Friday, November 16, 2012

My daughter.

(on the mend @ Children's Hospital)

My daughter. My daughter. My daugh-TER. Two words that just naturally fell from my tongue the past 3 years and 3 months. Of course for the first few months after Charlie was born those words seemed so strange to say...I loved saying them, but I felt like a fraud and it took a few months for 'my daughter' to really feel legit. After that, it was completely natural and I felt like life had been saving this label for me (Charlie) my whole life, just waiting for me to be ready to accept it.
Lately though, every time I catch myself saying "my daughter" the words reverberate in my head...I feel an immediate flash flood of pride come over me...if I was a peacock my feathers would be fanned so proudly no one could miss me and people would "ooh" and "ahhh" over the glorious display. I'm sure this is happening because I am more and more in awe of Charlie's courage and resilience...she goes through and puts up with so much yet she is the happiest most optimistic little being I've ever met. I have learned more in the last 3 years since being blessed with Charlie, than in my 31 years before her. She is my little professor of life and true love.

Speaking of courage and strength...Charlie was recently hospitalized for 3 weeks with what seemed to be her worst sickness yet. There were at least 3 occasions where I thought we were going to lose her. In one instance I remember there were about 6 nurses and respiroligists in the giving her oxygen, one deep suctioning her, one checking her bipap, it was tense in the room, Charlie's heart rate was high and her oxygen was really low...I was asked to give her chest physio while everyone else carried out their 'jobs', In all honesty, I didn't want to,  it was too much pressure, but I complied...I sorta froze and had an out of body experience...I saw myself above myself watching the stressed chaos in the room, looking down at all the help and Matt and myself. I felt like I couldn't breathe and like I was going to pass out but it wasn't transparent to anyone else in the room, to them I was just doing what they asked, pounding pretty hard on Char's back and chest trying to loosen the plug that threatened her life, but inside I lacked confidence in my ability to help and I saw her dying and I saw my life without her, and it wasn't pretty. In that moment all of the fears I push aside on a regular basis surfaced and I realized I can. not. live. without. Charlie. EVER. Ever. EVER. It just can't happen. Case closed. 

While we were in the hospital as per usual we went over the 'how far are you willing to go' business with Charlie's main respiroligist. Matt and I had always discussed that as a last resort we would be willing to intubate Charlie (a tube pushed down the throat to help her breath when she can't on her own). It was/is the one tool we felt we had in our pocket, the one thing we would try once if nothing else worked. We'd been warned in the past that Charlie's jaw is recessed due to SMA and muscle weakness and it could be pretty painful to intubate her in an emergency situation, but like I said, we just want sooooomething...we need one "in case of emergency break glass"option. Anyway, when we were in the hospital this time and we were discussing this with the doctor, she looked over at Charlie and said, "Ya, I'm looking at Charlie now, and because of the recession in her jaw, I don't think it would even work." My heart sank to my foot at 100 miles an hour. Really?! Please don't take that away from us. And not at a time like this when we're worried we're gonna have to break the glass. We were devastated and felt instantly powerless. The doctor was just being honest but I don't think she knew how much security it provided us with to have that in our pockets. Now we have nothing but hope. Scary Sh#t.

This was Charlie's first hospital visit since she learned how to talk. It was heart melting and heart wrenching at the same time. Charlie would cry out, "moooooomma" every time she got chest physio and deep suctioning, and it would break my heart. But eventually she realized it helped and every time a nurse or therapist was finished helping Charlie, she would say, "Fank You!" OMG, now THAT is the heart melting part! 

After three weeks of many touch and go moments, Charlie made bail and was released for adorable behavior. We are back home where we belong. Her current fixations are Halloween, fireworks, and Christmas. Doesn't get much better than that, does it?