Sunday, November 25, 2012

My Side of the Story

It is my hope that one day I can help other people going through the same things we're going through. When you're in this type of situation, you need someone who has been through it -- no one else can possibly begin to understand.

When we were first diagnosed with everything, I ate, drank, breathed and slept other people's blogs.  Some of them I liked more than others. Some were funny, some were sad, some were boring, some needed a serious case of spell check and a GED.

But all of them I could relate to. I had many of the exact same thoughts and feelings.

This is my version of things. Maybe it will be more of the same.  But maybe someone will find something here that they didn't find elsewhere.

Maybe you will agree. Maybe you won't. But it's my story. And I'm writing it as I go.

We are the authors and editors of our own lives, afterall.

The truth is that our lives don't revolve around a diagnosis. But I will talk about it a lot because it's what we're going through right now. And I do feel a sense of responsibility to relate, educate and advocate.

Because while those of us that experience this are all different, it seems the gamut of emotions is pretty much the same no matter who you are.

Heart defects and Down syndrome are scary. They are the unknown. They are The Thing That Will Never Happen to You.

Until they do.

It is my hope that those of you in similar situations find something here that helps you out. Or that you at least find comfort knowing you're not alone.

And that those of you who aren't going through this understand what these diagnoses really mean, and see for yourself that people with Down syndrome are just that.  People.

Besides, writing it all down helps me wade through this unchartered territory. It helps me figure out what I think and feel about different aspects of this journey. I will grow and change as time goes on -- this is a fluid process and what I feel today may not be true tomorrow. Documenting it will help me tremendously with finding my ground.

One day in the near to distant future, I'll write about the pregnancy and the emotional roller coaster that we were on for seven months (and are still on, to a degree). Honestly, I'm still processing a lot of those thoughts, and it's going to take some time to get them on paper.  But they will come, because it's important.

For today, I want to say that while the heart defect still terrifies me, I'm not as scared by the Down syndrome anymore.  Do I worry?  Yes, of course.  We all worry about our children.  I wonder about his future and who he'll be as an adult.

But the reality is this.  He is a beautiful, cuddly, sweet, typical baby boy.  He smiles and coos and grabs his toys and loves his playmat. He is a pig just like his sister, and here's what will piss you off:  He sleeps 9-10 hours a night.

(Yeah, I think the Lord baby Jesus threw me a bone on that one.)

Sure, part of me wishes that the only things we had to "suffer" through were late night feedings and acid reflux. Unfortunately, we have infinite fears and anxieties for R.  

A lot of those are related to his heart and will be over soon.  We know it won't always be this way.  We won't always be in isolation, scared of germs and fearing the worst as our baby boy gets closer and closer to surgery day.

At the same time, we are cognizant that getting through one stage in life doesn't guarantee that we won't have another battle right around the corner. That maybe this one particular worry will go away, but there will be many more waiting right behind it.

But we can deal with those stresses. 

Our biggest problem by and large is going to be keeping me out of jail.  Pat says he carries around bail money, just in case.  Because this is the truth:  If anyone messes with my babies, they will wish they never met me.  The stuff that people have said to us when they are trying to be NICE is bad enough. 

Lord help the person that says something mean.

Regardless of whether or not I end up in prison, I have huge hopes and dreams for both of my children.

My wishes for L are vast and endless. That she will be a good person. That she will be kind. That she will be a leader.  That she will help others in need. That she won't have too many challenges in life. That if she does, she will fight to overcome them. That her dreams come true. That she knows she can be anyone or do anything. That she remembers where she came from. That she always knows that she is loved.

(That if she ever beats up another kid for making fun of her brother, I'll pretend to be mad, but will secretly be high-fiving Patrick and doing a little jig because that kid had it coming.)

Of course all of these dreams are the same for R. But I also have different hopes for him.

My dreams are that by meeting him, other people become better. That he will be treated kindly. That although life will present him with more challenges than most, he knows he can overcome them by working hard and fighting against any stereotype or statistic that stands in his way. That he dreams big and knows he can accomplish anything he sets his mind to. That though his dreams may outwardly contrast with those of others, they are dreams nonetheless. That he may be different in a few ways, but he is alike in many more. And that while his differences are a part of him, they are a small part. They make him no less important than anyone else. And that while we will let him go his own way, he will always have a home with us.

That he is loved.

When I am with my son -- holding him, playing with him, kissing his chubby cheeks -- all of my fears seem to vanish. There is no anxiety. No what ifs. No sadness. No heart defect. No impending surgery. No doctor's appointments. No Down syndrome. No therapies or delays. There is just him.  

He is ours. And he is perfect.


  1. I'm so glad you are blogging, and I cannot wait to meet Reid. He is just so adorable. I too know that his surgery will be successful and his heart will be good as new. From one Mom of a special needs child to another, your life will continue to be blessed in so many ways. Even though there will be a wide range of emotions for you throughout Reid's life, the joy of being his Mom, watching and appreciating even the smallest gains will far outweigh any pain you will experience. I love you and am so proud of you.

  2. Love reading your blog! Wonderful post. M

  3. You have me in tears! I know what we are going through doesn't even compare to y'all but it definitely has given me a different outlook on everything. No matter what obstacles Reid or Victoria has to go through, it does not define them. There is a reason why we were blessed with these special children!

    I loved reading your story and your strength is amazing, Reid and Elle could not have been more blessed with such a loving and caring mother!


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