Easter 2021, our family portrait was via Skype.
It’s the hardest part so far. I have trusted my mom voice to her nurses and gifted them her memory making days.
We could visit, we have the first parental clearance granted in more than a year, but it’s too hard for her.
We did, however, get to see her, and she was perfect in every way.
We caught mostly views of her curls while she spoke to us. We had a tight view of her thumb as shown but we could tell she was proudly running from one thing to another showing us all of the things.
Her favorite room, is no surprise, the quiet room. It is filled with the sensory items that don’t amp her up.
Being autistic and having fetal alcohol syndrome makes her need for sensory input as important as water and for her it clearly ranks over sleep.
We spent 5 days in the emergency room, qualified for intensive care in a lockdown unit for children. While there we used a tail for deep pressure, fidgets for busy minds and fingers and a screen as much as it could hold her insatiable need to keep herself occupied.
Her outfit today was missing a bunny, her usual tutu, and all signs of spring but she was happily sporting sensory friendly shorts, scrubs top and the best accessories you can find, all things considered.
She needs to wear pants that aren’t crunchy, where she feels squished and naked in equal parts. They have to be smoother than butter and softer than your grandpa’s 17 year old flannel.
Her shirt was scrubs, because it’s what’s the other kids wear and she is trying her hardest. She calls it a paint shirt.
The reason her heart was happiest and ours equally so, was because her nurse made her a larger than life tissue paper hair bow.
I am talking about a bow Jojo Siwa & her fans would flip for. It was wider than her shoulders. And of obviously being custom made it was mermaid colors.
We can’t go see her today, but we got to use our hands to show ‘I love you’, we got to share a smile and she said Hoppy Easter then laughed but when pressed she didn’t understand the play on words.
I didn’t make her basket, I didn’t search Pinterest for the cutest sensory friendly activities for the season. But, they did.
They prepared baskets for the children, that were safe and snack filled, there are springy activities going on like birdhouse painting and rice crispy treat basket making.
She thinks she is at an all inclusive, mermaid camp, filling her with powers and tools.
And she is right.
That’s exactly where she is.
My heart breaks and I feel a moment during every minute where I give away another part of my soul.
My schedule is oddly full of things to do, with a new ability to do them and with that, comes guilt.
Does it sound like my daughter made it impossible to thrive? That’s not how I mean it.
Does that sound like blame, because in my understanding with blame comes shame, and that makes me want to be sick.
My sweet six year old is enduring the last stages of the fight of her little life.
She is getting help, right now the goal is safety and acclimating, tomorrow begins the intensive work, observation and shifting.
She is in one city, in a room with a view. Her dad and I are in another city, trying not to look at her room.
My six year old has nurses with her 24/7, partially because she is absolutely magnetic, but also because she is unsafe without them.
My daughter lost a tooth this week in an terrible Emergency Room, and the fairy found her, so she had totally faith the Big Bunny would as well.
Last year she wondered if he had a sleigh or something, a team of garden elves making chalk and jump ropes.
This year she has no concept of thinking outside of the moment long enough to consider how a bunny could hit the buttons on an elevator or that jump ropes are long past the 6” safety standard on any strings allowed in the unit.
While, we are separated, I am thanking God for answered prayer because no matter how hard this is, she is getting everything she needs.
I wonder what next year will hold.
We ask, today and always, to hug your kids for us, hug each other a little longer, and remember to find reasons to smile. If she can, we can, and if we can, you can too.
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