Last week, we met with an intervention team from Help Me Grow. Help Me Grow is a support program for families of children who are developmentally delayed or disabled. They wanted to get a good picture of who Annie is, what our family is like, and what our dreams and goals are for her over the next three years. In turn, they will help us tap into the resources and services available to help her reach these goals. Annie has already been paired with an Intervention Specialist, Angie, whom we love. She visits with us every other week, and is fast becoming one of Annie's favorite friends.
The team asked me to talk about Annie's birth, how we learned of her disability, what our greatest fears and disappointments were (and in some cases, still are), and what our dreams are for her. It was pretty much everything I've put into writing, but it was the first time I've actually said some of it out loud to anyone other than Matt.
I shared with them that one of the greatest fears I had was how Annie's disabilities would affect the sister relationship between she and Emma. Surely, I believed, they would never have anything in common.
I think it's wonderful that our boys have no shortage of brothers. We have "The Big Boys," and "the Little Boys," with Emma smack dab in the middle of the two sets. There is no doubt this girl is well insulated when the time comes for teenage boys to start sniffing around.
When I found out we were having a girl, I was most excited to tell Emma that she'd finally be getting a roommate! And weeks later, when we found out our girl likely had Down Syndrome, I felt most devestated for Emma. All of my dreams for their sister relationship were crushed. What those "dreams" were exactly, I still can't even articulate. All I knew was that Annie was going to be different, so naturally (I thought), so was their relationship.
Looking back now, I realize that my reaction was exactly the reaction I don't want others to have.....as if Annie was/is somehow less of a human being. But I can't go back. The fears I had were real and raw at the time, and now serve as a sobering reminder of how far I've already come in this journey.
What is also real and raw is the love Emma has for her little sister, and the love Annie has for Emma:
I do realize that Annie is only 7 months old. She's a sweet little baby, and you cannot help but love her. Heck, strangers at Kroger love Annie....I get offers all of the time to take her home! (Um, no...get away you creeper!) But there will come a day when Emma will probably change her tune. I can already hear it now, with tears and all:
"Mom, Why do I have to share a room with her?? Why can't I have my own room?"
I can hear it now, because I do hear it....from the boys! And Emma won't be crying woe-is-me because Annie has Down Syndrome. It will be because Annie is a curious little toddler who adores her sister and wants to be a part of everything, much to her big sister's dismay. In other words, they'll be typical siblings.
Yes, I still fear a lot of things with regards to Annie, but I don't worry so much anymore about her relationship with her brothers and sister. In fact, I believe know that having each other is going to be the best thing for both Annie, and for the other kids.
There is a chance Annie may struggle to speak, but I've no doubt these siblings will learn to communicate in ways more powerful than words could ever express. There is a real possiblity that Annie may be teased or misunderstood, but it will provide her brothers and sister with opportunity to not only defend their sister, but to become sensitive to, and defenders of, others. There's a likelihood that Annie will never marry, nor will she have children of her own, but she'll probably make one cool aunt after gowing up with this crew!
All good relationships--siblings, husbands and wives, friends, parent-child, and most especially, our relationship with our Creator--all of them take effort; a conscience, deliberate, sacrificial commitment. The relationship between Annie and Emma, and our boys, will be no different. How close they remain will be a result of the effort they put into it, in spite of any differences among them. And it is up to Matt and I to be their first models of this important commitment.
I have 8 brothers and sisters, in-laws, and a whole tribe of nieces, nephews, great-nieces and great-nephews, and we are spread all over the map: Ohio, New York, Virginia, Texas, Nebraska, Illinois, Florida, Alaska, North Carolina, Colorado..... It's rare that we are all home together at the same time (but when we are, Oh is it fun!!) But with all of the distance, and years, between us, our family remains solid and strong because we are commited to make the effort. Love of family was instilled in us by our parents, and family unity is still among our Dad's daily prayers for us.
(And this isn't even everyone!)
A few nights ago, Matt had a meeting after supper, so I hauled the kids to the pool for an evening swim. It was about 8:00 and we were drying off and getting ready to head home when I noticed a little girl with Down Syndrome, probably around 6, cautiously approaching the edge of the diving board. She was visibly nervous and was signing something to her daddy who was waiting to catch her. And who was standing up there with her, patiently encouraging her to jump? Her big sister!
She must have stood with the little girl for 5 minutes, signing back and forth with her, encouraging her, sitting on the edge with her, even practically pushing her in, until she finally jumped! The older sister cheered and the lifeguard nearly leapt out of her chair and applauded!! That little girl got out of the pool, marched right back over to the diving board and jumped in again. It was a beautiful moment in time, and I suspect, a beautiful foreshadowing of what's to come. Another "God-wink" if you will, assuring me that my dream of a sister for Emma came true through our sweet Annie, and I pray that they, and their brothers, always remain each other's biggest cheerleaders.
Oh how I love my girls! (and my boys!!)
**********************************
What is Annie up to these days (besides just being happy most of the time?)
She is 7 months old now, and weighs 11 lbs 4 oz. ...Still a lightweight, but she's finally moving in the right direction. Last week was the last week for our visiting nurse.
She loves, loves, loves to eat, and what she eats would make most first-time mother's cringe: spaghetti and meatballs, ice cream, pancakes, mac and cheese...if we're having it, and it's soft, Annie's having it!
She's rolling all over the place! In fact, sometimes I have to look under tables and chairs to find her....
She now goes to a rehabilitation facility for her weekly physical therapy, and is still part of the tummy-time study. She's definitely getting stronger, although we are still working on getting her to put more weight on her arms so she can be ready to crawl. Next week she will be evaluated by a speech-therapist. Learning to control the tongue in kids with Down Syndrome is very important in these early months. Their tongues tend to be larger, therefore make eating and speaking more difficult. Luckily, she's got the eating motion down-pat!
She loves the water! Beach or pool, she's not picky! I've never had a baby who loved being in the water so much!
And she loves having her brothers and sister home all day.......Her first summer is off to a great start!
No comments:
Post a Comment