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Letter To Special Needs Parents

Milford mom Angela M. Shupe shares advice she says she wishes she'd been given when her daughter was diagnosed 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 news that our daughter, Sofia, had Down syndrome. We've learned a lot over the years and are continuing to learn as we go. Parenting is a personal journey, yet after hearing the stories of other parents of children with special needs, I realized we share many things in common. A common thread running through their stories, as well as our own, is that the future for our children and for your baby can be a bright one, full of hope and joy.

Dealing with the diagnosis

It's never easy to receive a diagnosis about a loved one. And that may be exactly where you are, if you've just received news about your baby. When my husband and I were first given our daughter's diagnosis, we were in shock. The diagnosis was 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 further from the truth. Your little one is a child like no other. He or she has a unique personality, quirks, talents, strengths and weaknesses. Your son or daughter may have been given a special needs diagnosis, but he or she is 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.

A little heartbreak is normal

You probably feel overwhelmed – and maybe 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 his or her diagnosis or by any statistics thrown your way. Just as their lives are not defined by a diagnosis, neither is yours. 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 children are diagnosed with an illness, we grieve over the illness, 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'd 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 that time, but do what you need to stay focused on the positive.

Living in the moment

As I've walked this journey over the last six years, I've learned how important it 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.

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