The Hard Place

The expression is “Caught Between a Rock and a Hard Place.”

The reality is choosing between two sucky options.

One of the worst parts of being Charlie’s mom is the decisions. I attend most doctor and therapy appointments alone. I am the researcher of therapies, diagnoses, and drugs–I’ve dragged my baby to Canada, I’ve found an off-the-wall therapy offered in the French Quarter, I’ve changed medications, and spoken up time and time again in doctor’s offices. I am the one who spends sometimes hours on the computer trying to find the right answers and digging when the answers I find are too pat.

But sometimes there’s no great option–there’s no clear choice–but there’s still a decision to be made.

And a jury waiting to pass judgment on your decision.

Charlie is getting Botox in his hamstrings tomorrow. It’s a procedure that his doctor (physiatrist) recommended over a year ago, but due to insurance denials, we’re just now moving forward with it. It is not the easiest decision I’ve ever made, but I do feel that they’ve gotten worse with a recent growth spurt. I could do nothing, but I’m afraid of the stress being put on his hips. Too much stress can result in dislocation and a fast-track to orthopedic surgery. A doctor we know personally has suggested that Botox could potentially buy us years of not having to worry about that. I also don’t like the other option we’ve been given (neither does the doctor) of taking an oral muscle relaxer.

Charlie has been evaluated twice for this procedure. I have covered every possible angle in discussion with the doctor and other parents–pain, possible results, activity after, potential side effects and on and on. I’ve also talked with other doctors I know and several therapists. I’ve read the blog posts of other parents and re-read comments on this blog about their experiences with Botox.

I have done my homework.

But in the back of mind is the worry–if something goes wrong–it will be all my fault. Last year when I decided that we needed to try a new seizure medication for Charlie, the responsibility was mine. More than once I played worst-case scenarios in my head–a massive seizure. Or worse. Again, it would have been my fault.

boy smiles at camera

Changing medications was one of the best decisions I’ve made for Charlie so far–the results were almost instantaneous–he’s more alert, more interested in his environment, more aware of what’s going on around him, and he spends a lot more time looking around and taking everything in. Also, we saw absolutely no change in seizure activity.

It was a good decision and I’m glad we went through with it. I hope the Botox decision goes the same way–gives Charlie some relief from muscle tightness that sometimes crops up at night, enables him to strengthen his legs more,  and keeps us off the list for major surgery at this time. I could be wrong–it could be a complete disaster and I know that.

I’m hoping for the best, though. Hoping that injecting toxins into my child’s body is the right choice in the long-run even though it’s hard to do in the short term. And I hope my family understands that I’m doing my best–not all the decisions are easy ones.

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Comments

  1. Oh, girl. I get it. It’s so hard to make these decisions. Of course we’ll do anything for our babies. I’ll be thinking of you guys and eagerly awaiting the results. I have faith. In you. the process, and in that swwet Charlie boy!!

  2. All my love and support headed right to you, Birdy. Charlie will be fine. Keep us posted.

  3. When you’re making what you feel is the best decision the only thing someone can fault you for is trying to do what’s best for Charlie (& if they do call me). The good thing about Botox is that it wears off……

    • Sarah: That’s what I keep telling myself–even if it’s a complete disaster, it’s not permanent.

  4. Carolyn says:

    You always make tough, but excellent choices for Charlie and this is just another one. I hope the experience is positive for both of you.

  5. “if something goes wrong–it will be all my fault.”

    Get that out of your head right now. I mean right now. Don’t you ever think that again when it comes to you making the best decision in the care for your son. We make decisions based on what doctors and specialists and Dr. Google say is safe. When we finally agonize enough and decide on a particular course of treatment, we are doing so in hopes of making their lives better.

    You take the calculated risk to get in the car with him almost every day. Someone swerves to miss a tree that fell in the road and hits your car and Charlie gets bruised up. Is that your fault because you took the risk of putting Charlie in the car? Of course not. You did your research and bought the best car seat, you hooked the car seat in correctly, you had him buckled in correctly, and you were driving safely. If you wanna blame anyone in this situation, blame the tree.

    If something goes wrong with the Botox, it’s nobody’s fault. You’re doing something to make Charlie’s life better.

    Sorry for the lecture. I just don’t want to see you blaming yourself. Because then I’ll have to start blaming myself for things that have gone wrong with Ace and I don’t wanna.

    • Stacey:
      Thanks for taking the time to give it to me straight. Like any special needs parent (I think), I sometimes have trouble separating myself from the process and recognizing that not everything can be controlled.

    • Stacey,
      Thanks for this comment. I was surprised when it made me cry…

  6. I know and your family knows that everything you do regarding Charlie you do with GREAT care and consideration of ALL options. You don’t take things lightly or take the doctor’s word for it. You find out for yourself and then act based on that. No matter what you are doing your best and everyone knows that.

    • I sure hope so. Sometimes I feel like I’m standing on the high dive by myself while everyone else watches.

  7. Katy,

    Alan had Botox for years and had no issues with it other than some injection site redness, but that passed in an hour or so. Now it doesn’t give him the range of motion it used to. So the physical therapists are really concentrating on keeping his legs and hamstrings as fluid as they can. He has already had his hamstrings cut a few years ago to release the tension on his ankles and calves and I really don’t want to see him go through something like that again. It really is a balancing act.

    • Oh, Becca, you have, of course, been here already. I’m sure that eventually we will have to make a decision about cutting the hamstrings, but for now I’m happy to only have to stress about Botox. The cruddy decisions never really stop, though.

  8. Always hope for the best.

  9. I KNOW you do your research. I hope you are able to be peaceful about your decision and that all turns out for THE best. You’re an amazing mother to Charlie.

    • Oh, Elaine. This is just a tough one for me–I always want to do the least possible intervention and this is a step up from that. I really do think it will be beneficial, though.

  10. What Stacey said, absolutely! Life is a series of risks, and you are a step up because of all the research you have done! Peyton had botox twice with no complications at all. I hope everything goes well for Charlie’s injections. Distraction was key for us, because they are over pretty quickly (and nitrous oxide definitely helped!). Best of luck and we’ll be thinking of you!

    • The iPad will be key for us–no better distraction! No nitrous, though–our doctor does numbing cream and that’s it.

  11. The best advice I was ever given about making medical decisions for Ben was “Make the decision that you would make for YOURSELF”. I thought this was great advice. And it’s pretty much how I make all medical decisions now. If I would do it and accept the risks for ME then it’s the right choice for him. He just can’t make the decisions for himself yet.

    I have to say that we LOVE botox…just wish it would last a bit longer. Definitely a better choice than surgery, in my opinion.

    • Cary, I love this advice. Love it, love it, love it. Really makes things a little clearer for a crazy person like me.

  12. We’re approaching this same hard place with Nate. We thought night-splinting would hold off botox but after two weeks, Nate couldn’t or wouldn’t tolerate the splinting and he and everyone else in the house were totally miserable and sleep deprived. My husband and I finally decided the night time misery and daytime insanity weren’t “worth it”. With botox looming in the future, however, I wonder if we tried hard enough with the splint and all the other preventative measures. I really hate that feeling of “if I only tried harder”.

    Anyway, good luck with Charlie. I’m interested to see how it goes.

    • Night splinting is terrible for us as well and Charlie is a horrible sleeper anyway. The combination is just not worth it. If you’re still worried about the Botox, you can always try doing some of the bracing during the day–like when he’s watching TV or eating dinner. Although I’m not sure how effective bracing really is anyway.

  13. Chrissi says:

    Good luck to you guys! I have a friend who has a son with CP who gets botox every six months and it makes such a huge difference in his quality of life; I hope your experience is the same!!

  14. It sounds to me like you have done all the research and you are making the best choice you can with the informations at hand. Just remember, sometimes things do work out!

    • Great point, Jenny! I was very happy with our med switch for Charlie–maybe this decision will go just as well.

  15. I feel for you. Even though our sons are vastly different I understand how easy it us to blame yourself. I am sitting here all teary after filling out what feels like the millionth form about my sons behavior, and diagnosis. His is mental and I take it as my fault. I read this and think man I wish Katy wouldn’t feel such fault she is doing what she thinks is best for her child. We are their moms and this is what we do, worry, fight and most of all wish we could take their burdens on our bodies instead.

    • Amazing how we allow ourselves to take all the credit for the things are kids do–even if we’re not around! I’m sorry you’re filling out loads of paperwork about your son–sometimes that stuff is just the worst.

  16. You have such a weight on your shoulders. Good luck tomorrow. Praying for you all.

  17. Words often fail me. Know that your family is in our prayers.

  18. The Botox will be great! The other thing to ask about is Phenol, we have done both Botox and Phenol since Zak was very young and we have found that we like the results of the Phenol better. Phenol is also something that works with the nerve instead of the muscle so the toxins are not being injected directly into the muscle tissue.

    Decisions suck sometimes :-( Don’t blame yourself. Know that as parents we can only do the best we can do at the time. You love Charlie and your motives are good when making choices for him.

  19. Regardless of what happens, it will NOT be your fault! You are making a well-researched, well-informed decision ..

    I will admit, though, that one of the hardest parts of being a “special-needs mom” is the guilt: over what I do, over what I don’t do, over not doing enough, over not being able to anticipate every possible outcome of every situation we’re in …etc., etc.

    I do know that, for us, Botox was one of the least risky decisions we made. The injections helped my son immensely for a couple of years (he had them done six times before they started losing effectiveness). We were able to prolong surgery for years and keep his hips in decent shape as well.

    Good luck!

  20. As everyone said, once you do your best to make an informed decision about what is best for Charlie, a bad outcome isn’t your fault (just like do you take ALL the credit when the results are good?).

    Also, to join the chorus, my 5 year old niece has had Botox several times — while the results are not always as good as the first few times, they are never bad.

    Good luck.

  21. A friend of mine just directed me to your blog today. Why have I not found you sooner??? I’ve only read two posts, but I think I’m hooked:-) Charlie is absolutely adorable!!!

    As for Botox, we’ve done it three or four times now. I can’t believe I’ve lost track! I guess maybe that’s a sign it gets easier???? Good luck! I hope Charlie responds well. I have seen instant results–within a few hours–each time my son has gotten botox.

  22. I will be praying for you. These kind of decisions are really tough. I am sending a giant hug your way (really giant to get around the twinkie belly).

  23. I will simply say Ditto. You can only do your research and thoughtfully make your decisions. That is the best that any Mom can do for their children.

    Billie

  24. we love botox around here. drake has gotten it twice with great results and no complications. last time he had injections in the hamstrings as well as the adductors. last time he did it without anesthesia and barely cried. i think this is a decision you can feel good about making.

  25. I have been thinking of you and Charlie all day. Hope things are going okay. Lots of love from up-river…

  26. Hi! Max got his Botox done last week, in his right hand, which is noticeably looser. I’ll bet you will see great results for Charlie. Oh, and what Stacey said, re, “If something goes wrong, it will be all my fault.” Stop that! You’re doing this to make life better for Charlie. From what I’ve read, there are no downsides to the Botox.

  27. As you know, we have done Botox just recently. I know exactly how you feel. Sometimes there aren’t good choices but a decision has to be made. That is definitely a down side to parenting! Praying all goes well with the shots and you see great results in Charlie! He sure is a cutie!

  28. hzmngrl says:

    Liam is sensitive to multiple additives as well as on a gluten and dairy free diet so we (usually me) have to watch every iota that goes into his mouth. Every day feels like a struggle trying to keep everything balanced in his diet. Bleargh. It’s tiring isn’t it? I’ve had to beef up my investigative skills trying to maintain that balance. Part of me thinks “I knew parenting wasn’t going to be easy but I never thought it would be that difficult!” Thank you for sharing your thoughts with everyone – sometimes it feels like I’m the only one struggling.

    As for the Botox it really helped my daughters friend with the tightness in her calves after she had to deal with some secondary effects from chemotherapy. She had her legs casted multiple times as well as shots to stop her from walking on her tippytoes. Fingers crossed it will make a difference as well in Charlie’s legs!

  29. Good luck! I understand about feeling like you’re making a decision between two less-than-ideal scenarios. Lame, huh? Phia has had botox four times, I think. There was at least one that was difficult for me due to hospital reminders of the NICU, etc… But Phia came through with flying colors. For her, Botox is minimally useful — I can tell a difference, but I think (hope) that the biggest difference is the reduced pulling on her hips. I hope the procedure goes smoothly for both you and Charlie!

  30. those decisions are so hard. when we decided that Queen Teen should have surgery on her feet, it was terrifying. If she didn’t get the surgery she might not be able to walk much longer; if she did, she might not recover and wouldn’t be able to walk ever again. We opted for surgery and luckily it all worked out (although now her knees are going!). But having to make the decision to let those doctors cut my baby felt like deciding which of my legs I didn’t need. And I too felt like it was all my fault if anything happened.

    I could tell you not to think that way, just as I was told, but we both know how impossible it is not to feel ultimately responsible for what happens to our children. Instead, be kind to yourself and remind yourself that you are doing the best you can for your child. That’s the only thing that has worked to alleviate some of the stress and guilt I’ve carried for the last 16 years.

  31. Jacolyn says:

    Oh boy do I hear you sista!! Grace did two rounds of botox. The first really helped but the second not so much. Have you considered PERCS?