Moving ForwardApril 18, 2010 by Victoria Strong We are doing okay. Gwendolyn is back to wanting books and songs and helicopter rides. But it is going to take us a good while to fully recover from that episode. Sheer minutes, perhaps seconds, rallied in our favor yesterday and it is difficult not to think of the what ifs.
This isn't the first time we have nearly lost Gwendolyn. The first time came just two weeks after Gwendolyn was diagnosed with SMA. We had no idea what we were doing, she was still sitting up in her car seat, and she simply choked on her own saliva. Luckily we were across the street from the emergency room and had literally just met with our pulmonologist and so Gwendolyn got immediate support and help -- and we did, too. She has since had other chokes and even though we now know how to handle them they still scare the life out of us. But, this time was different. She didn't choke yesterday. She simply stopped breathing. We have analyzed and reassessed and discussed and rehashed and basically what it boils down to is our little girl was off her BiPap too long and simply got too tired to breathe on her own. No warning. No sound. She just stopped.
This time was also different because Gwendolyn is now old enough to have a deeper understanding of what happened. She was clearly scared when she was resuscitated and even hours later she was clingy and wanted reassurance -- and I don't blame her. And the hardest part is although she made no peep that we could hear, I believe that in her mind she told us she needed her BiPap, she told us she was getting tired, she may have even screamed for help...and we did nothing. We talked to her about it all, told her that we are so sorry, that we didn't hear her, that we know she was so scared, that we always love her...and she listened and needed to hear it. She needed to know that it wasn't because we were ignoring her.
Some time ago we watched the film The Diving Bell and the Butterfly (not really sure why we rented it as it hit way closer to home than is sometimes good for us). Even though it is not about a child, that film has stayed with me and I try to remember the lack of verbal communication from Gwendolyn has no connection with what communication is going on in her mind. Gwendolyn's cognition is exactly like any other 2 1/2 year old, she just can't get any of it out. And for Gwendolyn, who endures so much on a daily basis, I can only imagine what she wants to tell us.We feel heavy, we feel shaken, we feel so very fortunate that we still have our little girl. And we also feel acutely aware that she deserves the very best life we can give her while we still can. It would be easy for us to be so scared that we go into lock down mode -- we've done that many times before -- but she deserves more. Life moves forward and she wants to be part of it. So today we will hide our emotional bruises and do something fun for Gwendolyn.