I have set up my email to get Google Alerts. This helps me to keep up with any new information concerning Down syndrome and mosaic Down syndrome. I have met a lot of new people this way and have had the opportunity to get a glimpse into people's lives and what they are doing with their child.
Yesterday in my email box, I got a glimpse into Lianna and Gabe's life. And I could totally relate to what Lianna was saying. I am sure that she doesn't feel this way every waking moment of every day, but as parents we do tend to have these days and I think Lianna voiced what most parents feel, but maybe do not express out-loud. As parents of children with special needs we are somehow put on this pedestal of expectations and are expected to be consistently happy with our situation. And, most of the time, we are!
But then there are those days, when we feel like Lianna did yesterday.....
Here is Lianna's story...There Are Days...
There are quiet moments within me when I wish with all my might that the whole damn world had Down syndrome. I wish that Down syndrome was the "norm" and I didn't have to second guess myself, my son and the people around me.
You know what makes people with Down syndrome different than everyone else? Everyone else. Everyone else.
It should be okay to hug and kiss strangers when feeling completely overjoyed. It should be okay to not articulate words verbally but use other means of communication. It should be okay to look like you have Down syndrome. It should be okay to be a three year old boy with Down syndrome. It should be.
There are mornings when I choose not to take Gabriel out to the park - "the social arena". You know why? Because I can't take another moment of Gabriel having Down syndrome in the eyes of the other mothers/grandparents/aunts & uncles/caregivers. I don't have the strength to carry my guard, put on my happy smile and sing "Wheels on the Bus" while pushing Gabe on the swing. These are the mornings when I would rather stay at home, with Gabe, drawing "T's", "A's" and whatever else on the driveway with chalk.
These are the mornings that I hide. These are the mornings that I wish for other children, a sibling for Gabe, or a daycare/preschool so I can go away. Go away and work. Just go away.
We are teaching Gabe to replace hugs and kisses with high-5's. We are teaching Gabe to follow simple instructions, like stay off the road and don't play with the floor register grates. We are teaching Gabe...We are teaching Gabe...We are teaching Gabe...
I'm tired of teaching. I just want Gabe to be.
If given the chance, would I choose a child without Down syndrome? I don't know. Would I change history. I don't think so.
I wouldn't give away the child I have now. That's certain.
I would choose a society that completely accepts Down syndrome, even welcomes this oddly wonderful genetic disorder into the world.
On the telephone today, with the "behavioural department" of our local support services, I found myself starting the conversation with "no thanks" to "yep! Sign us up!". Weaving in and out of conversation was the blatant fact that, "Yes, Gabe does have some issues that I need help with..." More so, I need a mental support beam to hold me up. I spend most of my day emotionally dancing between two partners: "He's only three...This is typical toddler stuff." and "Is he doing this due to Down syndrome and how do I deal with it?" The trouble with all this is that I am standing still. I can't seem to decide what to do in any given situation. And I'm tired out emotionally. I do have some "why bother?" moments.
I've been asked why do I focus on Gabe having Down syndrome when it comes to behavioural things...like repeatedly running into the road. Why can't I just focus on the behaviour and change it?
Well, it's because he does have Down syndrome. Is it going to take longer for him to learn not to run into the road? Will it take him longer to hone that sense of danger and to use caution? I don't know. I just don't know what is contributing to Gabe repeatedly doing this kind of thing. That is the dance. Back and forth, back and forth. All day long. Every day.
I'm all over in every direction with this post, but I guess what I am trying to say is that sometimes, I need to be in either of two places. In a society completely made up of people with Down syndrome - just so I know that everything for my son is going to be alright - or in a place of only me, my husband and my son - just so I know that everything I am doing for my son is alright. Neither of these places truly exist. A good thing, I know, but there are days...
Every parent feels this way at one point or another and I don't think it matters if your child has special needs or not. Parents worry... it is our job! Is my child tall enough, thin enough, smart enough, fast enough? The list goes on and on. We are not all the same because God made us all different. However, when someone looks at your child as if there is something wrong with them, there is this pain that stabs you in your heart because more than anything you want your child to be accepted in the world. You want everyone to see your child's funny side, their tender side, their personality-the way you see it. When a parent looks at their child, they don't see the faults, they see the child! And it hurts when others don't see that.
I encourage everyone to read:
Dear Lianna-Please remember that Italy is not always a wonderful place! Italy has just as many problems as Holland does and sometimes.... it has so many more! So, in the midst of the weeds, find the tulips! In the middle of the storm, watch the windmills as they gently turn in the breeze. And remember that you are not alone in any of this! We are all in this together and together-we can help everyone understand what areÂ Â beautiful place Holland is!