So as you know, Cicily has had significant loss of function over her lifetime (crawling-not, sign language of 75 signs- 5, hand control-tight fists, etc...) Along with these outward muscles and function deteriorating, her inner muscles have also been losing some function (more lung issues, less bowel movement).
On Tuesday Cicily went to school like normal and ended up falling asleep at school (NEVER happens for her, she hates sleep). When I went to pick her up, her 1:1 nurse Tamara (who has been a miracle for 8 years of Cicily's life) let me know her pulse was weak. I brought her home and we snuggled in the chair. Around 4 I texted Chris and let him know her tummy was very huge (presumably with gas, but worse this time) and her breathing was quite labored, but that I thought he was fine to stay at work. (When you have a child with a shortened life span, you do weird things like staying at work when they might be dying, because you have to keep living!) Chris came home at 5:30 and agreed she looked bad so we called her grandparents over to see her and help Chris give her a priethood blessing (a special blessing/prayer of healing or comfort).
Chris and I felt this blessing would guide us in our decision on what was best for Cicily. We both felt like her body was wearing out enough that an ER visit and subsequent surgery would be more harmful than helpful, but we wanted the clear guidance from Heavenly Father that that was Cicily's path in life at this time. I'm sure Chris was still hopeful to bless her with healing and a strong body as he's always felt he could. But at this blessing, Chris felt very impressed that he was to bless Cicily to be able to meet her angels (great-grandparents, family, friends) waiting for her in the spirit world (where we believe our spirit selves live after they leave their earthly bodies).
We honestly thought Cicily was doing badly enough that Tuesday night could have been her last night on earth.
Then Wednesday she woke up (after farting up a storm in her sleep!!) Since we felt that surgery and other major medical interventions were not going to help Cicily at this time and it is her path to move on, Chris called hospice (usually I do this work, but I couldn't make that call). We are now officially set up with hospice and meds like morphine if she needs them for pain.
1 comment:
I understand what your going through. Preston had the same bowel problems. It's hard to watch them and to decide if it's better to not do anything at all for them. Prayers ate coming your way.
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