Tonight was a real treat - again, like my small things post, you need perspective to appreciate this.
We had an amazing nurse tonight - she let us bathe Mikey, help change his dressings, help weigh him, make his bed, and Shell got to hold him for 5 minutes. I will post a couple of pictures later - I didn't take the camera tonight, so I'm emailing them off of my phone. Could be weeks before they get here. ;)
The look in Shell's eyes taking care of her boy was awesome to see. She and I have been leaning on each other in the dark moments and it was nice to finally feel a calm, almost normal moment. I was sort of picturing our first baby bath - with Michailey. I remember the feeling of thinking she was so fragile that I couldn't possibly rub her skin that hard or worrying about the shampoo near her eyes, or that she would be cold because I moved so darn slow and clumsy all the time. Tonight I got a chance to see how I got through those times. Shell showed me. That was nice to see again.
Rita told us today that we'll eventually feel normal again - except normal won't be what it used to be. There doesn't seem to be any choice in the matter either, eh? I suppose each time things change it's an opportunity to see things in a new light and make new choices.
Sometimes when things are at their worst for me, I've realized that many of those times are when people say or do things to make me feel backed in a corner. When some nurse says "Well, you have no choice but to keep your son here" I could really lose it. Brings me back to Mrs. Tancrede's math class in 9th grade when she told the class publicly I couldn't pass the regents because I didn't do all of her homework (again). I just told her I'd be at the pizza party for the nerds that got 95 and above. She had to call my parents and apologize when she graded and regraded my exam and had to score it 100%. Pizza never tasted so good.
There's always a choice, and I refuse to be told "You have no choice." Every single person I've talked to with a child with a disability or a loved one that faced serious hospital time has said you have to be a strong advocate for them when they can't be. Trust my gut instinct, ask for second and tenth opinions, etc. I'm frankly pretty sure that any nurse or doctor faced with the same situation as us would be doing exactly that, too. Why is it that they are all so shocked when I question the medicines, or ask about when my son might not be sedated anymore?
Cheers to every Mom and Dad that's gone over someone's head to get more information, ask more questions, stop incompetence from hurting their baby, and any other incredible situation that parenting proved to be the answer for. When I used to work with special kids I had absolutely NO IDEA what their parents had to deal with. My hat goes off to everyone of those kids' Moms and Dads and families that took care of them.
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