"Blessed are those who mourn, for they will be comforted" Matthew 5:4
We often think of mourning as something we do when we have lost someone..someone who made a difference in our life. Someone who, when they are gone, leaves a hole in our hearts. I have mourned many people in my life. Two grandfathers, a grandmother, a few friends...Xavier. I know it sounds horrible...I mourn the loss of someone who is still the center of my life. Am I wrong for mourning for the little boy that I just rocked to sleep?? The word mourning takes on a different meaning when you get a diagnosis like HLHS.
I assumed that my child would be healthy. I think any expectant mother does. You get a little ball of nerves when you go in for the next test, or the next ultrasound, but you expect to have a healthy baby...those kind of things just don't happen to YOU!!! I will never forget the sound of the doctor clearing her throat as she took a seat to talk to us. "I just don't like the look of his heart" she said...from that moment on..I began to mourn. I mourned the loss of a normal, worry free pregnancy. I mourned the loss of a "normal" birth. I mourned the loss of my dream of showing off my week old baby to family and friends. I gave up being able to hold my baby during that important "bonding" time. I was unable to breast feed, unable to get new born pictures taken, unable to allow people to hold him, to visit him, unable to be his Mommy in the way I NEEDED to...and I HAD to mourn all of those things.
As a parent to a child with CHD I find myself morning things that may or may not happen, years from now. Will he ever know what it is like to wreck his bike, play with his friends in the pool, win the spelling bee at school, get his first kiss, go on a date, graduate high school, get drunk for the first time (NOOOOOO!!!), dance with his mother, go to the prom, get married, have a child...WILL HE EVER??? There is a very strong possibility that he will get to do all these things and more...and there is also a chance that he will not...and it is that bit of doubt that causes me to mourn...
but I think what we really end up mourning the most is the loss of "normal". We talk about it to each other so much...just when you think things are normal CHD grabs you by the shoulders, shakes you hard and reminds you that nothing is normal about having a child with half a heart. I promise you that I think about his heart once an hour...all day, every day! I mourn relaxation, sleep, the ability to completely let go...and in the same breath I can say with 100% conviction that I would not change it for the world...this path, this struggle, this mourning is mine. If I could, would I fix his heart..well of course I would..but not even in my day dreams is that possible..so what I have decided to do is give myself permission to mourn, to cry, to scream if I feel like it..but what I will not allow myself to do is give up!! I will not allow HLHS to win..I will not allow it to take any more from Xavier then it has already taken. I am going to do my best to mourn and move on. I will do my best to give X a "normal" life..because after all HLHS is his normal..he has never known anything else. I am sure I am going to be over protective..and when the time comes and he can't do something that the other kids are doing or when he starts to feel different, I will mourn with him that loss. However, I will celebrate with him his strength, his scar, his bravery..I will celebrate with him what makes him special and its not just his special heart. Our load is heavy...and it makes us strong with each passing second. I mourn the loss of those things never known...and celebrate those things I never imagined in a million years would be mine...how blessed this mourner is!!