I am asking for prayers for one of Colin's heart friends, Addison. She is just 6 months older than Colin, has had all 3 surgeries and has went into sudden heart failure and is now in need of a transplant and soon. They are in the fight of their lives for their little girl. It was sudden and without warning. But they are not giving up the fight, so please pray that they find a match to Addison soon before she takes an even more turn downward. That is the scary thing about HLHS, even after the kids complete the plan of surgeries, they are still just living off half a heart, and there are no guarantees about what that really means. Some are adults now and have not had any problems, but it's not always the case.
My heart aches for her mom, sitting over her child in the hospital bed praying to God not to take her child away. I cannot imagine the pain she is feeling right now. As much hope as I have for Colin and all his heart warrior friends, I have fear that lives inside of me as well. Of course this has sparked my own fears about my own child's future and what it might hold. As I put Colin to bed last night, I cried and cried looking at him peacefully sleeping and thinking of Addison and her family. I cried thinking that praying for her, meant praying that someone else dies in the process. That to save her life, another family must mourn. I cried thinking of this this almost 4 year old that has been through so much already and now has a long road ahead of her. I cried because I am a mom of a child with HLHS and no parent should every have to worry about will their child live or die. It's just not fair! I cried thinking of Addison's older sister who has to be strong for her younger sister and how hard it is for the older sibling to have to grow up faster (once again thinking of how Colin's condition has made Katherine have to deal with issues that a 6 year old should NEVER have to deal with)!
Sometimes being a parent of a child with a life threatening condition is hard. It's not an easy journey we must travel. For the most part, I try not to think of Colin's condition and live our lives to the fullest. But there are days, moments in time that I can't just push down the fear. There are times I am mad, sad, afraid, and just plain pissed off how hard my kid and others have to fight to stay alive. Anyone who know us our follows our blog and sees how happy Colin, Katherine, Matt and I are as a family, can see how unfair it is that Colin's body is not complete. That this is a struggle we will face for his ENTIRE life.
This week Colin had an appointment with his cardiologist; they did an EKG and looked at his vitals. Everything is good and still looking at next summer for surgery. BUT we have to work on weight. He has to gain about 3 more pounds; we are going to meet with a nutritionist to see about gaining more weight. I must admit, I have been stressed about this and his feeding issue. Every meal has turned into a battle of getting more and more calories in him. But last night in my fit of crying, I realized it could be so much worse. So it is going to be a little stressful about getting him to gain more weight, we just got to suck it up and take it strides. We are just BLESSED that right now his heart is strong enough to wait until he CAN gain more weight. I cannot be down and out because of feeding issues, when Addison and her family are fighting for her to stay alive.
So please, pray for Addison to get the chance to live the full life she is meant to! Please hold your children, grandchildren, family tight as life is so precious and at any moment any of us could need prayers of this magnitude.