Tuesday, January 29, 2013

I love her.

(Love of my life, 43 months)

We've been home from the hospital for a week and a half now. And something is different in me. I'm afraid. I'm not sleeping well  (even when I have the opportunity to do so) and I'm crying a lot. For the first time I am really seeing things for what they are. Yes, yes, I've always acknowledged that I have a "terminally ill" daughter but honestly it never really, really registers. If I'm with a group of people and the topic of Charlie comes up and someone doesn't know her or about her  situation I will explain that she has a "terminal illness"...I honestly keep saying it so that one day I will really hear  it and it will sink in. I do this because I think it will help me to 'prepare'. I've come to believe that it's our bodies way of protecting us...we shut such painful things out so we can carry on...who could honestly feel the weight of that on a daily basis and still get the laundry folded? What is changing though is that it is all really, really beginning to sink in...I have a terminally ill daughter.

This last hospital visit was intense and eye opening. At one point Matt and I met with a group of doctors and a hospice nurse and discussed our 'options'. Everyone was gentle yet frank, they really wanted us to have as much information as possible to make informed decisions about where we want to go with Charlie's care. We discussed that if/when Charlie dies it can be pain free and in our arms.
My eyes just welled up typing that. 
I can't stop fixating on the fact that in my lifetime my child that I (we) made and dreamed about our whole life and future with, will die in my arms. That is just fuc*ing brutal. I can't believe that I am that woman, that this is my life's path.

It was explained that at anytime, Charlie could get a plug in her throat, start choking and we may be unable to help her. I could be on the seawall, just walking along and this could all go down. I'm terrified of being alone when something horrible happens. I've developed separation anxiety. When Charlie goes to Matt's I get desperate moments to see her. What if the last time I saw her is the last time I ever see her?! But at the same time her care has become so much more demanding that we need the breaks too. Thank god for FaceTime. When we're home alone with Charlie she needs to be constantly watched. When I do the dishes I am continually yelling out to her in the living room, "Charlie say coca cola, Charlie say "Shrek" Charlie say, "momma" if she replies she's not choking, if she doesn't she may be and I need to run in and check that she's OK. This is our normal now.

The progression of Charlie's disease just sort of snuck up on us, like when you look at a picture of your child a year ago and you stare in amazement and really realize how much they've grown. There is no denying that Charlie is not the same kid she was a year ago. Smarter? Yes. Funnier? Yes. Talking up a storm? Yes. More beautiful than ever? Yes. Even sweeter (if that is even possible) YES.  But sicker and weaker? Yes. :(

I pray, pray, pray, that our girl keeps fighting and loving life and that Matt and I have the strength to handle whatever comes our way.
I love her, I love her, I love her.

Wednesday, January 16, 2013

Keep shining.

(Charlie, still smiling through it all, almost 43 months)

Warning: this is not an uplifting post.

Charlie is in the hospital again. But not because she's 'sick' but because we think the disease is progressing. I honestly don't now which is worse. If she 'just' gets sick, and doesn't die from a plug or any of the scary complications that sickness can bring, she has the opportunity to get better again, IF she makes it through. If she stays cold free and the disease 'just' progresses on its own, there is no turning back from there, it's just the new and less improved Charlie. Two complete shitty ends of the stick. The sad truth is that every sickness Charlie gets and makes it through from is one more X on her borrowed time card...every sickness takes a little something from her that she'll never quite get back.

These past few weeks Charlie has been sounding like an old pug. She has a lot of secretions (spit) building up and we are literally suctioning her every minute. But she's happy. So happy. As was the case with Charlie's delayed/questionable sickness and diagnosis in the first place, how do you know something is really wrong with your child when they are smiling ALL THE TIME?! Charlie has been having laboured breathing and has pretty much just been like, "I can't breathe but whatever, I love my life I'm gonna smile and laugh and sing and randomly say in my sweet Elmer Fudd voice, "I wuv you momma" and make everyone else around me melt to the sweetness that is Charlie." And that's what she does, she sweetly asks me, while batting her eyes, "I want momma to hold me like a baby." And I do, and she chokes, and I hurry to put her down ans suction her. But she just continues to risk it and love and be loved. It's worth it to her. She's amazing.

In the past week Matt and I have both individually experienced an episode where Charlie chokes when we are alone with her and we see her life (and our own as we know it!) flash before our eyes. For myself, I was putting her down for a nap the other day when I saw Charlie's eyes closed, her mouth open and in a circular shape like a person who is experiencing a hard cough, and heard some wheezing...but it was the look of shear fear in Charlie's eyes that told me, "NO, this is SERIOUS!" I started suctioning between POUNDING her back, I was trying to move out whatever was trapped...I looked around my room, I don't know what for, then I wondered where my phone was...I was frantic and wondered, "Should I run out to the hall and scream for help?! WTF do I effing do?!" All while pounding Charlie's back and sides and suctioning as deep as I could go. In the end I decided that running out into the hall wouldn't do any good, NO ONE but me could help her, IF she could be helped. No nurse, no doctor, no one. It would be too late by the time anybody could intervene. Charlie eventually settled. And I sat on the bed beside her and thought, "Holy sh#t. this. is. my. life." I was drained. Imagine your kid running into traffic and coming so close to being hit by a speeding SUV and you going into fight or flight mode and wondering "is this it?" Almost every. single. day. and sometimes a few times a day. It's not right. It's just not right. We are walking a tightrope with Charlie in our arms, who is looking innocently and lovingly into our eyes, and trusts us to protect her and keep her safe from harm. And that's the case with every parent, I get that, but I just feel like our fight or flight life or death scenarios outnumber our carefree breathe easy times, and it's just not right.

The scariest thing that's been on mine (and Matt's) mind is what Charlie getting sicker looks like now and in the long run for Charlie. A couple hours after Charlie was admitted to Children's hospital Matt and I had been given the tracheotomy talk. Please allow me to note beforehand here that I realize that this can be a touchy subject and I do not want your opinions on this nor do I want you to think I'm judging your decisions, this is my daughter, our life, our choice. OK, with that out of the way...from day one Matt and I discussed that a trach would not be our route. We would use bipap, but didn't want to trach Char. Our reasoning is that we felt like she would be letting us know that it was her time to go. Anyway, our discussions on it are not carved in stone, and we will be revisiting this subject tomorrow with all of Charlie's doctors and medical team. Let me just say that it has been a very emotional few days where I wonder "If we trach her she can't talk anymore and she needs 24hr round the clock care and what if she was telling me she wanted to go.." And on the opposite end of the spectrum, "If we don't trach her and they find a cure in 2 years will I be riddled with sadness and guilt at what might have been..." And of course I have NO IDEA how I'll be 'after' Charlie...I'm terrified of the unknown and my grief. There is no definitive answer. And I frankly do not fu*king like that! This is one of those choices in life that I wish wasn't mine (or Matt's) to make.

For the time being we are just going to bipap Charlie more, treat her like the fragile princess she is, and enjoy our time with her. Charlie is the love of my life and I cannot imagine spending my life without her in it. Matt and I are going to consider this hospital stay a reality check, one where we are reminded that our daughter is very sick and to really, really, enjoy her (and life in general) while she's here and happy. 

We loooooooooove you Charlie. Keep shining sunshine!