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September 28, 2013


About sums it up right now…..

We’re one month into the school year. We’re also into that time of year around Mary’s birthday where it seems like all of her doctors would like to see her. We’re also ramping up her therapy schedule again. And Girl Scouts has started again….. And Art Club….. And Robotics Club…. And all the papers coming home from three different teachers and two different schools…. And I can feel myself slipping. I feel like I can’t find my rhythm again. There is too much…..

Joyce is struggling with seemingly simple tasks which to her are anything but. She doesn’t give her teacher permission slips and other notes I send in with her. She forgets to bring her homework home…. She can’t seem to figure out how to give the teacher her lunch tickets (which I pay for ahead of time, so all she has to do is turn one in when she wants a hot lunch). So I keep getting these notes sent home that she owes lunch money, like I’m some sort of delinquent (even though I already paid for a month’s worth of lunches ahead of time…..) Yeah, that’s me. Hundreds of dollars each month on Catholic school tuition, but you’ll never get my $2.60 for lunch! Hah! So I came up with a plan that I hated. Troy would hand in the lunch tickets for both of them. But somehow that was stressful for him, and I could see the anxiety creeping back in…. Fine. I’m back to packing their lunches…. Easy, right? Except that they have to remember to bring their lunch boxes down from their classrooms with them at lunch time…. Oy.

Troy is becoming more and more tense, as this is the first year he has had to switch classes – one teacher for science, one for language arts, another for math…. In addition, it is also the first time he has gone to school without a team of therapists to assist him. He is doing it, but I can see the tension in him. It is taking a lot of tokens to keep up. But he is doing it. And I am so proud of him. But
I worry for him. He shouldn’t have to work so hard….

And then there is Mary, of course. This isn’t the life of leisure we let her lead last year, when we took a year off from extra physical, occupational and speech therapy…. We’ve gotten her in with a new group of therapists at a very special facility where the staff are very accustomed to working with autistic children and children with multiple disabilities and rare diseases. It is easier here in some ways. Not as much explanation is needed. They work her hard. They have the right kinds of equipment to help her. They seem to know what they’re doing. And they don’t dance around the issues, instead calling it as they see it. I like that. But it’s not always easy to hear. They are evaluating Mary for a wheelchair now. It’s a conversation I have had a few times with previous therapists, but we always felt like it could wait. A regular stroller could still accommodate her. And maybe, just maybe, she would build the skill and endurance she needed before she outgrew a regular stroller. That doesn’t appear to be happening. Her absolute max on the treadmill was 3 minutes and 20 seconds – which was awesome. But it left her completely and totally exhausted for two days after. And in reality, three minutes at her pace isn’t going to get her through a mall outing, or even across a grocery store. She’ll be turning four in just two short weeks, and while the new stroller I just bought for her can hold her weight for another fifteen pounds, she is long and lean for her age. So we are starting the process of getting her a wheelchair or pediatric stroller. Apparently this could take a while, so we’ll still get our use out of the new stroller. As an added plus, it’s the same team that will be working on her feeding therapy that will be evaluating her for the wheelchair, so they will be able to get her positioning right, as two of her PTs have already pointed out that she is not positioned well in the stroller. This is a good thing for Mary. She is getting what she needs. But, selfishly, I am still struggling with it. I am still trying to get up the nerve to use the handicapped parking permit that arrived last week. The wheelchair icon still taunts me. And now…..

I see her getting stronger in so many ways. She is able to be more clear with her iPad in terms of communicating with us. I can see more clearly now that she is understanding the things I say to her, even just in passing conversation. She is even teasing her teachers with her iPad – which should not be funny and should not be celebrated because it’s not very polite, but it really is and we really do. 😉 But I see her slipping in other places. The choking incidents that had been once a month or once a week have become an almost daily occurrence. That nasty fatigue has returned now that she’s been back in school each day. And then this morning, just as I was dropping her off at school, she had another one of those episodes. Those unnamed seizures. They seem to follow with the fatigue. And when it hasn’t happened in a while, I can convince myself that she was just tired and tuning me out. But when it happens….. No, then it’s not so easy to deny….

I’d be lying if I said I’m not scared. I’ve been pouring over research papers and other families’ blogs. Families whose stories sound eerily familiar to me. I am scared. As scared as I have ever been, and praying that I am wrong…..

But then real life calls me back. There are Girl Scout meetings and outings to plan (and yes, my friends are still laughing at me for taking that on!) , kids to drive to school, different after school clubs, doctors appointments, picture days, bedtime stories, homework, spelling tests, dishes, laundry, cooking, more laundry, playdates and tractor rides. It doesn’t stop. The world keeps turning and I will just have to find a way to keep up. But for now, Joyce’s team is stepping in to make sure she remembers her lunchbox and she is getting excited about her friend’s birthday party on Sunday; Troy is taking his new cat to bed with him each night for cuddle time (which is all kinds of huge for my boy that doesn’t like to be touched!) ; and Mary is giggling upstairs with her fish and her sensory lights. Despite all the straw, I have a lot to be grateful for…..


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