Everyone I see asks how I'm doing. It's not a bad question to ask, I simply don't have the energy to answer it completely. So, I'll answer it here. We are doing okay, not great but also not horribly. It can change by the hour or even by the minute. I'm clearly holding more pain than I'm aware of as my stomach is unsettled daily and I feel like everything I eat makes me feel worse. I have a really difficult time sleeping and have finally gone to the doctor for some assistance. I avoid going to bed until it's extremely late, then struggle to fall asleep. I'm exhausted in the morning, but wired the next evening as my body fights sleep once again. Last night I finally fell asleep easily, thanks to some help. Unfortunately I don't want this to be a long term need and I'll only have help for 2 weeks.
Sadie still talks to me about her sister everyday. Yesterday in the car she asked me if Jesus had wipes. She said that he would need them to take care of Hope. I told her that Jesus had everything he needed to care for Hope in Heaven. Sadie looked up and said, "but he doesn't have us." Those moments are difficult. I agree with her, I simply can't jump into a conversation like that without breaking down. I know it's okay to cry in front of her, but I don't feel its good for her to see me sobbing and irrational.
Shawn and I struggle in many ways because of the relief we feel. We have been contacted by many families that have lost children. There are some ways that we can connect with their story, but many that we cannot. If we lost Sadie, we would be able to connect with their pain. Losing a child that you deeply love, but that is extremely sick and has been in hospital for 9 months straight at the time she died, is simply too different. Hope suffered. She did not have any guarantees at a future and we had to choose to raise Hope and missed out on a lot of raising Sadie. I would take Hope back in a second, if she was home and stable. I wouldn't take Hope back the way she was though. I can't imagine allowing her to come back to be poked multiple times a day. To be attached to wires that prevented her from seeing the sunshine and developing properly. I loved to snuggle Hope and selfishly I want that back, but nothing else in her life was good. She is so much happier now and although it hurts, we feel so much relief for her.
I keep myself very busy. I don't find it helpful to have an open day with no schedule. Sadie is thrilled to be playing with all of her friends again and I am happy to be connecting with their moms. I'm trying to do some normal things around the house, like cleaning a toilet. I have been able to get to some things, but find that I burn out more quickly. Some days I sit in Hope's room and go through all of her blankets and sleepers and touch them and remember the days she wore them. I would love to dress her again and snap on her sleeper. I long to change her diaper again, one that never got larger than a size 1 even after 13 months of life. When I stand at the park with Sadie, I feel like my arms feel odd and should be holding Hope. If I'm there with someone else I'm distracted and those thoughts are more fleeting.
Even a trip to Superstore can be difficult. Yesterday I went to the Pharmacy to fill a prescription and instantly thought of all the times I was there to pick up Hope's medications. Walking past the baby clothes I could see things I would have bought for Hope, heart covered sleepers and slippers. As I packed my bags I found a note with the transplant coordinator's phone number at the hospital. When I arrived home I found Hope's autopsy report in our mail.
Reading the autopsy was difficult. We will be meeting with her cardiologist in the near future to discuss it. It's like reading a foreign language and we need to fully understand it. It was the written account of her last night that deeply grieved me. Hope arrived in Edmonton at 7 pm and survived two cardiac arrests, one at 7:22 and another at 8:00. I arrived at 8:30 and her time of death is listed at 8:41, the moment they stopped treating her and put her into my arms. Although her heart was still beating from the medications and the breathing tube was still in, they already believed she was gone. I still hate that I followed the law and did not speed the entire way. I could have been there at 8 instead of 8:30.
Overall the report shows that Hope's heart was so much worse than they realized. She should have been listed for a transplant months earlier and she could have benefitted from a cardiac surgery, although risky. It's difficult to read that we did have options. Although they were options that Hope's body did not show well and it was difficult for the doctors to see what she needed. It was often that way with Hope, her body never properly reflected her needs and we were left guessing.
I am a broken woman that is only whole in Christ. My family is missing a member and although we find that living each day is possible and we are okay, we remain broken. We will only truly be whole again in Heaven with Jesus and sweet Hope.