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 mentioned. This 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 celebration
2. 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 intellectual disabilities. 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 parents of children with Down syndrome, acknowledging that you both have something great to share with each other.
Having a child with Down syndrome breaks down social barriers. Without 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 disabilities 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 disabilities 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, period. Rozie 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.
This is the author's daughter, Rozie.
