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!


  1. Cherie, I don't personally know you but I know Matt. I read every one of your blog posts and entries on FB. Charlie's cognitive abilities shine through in every video you post. Charlie is wise beyond her years. I believe that you and Matt will make the choice that is best for her with her in mind. No judgement just love. Sending all my get better, find a cure vibes your way!

  2. I could totally feel your emotions, high and low, reading this post. I wish I had some special words to lift you up and make YOU feel 'better'. Sometimes it is hard to know just what to say. You are a pretty impressive mother that is for sure. I hope that you get a nap in over the next few days. Sleep does wonders!

  3. I don't know you or Matt or Charlie, but I have following your story for years (years!) now. I'm sending you love and strength and wisdom and hope--I know you will make the decisions that are right for your daugther and your family.

  4. Cher, sometimes I forget what you are going through because you are so positive and funny and supportive of everyone else. I think you are so amazing and I know whatever you decide it is the best for you and for Charlie. Stay strong and stay you. xo

  5. I'm not sure what to say but I wanted to let you know that I have read your post and many others that have come before this one. I suppose I just wanted to you to know that I am thinking of you, Matt and your sweet Charlie. Such a difficult time for you all. And whatever your choices and outcomes, there are so many of us "unknowns" out here that will be with you through this, sending our thoughts and hope for you all. You have made so many great choices in caring for your girl all through her life! She's amazing, as are you Cherie! Keep shining sweet Charlie!

  6. Charlie is such a trooper and shows so much strength and so do you. Keep shining.

  7. Cherie, it's so hard to know what is the 'right thing' to do, it must be a complete roller coaster of emotions that go along with trying to do the right thing. In the final analysis you will know what that is. No matter what that decision is, you have my support and understanding.

    Just know that I am praying for Charlie and so are lots of other people, as we are for you & Matt. You are such a strong person, Charlie couldn't have a better Mum.

    Big and Many Hugs to you,