Carmen is not doing well at all. She has been awake for days, only sleeping for a couple of hours at night. Her heart rate is staying in the 160s while awake. She is really laboring to breathe. Today her Hospice nurse, Leslie, came by and we are putting her back on an antibiotic and prednisone. We have started giving her Morphine and Lorazepam (Ativan) to calm down her breathing and help her sleep. Carmen is having many apnea episodes where she suddenly stops breathing and then restarts.
Leslie said today that the end could be at any time.
Carmen is not following a “typical” Tay Sachs pattern. Perhaps it’s the AB Variant. I am not sure we will ever know why she is having such intense breathing difficulties. There are no AB Variant patients to compare her to.
All along Dave has been praying that, no matter what, God would be merciful to Carmen. As heartbreaking as losing her is going to be for us, I cannot think of anything more merciful than for Carmen to be in Heaven. She will be able to run, play, smile and laugh.
When I am having a hard day I think it is horribly unfair and wonder how this could be God’s best for our lives. But, then I remember our pastor’s wise words when he said what a privilege we have been given to usher this little girl into the Kingdom of Heaven. We so often ask for blessings but then tell God what those blessings should be. There is no doubt that Carmen is one of the biggest blessings of our lives even if we only have her for a brief moment.
I don’t know exactly how I will feel when Carmen dies but I think we will just feel so incomplete as a family. We may go on to have or adopt more children but no one can replace Carmen. I am going to miss her so very much. I want her to keep fighting so I have more time with her but I do not want her to suffer.
Last week I had a really bad day. The next morning Dave let me sleep in and when I woke up he told me that Wendy had dropped off Chicken Parmesan! Now, that is a good start to a day! Thank you, Wendy!
My sister-in-law, Karen, and her 3 kids have stayed with us since Friday and the kids are having a blast. Lauren loves having her cousins to play with. Dave got some great shots of Dakota, who is almost 8, holding Carmen.
We are working on Carmen’s Celebration of Life party on her birthday. I think it is all going to come together!
