A different kind of beautiful

In the beginning, when he was only a few months old, I believed what they were telling me. The therapists, the doctors, all of the "good intentioned" medical staff who seemed to pour into our lives after we brought our first baby home. "He needs this therapy, this therapy, and this therapy. In addition to all of the outside therapies you take him to, you must do this list of exercises at home. To have the best shot at a normal life please do A, B, and C for your child." And so, I engaged all of my energies into this "best shot". And I focused on "normal". I admit that for a few years my focus was quite solid. A,B, and C it must be then! Dave saw the energy and where it was focused. He never had the focus I did. His focus was on his boy. His beautiful boy whom God had so generously spared. His boy who could breathe with out the aid of a ventilator. Whose heart beat in normal rhythm. Who was beginning to eat on his own. Finally. He would, ever so gently, try to remind me of these amazing facts. But ultimately he gave me the space I needed to learn the lessons that could only come from God. I had a similar perspective as Dave when we were in the hospital. All those weeks where we earnestly prayed that he would breathe on his own. Where each little victory was a huge milestone. Something changed for me when we brought him home. I became a stay at home mom to a special needs child. No longer were there specially trained nurses by his bedside 24/7. He needed me. He was my world. I had to do every thing possible to help him. Some of the therapies K has received have been stepping stones to many of his most wonderful physical accomplishments. Alot of the energies I invested into him were fine and helpful. When looking back it has been my mindset and particular goals I was hoping for that were less than admirable. Ultimately no part of K's progress can be attributed to any thing other than God's miraculous grace. I am starting - and when I say starting I mean real baby steps ('cause that's how I roll...) - to see the truth. And the beauty. And the gift in the unique. My son, K, will never be like other kids his age. Why is that hard for me? Why even in typing those words, do I get a bit of a lump in my throat. Humanness I suppose. Being drenched in the messages that surround me. Not having guarded myself against something I really am no part of. Not having drenched myself in God's Word. K is amazing. He is brilliant in his own right. There are things that are alot harder for him than most children. He has gone through alot more than most 6 year olds. His brain does not function like most children. He is not most children. He is God's child. He has been given to Dave and I as our child for the present. K will excel greatly at some things. His memory is crazy sharp. He memorizes entire books and DVD's, he brings up things from the past that I hardly even remember. K will struggle greatly with other things. When he underwent 4 hours of neurological psychological testing yesterday he was shown some action pictures and asked what they represent. He shut down. He said he was tired. He got agitated. His vision is extremely poor. And there isn't a whole lot more tweaking that can be done. He also struggles with any thing that is not concrete. He thinks in a very black and white concrete way. When asked to name emotions from pictures he gave a very blank look. He concentrates so hard. He works so hard. He takes a long time to process information that most just take in as they receive it. He needs extra time. He needs extra patience. This is my child. I used to think I had a responsibility to him that included things such as normacly and other kids his age. But do you know what? As much as I still see the value in a few therapies, dr. appointments, and working with him, I see far more value in things like, patience, flexibility, acceptance, appreciation, and recognize the beauty in the unique. My goals are changing. My heart is changing. And I am so glad, because I would miss out on so much if I stayed in the same old normal thought process. I am planning a more informational post that I will be writing soon. To let you all know the purpose behind yesterdays testing, where he is at with eating, school plans, medication, vision, etc. For today, I just wanted to put words to something that has been moving in my heart. Six years ago today we brought our baby home after his 96 day stay in the Neonatal intensive care unit of the hospital. Thank you Lord, for our one of a kind little boy.