I realize that I use this blog as a forum to not only share my most recent photo sessions, but also as a means of relief for the stress associated with raising a CF child. I apologize if any of my readers have a difficult time swallowing my words, but if I could create a graph that would express the relief I feel after one of these postings, you would at least know that it was asthetic for me! haha Tonight I had a brief brush with reality. Foolishly, I went surfing the web for CF related stuff. STUPID. STUPID. STUPID. The first thing they tell you when your child is diagnosed with Cystic Fibrosis is to avoid the internet at all costs. They say frankly, don't touch your search engine. The only site that is fair game is the Cystic Fibrosis Foundation site, otherwise you are likely to be scared to death by the misuse and abuse of out-of-date information available on the web. They seem to have all of the right information. It's up-to-date, accurate and believable. It's an amazing site. They have the drug pipe-line, the stats, the latest in research...it can really sooth the nerves. I understand my daughters disease. I've read literature, I've attended seminars, I've sat and listened to doctors and nurses translate into english what's happening inside of her little, fragile body. You can hear all of this. You can try to wrap your head around it. You can prepare yourself, average the years they may be around, you can even rationalize that your child will live longer than the rest because of the impeccable care you give. You can't however outrun videos such as this. I wouldn't be posting this if it weren't endorsed by the Cystic Fibrosis Foundation itself, but I felt so compelled, so touched that I felt it was important enough to share. I realize that every May I reach out and remind friends and family that we are walking for a cure, but the family's story I am about to share really puts things in perspective!! I don't think I swallowed the idea that these children were still being taken so young. I've assigned Piper an age of 35, haha, I know that sounds ridiculous. In my head, I assume and expect that she will be around until at LEAST this age. To imagine that she would be taken sooner is just too much to bear. It tears at my heart strings to be asked to expect an earlier date. I feel the need to mention that merely 3 years ago, my sweet little girl was sitting hooked to electrodes being given a sweat test at Mass General Hospital after being misdiagnosed at a smaller regional hospital. I sat stone faced in that tiny room. It's like being read a death sentence, only it's not your death sentence. It's far, far worse. It's like having your arm lopped off at the shoulder...and somehow you're just supposed to take it. I recall the color of the walls, the chairs, what the doctor was wearing, his expression, the nurse placing her hand on my back telling me it was okay to cry. I just sat there. I just sat there staring blankly at the 2 week old baby sitting across from me in her carseat on an examination table. I didn't cry. I couldn't. If the tears had started, they never would have stopped. I had a lump the size of North America in my throat, but I swallowed it...for her. It was just she and I. We were in this thing together, till death do us part, she and I. Never a day goes by that I don't thank God for her. She is the greatest miracle I have ever known. She brings light to my life that I never knew existed. She gives smiles, even when she is ill. She giggles through her nebulizer mask, and it just radiates somewhere inside of me. I guess other folks around me may not be so aware, but I study her. I have to. I need to know that she is okay with what she has been dealt. I need to know I'm doing all I can to make her life as normal and comfortable as possible. For all of the nebulizer treatments, the medications, the chest physical therapy...for all of that...underneath...underneath there is a little girl, a 3 year old that loves to laugh, to play, to run in circles until she collapses, eat chocolate until she feels woozy, hug mommy until her eyes pop out. She is my world...it just doesn't rotate without her! How am I supposed to ever imagine it to spin without her in it? As CF parents we are supposed to, aren't we? Just doesn't seem quite fair, does it, but there it is anyway. I appreciate the chance to release my feelings in this forum to get these intensly heavy emotions off of my shoulders...my readers, my clients, my dear dear friends and family...you lighten the load more than you could ever imagine. I know it's scary to discuss. I know you fear what to talk about when I bring her name up. Just know that I feel a little bit lighter everytime we get to talk and I thank you endlessly for the chance to do so! I love you all so much! Here is the video that I so intently am strong-arming you to watch...it will change the way you see her, it will open a window into the importance and the intensity of this disease...it really, really will!
http://youtube.com/watch?v=1yRSCohAUtg
Much Love!
Courtney
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