Down Syndrome Support Group

**many houseapes** · 03-26-2010, 01:14 AM

I would like to start a support group for parents or other relatives of Down Syndrome children.
My name is Debra and I am the proud momma of a 3yr old Down Syndrome little boy named Zachary.
Zachary is like any other 3 yr old boy..he loves to get in trouble

Loves to be outside...likes to tease to get others to chase him....loves our huskies(that are only a few months younger than he is).At 2 yrs of age, he started to whistle for them - totally amazed me - none of my other children could whistle at 2 yrs old

. He has overcome so much (forgive me if I jump from one thing to another)....We didn't know that he had Downs until he was about 10 months old.....that I will never understand. He was born at home & showed no signs of it at first.When he was 2 months old & not gaining weight, the dr. had me supplement nursing w/ formula. 2 days after I started supplementing, he contracted bronchitis which landed him in the hospital. The cause was that he had a swallowing disorder and he would suck the formula down his lungs b/c the formula was coming out too fast. I had asked the nurse if they had tested him for Downs & I was assured that he had been& that he didn't have it. We finally got the disorder under control & Zachary began to gain some weight. But his muscle tone was very "floppy". So entered the neurologist into our lives. He ran so many tests on that little boy & still could not figure out what the problem was...then he wanted to do some more invasive tests that I thought that were way too much than Zachary could handle. Zach's pediatrician stepped in & sent him to a geneticist(sp?)....that's when he was diagnosed w/Downs. Looking back through his hospital file, there was never a test performed on him that showed he had Downs...I couldn't believe that the hospital had lied to me! Grr.
The only thing that got me through the waiting period for the test results was Jesus Christ. Deep in my heart, I somehow knew that he had Downs...I was already to accept this fact.... but then one afternoon as I sat in the rocker, rocking my son....I remember looking out of the window at the trees blowing in the wind. I started to cry..."Lord Jesus...why Zachary?...he's so inocent....its just not fair for him...he didn't ask for any of this". & I swear (no, I'm not nuts) I felt these words in my heart before I ever finished my last word...I heard Him say...."Debra, do you love this child?" I answered...."you know I do, Lord - with everything that I have"....then He said " Then Let Me". It was also instilled in me that day that Zachary would have an extroardinary gift of faith. Wow! God is just getting started on this kiddo

I could write so much more...its so incredible, but its getting late. I just hope that I can help others through this.

**mauimagic** · 03-26-2010, 03:51 AM

Debra what a blessing Zachary is for you, your family and the world!! Wasn't he smart to pick you for parents!! Mahalo for introducing him to us. I am so glad that the Lord came through so clearly for you that day - blessings certainly do abound!

I hope that you will share Zachary with us as he grows up!!

**NewLeaf** · 03-26-2010, 06:49 PM

Your post gave me goosebumps. I have a child w/ aspergers/adhd and I know how hard it is to hear something is wrong with your child. I feel that God is with us and I believe he won't give me a burden too big to handle. Bless you and your family.

**many houseapes** · 03-28-2010, 11:14 PM

I can remember the day that the geneticist called to tell me about the results of Zachary's tests....they were positive. I took the news a little better than I thought that I would. When Dh got home, I took him to the backyard to tell him the news in private. My husband is a big man with a very soft heart...and when I told him, this giant broke down in tears....through these tears he said..."I prayed so hard that he wouldn't have it- I prayed that they(dr.s) were all wrong". After awhile he phoned his boss to tell him the news and that he needed to be with me & Zach for the rest of the afternoon.
I thought of my friend who just a few years prior had a little Downs boy - Noah, and everything that she & her family went through. Little Noah was born with nearly all of the middle of his heart missing. The heart specialist performed 3 surgeries to reroute everything so that Noah's little heart would beat normally...and it was a wonderful success. Everything was great until that precious little one contracted pnuemonia...and in a course of 3 days...little Noah went to be with Jesus at 19months of age. 15 people came to know the Lord at Noah's funeral...he touched so many - us included.
On that day that we had learned about Zachary, I called Pam (Noah's mother)...and told her what we were experiencing. I will always remember her words....."I don't want this to sound the wrong way....but what a blessing.....what a blessing". She came over soon after and we had a nice visit and she shared with me so many stories about Noah and before she left she told me with tears in her eyes "Just watch and see what the Lord is going to do with this child - just watch & see".
I was so amazed at how many people were so helpful...I have yet to have someone say anything negative....I am just so thankful for those that were placed in my path when I needed encouragement the most