The post I didn't want to write

It's late again. No morning writing for me, unless you count 12:14 a.m. as morning.

But stolen midnight moments with these keys is an improvement from when I thought about writing but rarely practiced the craft of brewing meaning from words.

Oh, I kept a journal for years but I often kept the same journal for years because I was a regular irregular writer.

Sort of like how Elias is a coordinated uncoordinated kid. The damaged part of his brain does not communicate directly with his muscles. There's all sorts of technical terms for this delay but none that capture his ability to rotate his body mid-fall-- so he lands on his hands and knees instead of the back of his head that protects his damaged brain.

Damaged brain.

Brain damage.

Brain damage.

Brain damage.

Just thought if I said it enough times I could shake out the stigma attached to that term.

"Do you want a boy or a girl?"

"Oh, I don't care as long as it's healthy."

What is it about sickness and disability that scares us so?

I know I've been posing a lot of questions lately. You probably noticed I've been sliding down the mountain instead of hauling my tired-ass up to the ridge-line.

And I can give you all kinds of reasons: I can whine about the time commitment of a full course load for a graduate program in which I sometimes wonder why I'm enrolled; complain that even though I gave my notice in July a replacement NICU Parent Navigator didn't step into the position I helped define until yesterday; grumble about Elias's seven weekly therapy appointments that make our days a checker board of outings with no routine; gripe about Nick getting to spend full days hunting and fishing when I haven't taken a day off from striving towards parental or professional goals since the day the ultrasound told me to lie down; stew over the random chance of two unrelated professional opportunities presenting themselves during a month with too many commitments already crammed into its elevator of days.

(Abater! Abater! Elias would say if he was still awake and I dared to say that word-- e-l-e-v-a-t-e-r-- out loud. Then he would crawl to the door:  Car-ride! Ready! Car-ride! Abater!)

But the truth is, that along with the insane magical moments Elias brings, there is a back-story of exhaustion, disappointment, and fear.

And perhaps I cloak myself in busyness to avoid falling.

If I just keep going then maybe I won't surrender to the feelings that my love for Elias detests. The embarrassment when strangers watch him struggle to walk. The regret when a pudgy baby passes him on most milestone markers.

The "othering" that even a mother can do to her son when for a moment she sees the disability before the boy.

The shame in those words.

I want to only celebrate. To rejoice in the wonder of it all. I want something as elementary as an elevator to make me rise.

If only I could perpetually see the world through Elias's two and half year old eyes.

Most people with Nystagmus do not see their eyes move when they look in the mirror. Their brains don't register the extra beats to the sides but only see the centered pupils.

Their brilliant damaged brains figure out how to block the extraneous sensory information to create a stable picture. And the mirror reflects this steady gaze.

And as usual,

with a teacher for a son,

I can learn from this.

Comments

[DeannaBanana]

Christy,

When I read your post regarding your ability (or complete lack thereof) to use the word no, I cheered for you. I was so pleased to see that perhaps you would indulge yourself with some time just for you. Today I read what, to me, is so very touching and giving and selfless that I am amazed.

You are the most humble powerhouse I have ever had the pleasure to read. I do not believe for one minute that you are sliding down the mountain at all, but instead ensuring that your trek to the top is so thorough and so aware that all the safety measures are in place and that you haven't missed one glimpse of the view along the way.

You, my dear, are in no danger of failing and certainly very little of falling. Your spirit would not allow it. All of the people in your world are very lucky to have you in it. I do not think that God could have chosen a better Mama for Elias and I believe you are doing things exactly right along the way.

If I could give you a single gift, it would be rest. The ability to renew and to refill your fuel tanks to you keep going strong.

Know, instead, that you have the admiration of this complete stranger and that you and your family are in my thoughts daily, being lifted up.

[Kris H.]

I couldn't possibly put my thoughts better than DeannaBanana did, and I agree with her completely, so I will simply say, "Yeah, what she said!"

[Katy]

Thank you for blogging--you give me much to think about.
And Elias is as lucky to have you as you are lucky to have him.

[Robbin]

Every mother lies awake and fantasizes about the future of their child - what will my son grow up to be? Will he be handsome? Rich? Popular? Will he save lives? When those expectations, those prayers and wishes are challenged, it is natural to grieve for the loss of our hopes and dreams. But we can never judge how many lives Elias will touch for the better, what profound lessons he will teach, or whose lives he will fill with his love. It is how we place value on life that needs repair - not Elias.

I love your writing. I love hearing about your son, about the NICU, about Alaska. And it is not only your love for Elias, but your struggle that teaches me every time I read.

[Bon]

Christy,

i missed the Kleenex warning on this one...you write beautifully, and your honesty is courageous.

just wanted to say that i think it's the backstory that makes the magic that you share so incredibly poignant. and the fight to surmount the shame and regret of "othering" is a part of your love for Elias...not a sign of love's absence, even in those moments.

thanks for not taking the complexity out of everything. and thanks for sharing Elias with us.

Bonnie

[Katie]

I really admire your honesty--it does make the beauty all the more stunning. Thanks for allowing us a glimpse into your world!

[Gillian]

By the time you get to be an adult you have learned enough that most people can't hurt you. You can roll your eyes and dismiss people who want to hurt you. Then you have a child and you suddenly have this gargantuan vulnerability. If your child gets hurt, rejected, excluded or teased it hurts so much. And they don't even let you kill the people who do it. People who stare, whisper, look away make you cringe because a time will come when your child is old enough to get that. Once they are out of the womb you can't really protect them anymore and it is killer painful.

[jess]

I just think you are a phenomenal woman, mother, wife, friend and writer -- all the people who get to share in your life are the lucky ones.
Thanks for the latest.

[Kyla]

KayTar loves the elevator as well...it is the best part of our outings to the Children's Hospital. When we are in there, she always breaks out into giggles and makes everyone in the elevator chuckle along with her.

It is difficult to parent a child who is challenged more than most. It is hard to see a child much younger do things your child struggles to do. I think it is for anyone in a similar situation. It doesn't mean you are doing a disservice to Elias because you have those feelings at times. You love your little boy wholeheartedly, and that is what matters. Those of us walking a different path do "mourn" the loss of what might have been in little ways, but it doesn't take away from the unending love and support we have for our children. It just is what it is. You are amazing. :)

[Ellie]

On Saturday, I stumbled over a verandah step and fell with L in my arms. I clung to him till the last moment when I realized I had to let him go in order to break my own fall or I’ll end up crushing him underneath me. Fortunately he was just above the floor, when I let go. He fell onto a step and started crying bitterly. And though he wasn’t too happy for a while, I ended up with the bruises. He had none.

And this is the way all mothers would have reacted. Sometimes we cannot avoid falling, but we would gladly take the brunt of all the falls for our kids. We’ll shoulder the comments and agonise over the stares while they get excited over the possibility of an elevator ride. While they have us, they need not worry about the hindrances in their way. And while we have them, we needn’t worry about falling either. Even if we are carrying them at the time. Because we are strong enough to take the fall for them and because they will make us rise again.

[Christy]

I. Love. Your. Voices.

Your comments spoke directly to that part of me that needs to hear your words.

Thank you all, Christy

[Gillian]

Retrospectively, I think I should have indicated that my threats of homicide were actually sarcastic. In considering that I was so caught up for a time in TV forensic shows that I began to get quirky about -- Did I lock the back door? I wanted to clarify that I do not harbor actual violent tendencies. I am a peacenik, honest.

[moreena]

Christy,
I submitted this post for pediatric grand rounds. I hope you don't mind. I think what you write here is something that it's important for not only other parents to hear, but also healthcare providers, who may stereotype parents into extreme stereotypes. This post expresses just perfectly the back-and-forth we as parents feel when our kids have ongoing issues. It's hard to keep up unflagging optimism all the time, even when we flog ourselves into thinking we should. At the end of the day, the question is whether we can get it back again. It doesn't have to be all rose-colored glasses all the time.

Much respect, mama.

[Shinga]

I'm glad that Moreena made this recommendation.

Thank you for this post.

Regards - Shinga

[Teri Lester]

I hope this comes out right, if it doesn't I am sorry. I'm responding to "If I just keep going then maybe I won't surrender to the feelings that my love for Elias detests. The embarrassment when strangers watch him struggle to walk. The regret when a pudgy baby passes him on most milestone markers. "

My son is 13 years old and severely autistic. When he was younger, he looked fairly "normal." In those days I would often get embarrassed when someone would try to talk to him, or when he would reach out and grab stuff in someone's hands, or touch them in some odd way. Sometimes he would start to tantrum and I could imagine (and sometimes hear) people thinking/saying "what an awful mother, she doesn't know how to make him mind, etc."

Nowadays he is so complex, and so obviously impaired, that when I am out in the world with him I just absolutely ignore it. Not like in the old days, when I tried to ignore it. Nowadays I am so focused on him and shepherding him through the store and having a meaningful time with him that I just really don't bother to monitor what others are doing or saying (aside from guiding him to not bump into them with the shopping cart.

I finally realized recently that the cashiers in our humongo grocery store all seem to be aware that there is some issue, and when I do notice anything, it is that the looks that used to be disapproval now seem to be a lot sweeter and kinder.

It is fleetingly irritating when the 5-year-old cousin passes on hand-me-down toddler toys to my 13-year-old - but hey, he enjoys them and she doesn't.

He has gotten so incredibly far behind his peers that there isn't even a remote possibility of comparison anymore. I find as a result I absolutely delighted with his turtle-ish gains without even thinking of his age-peers.

This kind of toughness will come with time. What you sometimes feel is quite natural. Isn't it nice that something about your life is normal?

;-)

[Sonia]

Thank you for this post. Our kids have different issues, but issues they still are. Thanks for saying out loud some of the things I think frequently, but am afraid to voice.