Looking back on 2 years with Down Syndrome
I cannot believe he is 2. I mean it, somebody pinch me. Have we only been on this path for 2 years now? Looking back so much has happened. It seems like longer, yet at times so short of a time I have spent loving this little guy and so much has happened in the last 2 years. How about a quick recap?
December 2016 we had an amazing homebirth with our 6th child, Cedar. At birth my husband and I noticed some unique characteristics we had not seen in our other 5 children. My world felt like it was caving in on me. Our pediatrician saw us when Cedar was 2 days old and she confirmed that it did appear he had Down Syndrome. When Cedar was 3 days old he was admitted to the NICU for elevated bilirubin levels, he was jaundiced as has happened with several of our other children.
You can read about that wild experience here.
While we were in the NICU God used a beautiful young lady who was doing rounds with the physicians to stop and share the poem “Welcome to Holland” with me. That was gamechanger. I clung to that poem after she read it to me, the tears streaming, but it gave me hope.
We then went home after our short NICU stay and tried to start our new normal, we also got our genetic testing confirmed, Cedar had standard Trisomy 21.
2 WEEKS OLD
When Cedar was 2 weeks old I sat down at my computer to write out a post for my then homesteading blog and this is what came out…
That post is also how we shared the news with almost everyone with the exception of immediate family. That was my moment of acceptance. I also realized I had so much more to say if I was going to help change the way Down Syndrome was viewed and help make it so that no other mama felt as alone and uninformed as I did when Cedar was born. I also realized that my homesteading blog was not going to be the place to do that as the audience was all wrong. I began the thought process for creating a whole new blog and what I wanted that to look like, I prayed a lot too.
That poem kept coming back the forefront of my mind though. I wanted everyone to read “Welcome to Holland”
I thought on how I might create a piece of jewelry that would somehow tie into the poem and that I could give away to new moms on this path and the creative process began. I realized though that in order to share this poem, I would need the author’s permission. Unfortunately, Ms. Emily Perl Kingsley who is well into her 70’s at this time is not on any social media which made it nearly impossible to locate her. This is where God comes in, I had hit so many walls trying to find her when out of no where, my daughter did some digging online and found an obscure bit of info that led us to her. I actually reached out to her via telephone and left her a message figuring I would never hear from her, she emailed less than 24 hours later and gave me permission to use her poem.
2 months old
I was able to create a piece of jewelry that could be given to new moms and I was able to use Emily’s poem. I provided these to my local NICU’s as well as our local early intervention programs, I had no idea how to reach further than that.
3 months old
We launched this blog. The desire I had in launching this blog was that other moms who began that dreaded Google search hoping for information would find positive elements and breadcrumbs of hope. I wanted to share Cedar to help people see that this life was not what I feared it was going to be. But, I didn’t want to just have a site and blog with my son, no, that was too narrow of a view into Down Syndrome. I began reaching out and asking others who were ahead of me on the path to share their stories. As I published these stories on the blog I was healing as well. Reading that my emotions, in the beginning, were so similar to so many other moms made me feel somehow less alone.
The most beautiful thing to me about the blog was the sheer number of messages I was getting in my email as well as on social media. Other new moms were finding the blog and reading information, then telling me that it was a help to them.
5 months old
As I was starting to look for books for Cedar I found that there were very few that featured children with Down Syndrome. Primarily I wanted real photographs as some of the depictions that were drawn were not favorable in my mind. I reached out to a photographer friend and the process began when I invited 10 children to our farm when Cedar was just 5 months old and we did a photo shoot. Though the book wouldn’t be released for another 9 months, the ball was rolling.
Our blog was ranked #1 in Down Syndrome sites by Feedspot
The traffic began rising which means more new moms were finding hope.
Our television debut to launch our children’s book on World Down Syndrome day 2018!
We did it, we launched a children’s book and it was well received, now there is at least one more book available to children with Down Syndrome that shows others just like them.
We officially launched an awareness jewelry line. Remember that first piece that I mentioned, the Touring Holland one? Well that one is still given away freely to new moms but we also launched a whole line of beautiful pieces meant to be proudly worn in order to spark conversation.
I was able to attend my first ever DSDN (Down Syndrome Diagnosis Network) Rockin’ Mom’s Retreat and lead a breakout session on blogging to spread awareness. It was so neat to meet over 400 other moms in Phoenix, Arizona to connect in person and all because of an extra chromosome. The highlight was when moms from across the nation helped assemble over 750 of our Touring Holland necklaces to provide as free welcome gifts to new moms contacting the DSDN over the next 12 months.
I was privileged to join 4 other moms to create a whole new team at our local level and local Down Syndrome Association. Our sole purpose is to welcome other new moms locally who have received a Down Syndrome diagnosis.
And that is what has happened in the last 2 years since I first learned Cedar had Down Syndrome.
Read more: cedarsstory.com