You just learned your baby has Down syndrome...

Jennifer Graf Groneberg is the author of the book Road Map to Holland. Her book is widely known in the Down syndrome community as a "go-to book" when a diagnosis of Down syndrome has just been given. I read the book when we first found out about Bennett, over three years ago.

At the time, I took what she wrote to heart, but I confess I never returned to the book once he was born. But when I read Jennifer's crib sheet on understanding a diagnosis of Down syndrome, it made sense that her advice and thoughts were much like mine.

Read and print out our crib sheet on parenting a newborn with Down syndrome now.

I often receive emails from moms whose children have been newly diagnosed with Down syndrome that find our blog. They are reaching out, looking for hope. They want to know if what they are feeling is "normal," if the feelings they are having about their baby with Down syndrome will change. I love receiving emails from these people, because I was just like them at one point. I was the one looking for hope, wanting to know if there was light at the end of the tunnel. I know exactly how they feel, and I'm thrilled to tell them that I think their feelings are totally normal and that it does get better!

Mourn the Child You Don't Have So You Can Celebrate the Child You Do Have

Much like Jennifer suggests, I would tell you that you have to mourn the child you thought you were getting, because in your heart you feel as if you've lost that child. Dreams you may have had may not be possible, and plans you made may not seem like they can ever happen. It can be even harder when the diagnosis comes after the birth instead of during the pregnancy, because you were not prepared for the news.

We found out before Bennett was even born, and I literally felt like the baby we were supposed to have was taken away from me at 17 weeks and someone gave me this new one to love instead. Where on Earth did my other baby go? What happened to my dreams for that baby? I couldn't even give this new baby the same name, because at the time I felt as if he was a different baby. You feel like everything you planned and hoped for just went down the drain. It was devastating at the time.

After I mourned the child I didn't have, I realized that the child I was given was always the child I was meant to have. This child was always meant to have Down syndrome. I believe God did this not to hurt us, even though it can cause a lot of pain, but to truly bless us.

Share the Diagnosis

I also encourage you to open up about your child's diagnosis. As Jennifer points out, you set the tone for how people will approach this diagnosis. Friends and family want to know how to act around you, so tell them! If they see that you are OK with things and encouraged by this little life, they too will feel more comfortable to reach out to you and show love towards your baby. On the other hand, if you let them know that things are still really hard for you, they will know to comfort you. If you are avoiding the topic, others will not know what to do or say.

The Support of Support Groups

Some people can enter into support groups or intervention services right away, but others find diving into these services overwhelming. It totally depends on if the mother is still pregnant or if the baby has already been born. This is why I think it's crucial to go through that first step of grieving if you are still having trouble coming to terms that your child has Down syndrome.

Some Extra Advice

The best advice I can give is that right now, you just need to focus on cuddling, kissing, loving your baby just as you would any other baby. Babies with Down syndrome have the exact same needs as any other babies. Remember, they are babies. They are not five years old or 15 years old or 30 years old. The immediate concern is to take care of their infant needs.  And then when the fog has cleared, you must know that you are going to experience the biggest joy of your life.

What are your thoughts on Jennifer's advice? What would you tell a mom who is just finding out her child has Down syndrome?

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