Parenting a Child with Down Syndrome

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The following is a guest post from Deanna:

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words that can fully describe the initial devastation, grief and heartache as I was convinced that my perfect baby had been replaced by a defective model.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.

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  1. “When she effortlessly laughs, I swear that the birds chirp a little bit more cheerfully, the sun brightens and all that is evil in the world temporarily disappears.”

    Oh, yes. I know this with my son, who has special needs.

    Thank you for writing this.

  2. 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.

  3. 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!

  4. 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. 🙂

  5. 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.

  6. 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.

  7. 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)

  8. 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)

  9. What a sweet story! and oh, that baby is so adorable! My 45 year old brother is down syndrome and he has blessed our family beyond measure! I have always said that down syndrome children are a special gift from God. They are ALWAYS so loving and never see bad in people! You are blessed!

  10. What an amazing post. I just stumbled on this. I have a sister with down syndrome and she has been the biggest blessing and joy in our lives. Your little girl Addison is adorable.

  11. I have 3 nieces with Down’s Syndrome – one biological and the other 2 adopted from the Ukraine. They are a blessing – such a blessing to our family!

  12. Amen! As a Mom to a 29 yo, also with Down’s, I can absolutely say they are the biggest blessings in life…ever! Not to say that life has been a bed of roses, we are still dealing with issues (the current one is now….is she developing early onset Alzheimer’s?). The bring a pure honesty and innocence into life that can quickly get jaded and superficial and they make it all real again. We thank God for her every day. Thanks for your post!

  13. Although I’ve read Deanna’s testimony several times, I still sit here with tears in my eyes. I love her honesty and her faith in God is amazing!

  14. Wonderful story and very encouraging. I too have a special needs child and I love your way of thinking. Thanks for the encouragement!

  15. As a Mother with a daughter who has high functioning Autism, I understand the fears. I had my daughter at 26 and went through the ups and downs of what could I have done wrong during my pregnancy. After 5 years I could not imagine my life without her and her sister. Those little “quirks” are what makes her her. I don’t think I would appreciate all her accomplishments if we have not gone through hours and hours of therapies. I am a very proud Mommy of two little girls!

  16. This is exactly the kind of post I was needing this morning. I, too, am a mother raising a special needs child and Deanna’s words are so touching. I can’t wait to read more about her beautiful daughter and her experiences raising a daughter that has a “little extra.” 🙂

    I love that!

  17. It is a beautiful story, Thank you for sharing. I also know that dark place. My youngest was diagnosed with tuberous sclerosis when I was 7 months pregnant. I remember the first doctor telling me they didn’t know of any children that had survived. But then we went to the second doctor and they had 5. Then it was time to give birth and she came out so beautiful and wonderful. She had her first open heart surgery at 18 months and is now doing beautifully. Sometime, i think she is the best gift god gave me.

  18. This was wonderful. I am the mother of a child w/ Asperger’s Sydrome and an anxiety disorder. I struggle daily w/ his limitations and “oddities” and annoyances, but in so many ways he is the most wonderful child that I could imagine.

    God brought him into my life and is making me a better person as a result. (I hope and pray).

  19. I was a speech pathologist at a center for severely delayed infants and toddlers before leaving to stay home with my blessings. I worked with many little ones who, although extremely delayed, had personality, attitude, and love to give. They may not have fit the world’s model of “blessing” but I will never forget those times singing, holding, rocking, playing with, and loving on those children. All support for a “mother’s right to choose” went out the window. ALL children are a gift from God!

    A few years after leaving that place, my oldest daughter was diagnosed with a brain tumor, and although there are dark days, I know it was the way God made her and that He made her perfect. Who am I to want to change something He created? Thank you for sharing your story!

  20. Thanks for the beautiful story. A gentle reminder to accpet what is and keep living a positive life. Best wishes to you and your family!

  21. What a beautiful little girl!! This brought tears to my eyes. Thank you for sharing your story. May God continue to pour out blessings on your family!

  22. Thanks for sharing your story – she truly is adorable! I have known many parents of special needs children and it’s a struggle at some point for each one – but it’s a very ‘special’ experience to see the love and devotion and depth of understanding they develop because of the challenges they face.

  23. This brought tears to my eyes. Bless you and your family and your beautiful daughter. We all need reminders like this