My youngest sister Isannah turns 13 today! Where has the time gone!?!? She is one of the sweetest, most loving individuals you will ever meet. However, she is a little different that your typical 13 year old, Isannah was born with Down Syndrome.
Here is a narrative I wrote regarding growing up with a special needs sibling. This was supposed to be for a friend of my Mom’s daughter’s book, but work was especially crazy around the time it was due and I never got around to submitting it.
It all changed the year I turned thirteen. At first it looked like my family had gone from being almost perfect to a huge joke. Before Isannah was born everything seemed to be perfect. There were four of us, three girls and a boy.
We all got along for the most part. We were active in our Church and local homeschool group. Actually we weren’t just active, we were leaders in both.
The day Isannah was born was very exciting. I remember being at HOME group (one of our homeschool co-ops) and someone told us that they were going to deliver the baby. I was so excited to have another sibling!
I had been eight when my last sister was born and from what I remembered it was AWESOME to have a baby around. I was looking forward to all of the things big sisters get to teach their baby siblings, all the things we were going to share.
When we went to the hospital later that afternoon I could tell something was off. Before we even got out of the car my Dad was rummaging through my Mom’s purse looking for the baby photos of us.
When I asked him why, he just told me that Mom wanted them. But something in his voice told me there was more going on than he was telling.
When I asked him if everything was alright I remember that he got a slightly panicked look in his eye before he calmly responded that everything was fantastic and he couldn’t wait for all of us to meet the new baby.
When we got upstairs to my Mom we were all so excited to see the baby. I remember looking at Isannah for the first time and being super excited. I noticed my Dad covertly had the baby photos to my Mom out of the corner of my eye as I was holding the new baby. After a while when I went to talk with my Mom I asked her why she wanted the photos.
I remember her being a little off when she told me she just wanted to compare Isannah to us as babies. I thought to myself that this is an odd thing to do, but she’s my Mom and wouldn’t she tell me if something was wrong? I remember as we left that night my parents talking about how Isannah was in the “NICU rooming out” program. I’d never heard of this being done.
I don’t actually remember when they told us she had Down Syndrome, I just remember there being A LOT of people in and out of the house. There was a constant stream of therapists around us. Lots of doctors appointments and things to do. At first her delays weren’t really noticeable to me.
I’m sure that my Mom could tell you differently but to me she was just a super happy and loving baby. It got harder as she got older though. I remember a bunch of my friend’s parents also had babies around the time Isannah was born and they were constantly doing new things and moving forward.
This was really hard for me. None of my friends understood what we were going through and they always seemed like they felt sorry for me. During this time I was especially mad at God.
I couldn’t understand why in the world he would condemn such a loving baby to a life of delays. This was before I really got involved in the Down Syndrome community. I was afraid of what I didn’t know and angry that I had to figure out a new normal in life.
Many years later I learned from my Mom that people had berated my parents for RUINING our lives. Both friends and family members could not understand why this had happened and they assumed that mine and my siblings lives would never be the same. They were certainly correct about it, our lives would never be the same again. But this was not a bad thing!
I think because I was the oldest child I probably took Isannah’s diagnosis the hardest. My fear of the unknown caused me to be pretty angry for a few years. It was only through the guidance of my Youth Pastor and a couple of years of counseling that I was able to realize that this was the greatest blessing in my life so far!
Living with a sibling with Down Syndrome is just like living with a typically developing sibling. The only difference is that Isannah would hit her milestones a little later than her peers. This makes any milestone a huge celebration.
She has just as many friends as her peers and she loves them all. She can read, write and is really good at math. She has met a movie star (David DeSanctis from the movie Produce) and a bunch of music stars. She’s met her “whole guy” Scotty McCreery, and loved every moment of it.
Life with a sibling with Down Syndrome can be hard at times but it is very rewarding! Because of Isannah I’ve worked extensively with children with special needs, both babysitting and teaching Theater classes.
I have a greater understanding of the fact that every life deserves a chance to live and thrive. Yes your life may change when you have someone with a special need in it, but let me tell you from firsthand experience it is totally worth it.
Like this song says:
I've heard it saidThat people come into our lives for a reasonBringing something we must learnAnd we are ledTo those who help us most to growIf we let themAnd we help them in return
Well, I don't know if I believe that's trueBut I know I'm who I am todayBecause I knew you...
Like a comet pulled from orbitAs it passes a sunLike a stream that meets a boulderHalfway through the wood
Who can say if I've been changed for the better?But because I knew youI have been changed for good
Happy 13th Isannah! You are such a blessing!
