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We’re gathering up the goods … Again.

Eegy sheep

The gummy bear blanket

The iPad

The favorite books – HUG, Dora’s Starry Christmas, The Owl Babies

Three of the same fidgets for peeling / picking / pulling

A bag of Kix for the car on the way home

We’re headed to the hospital … Again. Three times in three days.

This time for the Brain MRI – under sedation. Lying still simply would not be possible for my girl. She would be terrified. Instead, she will fall asleep with Mama at her side and, as I’ve already told every hospital worker with whom I’ve come in contact, she will wake up with her Mama at her side.

There’s an odd familiarity to all of this. An eerie deja-vu. Walking the path of a new diagnosis, a new awakening, a new relief, a different fear. Learning a new type of advocacy, a new language, joining yet another new ‘club’. And, as we move through the haze of it all, an oddly similar sense that once again, we stepped into the middle of a minefield and got grazed by a bullet.

As they told me during the 24 hour EEG to push the red button whenever there was ‘an event’ and I said, “From what we understand, her seizures are entirely sleep potentiated. I don’t expect to push the button at all,” I felt it. As so many of you have come forward with advice about how to handle grand mal seizures, and I’ve said, “Oh, that’s not what we’re experiencing,” I’ve felt it. As we’ve learned more about the type of seizures that we *think* she’s having and the fact that they are, by far, the most likely to be outgrown, I’ve felt it.

Survivor’s guilt.

I once wrote,

My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.

We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.

We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damnedest to celebrate what we have the luxury of calling her differences.

It isn’t easy. Not by a long shot.

But our neighbors on Autism Street live vastly different lives.

They live in houses where autism is about survival. Where there are no words. Where connection, engagement, a momentary, fleeting interaction is everything.

Where constant vigilance takes its toll. Where sleep is a precious memory. Where children growing up and growing stronger is terrifying.

Where tempests brew without warning and siblings are versed in self-defense. Where psychotropic drugs are a necessary evil. Where cabinets and pantries are secured behind lock and key. Where seizures are constant. Where skills once mastered vanish with the wind. Where potty training happens – again and again and again.

Where children vanish in the blink of an eye – wandering into the world armed with superhuman coordination, uninhibited by any sense of danger.

When we host a block party here on Autism Street, we’re reminded that our high wire act is really awfully quaint.

It seems our epilepsy might be the same. While the toll that it has taken on my girl’s language is by no means benign, it looks so far as though, God-willing, it will be manageable.

 

And that, for whatever reason, we’ve once again been touched by something potentially disastrous, yet spared the worst of it.

I don’t know where I’m going with this. We leave for the hospital in 45 minutes. There’s not enough time to play wordsmith, nor to find a tidy ending to this post. Besides, it’s a story that is still unfolding, bit by bit and test by test. All we can do is keep walking.

See you on the other side …

 

16 thoughts on “untitled

  1. Good luck with everything and stay strong. We’re actually soon to be going through a similar process with our younger one so I’m following your path closely right now and sending good thoughts your way.

    xx Ragga

  2. All I can say, again, is how much I love you, Luau, Katie and Brooke. I wish I was there with you. I am there with you.

    Love,
    Mom

  3. There is no need for “survivor’s guilt” here today. Every path is different, yes… but it is when those different paths converge that we can do the most to help each other. Let those of us who have been there before hope for you and your baby girl. Like it or not, you are a part of this village.

  4. Hang in there. My daughter has had many sedated MRI’s and EEGs at the same hospital, and they are usually excellent. My daughter has extreme separation anxiety, and everyone we have dealt with at Children’s has been very good about taking that into consideration. I hope that things go well and that you can get some answers.

  5. Thank you for putting a name to my feeling. I’ve felt so guilty that my son’s autism has been “high functioning”, or rather that he now adapts quite beautifully. That he’s able to do things most of my Aut Mom friends’ kids can’t do. It makes me feel guilty, confused, ashamed. Yep. Survivor’s guilt.
    I hope you know you don’t need to feel that though. My daughter has seizures as well, and fairly mild although she has multiple brain conditions that make it likely they will only increase in severity over time.
    ANY issues with the brain and seizures is scary as all get out. You have a right to feel the way you do, even if Brooke’s are “only” mild or likely to be outgrown. If you dodge a bullet, we will all be thankful for it, no matter how much “easier” or “harder” our situations may be!

  6. Hugs. Love. Explore, feel, taste whatever it is you are experiencing of survivor’s guilt — and then let it wash over and past. It is nothing to hold onto.

    I know I haven’t been commenting much — but I have been reading and sending love & oh-god-yes-we-get-this empathy.

  7. Survivor’s guilt. Yep, I know all too well that feeling. And I even feel it when interacting with mothers whose children are in my son’s general area of the spectrum–whose children are verbal like mine and participating in co-taught inclusive classrooms like mine. I feel it when a mother friend tells me her son refuses to attend summer camps, because my son not only is “willing” to go, but absolutely LOVES new summer camps. I feel it when another mother friend relates how her son melted down the day he was supposed to join my son for a music class, because my son was looking forward to that new interaction–the very one that caused hers anxiety.

    And then something happens to remind me that we, too, are still in the thick of it. That just because our children are only “grazed by a bullet,” we are nonetheless still on the same battlefield. I received a phone call the other night from the coach of my son’s new baseball team–the team that was created for kids who have disabilities that keep them from being part of traditional “little league” but who might not need the one-on-one support offered by the “challenger league.” Even though I knew the league was created for children like my son, I felt a knot in my gut when he said “I’m the coach of the baseball team and I’m calling about your son, H.” In that brief moment between this man’s first and second sentences, my anxiety spiked and foretold the ending I feared: that he was calling to tell me my son wasn’t a good fit for the team. I had no reason whatsoever to logically believe that is where this call would lead, but I have hardened myself over the years in preparation for disappointments. No, the coach wasn’t calling to kick my son off the team…he was calling to introduce himself and let me know when the first practice would be.

    Sometimes it is hard to know what to do with all of these emotions. Inhale…exhale…inhale…exhale.

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