Finding the Silver Linings of Early Onset Scoliosis

Let’s be real, of course there isn’t a single one of us who has dealt with an early onset scoliosis diagnosis and has said ‘well I’m glad we got this diagnosis’. No, not at all.   It’s physically, emotionally and can even be financially challenging.  It’s scary and hard and that’s just touching the surface. The unknowns, the casting, the OR visits, the anesthesia, the surgeries, the stress around living with a child in a cast, the waiting, knowing that for many this can really be life threatening, . … it IS too much and you can’t understand what it is like unless you’ve been through it.

But we all have a choice in how we respond to it all. I’ve seen people choose to be angry, bitter and refuse to see outside their own child’s case and realize they are pretty lucky in the grand scheme of things. And I’ve seen those who have children with some of the toughest and hardest cases I have ever seen and they choose to do good and find the positive pieces in it all.  That’s not saying everyday is or should be filled with sunshine, rainbows and unicorns. Because it’s not.  It’s not easy and some days the choice is to be angry. But it’s what you choose most of the time that’s important.

For me, I tried to find the positives. Life is a gift. All of it is a gift. The good the bad, the pretty the ugly, it’s all incredible.  Sure it’s easy for me to say this, since we have made it over most of the difficult hurdles (hopefully). But I decided early on that at the end of the day I had to choose to find the hope, the positives, the sunshine more often than the clouds of gray and the anger.

There are some real bright sides that I choose to focus on and how my life has changed positively.

1. I’m much more compassionate. I think I was a compassionate person before but now it’s on a whole new level. I’m much more in tune with and feel for kids and parents suffering with medical challenges.  I’m an advocate, an activist, someone who wants to be involved and find ways to make positive changes, big and small.

2. I got 5 or so Christmases every year. Almost two years of cast life was not fun, but it wasn’t all bad. I’ve always said cast removal day was like Christmas morning. The anticipation, the pure joy of all the fun ahead once the cast is off. Seeing her happy face as she enbraced her own body.  And the hugs, the hugs!  I can’t tell you how amazing it feels to hug your child for the first time in two months without a body cast in the way.  All of it is just magical.

3. New memories I wouldn’t have had otherwise – Cast breaks afforded us the opportunity to relish in baths, swimming, sand boxes, messy crafts, mud… you name it. When you haven’t been able to do something that’s such a basic a part of life, you cherish it when you finally are able to.  I guarantee I have far more incredible memories of my daughter in the tub than my friends who bathed their kids daily.

4.  New friends – I’ve been fortunate to make many new modern day pen pals. Friends I have made in support groups through Facebook. It might seem cheesy and pathetic in some ways, but we have bonded in ways my other friends simply can’t. I have an incredible support team behind me online. I’ve been fortunate enough to meet some of them in person too.

5. Sense of purpose – When we started this journey and diagnosis these support groups on facebook were really just starting out and the information I found the web was limited and misleading.  I’ve watched the members of our support groups double and some even triple in the time I’ve been there. I’ve heard hundreds, if not a thousand stories from parents just getting a diagnosis or updates from those who have been at this a long time.  It’s rewarding to know the knowledge I have gained and the work I do has calmed the fears of many, helped guide parents to the right doctors, and helped them find the research they needed to make important decisions.

And when I look at what this crummy diagnosis has given my daughter sometimes the silver lining are just right there, clear as day to see when I see how she responds to the world.

Empathy – How incredible is it that I can say my five year old has a great deal of empathy? Empathy is a life skill that frankly I think as a whole lot of us adults have not learned.  I don’t think she would have learned this skill without going through everything she has.

Comfortable Being Uncomfortable – Spend almost two years in a body cast and I think it’s fair to say you’ve learned how to be comfortable being uncomfortable. Life throws lots of uncomfortable circumstances at us….the economy seating on a crowded airplane that’s been sitting on the tarmac for an hour with no air conditioning on a 95 degree day, the painstaking small talk that’s going nowhere at a party,  awkward conversations on politics or race. You get the picture. But many will tell you one of the keys to success in life is finding a way to be comfortable while being uncomfortable.

Understanding Life Isn’t Fair – She couldn’t swim or spend long periods of time out in the heat in the summer when she was in a cast.  My daughter can’t go on a trampoline now. Do you know how many kids have trampolines in their backyards? They are everywhere and boy I’d love to let her go, they are fun and nothing wears a kid out more than jumping on a trampoline.  But she can’t. And yes it’s hard at times, but this is life, there will always be things we can’t do in life for a whole number of reasons.  It’s another hard one but these are teaching opportunities.  This is up to us as parents in how we approach these things with our kids, teaching our kids that they are not alone and we all face things we can not do or be a part of is just another life lesson that’s bound to help them grow into thoughtful and caring humans.

Patience – Oh patience,  it’s fair to say patience is still not my strong suit. Just ask my husband… but it’s getting better…I think.   Still, my five year old has patience down better than I do at times. Could it just be how she’s wired? Maybe.  But I also know she’s had no choice but to be patient in situations she didn’t want to. Like doctors appointments, scary X-rays, weird diagnostic tests, sponge baths and hair washing in a sink. Let me tell you, sink hair washing is scary for just about all infants and toddlers. But she had to find a way to do it all with some patience.

Duck Tape Collection – You do two years of serial casting you are bound to end up with a pretty sweet duck tape collection.  And have you seen all the Pinterest crafts you can do with duck tape? Tell me that isn’t a positive.

bright side

 

 

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2 thoughts on “Finding the Silver Linings of Early Onset Scoliosis

  1. I was having one of those discouraging days yesterday when I was thinking of all the things Ana won’t be able to do. I was worrying that things will only get harder as she gets older. But you’re right, there is a positive side too. I needed to read this today!

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