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This post is one of those that comes into my heart and has to be published. It’s messy and raw and real. I have these moments where I just need to write. I am having a moment now so please indulge me by not caring about the way it comes out. 
Would Someone Please Stop the Merry-Go-Round?
Really. I am tired. and dizzy. and I just don’t know how many turns I can take at this.
The ups and downs and the constant round and round. Never really getting anywhere. No finish line to reach.
When your kids are little and they have a special challenge like spina bifida you have so many people there cheering you on. Cheerleaders do it out of love for you, your child, and a tiny hope that they are right. They say, “keep going” “you are in the hard years” “it will get better”. Theoretically, they are lying. I don’t think it is even a lie they are aware of. I have told it so many times myself.
Somethings DO get better, but mostly you just get stronger. You transform from the crumbled mess you were on the day you heard your child’s horrific diagnoses. You become harder to beat down. You readjust your vision of ‘normal’. It’s who we are as humans, as mothers and fathers. We adapt.
The capacity to adapt as a special needs parent is nothing less than a miracle.
People see you on the outside and the just rave about how ‘inspirational’ you are, they ‘don’t know how you do it’, you are such an ‘angel’. You know it isn’t true. You do what you have to do. You don’t have a choice. You love your child more than yourself. Every parent does, and whether they believe it or not, you know that if their child, God forbid, had something terrible happen to them, they too would do it. They just don’t know it yet because they haven’t had to find that strength.
But there comes a time when if you bend anymore to fit in this odd shaped container you know as normal you will simply break in half.
Today that is my reality.
My body is tired. My body is warning me that I won’t be able to lift my son anymore. I won’t be able to keep doing the things he needs because he is getting older and bigger. It is telling me that muscle relaxers and pain pills are my consequence of loving someone more than myself. Of doing things I know my body isn’t strong enough to do. Of ignoring the signs that I am taking on too much.
and that makes my heart break into a million pieces. And it makes me realize that no matter how many of these damn horses I try and ride, none of them are ever going to break off this merry-go-round.
And so we march on, up and down, round and round and pray that simply enjoying the ride is the point.
But writing this all out made me realize I really don’t want off the ride. I am enjoying the ride most days.
I guess in the end I know that is the point. Some days I just need to remind myself that while I go round and round and up and down, I love the people on this ride with me. I love that we never see a finish line in sight.
Finish lines aren’t all that they are cracked up to be.
i have a good friend who has a spina-bifida child. She is now an adult, but what a tough life! In the hospital, having to make decisions about surgeries. I admire you.
You said it all so perfectly. People admire you, but that doesn’t help at “that moment” when you feel like you are just going to break. So, I’m not going to say all the uplifting, positive things that come to mind. I will say that I am sending positive thoughts your way. I hope tonight you are able to get a good night’s rest and wake up refreshed and ready for a new day tomorrow.
I think that positive thoughts are one of the best blessings anyone can send you. Thank you!
Dearie, whether you like it or not, you ARE inspirational. Sure, you didn’t choose this but the way you handle this roller-coaster is awesome. Not perfect (because none of us are) but AWESOME. Give yourself the credit you deserve and that the rest of us adore you for it.
And I think you are awesome and totally inspirational. You are a whirlwind of energy and I would love to be able to bottle just a tiny percent of it for me.
I think these kinds of days are completely OK, needed & in a strange way they are healthy. You have to get this stuff out, because by keeping it inside it will just fester & create more pain.
I am not dealing with what you are dealing with, but have my own life changing diagnosis, a few years back , in my 20’s. There are absolutely days that it feels like you can not handle one more thing, related to what is going on with your own body, or in your case your sweet kiddo.
The words are nice for people to say, but sometimes it is just annoying to hear. Most people mean well, without a doubt, but often are unaware (luckily so). I have found it is completely OK to have these raw feelings & even healthier to put them out there.
All I can do is tell you I am sending good vibes & lots of laughter. Remember you are awesome!!!
I don’t know what I did to deserve such awesome praise from you. But thank you! Your comments have meant a lot to me
Thank you so much for writing this. My 7 month old son has spina bifida and sometimes I feel so drained. I do hear people tell me the things that you wrote. Upon reading your note, I just cried. I’m terrified of the future. However, I am so thankful that I have the privilege of being his mom. I wish you strength and endurance.
13 years later and I am right there with you, terrified of the future. But somehow we get through it. Somehow we deal with it. I wish you the same strength and endurance. Am assuming, like Sara, that you know about Spina Bifida Connection but in case you don’t there is the link.
my name is sara and my daughter lydia was born with spina bifida, her diagnosis actually came on my birthday last year 4/17 so i have been learning as i go for almost a year now. i read some books and cried rivers and talked to docs until i was blue in the face and it helps a bit but its the other mothers or the people who live with spina bifida daily are where i find the most comfort. i don’t know where lydia’s future will take us but like i tell her every night and day i will be there for her the whole way and do whatever i have to do for and with her, the whole time thinking ok sara your not the first or last person who will have to learn what to do in any given situation so suck it up and find some resources! thank you for sharing your experience with us and i will duly note i probably need to be better to my joints now and save myself some pain later!
Sara-start becoming a yoga guru now to save yourself down the line. Seriously.
You are right. I find so much inspiration from other parents. It is so odd to think that at 13 I am now considered a ‘veteran’ at this special needs thing. I am assuming you know about Spina Bifida Connection but just in case you don’t, I started it years ago for support.
“You love your child more than yourself. Every parent does”
No, not every parent does. Every *good* parent does. Every day the news is filled with children who were the victims of not having good parents… it isn’t just a given.
But having a heart big enough to love someone else that much? Also makes for a bigger ache some days. The ache of feeling like no one asked you if you were ready for this… and that’s true whether or not you are talking about your special needs kid, or the one who is not, but seems to be particularly needy some days. I know you have both, so I know that you must wonder some days if there’s a hidden camera somewhere on your life with people betting on how much one woman can take before she loses it.
As I’ve said to you before – when people say “I don’t know how you do it” you must silently append “with such wit, grace, and silent strength” onto the end. As the thought behind that sentiment is always ‘I don’t know that I would handle it as well as you seem to outwardly.’
I know that you are right. Not all parents are. I just choose to close my eyes to that fact. It is so unimaginable to me.
Love you!
Hi Barb, If I shut my eyes and have somebody read that, I could have been writing that!!! I have an adult daugter with Spina Bifida now 27yrs old, born with the worst type of spina bifida,worst arnold chiari malformation type11 ever seen,has endured 80 operations, so have spent the years wondering and pondering the same questions:) felt the pain,the anxious moments, untold fear etc etc….I am currently writing a book about her life,we both need to feel that her life has not been for nothing,she is an amazing human being who is loved by so many and has done some amazing things and overcome amazing obsticles .However we are now fighting the biggest fight…time,her body and soul is getting weaker,because the Dr’s dont want to try and do anything anymore,and the pain is almost too much to bear anymore,and once again for the millionth time I face fear, its hard to be strong all the time,and yes I’m told I’m an inspiration, and despite my aching sore and damaged body!! my life will change forever without her in it:( the biggest fear of all!!! Thanks for writing what you have, it reminds us we are not alone, so many people in the same situation thats always been a comfort over the years 🙂 xo
I am in tears reading this. I can’t let myself imagine the day that it becomes too much for Carter and my heart aches knowing that you may be there soon. My thoughts and prayers are with you and your daughter.
Thank you Barb. This was exactly what I needed. The reminder that I wouldn’t change my riding partners for anything and it’s my love for all of them, those so much greater than myself, that keeps me going and will always do so!
Barb – just came across this and love it. If you have a minute, take a look at my commentary on how our thresholds as special needs moms expand to meet the challenges we have…and that’s how others “don’t know how we do it”. They can’t even imagine it. But of course we’re just moms. We do it; we can’t imagine not doing it. But damn, we’re EXHAUSTED! (http://www.whac-a-mole-life.com)
Barb,
I am in tears reading about this one. Being a SB person myself, doubly so. I am dealing with my back aggravated lifting Bjorn and carrying him in the carrier. And I did this exclusively until he was nearly 35 pounds. That is love. You know that love. And the wear and tear which comes with that love. I am paying for it now. But regret none of it. But we’re still kicking if slowly. I’d do it again 10,000 times over for the little ones I hold dear. Superb post, this one hits home.
Beautifully written Barb. And I second what Lucretia said – all of it.
I certainly have been riding my own merry go round, but the issues haven’t involved my kids’ health. I have often stopped myself from feeling sorry for myself by saying – “at least my kids are healthy”. I don’t know what I would do if that weren’t the case.
I imagine I’d eventually get to where you are now, enjoying the ride on the days that I can and breathing through the days it is tough. That’s all any of us can really hope for I suppose. Allowing ourselves to enjoy the good parts and make it through the tough ones.
I am very glad you made it into my life.