Some days I feel the strength of a lion, or Jesus in me. Other days I feel like I'm weak and not able to carry on. Today was a tough day. This morning, for the millionth time, we had to all get up early in order to drive Shawn to the hospital. We are a one car family and have been all along. It works perfectly for our family because of where we live. Shawn rides his bike to work and in the evenings, we go out as a family or one of us stays home with the kids anyway. This still works during the week for us, but the weekends are now a dreaded thing in our home. If I want to accomplish anything, or give Shawn a break later in the day, we have to get Sadie up early and go to the hospital in the morning to drop Shawn off.
This weekend was especially bad as Shawn needed to do a lot of "man" work on the old house. We still had things in the garage that needed to be thrown away, taken to the dump or moved. Shawn was going to spend the morning at the hospital and I was going to take over at noon, with Sadie. Sadie does well at the hospital for a time, but 5 hours is sure pushing it. Thankfully my Mother in law rescued me and came to help me with the two girls at the hospital. Sadie was then taken with some friends to a BBQ with lots of kids that she's been begging us to go play with.
When I was a true stay at home mom, I used to get together with friends all the time. Now that I'm at the hospital all day and Sadie is with Melanie, her nanny, we hardly get together for play dates. This is difficult on me as I miss those times with my friends, but it's also hard on Sadie as well. On Friday I sat and cried after thinking about the beautiful weather and playing at the park with Sadie. Instead I sat in a room all day with a baby that slept for half of my time there, but will randomly wake and be upset if I'm gone.
Shawn and I are burnt out. As we pulled up to the hospital this morning he asked me if I was okay and I burst into tears. I am so frustrated. I just want Hope to come home and now it could literally be months or even years before that's possible. I know that I'll pull myself together for my family, but I'm terrified of continuing this journey for the entire summer and perhaps into next year.
One of the ICU doctors convinced the nurses to transfer Hope's pile of pumps, tubes and wires into her stroller. They then allowed us to walk around outside with her for a few minutes, with them of course! It wasn't a long walk, but was wonderful to get Hope outside and a much needed distraction from another day at the hospital.
As this journey continues and has no end in sight, I find we spend less hours at the hospital. I used to be shocked when I would see children alone, now I understand. We still don't like Hope to be alone and only leave when she has a volunteer or friend with her, but we do leave. At first we left at dinner time, then overnight and now we've realized how burnt out we are and have started looking for people to sit with her on Saturday and Sunday mornings so we can actually look forward to a lower stress weekend and some quality time with Sadie. I feel guilty at times, but then I have to remind myself that we are protecting our family by keeping ourselves from completely breaking down. If this was short term we could stop our lives, but it's not. Eventually I have to start grocery shopping, paying bills and taking care of our family again.
Hope is back on oxygen full time now. She was needing it more and is currently relying on it. She continues to have diarrhea at night and threw up in the night last night. By the pile of laundry I found today, I'm guessing she threw up a lot. She was off feeds until we got in this morning and appears to be alright now. The doctors did find a way to put her diuretics through the PICC line with the heart meds! That will help with Hope's breathing as they are much more effective. At the same time, the diuretics are slowly destroying her kidneys in the process. We need a heart and we need it sooner rather than later.
I enter my second Mother's Day with Hope and my third with Sadie, completely exhausted. I love my kids and I will fight for them no matter what, but I long for the day that Shawn and I can leave them with people we trust and go on a much needed vacation. We're praying that is possible before 2020! We know that our families are tired as well, we have relied on them a lot over the last 13 months. God, would you bless our family with a heart soon? Would you give the family that is going to lose their child, the strength to donate their organs? Would you give us hope to cling to until that happens?