A Late Night Lesson

I planned on writing a different post tonight. But I came home from my late evening class to a sick little boy. He threw up on Nick earlier and just awoke with a fever of 102.

Nick sits holding him on our living room floor and as much as I want to be the one to comfort him, he has a father who loves him. A father who needs to protect him. A father who, though he expresses himself in different ways, also worries.

So I sit here at our kitchen table, trying to write, as I watch the two boys I love snuggle. I hovered at first. Unable to let go of the reins. But Elias has melted into his Daddy's arms and the man I chose to marry couldn't look more comfortable, more competent, or more concerned.

And you'd think I'd know this by now, but I realize I'm not alone.

Sorry, but I need to say that again.

I realize I'm not alone.

I'm not the only parent who is madly in love with this little boy we call Elias.  Not the only parent who would do anything to help him. Not the only parent who's world crumbled when we entered the NICU. Not the only parent who has learned to rebuild his world step by step. To replace dreams of kayaking, skiing, and mountain climbing with his son for dreams of adaptive technology and quality of life. And yet to not discard the original dreams. Not yet. Not with all the possibilities Elias's future still holds. But to also prepare to pack them away for good.

I'm not the only parent who lives in limbo.

I know this.

But I don't.

I sometimes feel so isolated by my worries or my grief-- even when I lay in bed next to Nick. Even when our bodies intertwine I lay alone with my fears. I don't always speak. I don't always reach out. And I don't always remember that his mind may be wrestling as well.

Or that he is equally affected by how much we still don't know.

Comments

[heather]

Thank you for writing this post. I hope Elias feels better soon!

[Kyla]

It is easy to forget that Christy. I think we all do it. But we are so lucky to have these great men standing beside us, helping us carry the load.

[Kathy]

Thank you for writing this post. He is madly in love with both of you and he does wrestle with all the unknowns in his own way... right next to you.

[Alice]

This is such a beautiful post.

[Tracy]

First - get well wishes and hopes for Elias.

Second - thanks. I am going to share this post with my dh. While I know that he's a wonderful dad, a great dh, and one of the rocks of my life, I forget sometimes that he's in this boat with me, wondering what the journey will be like.

Thanks.

[Sara]

One of the hardest things about parenting IMO is maintaining balance of all parties' needs. The partners generally get the short-shrift ... especially while the kiddos are young. But you know? Awareness helps - and you've got that. I'm betting that both of you feel a little less alone after last night - when you let go for a bit, and when Nick did the caretaking.

Hope Elias is on the mend.

[Christy]

Elias woke up this morning without a fever and HUNGRY. Though I canceled everything for today, he would be off and going if it were his choice.

Glad for the fast recovery, as well as for the awareness last night offered.

Thanks for letting me know you understand.

[Farmers Wife]

Glad to hear the little man is feeling better :)

[elizabeth]

So relieved Elias is feeling better. My fingers were crossed that it was the 12 hour thing, not the 6 day thing going around. We love you guys!!!

[Stacy]

So glad Elias is feeling better. I made my husband read this post as you so eloquently put words to feelings I have struggled with and did not know how to convey to him. Thank you again.

[Angie]

I loved this entry... so beautiful.

Also, I wanted to tell you about two extremely close friend of mine- sons of my mom's best friend- that I consider brothers. We spend every holiday together, vacation together at the beach every year. They both have muscular dystrophy. We weren't supposed to have them in our lifes beyond their 14th birthdays.

G is 25; B is 30. They haven't just beaten the odds. They've taken the odds outside, smacked the odds down and eaten the odds for breakfast. They use wheelchairs.

G did marching band and dance theatre in high school. Yes, MARCHING BAND. In a wheelchair. (You have to be a special kind of badass to pull it off.)

B skis. There's an adaptive device for people in wheelchairs who want to ski. You sit in a bucket seat with two skis welded to it, with one skier on a tether in front of you who steers and one behind you who anchors.

They both drive adapted vans with ramps that fold out of the side door with the touch of a remote control button. You roll up your chair up the ramp, lock in the wheelchair behind the driver's seat, which swivels around to face a steering wheel equipped with hand-operated brakes and gas pedal. The ramp folds back up and voila! Driving without feet!

Did you know that there are special wheelchairs made out of PVC piping and large plastic wheels that you can roll over sand straight into the ocean?

The only thing that amazes me more than the creative ways one can adapt ordinary activities, such as driving and skiing, is the extraordinary strength of the amazing men in my life. In our family, "normal" is just a setting on the dryer.

I guess all I wanted to say, really, is keep dreaming. Keep dreaming of the things Elias might be able to do with adaptive technology, of the ways he might be able to appreciate nature and the outdoorsy activities you and your husband love. (Bucket seat skiing!)

Keep advocating and educating and fighting the good fight. Just keep it up. Let your husband help you rest and regroup, like last night, so you can come back fighting harder and better and more imaginatively than ever.

[Christy]

Angie, I LOVED hearing about these two me you love and all the cool things they do. Thank you.

And Stacy and Tracy thanks for letting me know that you related enough to share with your husbands--it means a lot.

Oh, and Kathy, I'm madly in love with your son. Thanks for always being there for both of us, Christy