Sunday, January 17, 2010

pink helmet head

helmet head- sometimes our own kiddos call their sister names, meant in the most loving way, i am sure. well, friday we loaded everyone up (thanks to the teacher work day) & headed to hanger prosthetics & othtotics in charlotte. libby claire had a appointment with her neuro last week & they feel like with SO much bone resorption that she needs a more permanent helmet & something custom & harder plastic. it was really cool how they fit kids that need helmets now with technology. she wore a little mesh hat/wrap over her head & then they attached a black cable & box with velcro to the top. a laser was swiped over the entire skull & her image came up on the computer screen...a perfect little libby claire head. i am so glad it worked & we only did it once, she has to sit still & for libby claire that is impossible. the laser is much better than the cast they would have had to make with plaster if we needed this a few years ago. we go back in 7-10 days to do a final fitting & she will have a brand new custom pink libby claire forehead helmet.

when we drove to the appointment i ended up driving so matt could prepare for a funeral he had to do on saturday. on 77 i hit a pair of pliers or some sort of tool, it was in the middle of the road. matt gave me a hard time...we were all on edge. i ended up crying the whole way there. not because i ran over the tool but because i am so tired. i am tired of doctors, appointments, follow-ups, phone scheduling, multiple visits, between libby claire & myself we are good for at least 2 to 3 appointments a week. the waiting rooms, endless snacks & books needed to be packed, wrestling with libs just to behave for 2 minutes while they at least check her head. it is a lot & i am tired. i don't want for our baby girl to be wearing some hard helmet. different than every other 2 year old. i want her to be "normal," back the way she was. i want to drop her off at preschool & enjoy my 3 hours, not worry. or let her climb up the stairs or walk around the house without listening for each little thud or bump. i want it all the be different.

I was needing to be "run over", just like those pliers.

i had gotten so bogged down in just thinking how great things would be or easy our week would go if we didn't have appointments & therapy. i had lost sight. HIS sight. i rode to charlotte there & back, pitiful. i had totally put myself in a hole. He had carried us so far, healed us, loved us, comforted us, spoke to us. had i really gotten so far from "the miracle" that i lost all that? i had to reaffirm, our libby claire WAS STILL HERE, she was walking...running more like it, talking, eating, busy, hugging, smiling, kissing, playing, SHE WAS HERE! run me over with that!

how many times in life have we gotten in that hole. all full of pity & just need to be run over & then reaffirm who we are & who we belong to. to remind ourselves all the miracles in our own lives small or big. each day whether filled with appointments or disappointments they are ours...a gift to live. i am going on with spirit of joy not pity that all this has happened & all the dates on the calender are steps in our walk, HER walk & i am so grateful i get to walk them with HER...following HIM!!!!

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