Walk On, Team Micah

There were a lot of overwhelming emotions involved when Micah was born. The high of seeing your newborn for the first time is always euphoric, but that was closely followed by the news that he was being tested for Down syndrome. It was at that point that my world was turned upside down and shaken. I had no idea what Down syndrome really involved, how it would impact our lives, what it would mean for Micah, or how to deal with the diagnosis on a day-to-day basis. The first week was one of fear, heartache, confusion, and since I'm being completely honest here, disappointment. Through all that, the undercurrent that held us together was love. No matter what they told us about our newest son, that didn't change the fact that we loved him. And I was extremely grateful that he was healthy enough for me to cradle in my arms while I cried my way through a box of kleenex per hour. I couldn't imagine being sent home from the hospital childless, whether that child was in the NICU, or worse. The closeness of my newborn was a balm to my soul. There's nothing like looking at the face of a sleeping child, knowing that he's yours to keep forever and ever. I had that. And I loved him. It didn't matter what else we learned in the weeks and years to come. We'd take it all, internalize it, and love our son even more for it.

And yet, it wasn't that easy. Sometimes, while trying to educate myself through online research or book reading, I would come across something that would take me back to the beginning, with the pediatrician sitting across the room from me, his folded newspaper under his arm, telling me that my son had a disability. One that would remain with him for a lifetime. One that would impact every aspect of his life and ours. Those raw emotions would resurface and it was then that I realized the extent of the emotional injury. Two months after his diagnosis, or half a year, or three years later, that hurt would come back, still raw and painful. It took years for that wound to heal to the point of being a scar. And there are still times when, if hit just so, that scar will throb with the memory of the pain.

There were so many things that we were told just after Micah was born. We needed to make an appointment at the Down Syndrome Center. We should call Early Intervention. Here is the number for Parent to Parent. You'll want to see a cardiac specialist as soon as possible. He failed the newborn hearing screening, please schedule with the pediatric ENT to retest. Read over this packet of information. Keep the number for Special Olympics, you'll want that for when he's older, but he'll need his c-spine scans done before he can compete. There were so many more, too. It was overwhelming, and yet we muddled through because we needed to. We also dealt with newborn vaccines and wellchecks, pneumonia at six weeks of age and consequential breathing problems as a result. He had his adenoids removed at 4 months of age because they posed a risk of blocking his airways when he wasn't struggling to breathe. You'll understand, then, that optional things were just that. The Buddy Walk fell under that category.

The Buddy Walk is the annual Down syndrome world's awareness program. Families who have the privilege of parenting a child with DS get together and walk. Each family raises funds, gathers friends, and walks for the cause. Not only is it an awareness program for outsiders, it's the best support group ever for families living in this strange and wonderful world that we've all somehow found ourselves in.

The first year, my head told me that the Buddy Walk would be a wonderful thing. I could connect with others, and learn so much from them. I could see older children and get a clearer picture of how Micah might grow and learn through the years. I could talk to someone who understands everything. But my heart said no. That deep emotional wound was still a gaping hole and there was no way that I wanted to be that vulnerable in public. Those people would know.

The next year, much to my shock, I felt the same way. That wound was so very deep. After that we were heavily involved with the corn maze and the Buddy Walk just wasn't something that ranked high on my priority list. Every year, in the spring, I planted an idea in the back of my mind that I should attend that year, but once October came it didn't happen. Micah is six years old this year. This is the seventh year that I've known about the Buddy Walk. This is the year that I'll attend.

This year, I am ready to make our debut into the world of those who will understand the most. I look forward to meeting hundreds of other families who have found themselves in a world that they never planned to wak up in. I will be proud to be counted among their numbers.

Pittsburgh's 15th annual Buddy Walk is October 17th. I want our first Walk to be a resounding success on all fronts. This is where my friends can help. While nobody can control the weather or the kids' attitudes on the actual day of the Walk, we can all help to raise funds for Downs awareness. I love that you all love Micah, and on his behalf I'd like you to consider making a donation for Team Micah via the link on my sidebar. If we can help raise funds to educate others, to help with inclusion of those with Downs, to help new parents realize that they are not alone in this strange new world, the day will be successful for everyone.


mommaof4wife2r said...

i am soooo IN! what a fab post....i just love to see where you have been and where you are going. and micah has become soooo much! oh, please, let us help sponsor you in the buddy walk!!! it would be such an honor!

mommaof4wife2r said...

by the way...done! yeah!!!!

BeautifulWreck said...

Fantastic post. How can you be sponsored?

Brandie said...

See ya there!! I went when Goldie was 6 months old because I felt like it was what I was supposed to do. I skipped it last year and was just thinking today that maybe we would go this year. Hubby has to work so it will be me and the girls.

I have to admit for at least the first year after Goldie was born, I didn't want to talk to or meet older children w/ DS or their parents. I was afraid. I knew I could handle today and tomorrow and didn't want to think any further ahead than that. Heck, I still have many days that I can't think past the next meal!

Anonymous said...

Go Karen and Team Micah! I am so happy to hear that you are doing this, and would be proud to sponsor you.

I think I know just a little bit how you feel . . . as much as I want to do something (anything) to honor Quinn and to surround myself with other people who have been in my shoes, I just can't - I am scared. Thank you for making me hopeful that someday I just might be able to.

HalfAsstic.com said...

Gotcha, Karen! I will be back to do it at the first of September!
That was very well done and worded. I am thrilled to know you and team Micah will be walking.

My name is Sarah said...

This is Joyce, Darn I just checked my calendar thinking this would be a great time to meet the famous little man but it is parents weekend(our last one) at Ohio State, so I guess we will have to wait until next year. btw, we did our first walk with Sarah when she was nineteen, so you are way ahead of us. Beautiful post today. I hope you have a wonderful walk.

Karen Deborah said...

Wow this is great. I'll be back with a check when I get back to work. Which I hope will be soon.

I find the most powerful part of this post your gratitude to have the baby and have him alive in your arms. I know there are many parents who hear such a grim prognosis that they would be happy if all it would be is DS. You have a healthy beautiful loving child, yeah I know he poops in the driveway and pees in the store but you know, no body is perfect.

JennyH said...

You'll love it. Kansas City has one of the biggest Buddy walks. This year it will be called Step Up for Down syndrome though. We always have fun going to them.

Now, hoping the weather holds up for you and for us (oct 24)!

Michelle said...

I'm happy for you that you decided to take the plunge and go! I'm sure you're going to love it and meet so many other families! This year will be our 7th year going - we went to the first one when Kayla was just shy of 3 months old.