Parenting a Child with Down Syndrome
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As a healthy 25 year old, basking in the glow of my first pregnancy, the last thing that I expected to hear from my doctor was that my unborn child had Down syndrome.
There are no words that can fully describe the initial devastation, grief and heartache as I was convinced that my perfect baby had been replaced by a defective model. I think every mom who parents a child with special needs has a very dark time as she struggles to accept her child’s diagnosis and wonder if God perhaps made his first mistake.
It was during this time of searching and wondering that I needed friends and family more than I ever had before. Not to stand condescendingly by, pitying and feeling sorry for me, all the while chastising me for not being thankful for the gift that I was being given.
I needed friends and family who let me grieve – let me cry – let me recover at my own pace. I needed reminders that yes, this was unthinkably hard, but when I met my baby, I would love her more than life itself- extra chromosome or no.
Because of course, through the birth of my beautiful daughter Addison, I was given the greatest gift of my life, and I can’t even fathom loving any baby more than I love her. But there was still a dark, dark time when I understood the temptation to “eliminate an unwanted fetus” for the first time in my life. I am so thankful that my strong belief in the fact that God had sovereignly created the life inside me spared me from making the biggest mistake of my life.
Addison just celebrated her first birthday in February, and I can honestly say that this has been the best year of my life. Every minute of celebrating life with her has been a complete miracle.
This includes a 5 week NICU stay, 3 surgeries (2 of them heart), nine months on oxygen (try hauling an O2 tank with you wherever you take your baby), countless of doctor’s appointments and learning the ins and outs of medical jargon I never dreamed I would need to know.
I think that if you are someone with perfectly healthy, normal children looking in on someone’s life with a child with special needs, it can be very easy to feel sorry for that family and say silent prayers of thankfulness that your life isn’t half as nightmarish.
I used to think that when I looked at “special” families. When I heard them proclaim what a wonderful blessing it was, I would silently smirk and think that they were saying that just to avoid the pitying stares.
But here I stand, with a one year old daughter who happens to be sporting something a little extra, and I am amazed with how I wouldn’t change my life if I could. I am blessed beyond measure with my daughter.
I seriously never dreamed that I could love this deeply. Mistake? Who? My daughter is perfect.
When she looks at me with her wide blue eyes, just like her Daddy’s, my heart melts. When she smiles at me, my melting heart skips a beat. When she effortlessly laughs (she is extremely ticklish, and I take full advantage), I swear that the birds chirp a little bit more cheerfully, the sun brightens and all that is evil in the world temporarily disappears.
From one mom to another, I beg of you to look beyond the labels placed on some of our children, and recognize the existence of human beings growing and loving life just like any other baby.
Because honestly? Every child has struggles in different areas, but it in no ways takes away the fact that they are exactly as they were meant to be.
God makes no mistakes.
-You can read more about Deanna, Addison’s birth story and their life together at Everything and Nothing in Essex.
I have an 8 year old with special needs and she has also been such a joy. She is adopted and when people would hear about it they would tell us how lucky she was and my reply has always been that WE are the lucky ones. Not everything has been easy and I actually think it’s harder as she gets older because it’s physically more demanding, but her sweet smile can melt my heart every time. We never take things for granted because she has to work so hard and even the small achievements are reason to celebrate.
Thank you for the beautiful story! So honest!! Being brave with my life, it’s a really good concept but one of the hardest things about it is the vulnerability. My self-preservation says “back up the train!” but I have come to the conclusion that if I am going to do something worthwhile with my life it’s probably going to feel like jumping off a cliff. I want to see the hands beneath me, poised to catch me.
Having Claire, my beautiful four year old who has Down Syndrome, is teaching me to be, well, a little out of control. I don’t know what tomorrow is going to hold. Infact, thinking about six months from now puts me into a bit of a panic attack. I really can’t hold this thing together on my own.
My life was really safe. Some days I feel like I messed it all up but you know, that life wasn’t very fulfilling. I went through the motions, my predictable days and at the end of them I was exactly the same, or possibly more self absorbed.
I’m working on not having a clue, taking it out of my incapable hands and giving it to God. Keep it up!
Thanks for this post! Such encouragement as our family is trying very hard to adopt one special little girl who is an orphan with DS. We also are active advocates for other orphans with DS who desperately need the blessing of a family. I am always filled with joy and hope to read of the blessings and joy that DS children can be. 🙂
~Amy
Beautiful! I love this post and could feel the Mommy love! Addison is a beautiful baby.! Love it!
thanks for sharing your journey with your precious daughter – the challenges and oh, the blessings. her smile will warm many a heart. =) she is so cute.
Thank you for posting this. With Lilly having Williams Syndrome, it was very close to home. Approaching her third birthday in a couple of months, I am reminded of God’s goodness everyday to us in his creation of Lilly. She is a true joy who is so very grateful for everything. She’s constantly saying “thank you, mom.” And that is a true blessing.
What a BEAUTIFUL testimony and what a gorgeous little girl!
Here’s a quote that I recently discovered and loved:
If Down syndrome is a disease then the world needs to catch the symptoms and spread them quickly — unconditional love, purity, innocence, honesty, and an incorruptible spirit of Light! —Kurt Kondrich, (dad of Chloe, age 7, who belongs to the race that knows Love)
I am pregnant with my first child and also an older sibling to a brother with severe autism. Thank you for your post. The last line really hit home for me – God makes no mistakes. This is a truth that I need to keep with me until my little girl arrives. (hugs)
well done Deanna! This is a wonderful post…
Thank you for this reminder of God’s goodness.