constantly. She is a teenager and I know her situation is a little different but she is normal when it comes to being a normal teenager. Just wait! Wait till she is in high school and the fun really begins. 🙂 Sarah Kate is going to do fine as she grows up. She is amazing young lady and has an amazing role models-her parents! And if she wants to swim she can always join Jeanne when she goes back for long course practice in April. Jeanne would love to have a friend up at SWAT and coach is awesome! You are doing a great job as a mom! Sarah Kate is amazing and inspiration to all of her friends at school.
Thank you so much, Shelley! It has been so wonderful getting to know you and Jeanne this year. I think Jeanne was Sarah Kate’s biggest fan at the meets – she rallied the troops for her events!
I’m sorry, I have no advice to offer, just hugs and good thoughts for both of you. As one of the adults who struggles to fit in the daily exercise (and fails more often than I’d like to admit) I can’t imagine you’re feeling, SK, as you work through this. So, here I am, sending big hugs and good thoughts!!!
She’s thirteen. I didn’t want to stretch or do anything to help my body at thirteen, either. I still don’t, sometimes. I made my own choices and she will too. You can’t push her into doing anything, and whatever she decides will be fine. She might not want to use the chair a lot now, and she may not ever, which is fine. She wants to keep walking right now, and that’s why you did the surgery.
As kids with CP, we’re always being told that we need to stretch, we need to exercise, if we want to keep walking and be free of pain. It’s overwhelming when we just want to be kids, and seventh grade is a particularly hard age in all sorts of ways. My mobility has declined a lot in the past ten years (I’m 23 now) and I’m facing a lot more pain. Could that have been avoided if I’d stretched and done my exercises like a good little PT patient? Probably. But I made my decisions, and I’m okay with the way things have turned out. I walk on my own in the house and I use a variety of mobility aids (including a wheelchair/motorized scooter) outside the house. Sometimes I walk, sometimes I don’t, and it’s all okay. Sarah Kate will make her own decisions, now and in the future, about her mobility and her exercise. And if she wants to stretch more, she’ll find ways to make it happen on her own.
I’ve said this before, but if Sarah Kate ever wants to talk to someone who’s been where she is right now, I”m more than happy to talk to her. I would’ve killed to talk to someone in their 20s with a similar level of CP to me when I was 13.
Thanks, Cara! I will share the offer with her and see what she says. I know that I appreciate your perspective.
Not every battle is worth fighting. I’ve doggedly fought battles I should not have ventured into. It’s a waste of time and energy and I hope no one else makes the same mistake I did.
SK’s age is smack dab in the middle of both of my kids, and while neither one has CP she still sounds a lot like them. My son (just turned 14, also born in 2002), had knee surgery last year due to a cartilage tear. He liked PT back then because it helped him get on his feet again but was told that because he has a “poor core” and tight hamstrings due to the fact that he just keeps growing so fast (6 inches in the past year and is 5’11” with no end in sight at the moment!) that he would need to continue to be motivated at home to do his exercises, both stretching and core strengthening. Does he? No. Do I suggest it? Yes. Like you though I don’t push it as I know that unless he sees the benefit there may not really be a benefit. It has caught up to him a little during the beginning of spring track season here as he has been complaining a lot of his hamstrings. Does that change his desire to do daily stretching? Not in the least.
My daughter who is 12 1/2 also struggles with tight hamstrings and we discovered last summer that she has plantar fasciitis in both feet. Something about her not using her calf muscles enough? Anyway, she is supposed to stretch those feeties & muscles daily, but does she? Nope. Does she really want to? Nope. Does she have issues with her feet more because of it. Of Course! She also has a dairy allergy and is not supposed to have cheese (or other dairy but cheese is her favorite) without taking a lactaid first. Will she? No. She hates it. It’s just swallowing a pill but she hates it. She eats the cheese pizza at a friend’s party and suffers for days with a stomach ache, but will turn around and do it again the next time.
I know my children’s ailments are not the same as SK and yet they just sound so similar in attitude that I could not help but join in here. I really think it’s the age. Have you talked to her? As I was typing this I was wondering myself if their dad and I didn’t need to sit down and have a heart to heart with them individually about these things as in some ways there could be some real repercussions I’d rather avoid. Ultimately I feel the same as you that they do need at some point to learn to manage these things on their own, but maybe there are times when they wouldn’t mind the guidance as long as it’s not “mom nagging” them again. And maybe together we could figure out a plan that will help them remember to just plain do it.
You know that your baby’s life sounds pretty busy (I know my jr. higher’s have a lot they are involved in besides school) and when you are tired sometimes even the necessary things just don’t seem like they are worth the effort.
Just my two cents!
I actually think your kids sound exactly like her! I do think it’s the age and I’m sure every parent facing similar circumstances with a teen/tween feels the way we do. I guess in my mind it’s “different” because the stakes seem so high for my own daughter, but that may just be me freaking out. 😉 We have talked to her, but what we’re finding is that it seems she needs to see consequences to make a change. Yesterday was the induction for National Junior Honor Society at her school – a nice ceremony with each inductee being introduced individually and walking across the stage. She couldn’t use the chair and even though she was walking a little more than she had the day before, even walking across was a little precarious, so she had to walk across on the floor in front of the stage. I don’t think she cared for that at all. Consequences.
(And for anyone who might be reading this comment and wondering what Sarah Kate would think, we’ve already had this conversation)
Any possibility of year round swimming? My daughter swims all year with the exception of the “A” months (April and August).
And just throwing out ideas…what about a Fitbit or something similar to encourage the bicycle? Maybe a small agreed upon extrinsic reward if she makes a weekly goal? I love your philosophy of individual responsibility, but agree with you that the stakes of not complying seem higher in your case. I unashamedly bribed my child who has dyslexia to practice her reading exercises for years because 1) I knew how important reading was and 2) I knew it was so hard for her that she was unlikely to feel any short term intrinsic goals. I don’t know if I was right or wrong but today she can read, so I can live with it.
There are a couple of club swim options in our area – she actually swam for one of them several years ago and the coach was very good to her. The problem with club swim is that the kids who are in it at her age (and up) and usually highly competitive swimmers – many of them will go on to swim in college – and that’s a tough environment for her to be in. It also isn’t cheap, though for her it would be less expensive than for me because it’s unlikely we would travel for meets like the other families. The other option is that she could swim on her own at the local rec center in the afternoons, but she would need to be disciplined in what she did those days, as she wouldn’t have a coach. I could do it, in theory, but I’m not much of a swimmer plus Nathan would be there – not ideal! Oh, and she already has a Fitbit…her grandparents bought her one after her surgery to encourage her to be more active.
Neither rewards nor punishments have been very effective. There are very few things that are worth it to her to do something repeatedly, and she rides out punishments like they are no big deal. Very frustrating!
So frustrating! If you can’t bribe her, I think you’ll have to make exercise fun. Does the local YMCA have a swim team? That is who we have our daughter swimming with specifically because it isn’t as competition oriented as the swim clubs. Also, it may take a little time, but perhaps you could talk to the aquatics director at your rec center or Y about creating a class. A local center to us has a twice weekly competive swimming class where they just work on swim technique. I’ve also convinced our Y to try a swim games class for 8-12 yr olds who can swim well. They will alternate water polo, fun races, water basketball, water aerobics, etc. A rec class in the water. My middle child has no interest in racing but loves the water so I’m hoping it will be a way to encourage physical activity with her. Sarah Kate may also be old enough to join a water aerobics class. Maybe with a couple of friends? A teen water aerobics class? I don’t know, but I think your solution may lie in the water. If a perfect option doesn’t already exist, I’d talk to any and all aquatic directors. They may be able to help.
We live in an area with both a lot of retirees and a high level of youth sports. Most of the local rec activities outside of regular sports seasons are geared toward active retirees. Technically, she could do water aerobics or maybe even swim with the masters team, but the times conflict with school because they are scheduled around retirees who don’t work or go to school. The kids who swim year round all do club swim.