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Dear Mama with a Prenatal Diagnosis of Down Syndrome, by Sylvia Bass

Updated: May 9, 2020

First of all, let me say something to you that probably no one has said to you in light of your recent news: Congratulations!! I know that word may be sounding jarring to you now, but hear me out.

I know how you feel right now. I have been there myself. You are scared, and all of the medical professionals saying things like, “I want you to make an informed decision,” and “I want you to know your options,” which you know are both code phrases for, “You can have an abortion” which really isn’t making this revelation any less scary or emotionally charged. Ask them if they know personally anyone with Down syndrome. If the answer is no, then that may be telling.

If you are at a loss as to what to do next and you are curious about life with Down syndrome, consider reaching out to a family you may know or be acquainted with that has a family member with Down syndrome.  Did any investigative reporter worth his (or her) salt begin his (or her, goodness this is getting unwieldy) investigation of certain cultures or peoples by relying on secondhand information? Not on your life! They immersed themselves in the population in question to understand all that they could. Now, I realize that in some countries people with Down syndrome are an endangered species threatening to become extinct (I’m looking at you, Iceland) and if that is the case where you live, then you are welcome, nay, encouraged to contact me. I would be more than happy to answer any questions you may have to the best of my ability.

The first thing we did when we found out about our daughter Regina’s diagnosis was reach out to a family we knew with a ten year old with Down syndrome. Watching that family hang out, eat lunch, swim in a pool, and pretty much do everything any other family would do calmed most of my fears and helped me immeasurably. The kids acted like any other siblings, and the parents didn’t look like their lives were in ruins (I know the family in question would laugh to read this, but that is truly the impression some people would give you about having a child with Down syndrome!)

I would encourage you to STOP googling and try and enjoy your pregnancy. I know that is next to impossible with all of the extra appointments and dire warnings from the doctors, but my biggest regret with Regina is that I spent her whole pregnancy worrying myself sick. Most of my worst case scenarios did not come true, and even when some of them did, her warm smile and even warmer face hugs and entire chin kisses got us all through. Google seems to have much to say on all of the health and developmental risks of Down syndrome, and little to say on all the delight they can bring to their family and friends. I suppose that is not a quantifiable risk. Although, I would love to see one of those dry medical explanations include the statistic: 100% risk of this child bringing you joy and love. Buuuuuut, no one consulted me.

I know some dark thoughts are swirling around your head, which are the inevitable spawn of fear and anxiety. I know you are worried about what other people will think, how this will affect your marriage, and how this will affect any present or future siblings. From my personal experience (I mean, I can only speak for myself), it has not detrimentally affected our marriage. To the contrary! I have loved watching my husband become a daddy again and do everything he can to advocate and protect his little girl. I love watching my other children interact with her, and to learn from their innocence in their dealings with her, untainted by prejudice and preconceived notions. I love that they will enter the world as adults more accepting and less fearful of differences.

And speaking of differences, so far I have noticed precious few. Regina smiles, she has baby chub, she has adorable belly giggles, she is hitting her milestones in her own time, but hitting them nonetheless. She despises yogurt and locks up her knees and giggles at me when I try to do physical therapy with her and she is just not feeling it. (The physical therapy is different, the willfulness is not.) The giggles turn to belly laughs the harder I try to unlock her knees and she cannot contain her mirth when I come to the astonishing realization that this nine month old with low muscle tone is stronger than I am. Little rascal.

She babbles with the best of them, and gives every new person she meets a smile and a wave. I did think she was cute when I first saw her after she was born (actually, she was the cutest one, most of my other children came out looking like skinny old men. Fortunately, their looks drastically improved with age). All of my children look completely different, but she certainly looks like she belongs. Perhaps her differences will become more evident as she gets older, but it’s already too late for us to mind, quite frankly. She stole our hearts a long time ago.

So, what everyone else thinks be damned! You will certainly get some rude looks and some even ruder remarks (someone actually sent us a card intended for someone who had had a death in the family and a 20 dollar bill; although, to give them the benefit of the doubt, perhaps they were confused as to what was going on?). Brush them off as the boorish attitudes of the ignorant. Pity them, for they live in a world where everyone is forced to be the same and everything they value is vapid and fleeting. There is only one whose approval I strive to seek. And since it is He who sent Regina to me, I know that He approves.

Do not be afraid! I feel like I read that several times somewhere . . . . . Oh yes! It’s in the Bible. I promise you, you will love this child as fiercely as any other of your children, and he or she will leave you in awe of his or her courage, patience, and ability to overcome seemingly insurmountable obstacles. Do not feel guilty about grieving the child you had been expecting and feeling like all of your hopes for this child have been dashed. It is a normal reaction that we have all experienced. But will you do me a favor? Will you give this child a chance? You might find that this child can fulfill those expectations after all, either in full or in a different way than you imagined. We all have our limitations, but with God all things are possible. I have no idea what the future holds for us and for Regina, but I trust in God’s Providence whatever it may be. She is one of a kind.

So please, allow me the privilege of being the first to congratulate you, in light of your recent news. This may not be the journey you expected, but I promise you it will still be filled with joy and love.

“Whoever receives one child such as this in my name, receives me; and whoever receives me, receives not me but the One who sent me.” Mark 9:37

Sylvia Bass is a Cuban Catholic wife and mama to five girls and one baby boy. She hung up her attorney spurs in exchange for the domestic life and is the proud mama of a child with Down syndrome. You can read her blog at Tales from the Mommy Trenches where this post originally appeared.

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