Sunday, April 30, 2017

Special Olympics Spring Games 2017

I was in the Special Olympics Track and Field Spring Games.

I was in a jumping competition and got a bronze medal.

I did the 50 meter run and got a silver medal.

I was in a softball throw competition and got a silver medal.

I got to see my friends from other schools.

I was even in the newspaper!

I had a great day!

Monday, March 20, 2017

Happy World Down Syndrome Day 2017

It's been almost two years since I've written a blog post. In looking back, I wrote 579 over the first five years of Cooper's life. It was good for me and I got a lot of feedback that the writing was helpful to others. After Kensi was born I took a break. Two kids really IS a game changer! 

You'll notice the 579 posts are no longer live on this blog. Some time a year or so ago I read an article written by an adult with a disability and it made me realize that in some ways I had confused Cooper's story and my own. In my effort to share our journey for the greater good, I realized (in some cases) I was telling a story that is his to tell. So for the time being I took all the blog posts and reverted them to draft mode. 

The other part of my hiatus had to do with the fact that we also moved to Maryland, which was no small feet with new jobs, a new home, new therapists and doctors, a new church, and new friends. Now that the dust has settled (as much as it can with a 7 and 2 year old) I'd like to revisit my old writing and find my voice to tell my story.

We'll see where it goes. Stay tuned!

In the meantime, Happy World Down Syndrome Day! The day is observed on March 21 every year as a global awareness day. It has been officially observed by the United Nations since 2012.

As we celebrate, whether you are wearing lots of socks, blue and yellow, or jeans to honor the day, know that your gesture is meaningful. Think about the world fifty years ago or event twenty. It was not today's world of inclusion, acceptance, and growing programs for individuals with disabilities, but rather a world of limitations and low expectations.

Sometimes raising awareness is more important than raising money. Days like today help create a more accepting world.

I am grateful for this journey. It is a blessed one that is mostly filled with joy, but not always an easy one. It has taught me the true value of a support system. I am grateful for a husband who has walked beside on this journey me from day one. I am grateful for family, friends, church family, and colleagues who support us. And I am grateful that God chose our two amazing children for our lives. 

Thursday, January 13, 2011

On the Night You Were Born

Dear Cooper,

I've often struggle with the best way to tell the story to others about the night you were born (and the days to follow). I think about that night ALL the time I guess because it changed our lives in so many wonderful ways and is the most unexpected day of my life thus far. 

So I decided this was the best way to tell about that tell you. Someday maybe I'll tell the whole story with all the details, but that would take a lot of words. For now I want you to know about the people and the love. That's the part I remember the most.

On August 26, 2009 it was time for you to be born. We had waited and waited and the day was finally here. We were excited and scared and after hours and hours you finally arrived. There were mommy doctors and nurses and baby nurses there and they took you over to a warm place where they could count all your fingers and your toes.

The mommy doctor had to help mommy and I remember thinking it was taking a long time for them to bring you to officially meet us, but this was our first time having a baby and so I figured it was the way it goes. The mommy doctor had to go help another mommy so he took a break in helping your mommy and that's when the baby nurse came over to talk to us.

She told us that that we had a very special baby. She said a lot of things and most of it is a blur, but I remember her saying that you would be a special baby and I remember the mommy nurse who had been with us for hours holding my hand (daddy was too). And when the baby nurse was done talking the mommy nurse reiterated how special you are and how much you would be special in our lives. I asked if I could hold you and apparently that wasn't a good idea until the mommy doctor was done so daddy got to hold you and brought you over to see me.

The mommy doctor came back and then they let me hold you. I don't remember everything, but I remember what I first said to you. "We will love you no matter what." I'm not sure those were the right words or the best words, but those were the words I had at the time. I really wasn't sure what to think or feel or what this all meant, but I knew that no matter what, your daddy and I loved each other and would love you no matter what lie ahead of us...the three of us would figure it out together one day at a time.

You went to the nursery and I remember laying in bed that night staring at the ceiling...all night I think. Lots of thoughts and emotions and I'm not sure I slept at all that night.

The next morning Dr. Magryta came to see us. He's a GREAT baby doctor... and I will never forget him sitting down in the rocking chair, calm and causal and saying in no uncertain terms, as if it was the most certain thing he ever knew...that you would be the coolest kid. He told us that you would do well, be loving, fulfill our lives and surprise us in many ways. He was so absolutely sure that it would all be okay. I don't think he will ever truly realize what that small amount of time and simple words did for your dad and I.

Then the mommy doctor came to visit and check on mommy and said he had heard you were born special and remarked that you would be a super great kid and how cute you were.

In a 12 hour span of time (roughly) a small amount of medical professionals performed a miracle. They set the tone for your life. They helped a set of brand-new parents that didn't expect to have a super special child understand that this was a truly amazing and wonderful blessing they had been chosen for.

You decided it would be a fun idea to turn purple the night before we were supposed to go home. I'll never forget the baby nurse who came in to our room in the middle of the night. The words "if we can stabilize him" and "possibly airlift" are probably the more terrifying phrases I have ever heard. Dad and I laid in the dark in that small hospital bed together arm in arm awaiting the news of whether or not they would fly you to another hospital. I remember telling God that if he would just let you live we would figure all the rest out.

They came back with good news and hooked you up to an oxygen hood and a bunch of wires and for a while we were very worried, but you pulled through and we stayed a while longer. At first you stayed in the nursery. They let us come an visit.

But then you got to come back to the room and stay with us.

Three of the pastors from our church came to see you and meet you and Dr. Jim came and reminded us that they looked forward to having you as a part of youth activities and that he knew you would bring special love to our congregation.

We spent a week at the hospital and the nurses who all adored you began to feel like family.

All of your grandparents came to see you.

And finally it was time to leave and we packed you up and took you directly to the baby heart doctor. Waiting as they did the test felt like FOREVER, but we got the BEST news that your heart was perfect!

People came to visit...and they came and they came and they came and they came. Mommy and daddy didn't cook a meal for 30 straight days. People came to celebrate with us your wonderful new beginning. Everyone wanted to see you and rejoice in our happiness. Everyone wanted you to meet your new friends (their kids). It was very clear from the beginning that in most ways we were just like our friends' families. We had a new baby and that's all that mattered.

So much love we experienced when you were born. Without it I'm sure we would have found our way but because of it we started from day one...the night you were born...and the weeks and months to follow, with the wonderful news that we are the luckiest two people we know. The love was always there, your birth just reminded us how much love we have in our lives.