Monday, April 18, 2011

Recovery Time

Over the years, the main physical trouble that Daniel has dealt with is coughing and congestion that linger on. When I hear the first sniffles, I know that we'll soon be getting the nebulizer out to tackle his cough. He's never been hospitalized because of it, and it's never progressed to pneumonia. The trajectory it follows is familiar territory.

Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.

Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.

For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.

Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.

I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today! 

Saturday, April 9, 2011

Bring on the buffet!

Yesterday I got a call from Daniel's school nurse. He started middle school this year, so everyone is still getting to know him. She asked if it were ok for him to have "table food". Sounds like a strange question to ask about a twelve year old, but Daniel has had an aversion to solid food for years. He mostly likes to drink his meals! I send in things like sweet potatoes, oatmeal, stuff that the occupational therapist helps him eat. Some days are better than others, but he's always done much better for the school staff than me.

I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.

This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?

Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
     There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities. (Changed by a Child p.71)

Enjoying a sip of water from a straw.

Ignoring oatmeal in preference to his hand.

Then it's on to ya-ya-ing hand to mouth, and playing with some favorite toys.

I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.

     Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)

Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on. 

Sunday, April 3, 2011

Back to School

Today was our last day of spring break. We had ten days off and managed to divide it pretty evenly between time alone and time together. Melody and I shopped and had lunch on the first day of break. The following week Daniel took a trip downtown with me to pick out a new walker.

All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking. 

We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.

The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.

Now I'm counting down the days until Easter!