Monday, October 14, 2013


Last night I was thinking about next year.  For the last year we have been living in our bubble. Our "Safe" bubble where things are starting to become normal.  Yes, normal for us is a little different then for most, but we are finding comfort in our "normal."  Then I remember there is more to come.  My girl isn't done.  She still has to fight her way through another major open heart surgery.  When I start to think of how hard next year is going to be, another surgery for my baby, time away from Zoie, time off work and away from home for who knows how long, it scares me. 
If I think back, Raygen felt pain within 20 minutes of being born.  That is heart breaking for me.  She just didn't have the normal heal poke most babies have after birth, but an iv.  It is probably the only time in her life that they were able to get an iv with one poke.  Hours later she was sedated and had a pic line.  The fear that takes over when I start thinking that I will have to hand my daughter over to surgeons again and watch as they push her down that long O.R. hallway, can only be described as paralyzing.  It's like walking up to the scaffold and seeing the block and the headsman knowing that your not walking back down it again, at least now with your head attached.  I know seems very dramatic, but think about it.  It does fit when you think you may loose your child.  I look at my daughters and I can not imagine my life without them.  I never knew you could love someone so much that it would hurt.  We have watched Raygen grow and excel and enjoy life over the past 12 months.  I know that the surgery will set her back.  The part that hurts me the most is that Raygen is going to be scared.  It makes me cry thinking that my baby will be poked and hurt and scared and there isn't anything I can do to change it.  I can do my best and prepare her, but how do you really prepare a baby for major open heart surgery?  I can use the oils to relax her, check her pulse ox every night and listen to her heart and lungs so when the doctors need to do it, maybe it won't be too scary.  I can learn Reiki and hope that it helps Raygen through her healing process, but there is no way to prevent her from being scared.  I would give anything for Raygen not to have to feel pain or fear ever again, but she has to have her 3rd surgery to live.  At some point Raygen's body will outgrow her stent and the Glenn.    I give myself a day here or there to give into my "poor us," but then I let it go and enjoy my life.  I can't live in fear.  As much as fear can consume me and especially since surgery is upon us I try not to let it control my life.  I am scared, yes, but I'm going to be strong and continue to prepare my family as much as possible.  I'm not going to let the "what ifs" get to me and enjoy the "right nows" that I have with my amazing daughter.  If one person has thought me what strength and courage is, it is Raygen.  I just want to give my daughter the best life she can have and be a good mom and advocate for her.  I just pray someday that the care and surgery for our CHD babies can be easier on them.  I am glad that Raygen is not aware of what is to come.  I am glad that for right now, she is not scared and she is happy playing with her toys.  Being our beautiful wonderful two year old.