Monday, August 29, 2011

It is what it is.

When I began this blog I did so because I wanted to teach people what Down syndrome is really all about. I wanted people to know that it is not the end of the world and I figured that if I could save one unborn baby diagnosed with DS from being aborted I would have been a success.

My goals remain the same. I also made a promise to myself that what I write is honest and heartfelt and as real as I could make it- no matter what. If I am going to be true to that goal then I have to make this post.

My sons amaze me. Honestly. Everything they do is so cool. I am sure all mothers feel that way about their kids but there is a depth to Casey and Connor that I was not expecting. I'll explain.

The other day Casey was busy at work with his Mega Bloks. He LOVES his blocks. That boy is one heck of a tower builder! The amazing thing is- during this particular session he built a tower of only blue blocks. There are red blocks and yellow blocks, and green and orange blocks all mixed in but Casey wanted only the blue ones. He really thinks things through. He is patient and he knows what he wants and he does it.

This is not the first time Casey has searched for the right blocks to make a creation come to life. We have a great video of him building where he is searching for specific blocks. He sometimes only wants blocks with 2 posts or sometimes he wants ones with 3. He shows a level of concentration that I was not expecting and am continually impressed with.

Connor is no different. He loves books. He will sit and look at books for 30 minutes or more. He studies the pages, he has favorites and he adores being read to. He watches so closely when people speak to him. He watches and tries to imitate. He is fascinated by words.

My sons are incredible. They are funny. They love music. They have incredible rhythm.They love one another. They high five friends and family and strangers alike. There is nothing about Casey and Connor that is not magical.

They are my miracle men.

I am proud of them everyday. I love them more than I thought I could ever love another person- or people. I would not change anything about them.

I say all that because there are times when I do feel a little sad. I mentioned before my group of mom friends that were all pregnant at the same time. They all talk about what their kids are doing and I feel left behind, out of the loop- alone. I love to read about their children and their children's milestones but there are times when I read those things and there is this little nagging in me that says, 'I want those experience.' It may actually be worse with my friends I see in person who have babies that are younger than my miracle men and I see in real time how much these other babies do that the guys don't. Yet.

I know comparing kids is not the way to go and I also know that each child is different and comparing C&C to their typical peers is not ideal but I can not help myself.

I wish I could explain how much I long to hear the words mommy, daddy, and I love you. I wish I could tell you how much it hurts to see babies younger than my boys up and walking or doing somersaults. I wish that I could explain the deep and difficult to ignore feelings of jealousy I have when someone posts a story about the amazingly funny thing their child said. I get impatient. I don't mean to and I do try to keep myself in check because I never want my boys to think for one millisecond that they aren't good enough or I wish that they were different. They are better than good enough and they are PERFECT as they are but as a mother, I want to see milestones. I love the scenic route. I really and truly do. However, there are times the turnpike is faster and you just want to get where you're going.

The true problem lies in me. I have trouble admitting sometimes that this is a tough journey for me. I don't bemoan my life. I am truly and profoundly grateful for every single blessing in my life. God has given me a beautiful family, a solid faith, health, love, happiness, friendship and so much more. But to be perfectly honest- there are times it's rough. I worry over all the what ifs of the future. I wonder if the boys will be happy. I wonder if they will have friends, be treated kindly, fall in love. I worry kids will pick on them or that they will have a teacher who just doesn't want to deal with them. I worry about far worse things that I won't write about.

I know that no child's future is certain but the reality is- there are a lot more gray areas in my sons' lives than there are in a child born without disabilities. The biggest obstacle that my sons and others with DS face is the stigma that comes from the label DOWN SYNDROME. People who don't know better assume the worst or they believe in the inaccurate portrayals of people with disabilities that Hollywood spews about. It's getting harder for me to decide who to tell about C&C if they have never met them. (For the record- I feel utterly disgusted with myself for admitting this)

This came up recently. My husband and I just joined the Natatorium- it's our community rec and aquatic center. There is a child care facility in the Nat for children ages 1 and up for when parents are working out. On the information sheet all parents are required to fill out there is a question about any disabilities your child has. I debated putting anything down. It went something like this:
Me: does it really matter? I don't want them to be judged because I wrote DS on a stupid form. I'm not writing anything.
Me part 2: What if something happened to the boys and they are not covered because you didn't disclose they have DS?
Me: Well, I am not ashamed they have DS why not just tell the caregivers? That way- if there are questions you can use it to educate them.
Me: What if they are not as nice or as welcoming to the boys because they know and they are ignorant about DS?
Me: This is stupid, just write it. Be proud of your kids. Let them shine and show people what that bonus 21st is all about.

In the end I wrote this: Casey and Connor have Down Syndrome. They have no medical issues that will affect their care. They are a little delayed in gross motor skills. There are NO SPECIAL REQUIREMENTS for their care.

I hate what I wrote but it's straightforward.

At the end of the day, Casey and Connor will be who they are and accomplish what they accomplish. I can't change it I can only support, encourage and gently nudge them to be the absolute best they can be.

Here's one more lesson I am learning. Casey and Connor are the ones who are perfect in our family. I am the flawed one.

They are making me into a better version of me. There are certain things that are harder to change about me.

They are patient teachers though. I will continue to strive to be the very best mother and Meghan I can be.


Farrah said...

They are perfect. the world is flawed <3

Sandra said...

Meghan, they are perfect...and you are not flawed. You have hurdles that a lot of people don't have. But anyone can look at pictures and see how loved the boys are, and how happy they make everyone....XOXO

Sandra said...

I agree with Farrah. They are perfect. And you are not all. Love you mama!! XOXO

Amanda said...

This is exactly what I wanted to write on my own blog - word for word. Our kiddos are the ones who are perfect and we are the ones who need work. I feel you on every point; the love, the jealousy, the awe. Just know you are not alone mama. Our kiddos are the ones who will go on to do great things. Thank you for putting the thoughts in my heart into words. <3

Brenda said...

I know exactly how you feel, However I want to urge you to get used to talking about your boys having DS. It gets easier. The ONE really bad experience we had was when my husband signed Desi (now 7 w/DS) up for swim lessons and didn't tell any one she has DS. I was not happy with him at all. She was put into a regular class with regular kids, and ALL those parents dropped out because my daughter needed extra attention. We needed to work with an instructor, and have a smaller class. As she gets older, I have to explain to more and more children what DS is. This is simply a fact of life. One thing that rocks, is that we attract people. I rarely have negative experiences when we are out and about. I think if one person were to be mean to us the crowd would turn on that person. Seriously, my daughter has way more friends that I ever dreamed. Every time we go somewhere, I have people and children who NEED to say Hi to Desi.

Jami Fergie said...

I couldn't have said it any better. You took the words right out of my mouth. :)

Cara Coleman said...

This read was so incredible. It was as if I were writing it myself. My twin girls with DS were 2 years old this past Thursday and I struggle with the exact things that you wrote in this blog! WOW....just WOW!

Veronica Lee said...

Hi! Stopping by from MBC. Great blog!

Have a nice day!