When I was pregnant, I was told that my son would be born with holoprosencephaly – a very serious condition that most children don’t survive. In fact, so few children survive that I really didn’t know who to turn to for help.
My son, however, did survive birth and he’s seven years old now. While I couldn’t be happier with my son Nathan, the months leading up to his birth and for some time after that were incredibly stressful for me. Even the perinatologist I was working with didn’t know where to direct me for support after Nathan was born because almost every child with Nathan’s condition dies before or at birth.
It was a tough time for me, but I eventually did find some help. That’s why it’s so important for me to share ways that parents can get support for themselves and a child with special needs – even when the medical community doesn’t have any advice.
One of the first things I did after having Nathan was to try to find an online community to get some answers from. While I couldn’t always find people going through the same thing since it was so rare, I did manage to find a Yahoo group of parents with similar problems and concerns – all at various stages of their child’s life.
This was incredibly helpful because I was able to ask specific questions that only other parents of children with special needs could answer. It was also wonderful to be able to have the ability to share information with others as it came to me – to help other parents of children with special needs.
No Stones Left Unturned
After Nathan was born we tried literally everything we could to help him get better. We tried everything the regular doctors said and we tried alternative therapies all over the world. We even tried experimental therapies that other families hadn’t at the time.
While some therapies were beneficial for Nathan, many were not. However, we felt like we had to do everything we could to help him and improve his quality of life since he couldn’t do it for himself.
Teaching Other Parents
The longer we tried experimental therapies and looked for ways to help Nathan, the more we learned about what can be and simply is not beneficial for children with special needs.
For us, it was important to share that information with other parents. We were able to provide valuable information the special needs community and answer difficult questions for parents in the same boat because we’d tried new therapies and treatments and did things others hadn’t.
That’s incredibly valuable to other parents and families. Even though sharing what we learned didn’t impact Nathan, we feel like it’s a huge part of having a child with special needs. Doing what you can to educate others is essential, and it’s a responsibility many parents in the special needs community feel and share.
Many of the doctors we worked with helped Nathan quite a bit or at least put us on the path toward helping Nathan. However, most doctors still go by the book first – that children with Nathan’s condition will die and can’t live past a certain age.
That’s why it’s so important for us now to share our son’s story with doctors – not just parents. We love educating any medical professional that will listen about what we did so that children who share Nathan’s needs won’t be written off because of what a medical book says.
Again, for us, this is about responsibility and supporting other children with special needs as well as our son.
Having a child with special needs is not easy, and there are still trying days and upsetting times. However, what we learned is that parents should never give up because of what a doctor or even a team of doctor’s says.
For us, the online community was hugely important, as were the experiences of medical professionals around the world. As a mother of a child with special needs, I feel like it’s my responsibility to not only help my son, but the whole special needs community – even if they don’t share Nathan’s condition.
Marcela De Vivo is a freelance writer and mother of three in Southern California, the oldest of which suffers from cerebral palsy. She is committed to helping him and others with special needs live the best life possible. You can read more of her journey on PrayForNathan.org.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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