Things have been hard since the moment Abram came into this world. I have been trying my hardest to handle the hurdles in our life with as much grace as possible but I have my moments (days, hours, seconds) of just sheer agony and a lot of weeping and then I feel guilty because so many other moms/families have it harder than we do. Yet then there is this anger.... resentment (?)... jealousy of the life that my little boy will never have. I try my hardest not to cry or feel sorry for my family and for my little boy but today is one of those days where I want to run outside and scream at the sky about how god damned unfair it all is and how angry I am.
Since my last post we saw an Orthopaedic Surgeon and Abram just underwent his second "high contrast" MRI yesterday. The Orthopaedic Surgeon informed us that Abram's Hypotonia is the result of nerve damage due to his difficult birth. We were informed that he may never walk and told us that we "could do Physical Therapy until we were blue in the face" and that it wouldn't make a difference. He told me that Abram's hypotonia has more to do with time and the nerves having to re-route themselves. I was heartbroken and left feeling defeated.
Abram will never know the difference in what he can and cannot do but as his mama it is painful to see other kids enjoying things while my little boy doesn't really seem to enjoy much. It hurts me to see that he doesn't take enjoyment in the things normal kids enjoy and it's hard to have play-dates when he cries at any high-pitched noise because it literally physically hurts him to hear them. I feel pretty alone and lost on the inside.
Most of Abram's days have been hard ones. This poor kid has never gotten a break. He has almost always been in pain and fussing. Only, the part that is the worst is that he can't tell me what hurts. He can't tell me what is bothering him. All he knows to do is to cry and to fuss and all that I know is there is nothing that I can do right now to make him more comfortable. He always seems to be hurting and I don't know how to help him or how to make it better.
There is no pill to make my kid feel better. There is no magic potion to help him with his Hypotonia. There is no cure for that god damned thing growing in his brain (other than the very dangerous and invasive brain surgery he will have to endure).
I am literally unable to do the one thing all moms are supposed to be able to do and that is to make my little baby boy feel better. So if you are reading this and you have a healthy child... be thankful. Rejoice in the fact that your child can walk, talk, run and play. Remember that when your child has the flu, a bad day or a toothache that those things will pass and most likely for you - tomorrow (or next week) will be a better day.
Right now, I guess I just feel lost. RIght now, I want to yell WHY ME?! WHY MY CHILD?!
But then I have to remember that somewhere.... someone doesn't have their son or daughter. I have to remember that even though things are hard that this life is a gift and I have to try to enjoy every single moment as much as I can. I have to remember that although Abram's life won't be easy.... that it's his life to live and I cannot and will not succumb to self pity and anger and regret for what could have been for him. These are the unfortunate cards my son has been given and we will overcome it or live with it. There is no other option.
I have my son. I have my family. I have my friends. I have an incredible support system and people that care. I have a lot to be thankful for. I also have the right to have a bad day. It's so hard to go through all of this without hitting an emotional bump in the road. For now... we wait for the results of that second MRI and hope for the best.