The day my son & I were born

We knew you were destined for greatness. We knew you marched to the beat of your own drummer. We just knew. What we didn't know was how great. We didn't know that Down syndrome wasn't going to make one iota of difference in your greatness.

It started when I was 13 weeks pregnant with you. Rob, Meredith & I went in for a routine check up on things. We told Meredith how exciting it was going to be for her to hear her baby brother or sister for the first time. We figured it was going to be so exciting for her to finally make a connection that there was a baby in mommy's belly. Only we didn't hear the baby's heartbeat. My midwife searched & searched, but alas.... it was nowhere to be found. We were immediately sent to Newton Hospital for an emergency ultrasound. Guess what?! Not only was there a baby in there, but it has a heartbeat. You were laying in such a way that the doopler could not pick you up. Now.... would she give us a guess as to whether Meredith would have a brother or sister? She did. How could she not? It was pretty unmistakable that we were having a boy.

On that day, we knew.... We just knew that you were going to be great. We knew you were going to give us a run for our money.

When we found out that you have Down syndrome, we were devastated. We didn't know which end was up. Our perception of the "illness" was not favorable. Heck.... I only knew one person with it and he was not what I'd consider a good model for what it could mean.

We learned all we could, but nothing could prepare us the way your birth could. We swore we'd done this just 2 years prior. We swore that raising a little boy couldn't be harder than raising a a girl.... except there was one more factor. You had a boo boo in your heart. It didn't matter though. Once you were here none of it mattered.

The first time I held you in my arms, I could not have fallen any more in love with you. I could not have wanted any little boy more. It wouldn't have mattered whether you had 3 purple heads. What mattered was that you were mine and you needed me.

There were so many people so eager to see you. To see your little face and little fingers & toes. There were so many people who hadn't even met me, that were eager to meet you. You were born a star! So many people were pulling for you to show everyone that the boo boo in your heart and your extra chromosome wouldn't slow you down. And you made everyone eat their words.

You taught me right from the beginning that I couldn't compare you to anyone else with Down syndrome. For that matter.... we couldn't compare you to anyone. I'm pretty sure you taught us all that lesson.

I looked for signs of Down syndrome in everything. "Oooooohhhh look at his tongue. Is it sticking out to far?" Or.... "Hmmmm what do you see in the eyes?" "How about the ears?" The one thing I remember looking for was a flat face and you didn't have that. You were so animated. All of your features looked like something from an Anne Geddes picture. I relished in the fact that you looked like us. You looked like Meredith. I was so happy.

When I was wheeled up to my room, I made sure that I was brought in to see you first. I wasn't going anywhere without checking on you in the NICU. I wanted to make sure that you were ok. And you were. We held you in our arms and you let us know that everything was right with the world. You immediately made me feel at peace.  There is no greater feeling in the world than to feel your precious little baby in your ams and know that no matter what, everything will be ok. And it is ok.

When we brought you home & you met Meredith, we knew there was an instant bond that no one could break. We knew that the love she felt for you was just as strong as the love we felt for you. Especially when she shared her beloved stuffies with you.

As you grew and showed us how strong you were, we were always impressed. Always impressed with the many things you were capable of doing. You always knew when we needed to be lifted up and showed us a new trick or mastered one. You made Meredith giggle and gave her an opportunity to teach you her world. It has always been so endearing to watch her be your guide.

 

When it came time for your surgery we were all so scared. Daddy & I didn't know how we'd get through it. There is no way in the world to prepare yourself for the many "what ifs" that can come with open heart surgery. Handing you to the nurse was the toughest thing I have ever had to do. As I held you tight, I knew you trusted me. I knew that there was a chance I'd never see you again and your last moments wouldn't be with me. Until that moment I had been able to deny that. I wouldn't rest easy until you were safely back in my arms. I wouldn't rest easy until you were snuggled close and smiling your trusting smile. Having you back in my arms after your surgery was almost to much for me to bare. As soon as I knew you were safe and didn't need to go back to the operating room, I allowed myself to feel all of the emotions I had denied up until that time. I immediately felt fear. I felt love and happiness that your boo boo would finally be fixed. I felt relief that we wouldn't have to live under this veil of "what ifs" anymore. When I got home that night, I hugged Meredith more tightly than I ever had before. I wanted her to feel the intense amount of love & relief that we all felt. I couldn't imagine ever losing either of you and now I didn't have to.

As you've grown into such a little boy, taking on countless adventures.... you've shown us that your extra chromosome has only made you more determined to show us that you have your own way, Down syndrome or not.You have taught us that you have to master every step of the process. Not just show us a finished project. And w have learned to relish in your accomplishments. No matter how small others may think they are.

You taught us that it doesn't matter that we just did "this" with Meredith. We still have no idea what we're doing, but we do it with love in our hearts.

The way you explore your world is actually quite spectacular. The way you figure things out and figure out how they work and what they do is remarkable. Now... I have no idea if your dissection of life is due to being genetically enhanced or not and at this point I don't care. You are a rock star!

With each skill you master and with each step you take, you teach us something. You teach us to really take our time. You teach us daily that everything has steps and that every step is important. For that we thank you.

You have shown us how "typical" you really are. Especially with your love of tormenting your sister. We knew that this was going to happen eventually. We just didn't know you were going to start so early. I find it amusing... Meredith..... not so much. We also love that you love her so much. And we know she loves you. Sometimes I catch her playing with you like you're her own doll. She plays dr and you're always the patient she needs to get better. She remembers when you had a boo boo in your heart and always tells me that you're "all better now." She also has her own ways of getting you back. When we have to goto a dr's office, she always makes sure it's for you and not for her. It's like her way of saying "Ha Ha. Next time don't pick on me and I won't send you to the dr."

You always continue to show us just how strong & strong willed you are. You show us that as soon as we start to worry about something, we didn't need to worry after all. I always worry that I'm not doing enough for you. Or that I'm not finding the right balance. I worry that I'm not a good enough mommy for you & for Meredith, but you both always show me that you think I am.

Because of you, all of us venture just a little bit further from our comfort zones. Because of you we take more risks & we challenge our every day. We have made wonderful new friends that we treasure. We Thank God every single day for trusting us to raise you. We were once told that God doesn't make mistakes and we didn't believe them when we found out that you had Down syndrome, but it's true. God made you who you are and he didn't make any mistakes. You are perfect! 

We love you Sean. We thank you for showing us that there are so many "normals." We are proud of you for doing things your special way and we hope you continue to do it that way. You have given us a new purpose in life. We hope that the next year will be just as exciting. Happy 1st birthday my little man.









P.S. Please excuse the Kiddie Kandid proofs. We haven't gotten our package prints yet. I think they did a fabulous job and the photographer kept the kids happy.

So at 1 year old what can Sean do & what are his stats?   

• Sean can roll around all over the place. He is now a rolling fool
• He can pretend to drink from a cup
• Pretend to eat with a fork
• Almost pull to standing
• Almost get up on all 4's consistently
• Almost put himself into sitting
• Melt your heart with his smile
• Give hugs & kisses
• Stand on his own when holding onto something

These things are in addition to the things he already knows how to do. 

• Cardiology..... Graduated to once a year visits!!! 
• ENT.... Hearing test = Passed and no other issues
• Ortho.... Nothing wrong with his bones
• At 1 year old Sean weighs 17lbs, 14 oz and is 29.5 inches tall. By the way.... Meredith was the same height at 1 year old. 
• Assessments..... Fine & Visual Motor Skills, he scored average for his age. Speech.... 9 mos for expressive language and 11 mos for receptive language, Cognitive was a slight delay, but closer to average than delayed. If that makes any sense. And I don't have the scores for gross motor skills. I do know that he is pretty delayed compared to typical kids, but right on track for a kid with Down syndrome.