A Letter to New and Expectant Parents of a Baby with Down syndrome

Congratulations on your new baby! Whether you’re an expectant parent or you’re holding your newborn in your arms, your child is precious and is a gift to be celebrated. Six years ago, my husband and I received the news that our daughter, Sofia, had Down syndrome. We’ve learned a lot over the years and are continuing to learn as we go. I hesitated to write a letter to new parents, because this is such a personal journey. But after reading numerous accounts from other parents, I realized we seem to share many things in common. It’s my hope to encourage you as you begin this journey. The future for your child and your family is a bright one, full of hope and joy.

I don’t think it’s ever easy to receive a diagnosis about a loved one. And that may be exactly where you are, if you’ve just received the news your baby has Down syndrome. When my husband and I first received news that our daughter had Down syndrome, we were in a kind of shock. Her diagnosis was presented to us framed in the most negative light possible. Statistics, numbers, and other possible future diagnoses were thrown around, as if there were nothing positive, nothing hopeful about the baby I was carrying and her future.

Nothing could be farther from the truth. Your baby is a baby like no other, in the sense, that he or she has a unique personality, quirks, talents, strengths and weaknesses; all that make any child unique. All children are special. Your son or daughter may have an extra chromosome, but they are just as special as any child. And the love you feel for them will undoubtedly grow into something fierce, as you get to know them.

Being Overwhelmed and Heartbreak

You probably feel overwhelmed and may be fearful over what the future holds for your child and your family. It’s normal to be considering what might be. Know that your child’s future isn’t defined by their diagnosis or by any statistics thrown your way. Just as their lives are not defined by an extra chromosome, neither is yours or your family’s. Before my daughter was born, I remember wondering if ‘life as we knew it’ would be over. It wasn’t. If anything, our lives have been enriched in ways only possible because of Sofia. She is a joy in our lives.

You may be facing great discouragement and heartbreak. Grief is a normal part of receiving a diagnosis affecting someone you love dearly and for whom you’ve waited and planned. It is not disloyal to your child or unloving, as a parent, to work through this grief. As parents, if our already born child is given a diagnosis, we may grieve the diagnosis, but our love for our child doesn’t change. Give yourself a break. Allow yourself time to grieve. Allow your heart to heal.

After my daughter was born, I was surprised to learn how many parents go through a time of grief, as I did. Many talk about grieving over the loss of the child they thought they’d have. I could relate. At a certain point after receiving my daughter’s diagnosis, I realized I was also grieving over my lost dreams for her. I soon realized there would be new, hopeful and joy-filled dreams for her; dreams she’d have for herself, which were no less meaningful and maybe even more meaningful.

I was very aware that family and friends were grieving, too. I found I needed to give them the space to do just that. Everyone grieves differently. Allow them to, but do what you need to do, as your child’s parent and primary caregiver, to stay focused on the positive.

Live in the Moment

As I’ve walked this journey over the last six years, I’ve learned a few things and continue to, as time goes on. One important lesson I’ve learned is to stay in the moment. Don’t miss the joy and wonder of each day with your new baby by getting caught up in the future. Many of the things we were told might happen with our daughter never happened. It’s not worth wasting precious time you have with your baby on things that may never see the light of day. Enjoy your baby! Your son or daughter is a little miracle. They grow quickly and the baby days will soon be cherished memories. I was so excited when my daughter was born to finally get the chance to get to know her. I remember holding her for the first time. She opened her eyes and smiled at me. It was a moment I’ll never forget.

Therapy & Development

Caring for a child with Down syndrome does have challenges, but there are challenges in raising any child. There have been therapy sessions to attend and extra doctor’s appointments, particularly early on. Sofia has had occupational, physical and speech therapy through our public school system and privately, as well. The team of people who’ve worked with her over the years are some of the kindest, most compassionate, generous people I’ve met. Their involvement with Sofia has not only helped her with her development, but has enriched both her life and ours.

One of the first people I met through the Early Intervention program at our school system gave me an essential piece of advice. “You are Sofia’s mom and dad, not her therapists. Your job is to love her.” She was right. You are your child’s parent, not their therapist. Being involved and helping in your child’s development is necessary and even fun, not to mention, rewarding. But it’s easy to get caught up in development. Early on, I learned that Sofia learns at her own pace. Yes, her development has been delayed, but it’s been steady. Working hard to help her, I’d find myself getting discouraged when she hadn’t reached a particular milestone. It never failed that soon after, she’d reach it; on her time.

No two children, typically developing or those with an extra chromosome, develop at the same pace. Each child is different. When those milestones are reached, we celebrate. When Sofia took her first steps at physical therapy, her older brother and I were so excited for her, we leapt off the mat, clapping and woo-hooing. Our excitement took her by surprise and she nearly lost her balance. We’ve learned to try to contain our excitement, but it’s there. She’s now grown accustomed to our cheering, so much so, that she sometimes seeks it out with a grin.

Ask for Help

If you feel yourself becoming overwhelmed, don’t be shy about asking for help. You are not alone. There are people who genuinely want to help you and your child. People you already know and people you’ve yet to meet. Be specific about your needs. Be open to receiving help when it’s offered. It’s not a reflection of you or your parenting to take someone up on their offer to help. People in Sofia’s life, who have real relationship with her and enjoy her friendship, enjoy spending time with her. I’ve been moved by the number of people who genuinely love and care for my daughter. Their lives, like mine and Sofia’s, have been enriched by these relationships.

Seek out people who’ve walked the same road and can offer you assistance, advice or even just a listening ear. Where we live, there is a group for parents of kids with Down syndrome. Just meeting other parents who share our experience has been encouraging and helpful. Make sure to check out any local resource groups in your area. Most major areas have local associations where you can meet other parents of kids with Down syndrome. Also, many local churches have special needs ministries that can be a wonderful resource for parents and families. Take advantage of what is available.

There are also many helpful resources online for information and support. The National Down Syndrome Society (NDSS) is a national advocate for the value, acceptance and inclusion of people with Down syndrome. They have many great resources available to parents on their web-site at http://ndss.org. Among the resources is the NDSS’ campaign called My Great Story, a collection of inspiring stories of individuals living with Down syndrome and their families.

The National Association for Down Syndrome (NADS) is another great resource for parents. NADS is one of the oldest organizations in the country providing support to individuals with Down syndrome and their families. Although, NADS is based in the Chicago area they offer a wealth of helpful information on their web-site.

My Daughter: Sofia

These last six years have been nothing like what I expected. A journey in the truest sense of the word, full of ups and downs, but one that has been and continues to be filled with more joy than I could ever have anticipated. I’ve grown both as a person and as a parent, because of my daughter. She is a blessing in our lives and I wouldn’t change a thing.

One of the most popular posts on this blog is Meet Sofia. If you’d like to read a bit about my daughter, you can here.

Be encouraged. Your child is a blessing and as you get to know them, I’ve no doubt that you too will be blessed. Congratulations! Celebrate your little one!