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The Blessings of a Child with Down Syndrome

The Blessings of a Child with Down Syndrome

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The author's daughter, Rozie
The author's daughter, Rozie

Today I was shopping at my home away from home, also known as Target, and I got sucked into the tiny isle. You know, the one in the baby section with all the little newborn socks, mini sandals that fit in your palm and one-pieces that could fit a doll.

I looked at my big girl, and I felt like I had just been there buying her tiny sandals. Then I realized, "Hey, I was just here!" Rozie just recently grew out of newborn-size shoes, and she wore 0-3 month stuff for most of her first year. Rozie will be three in a few months, and we are just now fitting into 24-month size, and honestly, I'm loving every minute of it.

I sat through a few very long appointments, and trust me, the tiny shoes were never mentionedThis got me thinking about all those simple, wonderful things that go along with having a child with Down syndrome. The stuff they don't tell you when the genetic counselor is sitting there with a flip board explaining chromosomes and whatnot.

Trust me, there is no page they suddenly flip to with a picture of a tiny shoe that could melt even the most non-maternal heart. They don't look at you and say, "See these little heart-melting wonders? Your baby will wear them for at least two wonderful years! Every time you put them on her you will be forced to kiss her tiny toes, and most likely you may buy a few pairs and arrange them on a shelf so that when she is not wearing them you can look at them anytime you want." I sat through a few very long appointments, and trust me, the tiny shoes were never mentioned.

This got me thinking about the other pages I’d like to add to those flip boards. All the wonderful things they never tell you about having a child with Down syndrome.

Here are my top 5:

1. Children with Down syndrome typically have smaller statures, causing them to keep a “baby” appearance for longer. Low muscle tone also contributes to this. I’m one of those mothers who sniffle over the fact that their baby with the soft blond curls is actually now taller than they are. I can look my big teenager in the eyes and say with all my heart that he was just a baby a few years ago; I was just holding that hand with the baby dimples last month. It all flew by too quickly. Rozie is staying in this stage a lot longer, and I relish each and every minute of it. Give me baby fat, give me tiny clothes, give me soft baby snuggles, and hear me roar.

The wait and extra effort make every milestone a cause for celebration2. Children with Down syndrome need a little more help reaching their milestones. They do everything a bit later on the developmental charts. But the wait and extra effort make every milestone a cause for celebration. When a child becomes a Bar Mitzvah, we celebrate the achievement and all the hard work he put in. For a child with Down syndrome, every milestone feels like a Bar Mitzvah. No joke, I almost rented a hall to celebrate when Rozie walked. I love this, and I wish I celebrated like that with my other children. I wish I jumped for joy when my boys first tracked a mobile with their eyes, or batted at a toy for the first time, but I honestly don't remember when that happened. For Rozie, I know the exact time and date.

3. Having a child with Down syndrome will soften your heart, allowing you to accept people as they are, regardless of their abilities. I’ve noticed that since I had Rozie, I am more accepting of people in general, and particularly of those who have mental disorders. One time a homeless man came into a store where I was shopping and started yelling at everyone. Nothing scary, just loud. Usually I would avoid this type of situation like the plague, but this time, I was able to see right through the behavior to the beautiful soul below. I did not run. I just went on with my shopping. Thank you Rozie for giving me that gift. I plan to treasure it always.

4. When you have a child with Down syndrome, new people come into your life. I have made friends across this country whom I genuinely cherish. I met these women on online forums, through my blog, and just in real life. It's like when you drive a fancy car, other people with the same car will honk or flash their lights at you to acknowledge that you both have the same impeccable taste, or maybe it's to say, “look at us we are so lucky to have these fancy cars!” Having a child with Down syndrome breaks down social barriers, and you find yourself flashing your lights at other Down syndrome parents, acknowledging that you both have something great to share with each other.

Having a child with Down syndrome breaks down social barriersWithout that little extra chromosome, I doubt that this chassidishe mommy would have ever met amazing women from places like Kokomo, Indiana, Ohio, Westminster and many others that I have never even heard of. And since we are talking about the people in our lives, have I mentioned Rozie's therapists? It will be a tear filled day when Rozie is no longer eligible for services through infants and toddlers. I cannot imagine what our lives will be like without weekly visits from some of our favorite people.

5. Last but not least, raising a child with Down syndrome is wonderful and amazing because having children is wonderful and amazing. It makes you realize that a mother's love is not based on a child's ability, but on your own ability to accept and give. Having a child with special needs can sometimes be hard, but sometimes it’s not. And after you realize this, then you realize this is true for all children. You realize that children with special needs are not beings that walk around suffering from an illness, but special neshamas that learn and do things differently. I love celebrating difference.

Sometimes I sit and wonder when the other shoe is going to drop. When is this going to really get hard? I remember saying to people when Rozie was a newborn and had a lot of medical issues that, actually, it really wasn’t that bad. ”Wait till she is a toddler and the differences become more significant,” they said. Then she turned two, and I thought, “Hey this is actually getting easier!” Then they said, “Wait till she is three. That is when the cognitive differences really become prevalent.”

Parenting is hard, periodRozie will be three in two months. Now they tell me to wait till she gets to elementary school… Well I'm done waiting, because I have news folks, get ready it may be groundbreaking: Parenting is hard, period. I have yet to hear a parent say, "Oh parenting is a breeze, I whizzed right through it without a hitch." But parenting is also eye-opening, life changing and worth every minute, and the same goes for raising a little one with a bit extra.

May we merit the coming of Moshiach soon in our days, when every neshama (soul), regardless of ability, will shine bright.

Sheva Givre married mother of three. Was born and raised in the beautiful desert of Arizona and in recent years moved to Baltimore, MD. She is the author and photographer of the inspiration blog, My Shtub, where she photographs and writes about the joys and challenges of family, motherhood, and raising a child with special needs.
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Discussion (91)
November 14, 2013
I am the proud mother of a 3 month old baby who happens to have down syndrome, and is the most beautiful baby girl I have ever seen. I am new to all of this and am so thankful for all of the information from other proud parents! I really hope that all of you who have older children and share your experiences mean to new parents who need advice on what to do. I feel so blessed with my baby Grace-she is so wonderful!
Aimee
Florida
October 26, 2013
Choosing a baby with Down's
Recently, I met someone I fell in love with. First time I fell in love. I thought he felt the same way about me. I wanted a baby and that's when it went sour. He withdrew. He did not want to take the 1:35 risk of having a baby with Down's syndrome. You see, I am 43.

My heart breaks every time I read comments from positive people. My heart breaks because of the love I have lost and the baby with Down's I will never have.
Anonymous
Nottingham, UK
October 5, 2013
beautiful story, thank you.
I also have a Rosy (she's almost 21...where did that go?)
Toni
Sydney
July 30, 2013
I am a mother of 3 with a 10 month old that has DS. She has brought so much joy into my life I can't even explain. I didn't know she had DS until she was 2 weeks old, and I cried because I was afraid of what she might be faced with in her life, but now I realize that I am so blessed that God thought enough of me to bless me with my miracle little Angel!!!
Kimberly
Dillon SC
July 20, 2013
My Brooke
I knew my baby had Downs when I was 6 months pregnant. She is now 8 yrs old and is the apple of my eye. I cant imagine my life without her !
Shawn
Louisiana
July 17, 2013
Hi!Sheva

The article brings back memories of my childhood growing up with my younger brother who is a Down's syndrome. He is now 31 and lives with my parents in India. They really have a big heart and get attached to people very soon. He is stubborn at times which is not uncommon even for a normal child. It is true that we meet new people we probably wouldn't have and gain knowledge of new things because of them. I am proud of my mother who has taken the effort to be who he is which can be seen in this blog - specialchildren-downs.blogspot.com
Bhagawathy Sarma
July 9, 2013
Thank you
Our little Chaya has downs. Shes a little over a year old and sometimes I struggle with the idea that I wouldn't want her any way else. I mean I should want her to be "normal" and "on target with her development schedule"...but I think she's perfect the way she is.

So I'm not alone in this. Kids with Downs Syndrome are cool. Just the way they are.

Now if I could just stop getting people asking my and my wife if we knew she had downs before she was born as if letting her live was some sort of choice...There is nothing more insulting or evil than asking the parent of a beautiful baby daughter whether or not you considered killing her before she was born. Are they going to do that when she's old enough to understand? How do I explain the newspapers articles in Haartez talking about testing and "early intervention" for Downs pregnancies to her when she's older.?


The only thing that stinks about Downs is other people at times.
Scott
Haifa
June 18, 2013
Blessings
Hi I loved all you said and I can tell you there will be hard times but every sec. is worth it. My brother is a down baby , well he's not a baby any more he is 46 he has lived with me for 30 years and has taught me so much about myself. I can say having him in my life was a true blessing. One thing I learned is not to do everything for him to teach him how to do things and he now can do anything we can do . He can be stubborn but has a heart of gold.
luca l harvey
Hazlehurst
June 10, 2013
It is amazing, the lessons we learn from turning a supposedly negative experience to a positive one. Accepting our faith and trusting God for the best. I am just overwhelmed reading the beautiful experiences of these wonderful mothers. Learning all the way. Thank you all for sharing, it has made my day.
Anonymous
Nigeria
June 5, 2013
Joanna's journey continues
I'd written earlier and wanted to update - Joanna's 16 and a half and is completing the eleventh grade. As she is a quadruplet, her three twins are, too. Joanna's sister earned a perfect score on her math sat exam, and got terrific reading and writing scores as well. Recruitment letters from ivies including harvard and Columbia are on the kitchen counter and we're figuring out where the three will be going when this next school year ends. One of Joanna's brothers is already a professional jeweller, (designing and creating extraordinary art), and her other brother is the captain of the brainstormers, and competes nationally in history bowl and bee... Joanna's reading skills are incredible and her social skills are superior. She is nothing like what either her dad or I could have imagined. She is our family's glue and brings an entirely other aspect to our lives. There is nothing "less" about Joanna - and I'm being objective and not rationalizing.
San
Dix hills, ny
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