A few days ago, I was told about an anonymous post to a mother’s group on Facebook from a woman who is eight months pregnant and was just informed the little girl she is carrying has Down Syndrome. I was told because, as the mother of a daughter who has Down Syndrome, I know a thing or two about the fear that is enveloping this young couple, the questions that are flooding their minds and the outlook for their child’s future that is most likely clouded with misinformation, and stereotypical assumptions. Although this woman left no contact information, I couldn’t get her off my mind, so I decided to write her a letter about what it’s like to have your life touched by someone with this extra (special) chromosome.
I know you’re not ready to hear it, and I get it, (I really do), but I need to tell you something important, even knowing full well you’re not yet able to understand. “Congratulations. You’ve won the lottery.” It may be the moment you hold her in your arms or it may be on her first birthday or perhaps sometime in between, but this child of yours that is currently defined in fear will wrap herself around your heart in a way you never dreamed possible.
That said, I’m not afraid to provide a realistic, vulnerable and totally transparent account of what it is like to raise a daughter with Down Syndrome. First and foremost, allow yourself and your husband time to cry, be angry and question, “why us?” Let the tears fall and the fists pound the table — it’s not only ok, it’s necessary. You need to mourn the loss of the child you thought you would have before you can fully move on to love the one you were given. And please trust me when I tell you it is possible to move on.
For now, let all the ugly out. Cry about the loss of dreams you had for this child of yours and yell about the unfairness of the diagnosis now attached to this life within you. I still vividly remember every minute of the night my husband and I sobbed on the couch together as we came to terms with the reality that the little girl we would soon be adopting was coming to us with a long list of demands we never wished to meet. I also remember the moment we decided we were not going to let Down Syndrome define our daughter; we were going to let our daughter define how she would live with Down Syndrome. Call it cathartic, call it an epiphany — for us it was the oxygen we needed to take a breath and welcome her home.
I can tell you the cuteness will be hard to take at first and, if you are like me, you may not ever get over it. While you may be fearful of the physical markers that accompany the extra chromosome, I can tell you the extra space between the eyes makes for the perfect kissing spot and the flatter facial features and slight slant to the eyes will one day be a source of pride as you find yourself actually hoping the stranger on the street will notice your child has Down Syndrome and be blown away with how she is rocking her extra chromosome. Trust me — it will happen.
This road will certainly be different than raising a child defined to be “typically developing.” It will be harder in many respects and I wouldn’t try to convince you otherwise. The newborn stage will most likely include more doctor visits and more information about her health than you want to know. The fact that she is diagnosed with Down Syndrome leads to a laundry list of tests not required for “typical” babies. Take comfort in the fact that today doctors know exactly what to look for and how to treat every medical challenge that may (or may not) arise. She will be in the best of care.
Your daughter’s development will be delayed, but every time she reaches a new stage you will wonder what you were so worried about. It will take patience, patience and more patience. And she will need you to be her biggest cheerleader, pushing her forward when she is frustrated that her world is more complicated to navigate than it is for most. She will walk, but it may be later than her peers. Then, all of a sudden, she will run and it will be hard for you to catch up to her. She will speak, but it may require intensive speech therapy. However, you will be amazed at her ability to communicate and bond without the use of words. Then when the words start to come (and they will) you will celebrate each new sound, vowel, and consonant as if they were a pot of gold at the end of the rainbow. Fine motor, gross motor, tone, motor planning: these will all be terms that become second nature as your little girl learns how to hold her spoon, skip, climb stairs with alternating steps, and take pen to paper to begin writing her letters. Her flexibility will no doubt astound you and you may find her chewing on her toes with remarkable ease. The beauty in all of it is that your heart will stretch right along with her, loving her more each day as you come to know the child behind the diagnosis.
You will soon learn, as trite as it may sound, that your child truly has more in common with her typically developing peers than not. Your heart will break many times over however, for the extra effort, determination, and perseverance it takes for your child to reach the same goals her peers take for granted. The pride you feel in watching her storm her way through life will glue your mama’s fragile heart together and allow you to keep pushing, keep encouraging and keep hoping.
You will laugh. A lot. Often it will be a result of the unique way she has found to outsmart you again; sometimes it will be her innocent and funny interpretation of the world; other times it will be in response to her intoxicating giggle that just makes you want to scoop her up and shout from the rooftops how excited you are to call her your own.
You will cry. A lot. Often it will be a result of your patience running out and the feelings of inadequacy taking over. Sometimes it will be catching her in the far-away, open-mouthed gaze that all at once reminds you of her sheer vulnerability and innocence and leaves you wondering if you’re doing enough. Other times it will be simply because You. Are. Tired. More often than not, however, the tears that fall will be tears of joy. She rolled over — she took ten steps without falling — she signed “more” when she wanted a refill on ice cream — she melted the heart of a stranger — she said “ma-ma” — she made it through her first day of preschool — she ran to the bathroom on her own and was dry when she got there — she said, “I love you too.”
You will not be alone. Let me say that again. You will not be alone in raising this little lady. You don’t have to know everything, or anything for that matter. There are experts ready and waiting to provide physical therapy, occupational therapy, speech therapy, and specific, family-centered education for mom and dad on how to best care for your daughter. This care is state-mandated for these precious souls, which means you don’t have to be weighed down by the burden of therapy bills and the thought of financial stress. If you are anything like me, however, you may have to dig deep to be ok with the fact that you can’t give her everything she needs on your own. You will have to assume the cloak of humility and welcome the help that is readily available.
Your daughter will be loved and she will be accepted. Things are different now than they were even ten years ago. You will be amazed at the number of people that invest themselves in your daughter’s success. From therapists to teachers to peers and classmates, you daughter will find support in all she does. That said, you will need to learn how to be an advocate for your child, in your own family, in school, in public settings. As far as the human heart has come in accepting those defined as “different” there are still those who won’t believe your child deserves all the “extras” she will need to become her best self. Your daughter will prove them wrong, no doubt, but you’ll need to be her voice before she is able to speak for herself.
It’s likely your world will become scheduled and routine. Our daughter thrives on routine and I’ve learned from other parents who have children with Down Syndrome that what throws their children off more than anything is when their day is unscheduled and therefore uncertain. While you may find the routines suffocating from time to time, you will keep going back to them when you realize they are the very thing that stabilizes the world for your child and provides her the comfort she struggles to find any other way.
Your little girl will ground you in this crazy world and force you to recognize and appreciate the beauty in each moment. It won’t be all roses and fairy tales, but parenting never is, whether you are parenting a typically developing child or a child with special needs. It’s the best kept secret among we parents of children with Down Syndrome — the challenges are real but the joy is bigger.
Trust me. One day, in the not-so-distant future, when time has played its part and the reality has replaced the fear, you will be able to reach out to the parents who just got news of their child being diagnosed with Down Syndrome and congratulate them on winning the lottery.
Copyright 2018 Nicole Johnson