9:00
Up and raring to go! I give Maisie her morning feed along with some banana slices which as usual she has no interest in. Jeff stays home for a few hours to help me get her ready and get her off to school. We decided to just carry her in today and not worry about the stroller. Her classmates are going to have a lot of equipment to get used to and if we can eliminate one thing today they may be less overwhelmed.
10:00
Her school day will start at 11:00 and we need to block out fifteen minutes to get her in the car, drive there, and unload the car. By 10:00 she was done with her feed and playing in the living room. Before we leave, I have to pack up her pump. To make life easier on Miss Stevens (the teacher's assistant who will be in charge of Maisie's feeds) I'm filling the pump bag and connecting it to the tube so that all Miss Stevens has to do is attach her tube to the connector and the connector to the tube and start the pump. I forgot to bring in the bean bag chair she will also be using the other day and her special toilet seat (just a Bumbo toilet training seat with a supportive back attached), so I get all that ready. The bean bag is awesome for Maisie because she can control how much muscle she wants to use. She can fall asleep in it, she can sit up and play, it provides as much or as little support as she feels she needs.
Next I check her not-a-diaper-bag. She needs to have a change or two of clothes, her feeding backpack, and all of her meds. I plan on doing a medicine post soon, but just to give you an idea she takes about a dozen different medications every day, including stool softeners, laxatives, digestive enzymes, immunosuppressants, anti-seizure medication and just now we're adding tranquilizers to the mix. That doesn't include her monthly maintenance dose of IVIg or the over-the-counter antihistamines and pain medication she takes to manage her severe environmental allergies and unexplained pain. So anyway Maisie needs a bag with her feeding backpack, a change or two of clothes, antihistamines, pain meds, pull-ups (even though she is potty-trained she occasionally loses control) and her occupational therapy tools. Because her grip is weak and poorly coordinated Maisie can't grip a marker or colored pencil very easily. She's very much like a baby just learning how to color. She uses these knobby crayons and we made a couple of those tennis balls down below for holding various things -- glue sticks, markers, colored pencils, etc. So all those things needed to be in her bag too. And then (I keep thinking of more things she needs) we bought a second pulse oximeter and inhaler -- jeez I don't even talk about her lungs anymore do I? -- in case of emergencies. There's a little binder with instructions for her care, both routine and in emergencies, with doctor's numbers and emergency contact numbers.
10:30
I'm scared.
I keep myself busy packing and fussing.
10:40
Now I'm freaking out.
I am seriously freaking out.
What if she has a seizure I've never seen before?
What if her lungs collapse (I really don't update about her lungs ever)?
What if she can't breathe?
What if her inhaler doesn't work?
What if she can't eat because her pump broke or Miss Stevens can't figure out how to feed her?
What if she has a random reaction to some medication? What if she turns blue? What if she's in pain and I'm not there to hold her and dry her tears?
10:45
Loading the car. Loading the Maisie.
Scared, scared, scared.
What if what if what if.
10:50
Arriving at Open Arms Adaptive Preschool.
Check in with school nursing staff.
Jeff carries in the bean bag and the not-a-diaper-bag.
I carry in Maisie.
Door opens.
Miss Becky greets us.
Maisie is introduced (again) to other kids.
The other two kids with disabilities are already there and have already had their equipment and such explained. Immediately a little girl cries "What's wrong with you Maisie?"
Talk about feeding tube.
Talk about muscles.
Talk about breathing.
Talk about seizing.
Talk about a hundred other things.
Miss Becky announces it's circle time. Maisie's Baby-Snug has already been set up in the circle and so I get her set there and back up.
She panics.
I calm her down.
Miss Becky distracts.
I back up.
Maisie is not sure about the whole thing but there are colorful balls happening now so she's distracted.
11:20
After about twenty minutes I sneak out. I'm told Maisie had a complete breakdown when she realized I was gone, but it only lasted a few minutes. Totally normal. She had fun, the feeding and medicining went fine, no emergencies.
Of course, that's Miss Stevens's version.
I wasn't there.
Guys, Maisie can't talk. She can't sit up. She can't really play the way the other kids do.
She can't sit on the potty by herself.
She can't eat.
She is wonderful, beautiful, sweet, and darling just the way she is, but she isn't like her classmates. I cannot imagine that's going to be easy to deal with, both for her and for her classmates. How will she make friends if she can't talk? How will she play if she can't sit up? How will she be acceptable if she is so different.
I don't know.
And it scares me.
But this is a big step.
I have to let her do this.
I know she enjoyed her first day of school.
I have to let her do this.
She might get hurt.
But anyone could get hurt.
I'm really scared.
But I have to let her do this.
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