Brynlee

Last night I finally visited our own blog after weeks just to read the saddest subject line of one of the SMA families I track on our blog. The Listons lost their daughter, Brynlee, to SMA on June 6th. I am so sick to my stomach. I never did have a chance to meet her in Salt Lake City due to either her or Maya being sick but I know that her and Maya would really have liked to play with each other. Both have spunky personalities it seems. I wanted to wake Charlie up and tell him but I knew he wouldn't be able to sleep. So I waited until this morning. Even he is recently feeling a huge grief feeling from all the friends we've made and the news lately. Brynlee was such a beautiful little girl. A fighter. Her picture has been in the FSMA booklets every year. Such a cutie. We will miss you, Brynlee, but we know you are now free of this disease and running around and enjoying your new life. We will have the Listons in our prayers while they cope with Brynlee's loss.

It's moments like this that prompt all us SMA moms to post about Brynlee and the sad reminder of what SMA really means. I know I don't talk to anyone much about the fact that SMA is terminal but it is in fact the case. It does no good to talk about it for me because Maya has ears wide open listening...she is so smart. I try so hard to be strong for her. But tonight I am really hurting. It's just not fair. It makes me never want to leave her when she is sleeping. I actually have Charlie keep her monitor on the highest level so I can hear her breathing. We don't keep her on the pulse ox machine every night. Only when we she is sick or when she looks to have started a cold. It makes the guilt worse when she begs me to sleep with her. Sometimes I wonder if the days she really cries for me to sleep there are just the three year old blues or her sign of needing someone to watch her while she sleeps. It's a tough decision but I try not to make the bad habit of doing it.