Every night when I am going to bed, I sneak into each of my children’s rooms and kiss them goodnight and say thank you.  Now that Colin has a twin bed, I might sneak in to lay with him for a minute and whisper into his ear “you are so special and I am so lucky”.

…and I really am.

However, the day he was born and we found out that he had Down Syndrome we didn’t initially feel we were so lucky.  Our journey into the world of Down Syndrome hasn’t necessarily been an easy one, but we wouldn’t trade it for anything.

Colin was going to be our first baby and my husband Chris and I were so excited.  We went to all of the doctor’s appointments together, planned and organized.  At our 20 week ultrasound, we were referred to a specialist because of a bright spot on Colin’s heart that they just wanted a level II ultrasound to look at more closely.  We didn’t think anything of it but sat through an extremely long session with a doctor that had a horrible bed side manner who went through explaining the anatomy of the heart only to throw at us that it could be a marker for Down Syndrome.  He slapped a paper on the table, said the only way we would know for sure is through an amnio and asked what we wanted to do.  We turned it down.  When we followed up a bit later, the bright spot (echogenic cardiac focus or calcium deposit) was gone and he said to us “see, your baby doesn’t have Down Syndrome”.

Despite some issues during labor and delivery, Colin quickly joined us and he was the most beautiful baby I had ever seen.  However, as soon as I saw his eyes, I just knew something was different.  They were so distinct.  Because of the craziness surrounding his birth, we are not exactly sure of the time frame, but we remember very shortly after that his pediatrician said to us that they were going to test him for Down Syndrome because he had some traits that were consistent with that diagnosis.  I was stunned and shocked to say the least.  However, since we were completely surrounded by the love and support of our family, we just were like any other proud parent.  I don’t think our “world came crashing down” until exactly a week after Colin was born when it was confirmed that he did have Down Syndrome.  I have never cried as hard as I did that day.
I think we were just really scared of the unknown.  We had so many things running through our heads and unfortunately, we were fast forwarding to far into the future.  Despite living in an emotional fog for days, nothing changed how much we loved Colin.  We just didn’t know how to handle it; what we should tell people, how would we do it, if a stranger stopped us and told us he was cute, did it mean we had to tell them?  There were so many things we just didn’t know then.

But guess what?  We have a little girl now that doesn’t have special needs, and there are many times where we still don’t have the answers.
If I could tell myself something from that time, I would say most importantly that it’s ok to grieve.  I think I felt so guilty for being upset that we were facing this diagnosis because I was scared.  But it’s ok because it IS a loss from something that you expect to be a certain way.  The other thing I would tell myself is to take it one step at a time and slow down.  I thought I needed to have it all figured out right away, but really, it’s just a long journey with many steps.
The hardest thing we face now are some challenges related to Colin’s eating (this has been an issue since day 1) and gaining the strength to walk independently.  We have tried many avenues and have just realized it’s something we need to continue work really hard on.

My FAVORITE thing about this journey is feeling like I am a part of something really big and special that most people will never get to experience in their lifetime.  We have experienced SO MUCH JOY because of Colin that it makes my heart swell.  We are part of a lucky group because each skill that our kids accomplish is so wonderful because they work so hard to get there.  And most especially, our lives are more fulfilled because of the friendships and connections we have made.

If you are just starting on your journey, just love your little baby, and take it one step at a time.  I promise you that each day will get easier.  Welcome to the journey…

Colin’s Mommy, Kelli, blogs about his journey at Love For Colin.