But if you never try you’ll never know, Just what you’re worth

The other day some friends and I played a game. We listed off songs that we could listen to for the rest of our lives. One song only, forever. I of course had trouble choosing and ended up picking three. Music has always been the mainstay of my life. One of my friends chose “Fix You” By Coldplay. I listened to all the songs chosen and this one resonated deeply with me.

As of late there has been a lot filtering around with Alexandr’s care that has been incredibly difficult, and I have found it so hard to muster the strength and tenacity in myself that I typically have. that strong will and push forward attitude I always seem to have has been so rocky. perhaps it has been because of some of my own personal struggles but whatever the reason my resolve is being tested by everything that is facing us at the current moment.

Alexandr entered this world under the most spectacular of circumstances, at thirty three weeks, and spent a month in the neonatal intensive care unit. Since then it’s been a non-stop roller coaster ride. In the last year we’ve spent a large amount of time in therapy four times a month. We have had progress, and we have had setbacks. Anytime we make headway I feel like we do an about face and it’s two steps in reverse.

While other parents can speak to their children who are about to turn three, I cannot. Instead we communicate mostly through hand holding and pulling. I have spent the last few weeks struggling with what therapies to choose for him, what will serve him best, how to get them for him, and how to move forward.

Progress.

That’s always the word of the day, how to make progress. How do I get through to our son?

I told my sister the other day, who understands exactly how I feel, that I feel as though it’s like being locked outside a house with your child inside, staring in a window from the cold. You cannot get in until they can figure out how to open the door.

Autism is a fickle thing, and though he may not have an official diagnosis yet, that’s the label that we’ve all put on it at this point, his therapists included, and it’s something that over time, I’ve had to come to terms with.

Fix you.

That’s exactly how I feel.

I wish I could fix it. I want to fix it. I want to make it all okay for him, and make the pain go away. I don’t want my son to be upset when he is around too many people, too much light, sound, or just general chaos. I want him to be able to go from place to place without being so upset he can barely breathe. I want to take all his pain and anxiety and bear it on my own shoulders. Give it to me, and make him okay.

Today is world prematurity day and I was reminded once again how precious he is. Despite all of this, and all of our struggles, I have taken the last few days to step away, away from all of it, the appointments and therapist evaluations. The upcoming school placement (he starts preschool in February). The developmental pediatrician evaluations and the figuring out what to do about this child psychologist business, and I stopped to enjoy my son.

Sometimes I get so caught up in all of the need of development. I forget to just slow down and enjoy him as he is now. I focus so much on what the next step is, that I forget to take in the now.

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 Sometimes we have to just let go of what we think we can do, to find out what we really can do, and be. We have to get out of our own way. I feel like I spend so much time at times TRYING to be the best parent that I can, that I miss just playing in the dirt with my son. I should let go more often.

In the past two days I’ve been able to take down the barriers in my house and stop using the baby gate, and bring him a little more into my world. He has his own space in our office at that little desk of his own. He is learning a little more about boundaries and I think he’s actually understanding it a little bit, because I’ve given him that opportunity. We both have been feeling sick as well and for the first time since he was seventeen months old he wanted to sleep in my bed with me, and I haven’t gotten those kinds of cuddles since he was that age either. I forgot what it was like to have him need me that close. I cried my eyes out after he fell asleep. Something he will probably never know or understand, but I needed that from him so badly.

I just needed to try, to let myself know what not only I was worth, but what he was capable of.

I think we both needed what came out of the last few days.

There is no fixing that needs to be done in this house I have always known that, and while I may always want to make him feel better because I’m his mother, and will always want to take that weight off his shoulders, I’m learning every day to handle things a little better. It is all a process, and we learn from each other.

 

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