Adoption 13. Adopt America use to send us to NACAC national adoption conference yearly, they were always fun and informative on adoption issues , but my favorite part of them was networking with agencys and familys. This particular year was in Baltimore . Usually Willie would go with me and we would bring one of our little ones with us , one to release some of the care needed at home and two we just enjoyed bringing them. This year we brought Samuel, he was one year old at the time, I was strolling him around looking at all the exhibits when these ladys behind one table said oh my that could be Juans twin they had a picture of a little boy they were recruiting for a family for and yes he looked just like our Sam. I told them I had a current study and they said when you get home send it please we have been looking for a family for a while and with his medical needs have been unable to find one. So about six weeks later we flew back to Baltimore to pick up our little boy , we changed his name to Emmanuel which means God with us.Little did we know then how meaningful that name would be to us. Emanuel was two years old and severely delayed , he didnt walk or talk and he self stemmed almost constantly, (Selfstemmed behavior is the repetition of physical movements , sounds or objects most common with individuals with developmental delays but most prevalent in Autistic disorders. Emmanuel also had craniostenosis and had two cranial surgerys to expand his skull. He also had a heart surgery to close a hole in his heart. All this before he was two years old. One of the first things we did was get him in to see a geneticist who didnt give us a whole lot more information on our little guy. He said could be Apert or Degeorge syndrome but he really didnt fit either as far as he could tell. Emmanuel was a quiet little boy who would scoot on his knees through the house . He stayed to himself most of the time. He loved his physical therapist , when he would come and be working with another child Emmanuel would quietly bunny hop behind him and just lightly touch him on his back like hey I am hereThe feeling between them was mutual. One time Emmanuel got RSV virus and was put in the hospital . The Doctor asked what do you want us to do if he should code. I was totally taken back and blurted out what do you think! DO EVERYTHING !!! Just because my child is delayed and looks different is no reason not to save him! Emmanuel in his quiet little way worked his way into all our hearts , In the evening at bedtime I would one by one carry the little ones up stairs to their beds. Because Emmanuel was so quiet and not demanding he was always last. I would pick him up and tickle him and he would giggle, then I would tell him I saved the best for the last. One winter a bad respiratory virus hit the little kids. I had three on oxygen, all recovered except Emmanuel We took him to Arkansas Childrens Hospital where they admitted him and treated him for pneumonia . After two weeks with no improvement they started to bring in specialists to see if there was something else going on. He had developed little nodules ( swollen glands like ) they decided he may have a fungel pneumonia and started the treatment . He coded early that morning, they got him back and he was on a ventilator with full support . They had taken samples of the nodules and pathology sent the report back as Lymphoproliferative disorder .It is a disorder characterized by the dysfunction of the immune system , often resulting in excessive production of lymphocytes or white blood cells, people with this disorder often have compromised immune systems, malignancy or cancer may develop as a result. So he was diagnosed with a fast acting lymphoma brought on by this disorder when he caught the virus. They began cancer treatment.Emmanuels kidneys were already shutting down and he was on dialysis. I asked the Doctorsis he dying ? And they said yes. We sat by his bed watching him as two PICU nurses were treating him around the clock. I knew he had already left us and we were just waiting for his heart to stop. The song blackbird came to me and I began to quietly sing to him Blackbird singing in the dead of the night take these broken wings and learn to fly, all your life, you were only waiting for this moment to arise. Our little blackbird left us and took a piece of our hearts.
Posted on: Mon, 17 Nov 2014 03:05:29 +0000