Hi! My name is Danielle Coleman. I am the proud mother of a beautiful nearly three-year-old girl named Myrdin Rose.
She, like most two-year-olds, is fiercely independent. She is a definite Daddy’s girl, but can always be counted on to snuggle up to Mama at bedtime. She loves dancing and singing, being outside in the fresh air, and playing with her dolls or stuffed dog. She “reads” more books in a day than I can read in a month, and no matter how many times I play it, she never ceases to ask each day for her Little Einstein’s video.
Myrdin lights up my world and gives me new reasons to smile every day.
She is my first child, and one I would never trade. But she is not the child I expected.
After a completely uneventful pregnancy, and a quick, easy labor and delivery, my daughter was born with a full head of dark hair, ten fingers, ten toes, and an extra 21st chromosome.
We first learned she had Down syndrome about an hour after her birth, following some hushed conversations among the doctors, in which I overheard one ask another if the ultrasound had “shown anything.” My instant thought was, “What’s wrong with my baby?” Soon, a doctor told us that they suspected she had trisomy 21 (which is the clinical term for the genetic condition we know as Down syndrome).
Unfortunately, we didn’t get a whole lot of information on what this meant for our child.
What was supposed to be the happiest day of our life turned into a scary, exhausting week in the NICU. We kept the diagnosis from most of our family until it was confirmed through a genetic test, six days after she was born. Through that time, we had very little access to information. The doctors gave us a few books and some pamphlets that the hospital carried, but they were full of terrifying statistics about increased rates of congenital heart defects, leukemia, gastrointestinal issues, and more horrifying conditions we couldn’t imagine having to deal with.
We even got oh-so-encouraging statements from doctors along the lines of, “Don’t worry. With medical and societal advances these days, many of these kids can grow up to live on their own in a group home someday.”
I grieved.
I grieved for the “normal” baby I had “lost” when this one was born. I grieved for the little baby hooked up to all those machines, my baby girl, who may have a future of hospitals and hand-holding ahead of her. And I grieved for my husband and myself, as we struggled through the week, loving our daughter immensely, but feeling lost, terrified, and alone.
When we finally took her home, I got online and I started researching everything I could.
I joined special-needs mom’s group forums, signed up for newsletters and blog feeds, bookmarked dozens of sites, read book reviews and then purchased those I thought would help me become more informed. I plugged into the birth-to-three early intervention program that offered in-home therapies to help special-needs children achieve their potential.
And I learned, over time, that the scary clinical statistics I received from the hospital and from Myrdin’s doctor did not necessarily compare with the stories I heard from parents of children with Down syndrome.
And they didn’t quite mesh with what I saw in front of me each day as my daughter grew and learned and progressed.
In retrospect, I am glad the tests we had while I was pregnant did not reveal the diagnosis. I would have been so sad, and so afraid, not knowing what life would be like for my baby. I would have done all my research before she was ever born, but I wouldn’t have had this amazing baby girl growing up strong and healthy right before my eyes, joyfully experiencing new things each and every day, just like every other child does, and countering all of the scary clinical data available to me.
I was determined to be my daughter’s best advocate.
But I had to scramble for months and sort through an overwhelming amount of information in order to feel like I knew what I needed to know to help my baby become the best version of herself that she can possibly be. And I focused on information I didn’t need at the time, and overlooked things I shouldn’t have.
I’m still learning, because as my daughter grows, she faces new issues and new challenges, and by default so do I.
But I am confident now that I can locate and tap into the resources I will need in each new stage. I wasn’t confident about that when she was born, and I wouldn’t even say that it was true then. I don’t feel like the resources new parents need are readily available, or that new parents of a child with Down syndrome are receiving the information they need at the time of the diagnosis. I aim to change that, consolidating the needed information into one set of definitive resources that parents and families can turn to for comfort and confidence right from the start.
Ultimately, I want to be able to put a packet of information and resources into the hands of every parent and family member who receives a diagnosis of Down syndrome for their loved one.
This blog is a partly my journey, and partly yours. It is a collection of the stories, facts, and resources that parents of children with Down syndrome need to help their child get the best start in life, and progress as their very best selves. It is always evolving, as our children are.
Please feel free to contact me with any comments, concerns, or suggestions you may have. I’m happy to be able to help.
And congratulations on the joy of the beautiful children in your life!