own it

we just want what is best for our children.  we feed them, love them, dress them, bathe them. but then there is more. we try to feed them better, we give them one more kiss before bed, we dress them so they are warm and comfortable, we bathe them often so they are clean.

sometimes their needs are bigger than we are.  their needs are beyond a mother's scope, beyond her natural maternal instincts. sometimes, in order or us to meet our children's needs, we must learn a new skill, learn about new diseases and move out of our comfort zone.

i find myself in this spot often. i find i don't have all the answers, i find there is more out there that could make their life better.  our drive to learn and do better for our kids is like that of a super power, an uncontrollable force that won't take no for an answer.  it's a drive that leads us to google, the library and support groups.

my son has special needs.  he is so special.  his brain is custom designed, not like yours or mine, but special for him. his eyes, deep brown as they are, wander around sometimes when they are not supposed to. i don't even notice it, but others, they notice his eyes.  his neck, his sweet tiny neck has a cord running through it to help his special brain function.  his chest has a scar on it, i rub it, i love it.  his ribs are wide, expanded from his curved spine.

as i write this i am learning.

he is not potty trained nor will he ever be. he has never stood at the potty and pretended to be like dad. he has never stood at the sink to learn to brush his teeth. he lays on the counter to brush his teeth. he has never gotten out of bed in the morning by himself, but rather been carried by a loved one to eat breakfast. he has never climbed on the counters to reach for a favorite cereal. he has never moved a stool close to the freezer and climbed up on it to open it. i am sure he has thought about it.

sometimes his needs are bigger than me.  all the time i know there are bigger and better opportunities out there for him but i can't physically reach them.  all the time i know there are more and more research articles published on new ideas on how to improve  the life quality of a special little toddler boy with spina bifida and scoliosis, a neurogenic bowel and bladder, a chiari II malformation, hydrocephalus, a VP shunt, shallow hips, deformed feet and legs and weak bones and muscles. i know it's out there. i have laid in bed and read until 5 in the morning trying to find it, only to be left feeling saddened and overwhelmed. i have stumbled across inspirational articles that give hope and remind us to have faith.

as we venture to new ideas and new treatment plans, better ones, always something better, i find my self at that point again. his needs are bigger than me, they are out of my scope, they are more than instincts. so we learn. we look for new research, support groups, doctors.

i found myself at the library the other night. i was desperately searching for the unfound research. all the new answers that could help my little guy. my fingers raced through the titles [coping with a child with special needs] NO, I don't need to cope, I need answers. next title [dealing with back pain] no-not back pain, i need answers. next title [you've been diagnosed with cancer] man.

there i stood, armful of books, feeling annoyed that none of them are really what i was searching for. then it came over me like a rush of cold, no, freezing air.  I thought to myself, oh gosh, i am so glad i am not here searching for a book on how to handle my child's cancer.  for a moment i felt connected to the people that have stood here and looked at this book. my heart broke for them and my eyes welled with tears.  it was seriously chilling-indescribable.  i thought to myself how many people have stood in that same spot in the library, desperately searching for the answer on how to keep their dear, loved one alive, for just another month. i commend thee.

i am so thankful that God has given me just what I can do. I trust that he has given me something that he knows is not bigger than me and is within my scope. i can do this. i can learn, i can love. i love my special needs buddy.  I love that i can handle this, that my mind is capable of seeing life through a different lens, a lens that will allow my son to reach, to surpass his full potential.  I am thankful God has put me right where i need to be on earth at all the right times. I still have faith. I know we are ok. I know and trust we are doing all we can for our son.

we have to trust that no matter what we are going through that it IS NOT bigger than us. it was given to  us because we are the professional , the expert on this situation. it was for us.  own it.