How I Dealt With the Initial Grief of Having a Child with Special Needs

When you become pregnant, something magical happens. You become protective of this teeny, tiny person that you have never met. You do everything in your power to make sure you are eating healthy, exercising, taking your prenatal vitamins, etc.

You begin to listen to your body in ways you never thought possible. You begin to understand the real meaning of unconditional love.

With my youngest, I did everything to ensure a healthy baby. I went to every appointment and got every ultrasound. She was doing great. Strong and healthy. Four weeks before my due date I noticed a change in her movement. I figured, since it was a Friday evening, I would see if everything got better over the weekend and if nothing changed I would go in Monday morning. I waited 3 days. When I made it to the doctor and got an ultrasound, my baby was in distress. I was told to walk across the street to the hospital and prepare for an emergency C-section.

That was one of the longest walks of my life! I was all alone about to deliver my baby. I started to wonder if my waiting  had made things worse.

After the C-section I didn’t get to see her. She went to the NICU and was diagnosed with Down Syndrome and pulmonary hypertension while I went to my room. When I was finally able to see her she was gray, her lungs weren’t functioning on their own, and I wasn’t even allowed to touch her. I wanted to grieve. But there were other mothers around me. And some of their children were dying. What gave me the right to mourn a child still living?

Six weeks later she was able to come home breathing on her own, but then it hit me that now I have a child with Down Syndrome. I was so concerned at birth about her survival that nothing else mattered. I didn’t mentally prepare for a child with Down Syndrome. Life suddenly became filled with doctor appointments, therapies, home visits, meetings, paperwork, medical tests, etc. And I still had a daughter with autism to care for.

Nobody prepares you for this. I was still grieving the child I thought I would have. I was grieving the fact that I may never hear her say mommy or that she would have developmental delays. I was grieving over my life that now had become a to-do list. I grieved for my other children because their lives changed dramatically as well. I cried myself to sleep at night. I grieved because there were mounting medical bills that I couldn’t afford to pay; I knew there had to be resources in the city but I was afraid I wouldn’t qualify for them because I still worked full-time. Life was heavy. 

During this time, I was building a more intimate relationship with God. Praying and reading scripture allowed me to see the bigger picture. My faith began to take over my grief. God showed me the big picture. My baby was blessed. She was here. Yes, she came with extras but aren’t all kids extra? She was Norah first, my beautiful daughter second, and then she just happened to have Down Syndrome. I developed a heart of gratitude. I began to speak positively about my life and our circumstances. God made me realize just how much we needed her. Norah brought us closer as a family. She made me understand that each day is a blessing…be grateful. I feel an immeasurable amount of joy knowing that God chose me to be her mother. We celebrate her accomplishments in her time. I don’t do comparisons. And guess what, she says mommy in sign language and that is one of the most beautiful signs in the world. 

I still have those days where I cry. Life still gets heavy at times, but I can pull myself from under that veil of grief with prayer and words of encouragement. I wouldn’t trade Norah or her sisters for anything. They each bring something unique to my life. There’s something about that unconditional love. 

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