Dealing with reality

Writing these entries is more difficult than I imagined it would be. Perhaps it’s due to the fact that it makes things more real when I put it in writing?

Ethan has been a bit “down” the last couple days. Although, there are a couple periods throughout the day where he is in good spirits. He receives Benadryl to counteract one of the antibiotics he has to take, and the Benadryl tends to make him a bit drowsy and withdrawn. He can sleep it off, and usually will wake up refreshed, and sneak in some fun prior to receiving it yet again.

This morning is was really grumpy and angry. Of course he takes it out on me, as I am the one here with him, and I am Mom…who better than Mom to take out anger on. It hit a chord today with me, and I had to leave the room for a bit while the nurse was there to get a grip, and compose myself. After coming back in, I realized that I felt better after releasing a little cry and perhaps he would too. I asked him why he was angry and grumpy, and if he was sad about something (stupid question, I know…of course he is…), and this did open the floodgates. He began to sob, stating the obvious: he wants to go home, he wants to play with Emma and Eliot, he wants to sit on his spot on his couch and watch TV…he wants his world as he knows it back. It breaks my heart.

I explained to him that…”I want that too, and that if we could do that we would. BUT, we have to be here, until the “bad stuff” gets out of his body, and the doctors here can fix that. Of all the places in the world for us to be, this is the best place in the world…and they can make you better here. And as soon as you’re better, we’re going back home.”…to that place you know, and the people you love…

We had a couple good, happy hours together, after his nap this morning. He got “unhooked” from his IVs and meds, and we went to the garden, shopping in CVS, and discovered a new, small garden with a wishing fountain. He made a few wishes, flicking coins in. If any wishes come true, I wish those wishes to come true.

I realize now, that no matter how paranoid I am about exposing him to germs, I can only take it so far. He needs to see those people that he loves, those people that bring life to him, and pull the smiles and laughs out of him. He had one of his closest friends visit for the first time today. While he wasn’t exuberant, I did see him light up inside, and just enjoy playing again, like he did a few weeks ago. His other close friend is coming in on Thursday, and his cousins, Joey and Cassia, come in tomorrow. These people, their love, this normalcy, is what is going to make him strong, and continue this fight.

Tonight was great…his mischief returned. While I was in the kitchen making him Ramen Noodles, he got out of bed, filled up an empty medicine syringe with water from the sink (his favorite nurse gave him one to play with), and squirted it on the floor. He thought it was hilarious. Then, he took the medical tape, and made a ramp for his new toy-model motorcycle. He wore his mischievous smile for quite some time.

Then, he had an idea to put a strip of medical tape down the middle of his hair on his head. I didn’t think anything of it, neither did the nurse in the room, until he started to pull the tape off. We were both shocked, needless to say, as we didn’t anticipate it. Yes, you guessed it…the tape was completely covered with hair as he peeled it off. So, while this stripe is not completely bald, it’s an “abstract stripe” down the middle of his head. Ethan saw the hair on the tape, I took a picture (sick way of dealing with things, and making light of the situation), and then re-explained to him that the medicine he takes does make his hair fall out. To date, he hadn’t lost any hair…so this was a bit of a shocker. And this is one of those things, like childbirth, no matter how many times you hear it from someone, and what’s going to happen, you’re never prepared for it, and you have to find out for yourself, and deal with it in your own way. He hid under his pillow, didn’t want to talk, and fell asleep for the night.

That’s the hardest part. I can’t make this better. Moms can fix everything right? Well, I can’t fix this. I can’t make him say, “It’s okay, I’m losing my hair”, ’cause it’s not okay, and he knows it. I don’t have the right words, and no one does. He has to come to terms with these things on his own. I can talk, explain, joke, re-explain, comfort, try to soothe…but he has to work it out in his mind. He knows I’m there for him, but he still has to work things out through various emotions and stages.

Being here with him is easier for me than being at home. I’m able to focus on today while I’m here, about what he needs today, about what we’re going to do today, about who might be coming in today, about what medicines he needs today. At home I only think about the fact that he’s not there, and…the future…and who knows the future…but I have hope. I have hope that we’re all going to be back at home, together, one day…after my Superhero defeats this monster.