Overcoming Diagnosis and Finding Hope

Advice for Parents with Special Needs Babies

Sometimes I think about the people who have been angels of a sort to us. Right after we found out my daughter had the chromosomal abnormality, we met one of the angels. We had just spoken with the geneticist that day and had received the devastating news. I felt like I was moving in slow motion through a fog. I couldn’t even fully grasp what was going on around me. Those days in the ICU all feel foggy, but when I think of that day in particular, it seems like I view the memories through an outside view, as though I wasn’t even there. I think of it, and it’s like looking through a smudged window at someone who looks like me trying to accept the news “Your baby has a problem”.

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So the day after we received the news of her abnormality, my daughter’s nurse was a soft spoken woman with a kind smile, a few years older than me. While she changed my daughter’s IV, and I tried to stay out of her way, I broke down crying again. She told me when she was a teenager she got pregnant and the baby had a chromosomal abnormality. The doctors told her that her daughter would never talk or walk, never potty train, would barely move her body and maybe wouldn’t even know who her mother was. Skip ahead 16 years or so. Now her daughter is enrolled in a public school and attends regular classes. She certainly walks and talks, but more than that – she has lots of friends. She loves to read. She loves listening to music. She struggles in school and her grades are average but she gets by. The nurse smiled and said, “She is excited about going to prom. We’re going to buy her a dress this weekend. She has a date!” In other words, this girl is a typical teenager. The diagnosis was not the end of the world.

Later I met a woman whose grandson has one of the same diagnoses as my daughter, agenesis of the corpus callosum, which means they are both missing the primary connection between the two halves of the brain. I believe he has some other diagnosis as well. The woman was so proud of her grandson because he was getting ready to start college. He also had struggled in school, and his family chose to homeschool him for a while to try to meet his needs better. When I met him, he was polite and friendly, with a good sense of humor. He seemed a little socially awkward to me, but no more awkward than a lot of young men that age. He had some trouble walking, and I was told he needed surgery on his leg muscles, and his speech sounded a little different, but for the most part, he seemed like a typical high school senior. His mother has been told the same stories of doom that a lot of us have heard from doctors. All the list of things he will never do. He is proving them wrong.

I know that not all of our kids will reach the level of development of the two people I mentioned above, but I think it goes to show you that we have to keep our hope. We can’t give up or listen to the people who tell us everything our children won’t do. The only ones who will show us what they can do are our kids.

For me sometimes it’s really hard to keep hoping, because hope hurts. It hurts to keep on dreaming and hoping your child will make a milestone or say a new word or take a step or take a bite or read a word or all the other things we hope for only to be disappointed time and again. Having a child with special needs is a million little heartbreaks. To get up and every day and tell your broken heart to keep believing just seems like too much sometimes, but I think we have to keep hoping. If we don’t hope for our kids, how will our kids learn to hope for themselves and push themselves beyond their own limits?

I think one of the gifts our children give us as special needs parents that is we truly appreciate every, itty bitty little advancement they make and every little good thing. When my daughter makes a new sound, it’s like a party at my house! When she passed a toy from one hand to the other, mom and my sisters and my friends all got phone calls! When my daughter banged on her high chair tray, we got out the video camera! When she claps, I yell for my husband to come see and we laugh and clap with her. Every time we get her off of a medication, we cheer! When she laughs and enjoys something, it makes my whole day worth it. I think it’s something really unique about families with a special needs child and it’s what really makes our children special. Even though we have more heartbreaks, we have more joys too, because if anyone knows how to appreciate the small things, it’s us. That’s the great gift our children give us.

Please comment below and share your experience with us, or give us a feedback about this article. If you think some tips are not included here, please let us know so that we could share them with the rest.