Friday, May 23, 2014

My beautiful blue eyed boy

You would think after almost 4 years of questions and answers that it would get easier to handle.  In some ways, it is.  I don't find myself getting befuddled and frazzled when difficult questions arise, but the after math always leaves me reeling.  Never in a million years would I have ever thought I would be the mom who would be asked questions about life span or the unknown in regards to my young child.  Never did I think I would become a live in nurse who uses medical knowledge outside of the work place.  Communication with Carter's teacher is more about Carter's medical struggles each day rather than development.  I am in contact with Carter's medical team more often than most of my family.  Most of the time, when I tell people that Carter has Mitochondrial Disease, it leaves people confused.  But when I say he is my 5 year old son who cannot walk, talk or eat most food and that most of his nutrition goes through a feeding tube; the realization sinks in.  My son is sick.  Not with a cold or ear infection; but forever sick.  There is no antibiotic or easy fix.  There is NO fix.  As I say these things out loud to help people understand what Mitochondrial Disease means, I find the old wounds in my heart begin to open.  I feel the age in my 28 years multiplying.  Yesterday, at my sister-in-law's yard sale, a lady stopped to read the flyer on the table about the upcoming 5K that we are planning and I explained that Carter is my child.  We got in to "the conversation" which left this lady, a total stranger, in tears.  I felt my heart hurting, but I have learned to keep my tears pushed back.  An acquired skill.  When I turned around as the lady walked away, my sister-in-law surprised me as she was also in tears.  She asked me "how do you not cry every time you tell people about Carter?"  I've never been one to cry in front of others, at least I try my hardest not to.  My answers have become so routine that I can say them without even thinking; a survival skill.  It's the moments when I am alone with Carter and I have taken my armor off for the day, that the pain falls from my body.  Since my daughter was at her papas for the night, it was a rare evening of undivided snuggles with my little man.  After I gave him his night meds, I climbed in to his padded play area to lay with him.  As his meds started to work and his body was released of it's struggles, I felt the toll take over.  As I watched his muscles relax and frustrations dissipate as my son succumbed to sleep, his cerebral palsy at rest; I wept.  I cried big, ugly tears as I mourned for my child.  The only time we see Carter relaxed and peaceful, is when he is asleep.  My husband and I don't talk about the what if's or why's very often; it's just too hard.  But last night as I cried in to Carter's shirt, I told my husband, "I just don't understand what went wrong with Carter's brain to make so many things so hard for him. I just don't get it".  As I watch my perfect, beautiful son sleep, you wouldn't even know he has cerebral palsy, cognitive impairment or self aggression.  He is so beautiful.  When he is awake and I get those rare moments of eye contact, I see wise blue eyes looking back at me.  Behind the confusion and frustration, there is a little boy who understands.  And as his mommy, I try so hard to be strong for him.  I do my best to make the right decisions for him, but worry that it's not good enough.  I hope that Carter understands what I am saying when I tell him how much I love him.  They say that when you go to heaven, that all of your struggles, pains and medical problems are healed.  They say that we all walk and talk in heaven.  As I have my heart to hearts with God, I plead with him to please make my baby better, if not today then some day when he embraces him in heaven.  I don't understand why Carter is sick and I probably never will, but what I do know is that my little boy changes lives.  He has changed mine in so many ways.  There is a crazy inner battle within myself when I think about how perfect Carter is to me and how I wouldn't change him for anything yet wish he could have an easier life.  Regardless of whether your child is healthy or sick, never seize to hold your children close every day.  Shrug off the endless messes and tantrums.  Admire them as they sleep.  Relish in their giggles and smiles so that your heart can handle their tears and frustrations.  Lessons that my little warrior has taught us.  Be strong, be faithful and be happy.

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