Niko Gian · Osteogenesis Imperfecta · Uncategorized

My son still has OI

“Have you thought about preschool?”

Turning 3 always seemed so far down the road.

My strategy was to keep my nose down and stay focused on the now…. I would jump ahead if we had to plan care but other than that, the transition where Niko would go from being a baby to a young kid was clear over the horizon and I would not be able to see even it if I tried… and I rarely tried.

All of sudden, it seems as though that time has crept up on me…. he turns 3 this week. We are saying good-bye to our early intervention therapists that we have had for the last three years. We are saying hello to new therapists who work in the intermediate program for children years 3-5. We are talking about an IEP, a one-on-one aid, and discussing enrollment at some point over the next year.

We have started home infusions…. which is awesome.

Niko is swimming every day since the pool opened and it’s an integral part of his therapy, as well as playing with other kids his age who are also in a floatie learning to swim!

We have been doing therapy sessions virtually for the past few months, and Niko’s really been doing so well that OI can sometimes slip into the background.

Let me expand on that….. OI is always prominent…. it’s part of every fiber of our being…. because Niko is within every fiber of our being… just like each of our other kids are… like your babies are to you…. OI cannot be separated from Niko, and it cannot be separated from me or my family. It’s part of us. We were born into the OI family over three years ago and it will last our whole lives… and beyond.

So OI will never slip into the background.

The responsibility that comes with OI can slip into the background. With disability comes responsibility. We are not only responsible for our child, but we are responsible for their care. We are held accountable to their medical providers, to their therapists, to their progress, to their care, and their goals. We must show up and we must be on point. We must be able to communicate effectively and accurately. We must be the connector of dots and the roots for the foundation of our child’s relationship with the world…. their relationship with their disability that is listed on various pieces of paper throughout the healthcare systems and programs which serve them.

We must be held accountable for where they have come, where they are now, and where they are going.

These can be the things we let go of at times…. we let go of the goals, the communication, the overtly identifying so deeply with the worldly potential…

…. we let go of the striving… the pushing, the working, the accomplishing, the conversations.

We let go of our attachment to our role as CMCO (Chief Medical and Care Officer) of our child and settle into a space of alignment and normalcy…. boredom even…. we engage in activities that make us feel like we don’t have to work so hard.

Summer has opened up this space for us….. we swim and play and have fun. We begin to identify more with the sun and the warmth and less with the challenge of physicality and whether “we are doing everything we can” or not…. water therapy has certainly given warmth to my own mama’s heart.

We are saying good-bye to our therapists…. we are saying hello to the possibility of an aid and preschool. We are saying hello to Niko growing up, transitioning from being dependent to now more independent.

We have said good-bye to diapers! We may be saying good-bye to a crib.

We won’t be saying good-bye to OI, however.

Going through this transition, it can feel like I’m managing a situation that I’m not actually in….. like I’m telling a third-person story and there is this child with OI and he is using a walker sometimes and parallel bars and he will be using a wheelchair when he goes to preschool and he will have an aid with him to help and protect him while his attentive and diligent mother/protector is not there.

I’m organizing a trip to his OI specialists in Omaha for an annual DEXA scan and leg/spine xrays and an arm rodding surgery because he has broken his bowed right humerus a few times over the last two years.

I look at my little boy and he’s laughing and playing and telling me he wants to sit on the counter, find the cat, go outside and to find his truck.

It’s the many roles we play and the hats we wear. We are strong, smart and able – to compartmentalize the tasks, to put our emotions on the shelf when we must…. and know that we were born to do this.

3 years certainly feels like an accomplishment, and with all of these good-byes, a small part of me forgot…..

… forgot that OI would be coming with us.

That the fragility and the collagen production, and the physicality, and the modifying would be coming with us…. the concerns, the fear…. the anxiety and the unknown…. would all be coming with us….

… and we would have to learn how to move into this new space…. together.

My son is not his OI…

…. but OI is a part of who we are…… and how OI shows up in the world, is our responsibility.

How we show up in the world…. is our responsibility.

And this transition is very much about how Niko is learning how to show up in the world. In his own way….. in his own time…. with his own goals, and ideas, and thoughts and wants….

This is about letting go and letting him have a little more of this responsibility.

…. letting him decide how he will show up.

Even though I’m letting go a little bit, leaning into new experiences, new people, new endeavors, new risks, new rewards….

My son still has OI…. and we must still continue to change the world for him…. In new territory…. that we must learn more about…. so we know how we can help. How we can make it better…. how we can let our heart walk outside of our body into an unknown experience that he was also born to live.

My son will be 3 and he has OI…. he will one day, God willing, be 4, and 5, and 6, and 10, and 15 and an adult, and I don’t want to speak for the totality of possibility and what the future may hold, but he will be an adult who may still have OI.

As much as we want to hold on tight to goals and expectations, Niko will do what he wants… and he will be the driver of his destiny.

OI is a co-pilot sometimes… in a random, spontaneous, surprising, unknown kind of way.

And the responsibility of OI can sometimes be loud and other times not as much. But the responsibility is always there.

With it comes fear… and with it comes the gifts beyond our wildest dreams.

With it comes our son…. a most miraculous, joyful, humerous, smart, playful and strong kid…. this is by far, without a doubt, the most incredible time of my life.

I am so deeply thankful and amazed at the gifts God has given us and I am willing to continue forging ahead into a world that has miracles waiting for us…. experiences and joy that I cannot in a million years even begin to understand.

As my son turns 3 this week. It’s a sacred number full of transition and light.

I have recently learned that I’m not just here to protect his physical form, but also his powerful light – I’ll share more about this in writings to come.

For now – he turns three in two days.

We are reminded that although the earth felt as though it had stopped that fateful day – it did keep turning and his trips around the sun coincide with his momentum… that knows no bounds… limited only by a limited construct.

We are here to support his journey – now and in all time.






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