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DOWN SYNDROME

Down syndrome.

It's funny how two little words have the power to incite such overwhelming dread. It is, after all, The Thing we most want to avoid when we're pregnant. It's what we do all of that prenatal testing for - the quad screens and the nuchal translucencies. The amniocentesis and the CVS and the blood work. Nevermind that these tests aren't always a reliable marker for Down syndrome and often bring more anxiety than peace of mind. We do them anyway because we will do pretty much anything to hear a doctor say that our unborn baby is perfect.

Isn't life ironic? We spend so much of it unwittingly chasing after our own individual idea of perfection. We have hopes and dreams and ideas about what the future will hold, and this is especially true for our children. If there is one thing we use the word perfect to describe most, it's our babies. We all have perfect children, don't we? They are the cutest, funniest, smartest and most "advanced." We slap them all over Facebook and Instagram and blogs like this one and convince ourselves that other people actually care about our precious offspring and their feeding schedules.

So, what happens when that idea of perfection is shattered? When we get the news that we are most dreading? When we hear the two little words that cause our world to seemingly crumble all around us?

Well, everyone is different and there is no right way to react, but I shut down. I cried for weeks and thought the absolute worst. I envisioned a child that just laid there and had no emotion. A child who would never walk or play or work or talk or love.

I believed that life as I knew it was over. You can read the details on my post A Story of Us.

I can say all of this now without a tinge of guilt because I know that my reaction was perfectly normal. A Down syndrome diagnosis is rough - no matter how you receive it. (Even though all of my personal notions about Down syndrome came from a place of complete ignorance and a lack of education.)

But, I can say with equal certainty that this too shall pass. That all of the big, scary, horrible things that we think and feel when we receive the news will one day (sooner than you think) be just a memory. And all of those negative emotions will be replaced with some of the richest feelings imaginable - joy, pride, benevolence, appreciation, and of course, overwhelming love.

You will hear so much about what Down syndrome means for your child. Some of it may be true - yes, there is the possibility that some children will have serious medical issues that need to be tended to. 

Ahem...

There are doctor's visits and endless hours of therapy. You'll have Early Intervention meetings and IEPs. Honestly, I learned about 75 acronyms in one month. But as frustrating and time-consuming as some of these things are, they all exist to help our children develop and reach their greatest potential.

That said, there is an equal if not greater amount of information out there that is untrue. I can't even give credence to most of it. But, one thing that gets me particularly upset is the notion that a person with Down syndrome has no quality of life. That it would be a "disservice" to bring him or her into this world when all they and their parents will know is heartache and pain.

I'm not saying it's easy. It can be time-consuming and exhausting, as it often is with ANY child, and Down syndrome certainly comes with a steep learning curve. But I truly believe that the most difficult part is the diagnosis.

Obviously, my son is only three, so I don't have a lifetime of knowledge to back that statement up. But I say it with 100 percent conviction anyway because now that I have Reid - now that he is here living and breathing and smiling and very much walking and talking and playing and loving - I know that nothing could ever be as difficult as life without him.

Reid has taught me about everything that is important in this world - unconditional love, patience, perseverance, compassion and courage.

If his sister is the light of our life, Reid is our compass. We couldn't maneuver this world without them.

I know how scary a diagnosis is and all of the thoughts and fears that come with it. But, I simply cannot fathom how anyone could look at my boy or anyone like him - even with all of the illness he's been through - and say that he has no quality of life.

This boy has given us new life. Our children ARE our life.

I could go into detail about all that your child can and will do, but there are far better websites, books and videos for that - I've listed many of them below.

I have documented a lot of our personal experience on this blog and will continue to do so.

My advice to all new parents is to find your village - encircle your family with the people who will love you unconditionally. Find those who see your child and not a diagnosis. Much of your tribe will consist of existing friends and family, but there will also be a lot new friends and an entirely new type of family.

Meet other parents and their children with Down syndrome. And then meet even more kids and teenagers and adults with Down syndrome. See how they are living happy, fulfilling lives and doing many of the same things that you and I are doing. See if you can meet someone with Down syndrome and not see Quality of Life radiating from their pores.

And then invite others to know your child and watch as small, positive changes happen all around you.

There will be ignorance and stereotypes and you can handle those as you see fit. Most people mean well and sometimes it's easiest to gently remind them that every child - regardless of whether or not the have Down syndrome - is different. They all have their individual personalities, likes, dislikes and habits. Every person learns in their own way, has a wide range of emotions and thoughts, and will grow into a unique and capable adult.

But most people will love your child with a ferocity and loyalty that will bring you to tears. They will hold them and kiss them and support them. They will advocate, educate and defend right alongside you. They will do their very best to raise you and your family up and when they don't know what to do, they will ask you to teach them. They will love your child so good that it will make you wonder what in the world you were so scared of in the first place.





Congratulations on your perfect son or daughter. You have a lifetime of blessings ahead of you.



Helpful videos:







For more information on Down syndrome, visit:

National Down Syndrome Society

International Down Syndrome Coalition

Boston Children's Hospital Down Syndrome Clinic


Recommended Books:

Gifts - Kathryn Soper

The Year My Son and I Were Born - Kathryn Soper

Down Syndrome Parenting 101 - Natalie Hale

We'll Paint the Octopus Red - Stephanie Stuve-Bodeen (for siblings)

Road Map to Holland - Jennifer Graf Groneberg

Bloom - Kelle Hampton



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