Before Regina was even a twinkle in her father’s eye, I used to follow a few social media accounts of parents of children with Down syndrome because I sincerely enjoyed them. But after a while, I started to ask myself, “What if we had a child with Down syndrome?” After consideration, I came to the conclusion that the prospect panicked me. I wouldn’t be able to handle it, I just knew it. I remember unfollowing all of the accounts in a desperate bid to brush away my disquiet. In the back of my mind, I knew what I was experiencing was a prompting of the Holy Spirit. “Not I, Lord!,” I thought. I felt extremely ill prepared and unfit to be the mother of a child with Down syndrome.
It seems impertinent in the extreme to tell an omniscient and omnipotent God that He made a mistake and picked the wrong gal. Nevertheless, that was my very first thought when I realized that Regina had Down syndrome. My pride knows no bounds, apparently. People act like Down syndrome is the worst news you can possibly receive about your pregnancy. I am forced to admit I was not completely unaffected by that prevailing attitude. However, “Not my will, but Your Will be done,” kept echoing in my head, and I could no longer drown it out.
When Regina was born, I was afraid that all I would see was her Down syndrome. She taught me that I would simply see my adorable baby whom I would love just as fiercely as I do all of her sisters.
Regina taught me that sometimes children with Down syndrome do have limitations, and there is simply nothing I can do about that. There is a lot of pressure in the Down syndrome community to push our children to be as “normal” as possible. But sometimes, your baby with Down syndrome simply cannot breastfeed, not matter how many therapists you consult, how many consultations with lactation consultants, how much her underlying health issue is resolved, or how long you try. Sometimes it takes them years to learn how to walk. Sometimes they are nonverbal. Sometimes their stimming makes them conspicuous. The list goes on and on. Comparison is the thief of joy, especially if you have a child with Down syndrome. Regina has taught me she will be different from other children in some respects, and that is ok. It takes all kinds to make a world. And she is perfectly content with being herself. So why can’t we be at peace with her?
At the same time, Regina has taught me to never underestimate her. Since her NICU days, she has been an extremely effective communicator. I am never left wondering what Regina wants or how she is feeling. After eight months of solely tube feeding and gagging if I ever even touched her mouth, she pulled her own feeding tube out and started drinking her own bottles and then feeding herself table foods and drinking out of a straw. She works extremely hard during physical therapy and is hitting her physical milestones at an extraordinary rate considering she has low muscle tone and a major surgery in her first few months of life. She never ceases to amaze me and make me proud.
Regina is not the only one who has been teaching me things about Down syndrome. Her sisters have taught me that they couldn’t care less that Regina has Down syndrome. They don’t consider her strange or scary or an outsider, they simply consider her another member of our crazy circus, and love her unreservedly as such. They have taught me that, as it says in the song of Ruthie’s own composition, “We are the Bass family, we always stick together!” No matter how cruel the world can be about Down syndrome, Regina will always have a home with us and we will always love her just the way she is, no holds barred. Regina has led me to cultivate a deeper love and appreciation for my parents, my siblings, my grandparents, my aunts and uncles, my cousins, my in-laws, and my friends, who have all embraced Regina wholeheartedly and have loved and supported us through the hard times and the good times alike. And of course, nothing brings me more joy and pride than to watch Scott be a marvelous father to Regina, and a relentless advocate for her. My love for him has grown exponentially since we have had her.
You see, fear of the unknown is only natural and plagues us all. But about 15 months into this journey, I have learned that Regina is not a diagnosis, she is not a stereotype, and she is not the manifestation of all my worst fears. She is a human being. She is a daughter, a sister, a granddaughter, a niece, and a goddaughter. And most importantly, she is a beloved child of God. She has the same dignity that has been bestowed by God upon all of us. She brings us just as much joy as any other baby. She giggles, she smiles when she sees me and raises her chubby arms high above her head to ask me to hold her (my only baby to do that, and I live for it), she makes us laugh, she army crawls as quickly as she can to be in the middle of everything, she gets into mischief. She loves tickles and snuggles and can eat any of her sisters under the table. Her favorite way of expressing her love is to grab a handful of hair and yank (we’re working on that). My sister’s irresistibly fluffy labradoodle has already learned to give Regina’s grasping hands a wide berth. She adores music and will dance right on the beat to anything I play for her.
I am certain now that back when I pathetically unfollowed all of those accounts, I was ill-suited to be the mother of a precious child with Down syndrome. God gives you the graces you need at the time when you need them and when you ask (or, in my case, beg) for them and not before. Mary said to the angel Gabriel, “I am a handmaid of the Lord, may it be done to me according to your word.” Well, if the Mother of our Lord considered herself to be a lowly handmaiden of the Lord, then that would make me the lowliest shit sweeper of the Lord. But if He in His infinite wisdom considers me worthy to have a treasure like Regina, be it done to me according to His word. There was a time when I would have considered it a sanctifying cross, and I’m sure I will periodically, just like I do with my other children. But let me tell you, after almost losing her on the operating table on May 15, 2017, this World Down Syndrome Day, I consider Regina to be nothing but a blessed gift.
Why was I chosen?
Such questions cannot be answered . . . You may be sure that it was not for any merit that others do not possess: not for wisdom, at any rate. But you have been chosen, and you must therefore use such strength and heart and wits as you have.
J.R.R. Tolkien, The Fellowship of the Ring
I’m not going to be able to express this quite right… But I want to confess that, for my entire marriage and string of 4-in-an-absolute-row kids, I have had this unshakeable and unsettling SURENESS that one day I’m going to have a child with some kind of special need that requires me to care for them into adulthood. It’s a long story, but a strong sense that I try not to look in the face too often. I’ve always been frightened of that little “ringing in my ears,” as I navigate motherhood in all the craziness that it already is. I’m 28 (and Catholic, so….) there’s a lot of years of fertility and half-hearted NFP ahead of us, haha. But I want to say, if this itch on my heart ever proves positive, that this blog post gave me more peace about it than I’ve ever actually felt before. I realize that sounds cheesy and overstated. But honestly. Thy will be done. And Sylvia: you are doing such important work in the world; THANK YOU.
Oh my, you are so kind to reach out and tell me! That makes me so glad. If it spoke to you, then it must have been a tiny bit of God speaking through me and as St. Teresa of Calcutta says, “I am just the pencil in His hand.” God bless you and yours always.
Yes!!!!
I have time for a more detailed response now! I was also given prompting by the Holy Spirit in the summer before my daughter with DS was born. Perusing new books at the library, I picked up “Bloom” by Kelle Hampton. I read it and enjoyed it. Also found a couple of other special needs memoirs that year. And, having read almost every pregnancy/childbirth book in the world, I picked up a new book about C-sections.
It turns out a needed all of them (after an amazingly easy pregnancy with no indications of something unexpected) once my girl decided to make a dramatic entrance to the world fill with emergency c-sections, fetal distress, and a luxurious trip to the NICU. It took me a while to get a a grip on all that happened but luckily God provided me with a great husband and family. My husband asked after he got the diagnosis, “Why not us?” and went on to be a rock in a very difficult time. A friend of mine just looked at me and said straight, “You can do this” without a doubt in her voice. So we got through those first chaotic weeks.
And really, she brings her own joys and challenges, just as my other children do. She;s just one of the crew.
I loved reading this, thank you so much for sharing.
Love love love love love love! 💕