Do you think it's ironic that in October 2011, I found out my son Leo would be born with Down Syndrome? Or am I just that lucky? October is "Down Syndrome Awareness Month". I'm happy to say that one year later, in October 2012, I'm more aware of what Down Syndrome is... and what it is not.
Here are a few things I would love to go back and tell myself one year ago. And if you're a parent who has been given the news that your child has an extra chromosome, here are a few things I want you to know.
1. The families you read about who say how happy they are having a child with Down Syndrome in their family, how much they love their child with disabilities, and how wonderful life is... are honestly telling the truth.
A year ago, I scoured the internet looking for "real life answers" on how life would be having a child with Down Syndrome. I came across letters through the Down Syndrome Guild with stories about how normal things were for other families, and how wonderful it was to have these children. I thought they must be fooling themselves. I searched through blogs and other sources on the internet... and still, only more bright and normal stories! I thought they were just looking for the bright side, or painting a pretty picture for everyone else. Where were the stories about how hard it was, and how sad they were? Afterall, I was pretty sad and Leo hadn't even arrived yet!
So one year later... Okay, I admit it. I was wrong, and they were right. There, I said it! Our life is completely normal. We have a 7 month old baby boy who brings joy to our lives simply because he is our son and a little brother to his siblings. He cuddles with us, smiles and laughs, he jabbers syllables, he makes stinky diapers and rolls all over the floor. Leo even throws some pretty mean fits, maybe I should be sure to share that sense of normal! Simply put, he is a sweet, sometimes tempermental, and chunky 7 month old. Who just happens to have an extra chromosome.
2. It doesn't take someone "strong", "special", or hand selected by God to raise a child with Down Syndrome.
I still hear how "strong" I am, what a "special" family God has picked for Leo. I would like to think we are all of those things. But honestly, all Leo needed was a family to love him. The same as every other child. God heard our prayers for another baby, and science or nature formed him the way he was meant to be. Now since I'm NOT a perfect person, God gives His grace to cover my mistakes as a mom. I just want you to know that if you're expecting a child with special needs, you don't have to be strong all of the time or special in any way. The only requirement is that you love your child... and believe me, you will!
3. You will be glad you had prenatal testing to inform you that your baby has Down Syndrome. You will be thankful to have the time to adjust to how he is made, so when he is born you can completely focus on him and merely enjoy his arrival.
I am so thankful we knew before Leo was born. The majority of families I have met through our DS connections didn't know prenatally. So many women say "I didn't want testing, because it didn't matter. We would have had the baby no matter what." Knowing in advance was the biggest blessing, as it simply gave me time to get my crying and sadness out of the way. It's as simple as that!
The testing wasn't to give us the avenue to decide about whether or not to continue with the pregnancy, it was simply to let us know if there was something wrong with our baby. But it did make me realize the "choices" that parents face with today's medical technology, and for that I am torn and sad. For every Leo, there are 9 others like him that are terminated by their parents. That is a whole other night of writing... seriously.
Bottom line, I would never have changed how things worked out for us. The numbers reported about the risk for amnioscentesis is VERY HIGHLY exagerrated, especially when you look at the treatment from high risk perinatalogists in major cities. The perinatalogist who performed mine had a complication in only 1 out of 600. That is miniscule compared to what we gained out of knowing. I will also say that for every mom I've met who didn't have testing done prior to pregnancy, they now say they wished that they had known.
4. Even if your child requires a lot of doctors appointments or medical intervention, you will make it through. In the midst of all of those appointments, you will even find others who are going through more than you. So be thankful!
As you know, Leo has had a few minor issues. Yet things could always be worse. For someone else, they are worse! Some weeks he has no doctors appointments, and some weeks there are several, along with therapy appointments. There are moments when life feels normal and routine, and times when I feel "doctored out". In the midst of those times, I've always seen or read about someone whose child is going through more. I would love to see no child going through a ton of medical treatment... but then again, we are blessed to have modern medicine to treat our children and give a better quality to their lives.
5. The world has given you expectations of how your child should be born, but this child is going to change how you feel about that.
I don't know what I really expected Leo to be like. I tried to imagine it, and could never clearly form him in my mind before he was born. I do know that when he was born, I instantly saw some of Meris (his older sister) and some of Seth (his older brother). The way he would sleep with his arms above his head like Meris, or the way he widens his big eyes like Seth. When he was first born I thought, "Hmmm... this kid is just like my others. Are we sure he has Down Syndrome?" In fact, I can't tell you how many friends of ours would say the same thing. It was suggested that we should have him "re-tested". Well, I don't know... are we sure his DNA was correct the first time? Could his DNA have changed? Hmmm...
Looking back, I love the fact that we questioned whether or not our child has an extra chromosome. I love the fact that our close friends questioned it as well. Do you want to know why? It proves my point of how I feel today. And THAT is... there's no difference between my children. They are all perfectly and wonderfully made just the way they should be. I really do look at Leo and see him the same way as my other children. I really do! In fact, I remember filling out paperwork for Leo when he was a couple of months old and coming to the question "What is your child's disability?" and stopping to ask the person in the office... "Do I put Down Syndrome there? Is DS a disability?"
I also used to think that I saw all children with disabilities equally as other children, but I was wrong. A child with a disability now captures my attention, unlike before, and I love to see them tick in their own special way. Having Leo has made me realize children with a disability compares to blue vs brown eyes, how tall they will be, if they are naturally athletic or a musician, or whether or not they have freckles. Oh I know... there's a bigger picture to have a disability. But really and truly, I don't see that right now.
His extra chromosome doesn't define him, it merely adds to the list of his features... you know, like "blue eyes, light brown hair, chubby cheeks, strong legs, and three chromosome 21." Yes... that's my Leo.
Love,
Joyce
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