Monday, February 20, 2012

Dear Adams

Dear Adams,
You are eight years, ten months and one day old today. The day you were born I didn't know what your little life would bring in mine.
        Our little boy, you were brought into this world surrounded by those who love you.  Daddy, Becky, Grandma and I held our breath waiting on you to cry right after you were born. Daddy and Becky left me to go stand beside you while the nurses worked on you. They finally got you to cry. It's like you did it just to get them to stop messing with you because you stopped as soon as the nurse handed you to Daddy. The world stood still for all of us as you quietly blinked those beautiful eyes just taking it all in. Daddy and Becky love you so very very much. They have been your cheerleaders when you need pushed and my backbone when I can't find the words to say to people.  Love them, Hug them every time you can. Besides me- they are two people you can always count on.
     Those four days in the hospital we enjoyed you. We didn't know what was going on in the background. You had the best doctor because he knew something was different. Dr. Young sat up with you all night the night you were born searching for answers. He told me he stared into your little face and asked you to show him what to do. That's when he did the first karyotype. He never told us that he ran tests on you. The results came back and he didn't believe it so he drew blood for another test before we went home.
       When we got home Daddy and I realized you definitely were different. I had to sleep with you or you would get really cold and purple toned, you were a happy baby but we had to get different bottle nipples because you couldn't get any formula out of the ones we had, when we held you you didn't even try to pick your head up.We knew before we left the hospital that you had failed your hearing test but they said some babies just take a couple weeks to get fluid out of their ears. A home health nurse came by to check on us and gave us information on Babies Can't wait. We thought that was kind of weird but you had a hard birth so we figured maybe you just needed a little bit of therapy to get your strength back.                    
     Our family was and still is awesome. Emily loved holding you and we often heard her over the baby monitor whispering to you while you napped. I know that Emily is a teenager now and gets frustrated with you sometimes. She loves you. Her heart breaks when yours does. Keep hugging her and giving her your fish kisses - she loves it even if she acts like she doesn't sometimes.
    You were two weeks old when we found out that you had XXY and your balanced inversion. You also failed the second hearing test. We were referred to geneticists, endocrinologist, physical  therapist, audiologist, ear-nose-throat doctor, and the cardiologist. The geneticists didn't know why you had the physical issues you had because they aren't directly related to XXY at least not as severely as you had them so they sent us home to "enjoy" you as long as you were here. The endocrinologist didn't know why you were so small and not growing well and there was nothing for him to do as far as the XXY yet so he sent us home to come back in 2 years. The audiologist recommended ABR testing when you got a bit "stronger" because you would have to be sedated and you were too small for hearing aids. The ENT said you were small but everything was ok since we found the right bottle nipples and you didn't have a swallowing problem. Then there was the cardiologist. You had an enlarged ventricle, the hole that everyone is born with was enlarged and not closing yet. He wasn't willing to do anything yet about any of that because you were small and weak. He said if your heart didn't start closing the hole and catch up to the enlarged ventricle he may operate on it when you got a little bigger. This is when we realized you had way more going on. We realized just how much we needed God to heal you. We went on with life praying for  more time with you. People stopped us and told us how beautiful you were.
      We moved to Albany, closer to Papa and my family. Papa didn't miss any of those early appointments. The three of us (Papa, Daddy and I) bombarded doctors with questions. I'm sure the doctors thought we were all crazy. Papa loves you unconditionally. You're his first born grandson. You look and act just like him. Treasure that.
       We moved back to Cartersville when you were one. Your little brother was born exactly 17 days before your second birthday. He's been your voice, your strength, and your partner in crime. He is your best friend. I hope you two are always there for each other. Life went on, you were healthy despite a few bumps in the road, we eventually found ourselves on auto pilot. We juggled therapies and doctor's appointments like we'd been doing it for decades. Prayer got us through those baby and toddler years.
      You got hearing aids at age 3. You started pre-school at 3 because Babies Can't wait stops at then and in the public school system you could continue your therapies. When you were nearly four we had our little girl, Ellie. You are such a good big brother to her. The two of you have a bond like no other. She looks to you during the scary times and you are her source of strength. You always tell her what's going on and always have a hug for her and tell her everything is going to be o.k. Please continue to be honest with her. I can't imagine what it's like to be so small and have such big worries.
       You have been sedated over 15 times for tests, you have had six surgeries (two surgeries done at one time twice). We have since found out that you have two more genetic abnormalities, one a deletion and one a  duplication. You have Autism, Cerebral Palsy, XXY, Severe hearing loss, Fibrous Displaysia, vision problems, low muscle tone and they have had to fuse c1-c3 in your spine to attach your head to your body. You also have a bone growing into the foramen magnum- where the spinal cord and brain stem meet. They have cut this bone once but will have to do it again as you grow. Nobody can tell us how long you will be here with us, but I'm believing you'll outlive us.
     For now- we love you. I wouldn't change you for the world. This life is hard. The blessings are unimaginable. You have a divine purpose, going around for 7 years with scar tissue holding your head onto your body is evidence of that. Countless people have told us how much you have changed their lives. We went years with people telling us how weak you are. You are not weak. You are the strongest person I have ever met. Keep the love for God that you have now and remember that He loved you first.  I am honored and blessed to be your Mama. I love you. " I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be."