A week ago I had a little boy sick with the flu
A week ago I wrote a FB status that said he might end up in the hospital
A week ago I was shocked they admitted him
A week ago I first heard a doctor ask if he went down quickly did I want him intubated
A week ago a doctor went to bat for us to find out news of genetic testing
A week ago we discovered he does not have SMA
A week ago I had never heard of an "infused" arm
A week ago I had never heard (or loathed) the "cough assist"
A week ago I had never seen my baby "dance" and "sing" with the vest
A week ago I had a child with hypotonia of unknown cause
A week ago I had never heard of Canavan's disease
A week ago I had never been told my child may not live to his 1st birthday next month
A week ago my child didn't have a pulmonologist or neurologist
A week ago I had never met these amazing doctors, nurses or therapists
A week ago I had a child who was having appointments set for therapeutic care
A week ago I had never considered palliative care
A week ago I had never considered a DNR
A week ago I had never signed a DNR
A week ago I had never argued with (multiple) nurses over oxygen
A week ago I didn't know how to put a child on an oxygen tank
A week ago we had hope that the condition he had was minor
A week ago I had never talked to hospice nurses
A week ago a chaplain had never given me her opinion on prolonging life versus prolonging death
A week ago Chrissie was still alive
A lot can happen in a week
My stomach lurches violently within me for the truth of your post. We are all but a hair's breadth away from eternity. Anything that tells us otherwise, it a lie. Love you. (LOTS). Praying for you and Manny (TONS).
ReplyDeleteBeth, I am a member of the SN China group and you and your family have long been an inspiration. I am so sorry that you all are going through this. What an amazing blessing that Manny is surrounded by the love and comfort of his family and the prayers of so many. Praying for more miracles, large and small, and for strength and peace for all of you.
ReplyDeleteI'm watching for your posts throughout the days, Beth. Sorry things are so rough for you and this sweet little guy. How wonderfully lucky he is to have you by his side! Keep your chin up and find sweet moments and many more miracles!!!
ReplyDeleteSo wonderfully written! It made me cry and remember..thanks for that as it is a good thing for me....I think of you often!
ReplyDeleteHugs
~Kathy