I keep planning to sit down and write. But life is busier than it once was, and times have changed. In the past few months Matt and I have separated, I found a new apartment, we finished renovating our condo we shared and put it up for sale, I got a new job, and we've been learning how to 'share' Charlie. I think we're beginning to get a grasp on our new lives, but it hasn't come easy. It's hard to be without Charlie, really hard. But, at least we both know that we're equally madly in love with her, and that she's in good hands when she's with the other parent.
As for Charlie's summer cold...she was in the hospital for 13 days, the first few bad, but otherwise her most mild/well fought off cold yet! Her ICU doctor told us that she "can't remember the last time a child with SMA type 1 handled a cold that well, and with out antibiotics...she handled it very, very well." That was amazing to hear! It was an especially difficult hospital stay for Matt and I to deal with though because Charlie got sick one day after Matt had left to visit his family in England. He felt helpless being away, and I felt overwhelmed and afraid that I may have to make some serious decisions on my own. But luckily everything worked out, and Charlie was home after less than 2 weeks, her shortest hospital stay yet.
Yesterday morning I shot up out of bed and instantly started BAWLING. I'd been having nightmares all morning that Charlie's nurses were dunking her head when bathing her while I was yelling, "No, no, you can't do that! She can't cough it up, STOP!" In scene 2 I was with my friend Lindsay and some others that I can't recall...Lindsay was holding Charlie and she started drooling...and her eyes were going red, it was obvious she couldn't breath and was choking (a look we see on a regular basis) Lindsay put her down frantically while I clumsily tried to suction her mouth...I was shaking. After I cleared her airway I fell backwards and started crying out uncontrollably, "I can't do this anymore guys, I can't do this!!" That's when I woke up, had a flashback of the entire dream within 10 seconds, felt guilty that I felt that/said that, and started BAWLING uncontrollably in real life. It was exhausting and set the somber tone for my day. BUT, I must admit, I had PMS, which ALWAYS makes the difficult to deal with, IMPOSSIBLE to deal with.
I'm tired. I'll be back. There's so much more to purge, but the energy is not there yet. To all of you who emailed me to ask how Charlie was, thank you!! It really is a great feeling to know that you care and you wait patiently to hear how she is. And rest assured, she's still fighting, and getting more and more beautiful and SMART, with every passing day!