Wednesday, May 24, 2017

This is 8.

Our baby turned 8 years old on the 15th. And much like on the day he was born, we woke up to a beautiful sunshiny day. His birthday fell on a Monday and heck if there is something he likes more than going to school. So off he went, doing his normal Monday routine. We waited for the weekend to celebrate properly with a some swimming.

It's hard to describe my emotions on his birthday. I have tried before, but nothing I've written quite captures the intersection of memories, joy and pain, the relief, the tenderness of the day. So I decided to take out my camera and capture his sweet 8 year old self.

This is a typical Jack smile. It's a little crooked and you can see how his cerebral palsy shows on his face. And it is so beautiful. His grin is one of my most favorite things to see.

Jack has places to go and things to do, but he still needs my help to get around. I spend a large portion of my day attached to him like this. My hand steadies him as he takes his steps and we go on whatever adventure awaits.

We have this thing together in the morning where he gets up on our bed, has us open the blinds in our room so he has a view, and we spend a few quiet minutes together before the rush of getting ready for school and work. Occasionally he'll snuggle back into bed for a few minutes. More often than not though, he likes to jump around as the morning light comes in.  He's always been our (very) early riser and as much as continuous early mornings can be so exhausting, it's also the time of day where Jack is most himself and ready to face the world.

There's just something about Jack in a collared shirt (swoon) and thanks to the best hand-me-down wardrobe around, Jack has lots of choices of collared shirts to choose from. My favorite outfit, which was first given to us at my baby shower is called "Montana Attorney" or just plain "Daddy" which is a collared shirt and khakis. Anyway, this seemed like a good "I'm 8 years old today" look. Plus, with him working on his pipes all the time, he really nailed the look ;)

 Ah this kid.

All the heart-eye emojis.

8 years old. Each year that passes I feel like we get more in a groove with the unique and not-very-average family we are. Of course I still worry about Jack's health and the future, but not so much about life with disability. I find myself listening more to the disabled community and trying to navigate as best we can, given we will be Jack's advocates navigating this world for the rest of his life. And yes, birthdays are bittersweet because they are a very real reminder that the entire trajectory of our lives changed and not in the typical ways of parenthood, but more so, in ways that I am still grappling with today. That might be a different topic for a different post, but part of what I've always done with this space is be honest with you about the journey. Birthdays are bittersweet and complex and maybe (probably) they always will be.

One thing I've learned is to not beat myself up for these complex emotions that go along with parenting Jack. I had the opportunity a couple weeks ago to do something I've always dreamed of - YOU GUYS, I got to meet my BPMFF (best preemie mom friend forever) IN REAL LIFE. Lindsay and I have been friends through the internet for five years and when I told her I would be in Charleston, S.C. she immediately said she would drive down and spend a day with me. We had lunch and got pralines and then talked for hours by the roof top pool of our hotel. It was one of those experiences where I could say anything, ANYTHING about Jack and parenting and medical this or that and she understood. I've never experienced that before because, well, I live in Montana and this whole 23 weeker life and not "growing out of it" is not too common in these parts. My lifeline has been this space and online community. But real life, in person? What a dream come true.

So May has been quite the month. An 8 year old. A day with a friend who understands. And now summer... the months I both dread and look forward to the most. Anyone else out there have a kid who really, really misses school and their routine in the summer? We have already been making lists and planning the crap out of this summer so our sweetie does OK. We can do it, right?!
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Renae Winkler said...

I love to read your updates and learn how well Jack is doing. I have been following Jack all his life and never knew a baby could survive at such a young gestational age. Hope he gets back into an eating mood soon.

Jessi said...

Oh Renae, thank you so much for reading and always leaving such nice comments. Means so much to us! And yes!! Eating soon... we hope to work on that a lot this summer.

Elaine said...

Happy Birthday Jack! Thank you again Jessi for sharing

Jessi said...

Thanks Elaine <3