Tonight I am full of love and pride and HOPE! Yesterday I heard the beginning of a story about a set of twins who were to be adopted into the same family. One of the babies was diagnosed with Down syndrome and he found himself left in the NICU of Arkansas Children's hospital with no one to take him home, without his twin and with the added bonus of a Do Not Resuscitate order in effect. Talk about a lucky streak- not so much.
When I first read about this little man my heart broke. I mean that quite literally- it was suddenly painful to breathe and all that I could do was try to fathom the cruelty and callousness of people.
Before Casey and Connor were born I didn't know if I could handle a child with special needs. After they were born and diagnosed I learned that it is not that difficult and the rewards FAR outweigh the hardships. In fact, other than the occasional ignorance of people there have been no hardships. My sons have changed who I am to the very core of my being. Because of this it is my new wish to change the world.
Back to Baby Doe- I posted the story to my FaceBook wall and it began spreading as others in the Ds community caught wind of the story and posted it on their walls and emailed the story as well. Baby Doe appeared in blog posts, letters to the Governor, appeals to the press, the hospital B.O.D., and prayers throughout the world. This tiny little person went from not having a family to having THOUSANDS of people praying for him and lining up to be his advocate. WE became his family. Together we became ONE for Baby Doe.
We called, emailed, blogged, prayed, cried, hoped, prayed, strategized and repeated until we finally received word that the DNR was lifted.
Praise be to God! We fought and we took a stand and now, this little man who is more loved than he knows has what we all wanted for him- a chance.
Let this be a lesson- You can make a difference if you care and if you make your voice heard. You CAN change the world.
"So when you feel like hope is gone,
Look inside you and be strong,
And you'll finally see the truth that a hero lies in you."
Keep praying for Baby Doe- he is still a sick little man.
6 comments:
I am one of the many DS parents that joined you in the fight for Baby Doe. I can honestly say that I spent most of the day in tears, both of pain and joy, and I'm so happy that we made some progress! Not only am I happy for Baby Doe but I am also absolutely thrilled that this fight has pulled so many of us DS parents and advocates together in our new Facebook group (which is at 199 members as I write this post!). I couldn't have put it better myself: Together We Stand As One!
I am another mom who has a child with Down syndrome in her crew that heard about this on fb on Friday night. I, like you and so many others, spent a majority of my weekend trying to advocate from states away for this precious lil babe. God does hear our prayers- and while I'm not sure what His purpose in this was, I am saying prayers of thanksgiving that the DNR was removed and continuing prayers for the lil guy who still has a lot to overcome medically. We rallied around a child, that we've never met, and came together to get something done. We are a powerful group when someone messes with 'one of ours' and I am proud to know so many caring people in this world...and very thankful for the internet- where would this lil guy be if we hadn't had the means to reach out to others via the web? This is just the beginning in my mind as I want an answer as to how baby doe law didn't apply and this was an issue in the first place.
hi, just found your blog and would love to continue to follow and add you to my blog roll. You little ones are absolute dolls.
I am also one who has had a broken heartover this sweet baby.I think as parent who has a child with Ds we dont need to explain to another how much this sickens me and what they mean to us and our families. Yesterday, I emailed the Ark governor and several members of the hospital and I told them I pray they would get thousands of these letters in regards to this precious child. I also told them about how much potential children and adults with Ds have and of course I told them about my sweet William and how we could imagine life without him.
He remains in our prayers for a healthy recovery so he will go home to loving parents
SOOO happy that this man has a better chance now. This makes me sick, how could people be so cruel. When I think about it though the little guy is better off without people like that anyway. As a mother to a son with DS, I couldn't imagine mising out on the miracle of life that my son has brought to myself and my family.
I am a proud mama to an almost 3 year old little girl. She is the light of my life and without her i would not be who I am today. I am currently in Mexico and just read about baby doe this morning and like all of you am sickened by this. It just makes me so upset that someone would leave a child at a hospital and take the so called perfect child home. I hope those so called parents are made aware of how upset all of us in the ds community are and are ashamed of themselves. Please continue to post updates on this beautiful baby boy. I will keep checking during my stay here.
I am so glad that you posted this on FB. The story is tragic and heart wrenching! But because of you I found out about it, and I feel in some small way that I too have helped him. Your an amazing mom, and I don't have to meet you to know that its true! Your boys are blessed to have you, just as you are blessed to have them!
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