Normal. I'm not even sure what that looks like for us anymore but I am attempting to achieve it this weekend. I love Hope dearly and truly miss her whenever we're apart. I have felt my sanity slipping away this past week and made the tough decision to take a break. Today I only spent 3.5 hours with Hope at the hospital. Tomorrow Shawn will spend some time with her, but she will be with volunteers the rest of the day and I will have a sabbath. I'm not taking a break from Hope, but from the hospital. I love spending time with her, but find the environment very difficult at times. This will allow me to come back on Monday morning with new energy, I hope!
Shawn and I are very blessed. Tonight was going to be his first night at the hospital in a long time. Sleep is so important to him and he really struggles after a poor sleep. He had agreed to stay with Hope tonight and let me stay home with Sadie. More than one person stepped up and offered to take his place. So tonight, after putting Sadie to bed and having a friend sit in our home, we went on a date. Normal.
This morning when I got up to the sound of Sadie playing in her room, I felt relaxed. I spent the morning hanging out with her, cooked lunch for my family in my own kitchen even. We spent the afternoon as a family at the hospital and Hope seemed much happier today. I think she's finally feeling a bit better.
Today was not the best day in regards to our talks with the doctor. We are thankful that our cardiologist has truly grasped the severity of the clot at the end of Hope's PICC line. Many times we have been told the line will be pulled before we remind the doctor of the clot. Today it was brought up once again. The doctor has contacted neuro surgery and they are trying to figure out how this line can one day be safely pulled. In the average person, the clot would go through the lungs. Hope's anatomy is far from average and the clot will go directly to her heart, and potentially follow to her brain. This is so dangerous and could be extremely serious. Please pray that the doctors are able to come up with the best possible solution for this clot.
We were also told today that as soon as Hope goes 24 hours without diarrhea, they will rebook the cath. We could still potentially be there by the 27th, but we need this poop to get a little less watery first! It leaves our lives very up in the air. We need the cath done in order to have Hope's next Varices treatment as well. The Calgary team has made it clear that they will not operate on Hope in Calgary until AFTER she has the cath done in Edmonton. They need her heart more stable in order to consider putting her under anesthetic here. I do believe that's a fair decision when you weigh the risks.
Christmas if very stressful for us and I'm truly hoping it is over with quickly. The expectations that come along with holidays are stressful in the best of times. Some days I feel as though no one understands where we're at in life. I only have decorations up because someone else put them up. I would take them down if it wasn't for Sadie, but I know she loves to see her tree. We only have Christmas baking, because others dropped it off. We don't care if we make it to a church service, eat a turkey dinner or have pancakes on Christmas morning. We want Hope to survive, to get strong enough to come home and we want to be together, all 4 of us. That's all that matters to us this year and everything else feels so small in comparison. We may not meet others expectations this year, but I'm truly not sorry. My obligation is to my children, God has tasked me with being their mother and I'm going to make that my priority.
When life is more normal on a regular basis, I pray I am reminded of this feeling. When I stress about how perfect dinner will taste for company. When I worry about what my children are wearing in public or if someone likes me. I want to remember what it feels like right now. To know that God is truly the most important thing. The one that I seek to honour with my life. I want my focus to be loving others, not impressing them or meeting expectations, many of which we put on ourselves falsely. I hope that next Christmas I'm able to celebrate the gift of Jesus coming to the earth and not get caught up in getting my baking, shopping, decorating and entertaining in. Sometimes it takes tragedy to pull us out of all the fuss and make us truly evaluate what's important.
I can honestly say that I am thankful for Hope. Her life is difficult and that impacts our lives in every way. Not all of those ways are negatively and perhaps I would never become who God intended for me to be without walking this difficult road. That's the thing about God refining us, the fire is hot and it burns, but the finished product is always more beautiful. I pray through the holidays that Hope reminds us all of what is truly important.