I find it more difficult to write if I try to pretend I feel something different than I actually feel. This week has not been easy. I'm tired, my neck and back are aching constantly and I dream of having a morning that no one will need me and I can sleep until my body feels like waking up. At the same time, I know that my girls are both worth it. When Sadie calls out in pain in the middle of the night, or yells so I can help her get out of bed in the morning, I never hesitate. I want to run to her and be there to lift her up and reposition her so she can sleep. Some days Hope fusses for most of the day and I start to feel frustrated. All it takes is for her to grab a handful of my hair and stroke her face with it, or put her fingers on the side of my face and touch my cheek. It gets me every time and I remember that she is worth it.
Tonight Shawn and I put Sadie to bed and spent the night hanging out with each other. We sat on the couch and watched one episode after another of one of the shows we like. We laughed. I ran upstairs to grab a glass of water and stopped as I passed the mirror and saw my smiling reflection, I'm happy. I know, it's hard to believe. The world is stacked against me and each day I carry the weight that every doctor thinks my little girl is going to die. They may be right. Those things hurt and I shed my fair share of tears over them all the time. But the very core of my being, the soul within me that believes God has a plan for my life, for my family, it feels joy.
I would not have chosen this for my family, having a sick child is never easy. I cannot allow myself to forget that I have so many things in my life that others would have chosen if given a choice. I have a husband, one that loves me. I have two children that I love dearly. I have a roof over my head and a full tummy each night when I go to bed, often too full. I have friends and family that never seem to tire and continually stand with us through this crazy journey. More than that, I have a God who gave up his son and allowed him to be tortured and die so that I could be free. I feel like Hope is tortured on many occasions and the pain I experience while it happens is often too much to bear. Handing her over and willingly allowing her to die, that I cannot even imagine. How can I not be thankful?
Amongst my joy, there is very real pain and this week it has been suffocating. I often find myself in a daze and struggle to remember what I was doing before I return to reality. I am overwhelmed and my brain simply turns off to protect itself.
This morning I got a call from the cardiologist. We were both sleeping, the doctor yawned as we spoke, but Hope was not having a good night. She is spiking high fevers once again and has been put back on antibiotics. They decided to put her on the strong stuff again and we pray that it works. They have also thrown in the towel and have admitted that the PICC line has got to come out. They are now looking for a team of doctors that is willing to take on the challenge of getting a new one in.
The Cardiologists are talking about sending us back to Edmonton at some point on Tuesday. Hope would have her cath on Wednesday. We will need to wait and see if the blood cultures they drew from her this morning grow anything. This infection has been well hidden and is not showing up on the blood cultures previously, so I don't expect them to grow. As long as they don't, we should be moving forward with the heart cath. Please join me in praying that this is a short trip to Edmonton and that Hope will be back before next weekend.
At this point it sounds like Hope will have to be put to sleep 3 times before January is over. She needs the heart cath, the varices treatment and a new PICC line. Every time we send her back into the OR it takes weeks to get her development back to where it is. My daughter is 9 months old; she can't roll over, sit up, hold her head securely, make babbling sounds or laugh out loud. We are already so behind and each day she is denied the opportunity to grow and develop is really hard. We want to come home and are willing to do what it takes to get our girl home. Sadie prays everyday that Hope would get better and asks if she's coming home. Regardless of what Hope's future holds, we want to spend more time with her at home as a family. Please join us in praying that this dream will soon be a reality.