Celebrating OI! A Year of Reflection

Celebrating OI! A Year of Reflection

At the end of each year we mark the highs, the accomplishments, and the good times in a number of ways. From Facebook “top 10” lists to jars filled with memories of the year. Reflecting is a way to pack up these four seasons and move on. For families with disabilities, this is not always so easy—or joyful.

For anyone who doesn’t know, my son has brittle bone disease – Osteogenesis Imperfecta (OI). He was born with more than 10 broken bones and had a pretty rough first few years. Four surgeries, numerous fractures, infusions every 12 weeks, and plenty of “no, you can’t do that – its too dangerous”. Not the life you want or imagine for your baby. I have to say I’ve often struggled with looking back. I have memories that are so dark and sad for me of watching him in pain, or being unsure if he would even live in those first few days that I tend to just not.

But one thing I’ve tried to do the older he gets is look back and celebrate more of the good. For instance, I know that going to public school is not something for everyone to get excited about, but I have never been more proud as I was the day he walked into school without me in September. I want to celebrate more of those things that are part of our OI experience.

I have asked some of my fellow OI Mom friends to weigh in on this topic. These are women I greatly admire. Sara is from Australia and is just as smart and kind as they come. She and I don’t speak often, but every interaction is rich and full. She parents young Ottie (8 years old) with patience and wisdom. I wish I had more of her temperament.

Amber is one of those contagiously cool women. She just IS awesome. You want to talk to her for hours and every conversation is full of laughter. I text her with random nonsense several times a year and she doesn’t miss a beat. She is my creative, outrageously funny, beautiful, sarcastic partner in OI crime. Her daughter Romey (8 years old) is also funny, beautiful and cool.

So here is how they look back on this year in OI. The good and the bad. Because its all there.

Q: Tell me about something your kiddo did this year that you maybe didn’t expect or were particularly excited about. 

SARA: Ottie has had a great year. For her it seems to have been a year of greater understanding about how to manage herself to make the most of opportunities. For so many with independent mobility it seems a wheelchair is seen as a failure. Failure to walk, failure to do ‘it’ like everyone else. For us it represents freedom. Freedom to continue on, long after legs would have given out. Freedom from the inevitable bone pain that comes with doing stuff your body is not really designed to do. And this year, she really got that. It’s a great tool. No more, no less.

AMBER: This year my Romey was able to play baseball! Can you believe that? This was the inaugural season for the Miracle League of Southlake. They built a beautiful, brand new field just for children with special needs to play on. Children, with many different types of disabilities, all together, playing baseball. Amazing!

Romey

{Romey in Miracle League!}

Q. What about something YOU did or were able to handle this year about OI that you are proud of?

SARAH: I have surprised myself at how relaxed I have been. Ottie’s had some wild adventures this year. Tree climbing, hill climbing, rock wall climbing (well, that was an abject failure, but still, she tried it!) bonfiring, camping, hiking and cubby building and it was fantastic fun. Most even done with very little freaking out on my behalf. In fact, anyone who was not inside my head would have thought I never ever freaked out. Not once. Pretty proud, relieved and amazed about that now come to think about it.  I think if anyone had told me four years ago that one day I would relax when my child was out of sight, bush bashing in the scrub… I would have thought they didn’t know my child, her condition, or me very well at all.

Ottie

{Ottie on the beach}

AMBER: This is the first year that all of my kids are in school together. I have a new sense of freedom, so to speak. While Romey is at school I have only ever given myself a 15 minute distance from myself to her school. This may sound crazy to any other parent, believe me, I know. This year, because of how great she has been doing, I’ve given myself a longer leash. I’ve been needing to exercise for years, and my gift to myself was to join an exercise program. The program meets at a place 25 mins from school. It was the first time in a long time that I’ve chosen to do something for myself. Something I’m sure others wouldn’t think twice about.

Q. The year may have had some tough times. What do you do or think about when faced with tough situations regarding OI? How do you climb out of that moment of sadness and frustration?

SARA: There have been some tough times this year. Very tough. In those times, I turn to my inner circle, both local and virtual. I often say little when things are tough. Just getting by. Repeating it ad nauseam to all and sundry does not help me. It makes it way worse and I dread it. I hate the well meaning curious questions and the repetitive explanations. I know they mean well, but it’s not helping me or my child and I have to look after myself in order to look after her. My inner circle are different though. I don’t know what I would do if I didn’t have them to download to. Mostly though, I just trudge through, trying to keep it as happy as possible for her while just keeping my head above water waiting for the storm to pass. And I chant – “This too shall pass” and “One day soon, this will be in the past”. Not that I want to wish our lives away, but some days we are just trying to make it to the next one, knowing that each one brings us closer to better.

AMBER: I think, for me, I had to stop thinking about things as “OI problems”, and just look at them as problems that our family is faced with. It’s all I know, and I just keep on keeping on. If I let the sadness and frustration creep in from time to time, well I think that’s normal for anyone. Anyone can have some sadness and frustrations, but I don’t think mine are different in the sense of managing them. It’s a bit cheesy, but I often tell myself that I have to choose to shine.

Q. Can you sum up 2015 in two words?

SARAH: Our year with OI in two words? I think we have finally reached it. Cruise control.

AMBER: I can’t!! Too much goes on in a year for me to sum it up with two words. I’m always glad when the newness of a new year comes. I feel like you get to start fresh, but really you just get to keep going.

These tough girls are my heroes. They teach me more about how to celebrate life through adversity and mark each year with pride.

#toughgirls

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Hi, I'm Shannon. I like to write about tough girls and tough things because I find strength to be an interesting and inspirational topic. My husband, Vic is my favorite person and my children, Emerson and Finley are right up there too. I am a disability mother and advocate. A woman-loving, lean-in type. And a fitness coach and cheerleader.

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