As I lay next to my daughter as she sleeps in this generic hospital bed (which I am sure card board boxes piled on top of each other is more comfortable)I look back at the last 5 days in this place and wonder how we made it through with our sanity in tact. I consider myself blessed. Blessed to have wonderful support from friends and family. Blessed to have a supportive husband and son. Blessed to have a great group of online cf parents, who I am sure don't know half the effects their supportive encouraging words have on a mom in my situation. Blessed to have been given great nurses on the paediatric ward. I am blessed to have an absolutely amazing daughter who is sweet and sassy at the same time. Who fights with every once of her being, and who melts me with just one smile. I am blessed to be her mom.
That is why I don't feel guilty for saying things to medical staff, nor will I apolagize for my behaviour. I am my daughter's advocate until she can speak for herself.
That is why my husband and I have made the decision to get a port a chath done ( some call it a medicath or mediport) the surgery is scheduled for tomorrow afternoon, and I am both excited and saddened by it. Excited because our daughter will no longer be poked like a pin cushion, but saddened by the reality of our life, and the way cf has taken a toll on our emotions, and or whole existance. I lay crying by my child. Crying because of the decisions my husband and I have been forced to make. Crying about the impact these decisions have had on our lives, our marriage. Crying for the life my son has no choice but to live. Why should any child have to play in the halls of a hospital with their baby sister. He is such a wonderful boy, who I feel at times gets neglected. I cry because of the fact that I am getting to know every corner, wall and hallway of this damn hospital. It is so frustrating!!!!!!!!!!
So add us to your prayers please. Annika's surgery is scheduled for early afternoon. Please pray for a great outcome. Pray for guidace for the surgeons operating on her, and pray that we get out of this hell hole soon
Goodnight everyone. Thanks for sharing our journey.
