Reality and The “F” word

For the last 5 months, the “F” word means FEVER. Last night, Ethan started a low-grade fever of 37.7c (99.9 F). The last couple days, he’s been more tired, less appetite, less drinking. What does this mean? Not sure…We’re due in @ the Jimmy Fund Clinic tomorrow, Wednesday, @ 9am. I think that perhaps it’s the increased physical activity last week/weekend that has caught up with him. Maybe he wasn’t ready to work his body so hard?

We ended up “hooking him up” to the IV fluid last night, as he hadn’t drank enough throughout the day. I take his temp again last night, after I tuck his little skinny body into bed, bare head peeking out of the covers. The rule is that a temp of 38.0 twice in 24 hours, or a temp of 38.5 buys you two nights in the hospital. We’re not ready to go back there…not yet! I walk into my bedroom, hoping that Ethan makes it through the night, sleeping soundly, without going any higher. I check a few times, only with my hand on his little bald head, throughout the night…no hotter. Thank goodness. But it makes me realize, we have to be ready at anytime to head back in for a few days.

REALITY: We’re hanging in here at home. While we love being home (I know I keep saying that…), it’s an adjustment…it’s a tough new routine. The many jobs/roles are catching up to me, testing me emotionally, physically. I find comfort in talking to my mom this morning, a seasoned expert in parenting, nursing, coping. If I talk to you in person, you probably won’t hear the reality from me, as right now it’s too hard to talk about and convey to someone that’s not going through it. Emotionally and physically, I’m somewhat worn down. I’m coping, and realizing I can do it, but still lacking something, somewhere. Mom, Nurse, Teacher, Wife…that’s a lot to be, at least for me. I haven’t even been the Wife…that seems to be out of the question right now. Not fair, I know…but REALITY.

I ran into Ethan’s “speech” teacher, Jane, last night in the grocery store. She’s way more than a speech teacher to us; we call her Ethan’s Angel. She molded Ethan into the hearing and speaking boy that he is, and she is why we don’t, and no one else does, think of Ethan as DEAF. As I wrote to her today, “…And seeing you last night reminds me of how strong Ethan is, what he can do, what you have made him do and can make him do, what you have taught him and will continue to teach him to do, and how I can’t wait for us to be coming to you on a regular basis again.”

I’m going to blame Jane for making me so emotional today, as she unintentionally draws out my memories and thoughts of Ethan, prior to 6 months ago…Jane was our routine. Every Monday and Wednesday we go see Jane. That’s what we’ve done since Ethan was 5 months old…5 months old…wow…That’s what Ethan and I do, we go see Jane. And to see Jane, and realize that Ethan and I haven’t been going to see Jane, that’s hard…that means that something is wrong, if we’re not seeing Jane. Something’s wrong…It took seeing Jane in the grocery store to realize that something is wrong. This is the “event” that triggered the emotional flood gates.

Anyhow, Jane was at the grocery store to buy Ethan’s favorite snack – Rainbow Goldfish – Jane always gave Ethan Rainbow Goldfish. So, she sent these Goldfish home with me, along with a Halloween gift bag filled with goodies she knew Ethan would love. And he did! Today, he made his Halloween Pizza (a large cookie)…and gobbled it up!