I'll admit, I have taken a hiatus on my advocacy for children with Down syndrome. I needed some time to re-gather my thoughts, my feelings, my life.
However this weekend I heard about a baby boy. A little boy whom I have never met, never known, but yet have a huge unexplained love for. He was a twin born in Arkansas; a twin whose birth mother gave the ultimate sacrifice by giving him up for adoption, who tried to give him and his brother a better life, however this is only the beginning of his story.
This little boy, whom I will call Baby Doe, was born with Down syndrome. Now I'm not sure how it all played out, however I do know this; the adoptive parents decided they would only take the twin who was "perfect". The one without Down syndrome. Not only did they choose to leave Baby Doe in the hospital, they also chose to sign a DNR order. They did not relinquish their rights, they simply said the only way they would take him was if he passed away. They walked away from this child not even giving him a chance, a chance to know he is loved, a chance to fight for his life, to live and grow with his twin.
When I heard about this my heart broke into a million pieces. All I could think about was how I wanted to board a flight to Arkansas and wrap this baby in love. Take him, nurture him, let him know that he has a life worth living.
As you can imagine, news of this situation spread quickly throughout the Down syndrome community. Every one of us was outraged. Who cares if this baby is sick? If he didn't have an extra chromosome, would someone be fighting for him? Many of us made our voices heard though. We all fought hard and started questioning what had happened. Letters were written, phone calls were made, up to and including the hospital, a bio ethicist, past Governor, Mike Huckabee, and the current Governor. (Boy is HE gonna be surprised Monday morning when he has thousands of emails concerning one little baby boy in the NICU!!)
I had and still have so many questions. Who approved this adoption? Did the Doctors not explain to things to the new parents? Were they misinformed as so many parents are when it comes to an extra chromosome? I can't fathom why they would just leave this little living, breathing, baby to die.
However Baby Doe, has lots of fighters rallying for him in his corner. Even if Baby Doe has been rejected by not one, but two sets of parents in his short little life time, he is loved. We spoke loud and clear this weekend that Baby Doe will NOT be left to die. When a child with Down syndrome is born, he is loved by every other parent out there who has been blessed by an extra chromosome.
As much as my heart was breaking, it is now screaming in joy, because the DNR has been lifted. A Bio ethicist and an agency have stepped in and are looking into the situation. I know this little boy is sick, and as I wrote letters on his behalf my heart said a prayer over and over if he would just hang on long enough, we would fight, we would find him alone.
Tonight my heart soars as I hear the DNR is no longer in affect. Baby Doe might have a chance!! A chance to be snuggled, to have a rub down with lotion after a bath....to have a name. I know he still has a hard road ahead of him, he needs prayers from all of us. Not only prayers for his health, but for the chance of him finding a family fast. A prayer for the current adop0tion to be reversed, thus meaning Baby Doe will have a chance to have another family step forward to take care of him. To love him as I love Rhett, to be happy.
After going through so much with Rhett, I know what it's like to feel overwhelmed by having a sick child in the NICU, However every day I also have the reward of seeing the results of showing a child unconditional love. Every day I wake up to hugs and kisses and little raspy deep voice that tells me he needs toast and chocolate milk, My little Rhett is loved, he is thriving, He is happy, I hold him each night when he goes to bed. I just want this baby to have the life that he so much deserves,
If I were in the position to have a child, I would adopt him in a heart beat., I would put my life on hold and fly our there to be with baby Doe. Not only Baby Doe, but ANY child with Down syndrome, I don't know what's to come these next few days, however I do know that i will be following closely what is going to happen to this little Baby Doe. We have made the first step happen by having the DNR order lifted,. Now we need to find a family who will stay in Arkansas to be with this baby, I will be fighting till the end for this little child's rights, I can guarantee you that.
23 hours ago