I feel, perhaps, that I should communicate my feelings over the last forty-eight hours with the community of people that surround and love us. Because, after all, life is not what we plan, and sometimes God prepares a way for us, that we cannot predict.
My son (I know I'm still getting used to the idea too...it's kind of scary), has Down Syndrome. At least I believe he does. The blood test won't be back until early next week. But the doctors are fairly confident, and so, for that matter, am I (though admittedly my experience is limited.
It has been an interesting experience, communicating this fact to the people I love. Because no one knows how to react. A few people say, "I'm so sorry..." To which I respond "I'm not." Some just say "ok", some "that must be a shock," but the most common reaction is simply silence....or "really???" One friend couldn't figure out if I was joking or not. (I wasn't). Really, I don't know what reaction I expect...I wouldn't know which one to give.
So let me tell our story. Adrienne got pregnant 9 months ago (a predictable number I know). About six months ago she had an ultra sound...everything was normal, then two days later her doctor called. There was a barely perceptible fuzzy spot on the tape. Something that probably was nothing, and something that if it was something, still probably meant nothing. But, if it was there, and it meant something, then in less than two percent of cases it could indicate Down Syndrome. She offered furthur testing, but we really didn't care...it wouldn't have changed how we proceeded. Adrienne and I talked at length about it. Down Syndrome was something we had never imagined for our children. We feel called to reach out together to at risk, and special needs children...but our own offspring. It hadn't occured to us. But we prayed about it together.
Two days later, at school we had a panel of families with children with Down Syndrome. And it was incredible. The kids that came were some of the cutest, friendliest, happiest kids I had ever encountered. And I learned there to see children with Down Syndrome as children...who just needed a little extra care. On my way home that day, I prayed for our child (I didn't know it was a he yet) and I prayed that God would open my heart to whatever he had in store for us. And I prayed that if our child did have Down Syndrome, that I would rejoice in thanksgiving. That evening, Adrienne and I prayed together again, that we would accept whatever he had in store for us with joy.
I continued, throughout Adrienne's pregnancy, to experience God's work preparing my heart to accept his will. As I prayed for our child I knew the bond was forming between us, despite our physical separation.
So, when he was taken to the NICU, I went with him, to watch him begin to breath. When the pediatrician called in the neonatologist, I knew. When she said the words, my heart leapt for joy. God has blessed us with a child who will bring light and joy into our house. It is right, It is good. It is not a difficult thing to accept, or something to get used to. God has already done that work in our hearts. My son has Down Syndrome, and I am glad.
I know it will be difficult. I know that there will be trouble. I know that my life will never be the same. I also know that all of those things would be true if he didn't have Down Syndrome.
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12 comments:
Beautiful story of how God makes a way for us. My wife and I just welcomed our 5th child (who has DS) into the world. We have written our experiences down on our blog at http://jaybirdnwa.blogspot.com.
Hey david,
I love you guys, and I am praying, with a mix of sorrow and joy, that the presence of Jesus will be on all three of you. I can't wait to see your son.
Love Eric
I received your blog through a Google Alert. I want to tell you CONGRATULATIONS on your new son!
I am the president of International Mosaic Down Syndrome Association and mom to a wonderful 22 yr old son with mosaic Down syndrome. (mosaic Down syndrome is a rare form of Down syndrome affecting a percentage of cells. You can visit our website for more info if you are interested)
I would like to welcome you into our very special family! Yes, you will have struggles, however, with every child you have struggles. The joy outweighs all struggles you could possibly face. And, when your son takes his first steps or says his first word, you will rejoice and see it for the miracle that it is!
There are many online support groups that are very helpful and encouraging and when ever you wish to join one, just email me and I will be happy to help you with that.
I would like to share something with you that I first read when my son was diagnosed that has stayed with me and kept me strong throughout the years of raising him.
Please feel free to email me anytime if you have any questions
Kristy@imdsa.org
A Story contributed by Erma Bombeck
This year, nearly 100,000 women will become mothers of handicapped children. Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angel to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew."
"Smith, Marge, daughter, patron saint, Cecillia."
"Rutledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."
Finally he passes a name to the angel and smiles, "Give her a handicapped child". The angel is curious. "Why this one, God? She's so happy." "Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel."
"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that feeling of self and independence that is so necessary in a mother. The child I am going to give her has his own world. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you," God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman who wont take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! I will permit her to see clearly the things I see...cruelty, ignorance, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day, because she is doing my work as surely as if she were here by my side."
"And what about her patron saint?" asks the angel, pen poised in mid air."
God smiles, "A mirror will suffice."
God bless you and your family
Kristy
www.imdsa.org
Hello!
I also read your blog through a Google Alert and I must say that is a very unique "parent story" (of kids with DS) and I hope you get it out into the world (that's a good start!). I am mom to Sophia,8, with DS and to say she is our greatest blessing (along with our other daughter) is an understatement. I am so thankful God had a plan for her in our lives. She has been our greatest teacher and serves as a wonderful "filter" on this world of ours-showing us all that is good, kind, and joyful. Waiting for the testing is agonizing but like you, I had accepted it as soon as the neonatologist told me and I studied her features. Please visit us at http://lovingsophia.blogspot.com/
and also call or email www.gigisplayhouse.org to be sent a WONDERFUL, INSPIRATIONAL free Celebration Packet!
You will definitely begin seeing the world in a different light, starting with friends and relatives who don't quite know how to respond!
Jessica
I also caught your post through Google Alert. Be prepared that there are ups and downs. If one day you feel "down", don't worry--it is normal.Just don't camp out there forever. Just keep going forward.
For an upbeat yet realistic look at what life is like with a teen with DS, come visit my blog.
http://beneaththewings.blogspot.com/
david, you are such an amazing brother. i cried when i read this post. i love little bentley so much already.
Congratulations!!!
My 3rd child has Down syndrome and she is now 13 months old. She is adorable, and far more like my other kiddos than different. Take it one day at a time. DS is different now than it used to be!
I can tell you that I was lucky to get her exactly the way she is, not unlucky!
Wow! Your love for your son is pure and beautiful. We are loving you from afar and hope to be a part of your journey and his. Congratulations again on your beautiful miracle.
Ryan and Andrea
Read your post together on our way to Manantial de Vida this morning... it brought tears to all our eyes...Caroline translated and shared it with all the folks there. Thought you might like to now that many are praying for little Ben in Mexico, too.
Thank you for sharing your faith and how God is an integral part of your family. When my son was born my husband and I learned of the Ds diagnosis. At 7 months old, he is the light of my life!!!
You will find a wonderful support group and loads of information on Google Blogs of other families who have children with Ds.
Stop by and meet Nathan sometime.
God bless - enjoy your little bundle of pure happiness!
I posted this on villagersonline.com, but I'd like to add it here. My gut response when Adrienne was telling Sue about Ben was: "Wow! I can't imagine a better family for him to be born into!" Then I thought other "hope they're OK" kind of things. I'm glad, though not surprised to read this post. I'm glad to hear how God prepared you for this blessing. My cousin's son was born with DS and lived for 11 months mostly in the hospital due to severe heart defects. At his funeral I was amazed at all the hospital personnel who told of the joy and beauty that little Jared had brought into their lives. I'm praying for the health of Ben, and I'm excited to see him grow into the beautiful one that God created him to be.
I too came across your blog on a Google blog alert.
Congratulations on the birth of your son!
I have a 3 1/2 year old brother with Down syndrome. What a huge joy and a blessing he is to our family! His diagnosis was news to us when he was born, but that's the way God made him and we are so blessed to have him in our family.
Our life has never been the same since he (and his twin sister - non DS) was born, but it has been changed for the better for sure!
Feel free to email me at qf@gotdownsyndrome.net, if you need any information or have any questions :).
~ Qadoshyah
http://gotdownsyndrome.blogspot.com
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