Happy October! To all our extra amazing friends, Happy Down Syndrome Awareness Month!
This month has all the feels to mommas like me. We celebrate this month with hope, we take this time to teach others who are not on this journey, we count our blessings and we pray that this month opens the eyes of our peers, somehow. May this be the month that someone new accepts my son and his extra chromosome; awareness is good, acceptance is great. This month is the one month of the year that we, families on this journey, all come together to raise our voices and shout the worth of our friends and family born with Down syndrome. In a sea of October pink or orange and black, the yellow and the blue can also be found, if you look for it. If you’re reading this, you will likely see more out there than you expected to.
This is my 5th year to celebrate this Down Syndrome Awareness Month with Hudson. I have taken my role as his mom very seriously and I have been committed to providing everything he needs, with very little help. I would love to say that I have felt a change in the way the world sees my son and that my advocacy has brought much needed change for his future. The reality is that some changes have been seen, but mostly, our needs fall on deaf ears. Unless you love someone with Down syndrome, these challenges we face are very lonely. My son’s extra chromosome make some people feel uncomfortable or he gets used as a cutdown or the butt of a joke. Not any of this is deserved or provoked.
On this journey, I have met both mommas who are strong and not easily affected by the cruel world and mommas that have huge chips on their shoulders from the weight they carry. I always said I would rise above the nasty noise and and remain a steel pillar for my son. I am committed to this; you can’t break me. However, I think the better question is why would anyone want to break a mom who is constantly adjusting to her new normal? Shouldn’t we be offering a hand of help? If the world was more accepting, then maybe, just maybe, you’d see more beautiful babies being born with Down syndrome. It’s the lack of acceptance that places fear on those getting this diagnosis.
A couple of months ago, I was having coffee with two of my favorite go-getters, Caitlin Kelly and Susan Putnam. Caitlin has been all over the news lately for bringing Mississippi our first Safe Haven Baby Box to Long Beach. What a wonderful thing she fought for. This is bipartisan legislation at its finest, a win for all. If a baby is born, we must protect this human life, period! This applies to every life; we must protect and cherish it. I want to be clear, ALL HUMAN LIFE. Inside the door, where a mom safely places a child, she will have a bag of information she can take. In this orange bag is resources and needed information to provide her with answers. This decision wasn’t one she took lightly, so Mississippi extended the time of her parental rights to 45 days for our state. I raised the question about babies born with Down syndrome and this being a reason for her decision, and while I don’t have an answer on how often this is the case, it did bring up a missing piece to the orange bag. Caitlin immediately asked if I would create an educational piece about Down syndrome for the baby box. YES!
At first, the amount of information I wanted to share was overwhelming. If it was overwhelming to me, then it would be to someone who is scared. It was a task that had challenges, but just as I promised to be a steel pillar for Hudson, this was a task I was proud to do. Offering help and support was needed, should she decide to raise this child; also, her knowing that her baby would need extra support and that we do have families that would love the opportunity to adopt a baby with Down syndrome was an important part. My favorite line in my letter to mom: “Your baby is just as adoptable as any other baby.” It is sad that this needs to be said, but only because not every family out there would adopt a baby with challenges, no judgement; I, myself, never thought of raising a child with special needs until I was chosen. No special place for me in Heaven, I am being the best parent I can be to the gifts I was given. Actually, I am already receiving the benefits of the laughter and love shared today and every day. It’s my mission to share this. Through birth or adoption, gifts find us.
This brochure started with a letter, as mentioned above, to let this mom know the words I wish I had been told. I knew my son was a gift because of my age and my need for in vitro 10 years earlier, I knew because of the fun way we discovered we were pregnant again, I knew we were lucky all along, but not everyone has or feels that. The words she needs to hear, should she find herself at this box, is that she and her baby are loved. She unselfishly chose life. She did nothing wrong, the extra chromosome was present at conception. And she is not alone no matter her choice; if she wants to keep her baby, there are amazing resources. On the other hand, if she surrenders her baby, she needs to be assured that her baby is wanted and will be loved.
Here is the brochure I created:
Recently, I was talking to a new mom on this journey. Her experience was hard to hear and absolutely hard to understand. In 2023, she was so belittled by a genetics doctor that she said, “she felt smaller than a grain of rice”. It was because of the questions thrown her way that she felt like her baby being born with Down syndrome was her fault. Did she smoke during pregnancy? Did she do drugs? Did she get second-hand smoke? Seriously, this is garbage. Anyone, especially a doctor, should know that this miracle life was created at conception. The guilt that was blanketed on this new mom is unforgivable; she lost precious time because of reliving her every move to think whether she did anything wrong. Her answers were “no” to all the questions, but she still started overthinking her every move. This is why a brochure in the baby box is a must, if this line of questioning still exists. Then, it is plausible that mom has been met with some misguided questions. The details of this scenario shared took place in a different state, not here in Mississippi.
This article is definitely heavier than what I intended to write, but it is to share that we still face many struggles on this journey. Down Syndrome Awareness Month is a month to celebrate, but also should be a time to teach. Just last month, my daughters Instagram begot a troll, who then used the platform to be cruel. This troll made the deliberate remarks with a “knife and twist” approach. However, the remark against me, in a photo on her page, was about an extra chromosome. It read this, “Looks like you got some extra chromosomes too ”…. Funny, I didn’t see this as a cut or a knock, this is a truth I already know. When you see me, you should see Down syndrome or I am not advocating enough. You should see me in Hudson and Hudson in me. What you intended to hurt me with, actually, shows your ignorance. I am not hurt, I am delighted that my extra can be seen. If this troll would spend time with Hudson, they would learn that his extra chromosome is a gift, one we should all experience in our lives in some way. If this person did, they couldn’t write something like this as an intended jab.
Let’s wrap this one up with something extra beautiful. I was honored to attend Gabrielle’s Trendsetters Fashion Show, last March. The Trendsetters rocked the runway with beautiful couture fashions and for a good cause. The Trendsetters had 20 models and even featured one model, Bailee, with Down syndrome. She captivated the audience; Bailee is a star and she brought fun to all with her contagious smile and laughter. Each year, Gabrielle’s Trendsetters have the opportunity to choose the charity they wish to raise awareness and money for; this year they selected Gulf Coast Down Syndrome Society. Why? Because many of the Trendsetters have a friendship with Bailee and wanted to show just how much they love her. One of the models said that she and Bailee have been best friends since second grade. Choosing GCDSS brought them a sense of loyalty and pride to the lifelong friendships they’d created. Last month I had the privilege to join the Trendsetters to see just how much they raised for our buddies. Drumroll………… OVER $5000! I was invited to be there for the check presentation. When Ms. Wendy turned around with that check, all the girls completely lit up with love for this accomplishment. I flooded the room with tears. Since the fashion show in March, new recruits have joined the Trendsetters and they have almost 30 girls now… that is 30 young ladies in high school who are learning and will one day be teachers; not by being parents to a person with Down syndrome, but being a best friend to a person with Down syndrome. The dollar amount is so impressive, but the love to achieve that is what overwhelmingly grabbed my attention. So I seized this moment, I shared with the girls my heart and my life journey. What they see, today, as a huge accomplishment, I see as a future memory of how they became who they are in their future selves. I can see God all throughout my life and the things I did when I was younger were all doors to a greater path that only He knew. These are huge steps for the young girls, for us as a community, and for the future of how we move “awareness” to “acceptance".
“Acceptable” is not acceptance, we are there, at the word “acceptable”. Life has made concessions for “awareness” to become “acceptable”… I want full acceptance for my son. I want to feel as if we don’t always have to include his diagnosis in every conversation, that I don’t have to prove why he can or can’t do something. I once had to show his sweet face on video to prove he has an extra chromosome. We all have limits and some achieve greater things than others; not one person is demanded to give the reasons why, unless a disability is present. Then, we spend our days filling out papers that talk about everything our child can’t do, instead of sharing all the things they CAN do. When anyone writes a resume, they get the opportunity to point out all the good they have to offer and their accomplishments. When you are a parent to a child with a disability, you get bombarded with paperwork that reminds you of just how disabled your child is. Can’t we be better than that? Can’t we try and be like the Trendsetters and step up with love, not be a troll that wants to hurt without reason. For the mom on this journey or for the mom who finds herself at the baby box: the life you created is beautiful and has value and purpose. Wherever you find yourself on this journey, may people offer you EXTRA hope and EXTRA healing.
EXTRA EXTRA
Please join us in celebrating Down Syndrome Awareness Month. You can wear blue and yellow, rock some crazy socks, find a local Buddy Walk, support a fundraiser, sign up for a NDSS newsletter, join your local Down syndrome groups, learn about people with Down syndrome AND celebrate WITH them. You’ll never find a better dance partner than a buddy with Down syndrome.
