A Letter to a New Parent of a Baby with Down syndrome

Penny when she was two days old

Our daughter Penny was born five and a half years ago. She was our first child, and we found out two hours after she was born that she probably had an extra 21st chromosome. For us, the first twenty-four hours were the hardest, although it took me about a year to fully receive her for who she was, without reservation. From the start, I loved her fiercely. When she was in my arms, my fears and doubts dissipated. And yet I still wrestled with questions about her future. I was afraid for her health and afraid for all of us as a family that it would be too difficult to raise a child with special needs. I was worried that we wouldn’t delight in her, that somehow her low muscle tone and developmental delays would cause us to feel frustrated or disappointed. Thankfully, I was wrong.

The feeling I had with Penny in my arms—one of sweetness, peace, joy, and love—that feeling remains. The fears and worries and anger and sadness have disappeared. I don’t mean to say that I never worry about Penny. She’s headed to kindergarten next week, and I’m probably more nervous about it than she is. But my concerns for her are the same as they are for her younger brother and sister. I now understand that Penny can live a full, vibrant, meaningful life, and so I no longer fear what her life will be, even though I can’t predict what will happen.

When Penny was first born, I had two different sets of questions. One set surrounded the practicalities of Down syndrome—how do I find therapists and will insurance cover our expenses and do I need to stop working and what will life look like for us? And then the other set was more spiritual and philosophical in nature—did God create her with Down syndrome and am I supposed to learn something from this experience and in what ways is this going to change me?

. . . I’m a writer, so I’ve written a lot about Down syndrome over the years. These articles might be of particular interest to you:

Babies Perfect and Imperfect” is an essay I wrote about welcoming Penny into the world and coming to a broader understanding of human perfection and wholeness

Deciding Not to Screen for Down Syndrome” is an essay I wrote for the NY Times Motherlode blog about my decision not to pursue prenatal testing with my most recent pregnancy and “Is it Harder to Have a Child with Down Syndrome?” is a follow-up post I wrote about the blessings and limitations of having children in general.

I’ve also written a book about our experience. It comes out in the next week or so. It’s called A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. You can find out more about it at www.amyjuliabecker.com. Oh, and I also write daily for my blog, Thin Places. At least once a week I share a story about Penny and/or disability/Down syndrome there.

Maybe I can leave you with a portrait of who Penny is now. (I always liked hearing about older kids with Down syndrome when Penny was younger—I still do, actually.) Again, Penny is five. She talks to me every day about going to kindergarten. She’s a “little bit nervous” that she will be “lonely” there, but she’s also excited. (She tells me, “The other kids will feel a little bit nervous too.”) She does lots of things that five year olds do: goes to the potty by herself, clears her dishes from the table, tries to entertain her baby sister, and pretends to be much older than she is, “Mom, I’m a do that by myself. Is that cool?” She can write her name and sound out some simple words and count and tell stories. She also has her own limitations and vulnerabilities. She’s very impulsive and we talk a lot about keeping her listening ears on. She has a harder time putting together a jigsaw puzzle than her younger brother. She wears glasses. She still receives speech therapy and occupational therapy and physical therapy.

And Penny—like her younger siblings—can infuriate me. But then she’ll do what she did this morning, which was to come back into the kitchen after breakfast. She tapped me on the arm. “I forgot to say I love you, Mom.” I looked down at her with a smile. “I really love you Mom.” And she walked out of the room.

This is my daughter. I am grateful that she has broken my heart wide open.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. That was beautifully said Amy. She is truly a wonderful little girl. She has taught me alot in the past year. She will do wonderful in kindergarten.

    • Thanks, Debbie. We meet her teacher tomorrow! We’re excited!

      • K8strickland says:

        Amy Julia,
        Here I am as a Kindergarten teacher, ready to welcome my new students – and I read this. I pray for Penny and her teacher – for a wonderful year of fun, exploration and learning. And for bonding between them. I love this age because they are so eager to learn. Thanks for sharing this. Please keep me updated.

  2. Amy Julia, this is really, really beautiful. Your ability to articulate the fears and joys surrounding parenting in general–and parenting children with special needs in particular–is a gift to us all. Thank you for sharing.

  3. Lovely! My baby is no longer a little baby. She is a big 17 year old “baby” :)

  4. My son Christian has Down Syndrome. He will be 6 in October and he just started Kindergarten August 8th..He is doing so well, and the other kids just love him. Speach is one of our biggest challenges, but he called me Mommy the other day in the sweetest voice and I almost cried. We also, got potty trained two weeks before school started and praise God he is doing well with that. We are so blessed and I know you are too.

  5. My son Christian has Down Syndrome. He will be 6 in October and he just started Kindergarten August 8th..He is doing so well, and the other kids just love him. Speach is one of our biggest challenges, but he called me Mommy the other day in the sweetest voice and I almost cried. We also, got potty trained two weeks before school started and praise God he is doing well with that. We are so blessed and I know you are too.

  6. ColleenJBushnell says:

    This is exactly how I felt at the beginning, except my daughter Brylei had even more challenges. I have finally somewhat come to grips with the fact that Brylei has Down Syndrome and that there was nothing that I did wrong. Your story is quite inspiring. Thank you for sharing it with us.

  7. My son was also born with DS, he is 2 1/2 now. It’s really nice to hear stories from someone who has been there.

  8. My daughter also has DS and will be 3 next month. she just started early childhood preschool and she already has those teachers, therapists and classmates wrapped around her chubby lil fingers!! She is such a blessing and I would never trade her for anything! She has changed my life and me for the better!

  9. Kelly Poole says:

    My daughter Vanessa is 3 years old today. She has DS and is pure light, love and unending joy. She is a true blessing and I’m SURE we will learn more from her than any of our 4 other daughters. One day at a time ladies! We are traveling on the path less traveled…but what an amazing journey it will be!

  10. Missie Harrell says:

    Oh Amy Julia…Im almost as in love with Penny as you are just by reading your precious “mother” words. What a blessing you are to all of us who READ your love..I can only imagine how blessed your family is as they actually LIVE your love!!
    Missie

  11. nicole dhein says:

    Your story made my day today. I am a parent of 5 year old twins. They were born 5 weeks early. They are both doing great!!! I thank god for them everyday!!!

  12. I really enjoy reading your blog. My son just turned 2 and also just finished chemotherapy for AML. He is such a joy and the absolute delight of my life. I truly do not care about the Ds. Thank you for always finding the right words…

  13. My son Caleb will be five in November. I really appreciate your comments about how she “infuriates” you like her younger siblings. I think sometimes people have the impression that kids with Down syndrome are perfect angels; and to be honest, I do think of my son as my angel. But the other day, he locked me out of the house and stood in the skylight looking at me with a little grin on his face. Don’t worry, I just went into the house through the garage. I think, sometimes, not recognizing the typical age-appropriate behavior is an unfair prejudice kids with Down syndrome experience. What a shame: those are the things I celebrate the most! Thanks for your article!

  14. This describes my first year with my blessing Ryan who is now 10. He would look at me when I was holding him as a baby like he knew something that I just didn’t yet. I know now that when I am with Ryan I get to see the smallest percentage of how Jesus loves. Unconditional with open arms! I believe our children are just a sample of who Jesus is. Since Ryan’s birth I have decided to work on my Christian Counseling degree, I want nothing more than to love, minister and counsel parents experiencing that diagnosis,. The first time I sit or talk to anyone I quote Jeremiah 29:11 For I know the plans I have for you declares the Lord. Plans to prosper you not to harm you. Plans to give you a hope and a future. That means our children as much as the typical children. I love that I am changed because of Jesus and because of my daughter but mostly I am glad to be changed by my son. Penny sounds like an amazing little girl! Congrats on potty training at age 5. Ryan was in 1st grade before we got it down.
    Blessings to you
    Amy Troyer

  15. My daughter Haley has DS and just started 4th grade today. I love reading stories about other children with DS. They are the most loving and caring people in the world. I call Haley my gift from god. When I look at her it makes me appriciate the little things in life. Her speech is still delayed but getting better everyday. She has changed not only my life but our whole family. They are all amazing children.

  16. Thank you Amy for writing the letter about your beautiful daughter, Penny! Our son Nick is 21 and has Down Syndrome. They certainly are a gift that continue to teach us patience!

  17. Heather Seal says:

    Absolutely beautiful! I was sent to your blog by Lisa Morguess. Your publisher contacted her to read and review your book. I have an 8 year old daughter with Down syndrome who is fully mainstreamed in 3rd grade. It’s been the best experience but every new school year is full of anxiety and concerns. And every year Morgan shows me that she’s got this school thing all under control! Good luck with Kindergarten! It sounds like Penny is doing amazingly well and will have a wonderful year! Can’t wait to read your book!

  18. Heather Seal says:

    Absolutely beautiful! I was sent to your blog by Lisa Morguess. Your publisher contacted her to read and review your book. I have an 8 year old daughter with Down syndrome who is fully mainstreamed in 3rd grade. It’s been the best experience but every new school year is full of anxiety and concerns. And every year Morgan shows me that she’s got this school thing all under control! Good luck with Kindergarten! It sounds like Penny is doing amazingly well and will have a wonderful year! Can’t wait to read your book!

  19. It was wonderful reading this and look forward to reading your book! I have a grandson with DS, but i have raised him since he was 3months old. He is now 4 years old and feel I am struggling with myself since I feel I can’t trust others with him and I have now learned that i have hurt him myself due to the fact I can’t leave him for longer than 4 hours or he gets upset and cries for me. I have tried sending him to preschool didn’t work tried this year to send him to Pre-K but having difficulty with that. I am lost and honestly don’t know what to do to help him transition away from me, Any advice would be so helpful…..kim

  20. Rebecca Talley says:

    What a beautiful post. It sums up many of my feelings as well. I feel honored that God chose me to be my son’s mother. Out of all the mothers out there, he chose me. My son is 5. I am homeschooling him because I homeschool all of my kids for kindergarten and teach them to read. He is speech-delayed and we are working hard on potty-training. He has such a wondrous light about him, yet he is also very “normal.” I’ve learned that he is much more like my other 9 kids than not. Thank you for such sweet sentiments.


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