Dear J

A LETTER TO OUR SON ON WORLD DOWN SYNDROME DAY

By Leslie Lakhia

Dear J,
You are a precious gift in our lives. You are only 5 months old, and together we’ve already shared so much love, joy, and learning!

It was one year ago today that I had a premonition. It was World Down Syndrome Day 2016, and I was 12 weeks pregnant with you. I was wiping tears from my face after reading a touching letter from a father to his daughter (on the occasion of her wedding day). The daughter sounded like a truly lovely person. She is adored by her father, that was for sure. She also happened to have Down syndrome.

As I thought about that young bride and her dad, a spark fired off somewhere inside of me. A little connection popped up in my heart. “Hmmm,” I thought. “Maybe I have something in common with this dad. Maybe our baby has Down syndrome. Huh.” I put my hand to my belly to touch you and took a deep breath. Then I quickly tucked that idea back where it came from and I did not think more about it.

A few weeks later that hunch was confirmed; You, now 16 weeks in-utero, had Down syndrome. This was big news. What did it mean? We did not really know. We researched to learn some facts.

The most strange and challenging information we came upon were the varying ways people felt about living with Down syndrome. Some people seemed to think it was terrible. Some people seemed to think it was doable. Some people seemed to think it was wonderful. How could people feel so differently?

I was very fortunate because I had a little knowledge to build on. One of my friends from college is mom to an adorable, funny, and smart five year old boy who also happens to have Down syndrome. Though she and I have not seen one another since school, we stayed in touch though Facebook.

It is this friend and her family that showed me what life for a child with Down syndrome can look like in today’s world. Yes, living with Down syndrome can be wonderful! Their son enjoys playing basketball and learning to read. He likes to dance and be silly with his big sister. He attends Kindergarten with his typical peers.

I knew that this kid has an awesome life and I knew this before you were diagnosed. His life certainly helped me have a great picture of what your life could look like. This information was a real gift!

Then I began to look around more. There seemed to be lots of kids with Down syndrome living awesome lives and they were growing into adults who studied, worked, made art, traveled, had vlogs, got married… These people were following their dreams. I felt so hopeful.

I then began to learn the scope of challenges you might face. I was very scared. I worried about your heart and about the speech delays you might face. I was most scared about the complications I did not yet understand. I wanted to know how we could help you.

I set out to learn about what living with a 3rd, 21st chromosome really means. It means gene over expression. I am still learning the science of this, but I began studying more to learn what we could do to help you: supplements, (Targeted Nutritional Intervention) Neurodevelopmental therapy, complementary therapies, medicines, kinds of tests we would need to run, what kinds of doctors would help, who the experts where and where to find them… (All my thanks to Dr. Nandita and Sethu for offering conscientious, dedicated developmental guidance and care – right here in Bardez, Goa! I know Sethu will be a great resource for us!)

J, sometimes as I researched, I found the possibilities of your future daunting and I’d cry. Sometimes I’d feel the possibilities for your future were so hopeful and I cried then too.

In the days and weeks after you were diagnosed my favorite place to find hope, was a post called Diagnosis Day on DownSyndromePregnancy.Org. The website describes the post as, “Reflections from other moms and dads who shared with us what they wish they could go back in that past and say to themselves on that diagnosis day.”

I would read and read these parents’ words and just cry. Talk about tears! Wow, lots of tears. But you know what, J? Most of those tears were the happiest tears I will ever cry. These parents had the most wonderful things to say! It was through reading these stories, that my heart began to get through to my head. “It’s gonna be ok,” my heart said. “Your baby is going to be perfect in his own way and this journey is gonna be so beautiful. Don’t you worry. Something very special is coming your way.”

I have happy tears and a big smile as I write just now, because you are here now and this IS how I feel!

J, I do still have fears and concerns too. There is A LOT for me to learn as your grow!! (This is where I thank you for helping me to be a life-long learner! Thank you!!!) Just now, things are really great. With help, we have figured out how to manage your minor health issues. Your heart is healthy (YAY!) and you are a very happy, chubby baby. You are hitting many milestones “right on time”. That is so wonderful and affirming, but as we move forward I am working to be emotionally prepared for you to progress at your own rate, while I still hold my expectations high and give you everything I can to help you develop! Whew!!! That sounds like a juggling act just saying it!

I do get nervous that I may not know all I need to know to help you. In my clear moments I know I will learn all I need to, in the right time. I am confident that I am surrounded by a great support network that is going to help me, to help you.

I feel secure knowing our family is a team. We are here for you and you are here for us and we’ve got each other, through thick and thin. I wouldn’t have it any other way!

We love you so very much!
Always,
Your momma

PS
Here is what I would say to my former self back on our diagnosis day:

“Don’t you worry about your son, Leslie. Yes! The baby is boy! And he’s so beautiful! There will be so much love around your little guy. Your best friend will name him The Peaceful Warrior for his grace, perseverance, and strength. There will be bumps in the road, but it will be ok. He has a steadiness to him and you will feel that he can handle himself. His smile will light up the room and he’ll flash it early and often. He’ll win hearts by the dozen.

Be excited! Along with your beautiful new child you are about to meet an amazing community of smart, thorough, dedicated, and very loving parents. They accept their children completely, but forge ahead in every moment to insure that their kids will grow to fulfill their absolute potential. These parents will teach you, inspire you, and lift you up! You will be so enriched by them and you will be so grateful to walk beside them. They will elevate your parenting game and both of your children will benefit.

You will grow! Along this journey your self-perception will evolve. You will learn early on- any day now- that you are strong. As you go along, you will find strength not only in yourself but in your relationships with with your son, daughter, and husband, and with your loved ones.

You will still worry when you think about the unknowns of J’s future, but you won’t worry that much more than you worry for your “typical” child. You will just have different concerns and questions. The world is full of unknowns.

Your home is full of lots of love and laughs. There will be tears too, but I can tell you this: the last time you cried, you held your son and you sobbed big tears of complete joy and gratitude. You were just so filled with love for your sweet baby boy!

And yes, he’s a regular baby, filled with cooing and smiles, burbs and susu (and yes, poopoo too). He has a gentle, sweet nature and he is all yours. You, your husband, and your daughter could not be more in love with him! Congratulations!!!

PPS
Here are the links to the Diagnosis Day post and the letter to the bride from her father:

Diagnosis Day

Letter to the Bride: