Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker
To the new mother of a baby with Down syndrome

To the new mother of a baby with Down syndrome

To the new mother of a baby with Down syndrome

Meeting Her

You had a baby with Down syndrome.

I remember the feeling.

That first meeting with another family farther along the path of Down syndrome after the birth of our child with the same diagnosis.

I remember fear and fascination.

Fear of the child four or five years old who’s eyes mirrored my baby’s. She shouldn’t have looked like him. I birthed her. She should have resembled me.

Fascination, as I watched his sister play with him; he hit her, she cried, mother reprimanded. So common, so usual, so family. Things I thought we may have lost with the appearance of an extra chromosome.

I cried quietly for two hours while visiting this dear little boy and his family. They loved him. They cherished him. He played games, and communicated with his hands and with his voice. He chowed down on his lunch.

But still, I cried, because this path wasn’t my choice. At my point of weakness his mother appeared strong. I was an anthill. She, a mountain. I clutched my baby to my chest, each second teetering between relief and uncertainty.

His mother was gracious, tender. We whispered to each other as her children played nearby.ย “I love him. Our life is good. Really. It is.”

Her smiling eyes met mine.

I looked away.

I loved my baby.

But that day I did not love Down syndrome. It was too big, too unknown.

Meeting You

Your husband contacted us last week. We scheduled dinner. The following days you kept popping up in my mind. A mother forced to move from a typical parenting landscape to some place new, a place everyone claimed was special. If you are anything like me, shocked by a culture wildly unknown and unsolicited.

“Mom, why are you cleaning up around the house, and making us all put on fresh shirts and brush our hair?” Elaina asked as I set the table. “You usually don’t make such a big deal out of dinner guests.”

Several responses queued on my tongue. Instead, in a brief moment of clarity, understanding that Elaina would learn more from the truth, I responded.

“Because, this family had a baby a few months ago with Down syndrome and I want them to feel welcome. I want them to see that we are happy, and that Papa and I treasure all four of our girls.ย I want them to see that we are OK.”

Your family arrived. We cooed over both of your children. I held your new baby in my arms. He smelled like sunshine.

His eyes mirrored my daughter’s.

I held your little one to my chest as our children played close by. Polly hit Zoya. Zoya cried which made Evie cry, and Elaina played on the floor with your son.

You probably aren’t excited to be a part of our special needs club. I have to tell you, though, welcoming you into my home was like welcoming family.

You teared up as you talked about your love for your son. “Down syndrome is something different. It’s a lot to take in.”

Oh, how I know.

I am a bit farther down your new path. Give yourself time to fall in love with your son, and to get used to Down syndrome. Breathe in his baby smell. Watch how his brother kisses the top of his head, how your husband gently puts him down to sleep, how your baby locks eyes with you when he eats.ย The weight of the world is in those eyes.

Today, you don’t have to love Down syndrome. Just love your son.

And know that we, other parents in this very special club, are here when you need us and that someday, you will be the one looking a new mother in the eye saying,

“Our life is good. Really. It is.”

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119 comments found

    1. We just brought our new baby with DS home from the hospital a few days ago and don’t quite know where to go from here. My friend shared your blog with me and I just want to say thank you. Your comment to just love my baby even though I don’t love DS hit home. That is what I will do today, and continue to do everyday.

  1. I,too, teared up. You write beautifully and your tender heart is evident in every line. Thank you for sharing.

  2. Very powerful, I am new to this special family also and although I love all 4 of my children equally I am especially smitten with my angel! As yet I have not had the chance to physically socialise with other families although I do talk a lot to the group. Being brought into the ds world is very bewildering, but I wouldn’t change a thing!

    1. The best part of being involved with other families who have children with DS is that they GET IT. You don’t have to explain, define, or defend your child or your family. It’s awesome. It’s an instant connection, and once the introductions are over (sometimes before), the ” yeah…when my son/daughter was ? years old…..”
      It is an awesome experience and one you will always treasure! ๐Ÿ™‚

  3. Gillian, I’m crying, too. Thank you for opening your heart so honestly. I know it will help not only mothers of babies with Down Syndrome, but all mothers. “Today, you donโ€™t have to love . . . (defiant behavior, temper tantrums, adolescent angst) . . . Just love your son (or daughter).”

  4. How do you continue to find these amazing stories to share so beautifully. I’m so lucky to have you in my life!

  5. What a fantastic writer you are! God has certainly given you a message of love to share with the world.

    When are you coming to Montana? I want to meet you and speak Russian badly together.

    Ellie

  6. Gillian~~I check out your blogs and various sites often to catch a glimpse of you from far away. I picture you in your home with the girls and Serg. You are real; your experiences aren’t sugar-coated. I await the time God causes our paths to cross again.

  7. Beautiful piece that captures a lot of wisdom and guidance. I hope church leaders will find this post and refer to it for when sweet mamas in their ministries have similar experiences. As always Gillian, fantastic stuff. ~ Amy Fenton Lee

  8. Oh, gosh. You have me in tears. I remember well my first visit, and that crazy woman who gushed on my voicemail about how happy she was about the birth of my child with Down syndrome. But of course she was right, and now I’m the crazy woman falling madly in love with all these slanted-eyed newborns.

  9. Absolutely beautiful .. you made me tear up and remember the overwhelming feelings of being a first time mom, so in love with her daughter but so very scared too. Now almost 13 years later I am still so in love with my daughter … and yes “we are ok .. really”

  10. Beautiful, beautiful, beautiful, Gillian. I’m a Parent to Parent volunteer with our local DSA, and this is just so familiar. You’ve said it all. Reading the blogs over the years, my heart always soars watching the transformation the new parents go through when they open their own hearts up in writing. I watch them struggle in the beginning, and then I wait for that moment of clarity, love, acceptance and joy that inevitably comes to all of them. Not too much beyond that, I watch them impart the same message to the next crop of new parents.

  11. I am one of the grandma’s of these two beautiful boys. My son shared this with me. I want to thank you for being such a wonderful person in my kids lives. There are not enough Gillian’s in this world.

  12. We recently found out that our baby girl has ds and reading this really helped me thank you much!

    1. Oh, Cassie, thank you for reading. I’m going to email you. Much love to you as you process the million thoughts and emotions I’m sure you are going through right now.

  13. Wow, you just brought me back almost 8 years ago when my son was born. I LOVE “you don’t have to like DS, but you have to love your child” – I am “stealing” that one!

  14. Thank you for this beautiful story. Our son is 28 months old and I remember meeting two Ds moms when he was only 3 months old. I couldn’t sleep for days in anticipation of the meeting… wondering what I would hear and learn. That meeting helped me SO much I cannot tell you… to see that it was going to be 100% OK was fantastic. Someday I want to be able to help another family like that. Thank you for your stories ๐Ÿ™‚

  15. So beautifully written — my girl is 8 years old so I am very familiar with this journey. What a beautiful one it is — if only we had that foresight when our little ones are born. Thank you for sharing this!!!

  16. Beautiful article, you have a close relationship with Jesus, that never can be broken. Never, never, once you have that intimate relationship nothing .nothing can break this. love forever.

  17. I am grandma to a two beautiful grandsons. Although my seventeen month old grandson has DS, it does not define him, as he is uniquely delightful. He amazes us every day. Your story rings true for both parents and grandparents. Fear of the unknown brings truly powerful emotions to light, and yet it is matched equally by the triumphs and accomplishments that are daily occurrences. I love your story, and thank you for sharing so eloquently.

  18. Thank you for welcoming my family into yours! Thank you for be willing to open your hearts and your home! I love these boys (my nephews) more than I can ever express or could have imagined. I am so, so thankful God brought you into their lives. We as a family do our best. It is could to know they have others to hold their hands and say, “Me too.”

    My sister is my hero and her husband a close second. Again, thank you.

  19. I know that as a non-parent, I’m not supposed to get it. I know I never truly will. But your short, simply-stated insight into a world so alien and frightening to me is profoundly moving. It’s all life. Life does what it does, and we can only choose so much of it before it says “you know what – I’M in charge and you’re going *this* way.”

    I love perspective-altering slaps in the face. Thank you!

  20. As a mum of a 20yr old it isnt an easy road it can be very rocky never the less there are just as many wounderful, cherishable, special moments that make me and my family who we are and i wouldnt change a second of our lives. So enjoy every minute course its a ride well worth riding. <3

  21. I too read this with a tear in my eye. I do not have my own child with Down syndrome but am involved thru my daughters little dance school (for children with special needs) with not only children, teens and adults with Down syndrome but many other differing abilities. we too feel like a big extended family and share our experiences with each other to help each other thru new experiences. My daughters aim with her dance school is to help others realise that all children love music and dance & deserve the chance to Sparkle & Shine! May all your children also get this opportunity xxxx

  22. Beautifully written!! I too have been in your shoes and continue the path into the future both good and bad with our wonderful daughter.

  23. As a first time Grandma, I had a very hard time when we learned our baby boy had DS. Your words have really helped me. I am excited to see just what the future holds for this sweet little baby.

  24. Enjoy reading your writing. I’m too a mum of a 10 years old DS girl.
    She amazes me and makes me stronger ,.
    she inspires me to be a better person!
    Let’s pray for bright future to our special needs children..

  25. Thank you for this beautifully written post. My daughter was born with Down Syndrome 8 months ago and we are still figuring everything out. You said it perfectly, I love my daughter with all my heart but there are days I do not love Downs. Thank you

    1. Thanks for commenting, Elizabeth.

      And congratulations on the birth of your little one :).

      Please keep me posted on how it is going. And give yourself time and grace … it doesn’t all have to be figured out today.

      One day at a time.

  26. Thank You for this sweet writing. My son is 5 months old and even though I thought I was as prepared as I could get, I still was nervous about the unknown. I did feel that transition-to me he is my little boy and I wouldn’t trade him for the world. I’m just now starting to met other parents with ds children and trying to find groups in the area with children in the same age range and it still scares me a bit. Thanks again for the wonderfull message

  27. how beautiful. I am not sure how I ended up on your site–sometimes I click, click, click and end up someplace wonderful, and that’s what happened today. I don’t have a child with Down syndrome but I teach children with Down syndrome and I loved reading your story.

  28. I am the luckiest dad in the world. My daughter is almost 39, and she is a vibrant, fulfilled, self-confident, happy, and active woman with Down syndrome. She has friends, a job, sports she loves, a family who (maybe) spoils her (just a little), and a life that any of us should envy. She IS the very definition of a success!

  29. Dear Gillian,

    I have just read your extraordinary letter and am moved to write – I work with a number of children and families with DS and just love it. When my granddaughter was born in Hong Kong, she was immediately whipped away from her parents and taken to the NICU and her distraught parents were not told why. They sent photos of her, which I scanned for hours, looking for something I could recognise, praying ‘Please God, let it just be Downs …’ As it was, she did not have DS, but that was not the cause of my relief – it was simply that she was healthy.

    With your permission, I would like to copy your letter and hold it for new families who have babies with Down Syndrome – whether in my personal family or in the wider family of families I work with.

    I thank you again for this hugely inspirational letter!!

    With kindest regards,

    Prue Wignall,
    Speech-language therapist,
    Christchurch,
    New Zealand.

  30. Ah….I, too, have been both mothers in this scenario. And life IS good, even when you’re too numb yet to feel that goodness.
    Beautifully written – and lived.

  31. What a screen full of love and compassion, thank you for writing this so wonderfully.We have been in both of the encounters. Visiting a four yr with ds and her parents, while we were all recovering from the heart surgery our baby girl with ds had undergone. And then, four yrs later, meeting this new parents with their ds baby. I felt so much richer, stronger, more empowered with the second encounter, knowing that in a few yrs the new parents would feel the same!

    The love for our three kids, and the fourth w e lost halfway pregnancy, knows no boudaries.

    Miranda, from Holland
    Thank you for sharin

  32. I am the grandmother of a beautiful grandson who just happens to have downs. I hate that he has it but it does not define who he is. He is just my grandson and I love him for who he is just as much as I love my other grandson. He has brought so much joy to our family and taught me so much in his short little life. He was so sick at first and has already had heart surgery and a long stay in the hospital. Now he is happy,healthy,progressing everyday and most importantly loved. His future both scares and excites us. My daughter and her husband are both great parents and have loved him from day one, unconditionally. We all truly believe God gives these special children to special people who will love and care for them as they deserve. Be proud and cherish the gift God has given you all

  33. truly, this is awesome writing of such a real emotion we have all had!
    i will never forget my first contact with another CHILD with down syndrome….
    and even better my second contact…we are still GREAT friends.
    God IS good…
    barriers in ‘regular life’ are broken down when we meet another parent, or person with down syndrome
    our eyes meet..
    we know!
    it is an AWE some world we have, and are blessed when we have each other to lean on when ‘stuff’ gets in the way.
    thank you gillian!

  34. I love this! I have a 2 1/2 year old with Down syndrome and I just had a friend of a friend get my phone # b/c her son had just been diagnosed. I kept thinking last night what I should say to her. This makes my heart melt and it is wonderful advice. I love my son now more than I could have ever imagined but still sometimes think back to how hurt and scared I was when he was first diagnosed. I’m so thankful for other mothers who encourage:)

  35. This was beautiful and brought me back to two years ago this summer. I had a diagnosis that put me in despair. I was so angry at God and the world. My beautiful Caroline was born November 22, 2010 and my life changed for the better.
    I was just commenting to my husband this morning how privileged I feel being her mommy. I love her and life IS good! ๐Ÿ™‚

  36. This was wonderful. My son, Jacob, has Down syndrome and will be 16 in a couple of days. What an AMAZING ride it has been. I am so thankful he is in our lives!!

  37. this is such a beautifully written piece, which i relate to so deeply. i only wish i had written it myself! i too knew i loved my newborn Seb but at the same time i was utterly grief stricken for the baby i was supposed to have. it was a very confusing time. i felt so cheated. i also had the visit from the mother of a special one to my house and she excitedly showed me his school book of photos. i could barely look. i am so mindful of this now whenever i meet new mother’s. it takes time to fall in love – with anyone, not just special ones. at the end of the day I had never met her son so how could i emotionally engage with his pictures and achievements? i can honestly say that i would not change a single thing about our life and our gorgeous boy. only time can teach you that. i read an amazing quote the other day which was something like ‘down’s syndrome is the gift nobody wants. until they get it’ – love it! x x

  38. I have an older brother with Autism. I had a baby sister with Down’s but we lost her to Nuroblatoma just 2 years ago. They are my big inspirations in my life! I now have 5 brothers and i love them all! ๐Ÿ™‚

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