I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms and to be taken as compliments, I do not necessarily feel like they describe me.
One reason people have used these terms when referring to me is that I had cancer off and on for several years and got through it. Yes, having cancer while trying to remain positive for my daughter was a struggle. But there were, and still are, so many in my corner supporting and helping me.
It never upsets me when people use these terms, as they are trying to uplift me and acknowledge that this job is hard. But what I always want to say in return is, “You would do the same for your child.” I truly think that most people in my situation would handle it the same way. What parent doesn’t fight for their children?
When my husband and I realized that Abby’s decline over time had become more severe and that it warranted medical attention, it was scary. We knew that Abby didn’t have autism — it had to be more than that. She wasn’t losing language and cognitive ability and becoming incontinent because of autism. It was something more, and we were scared to find out what. But we knew it needed to happen. I will agree that this decision was courageous.
It would have been easier to live in denial and deal with the decline as it happened, but that wasn’t the right thing for Abby. Once we decided we had to seek out neurologists and possibly other specialists, and once we verbalized it and acknowledged it was bigger than what we could handle, we were morally responsible for finding out everything we could.
This meant that a monumental amount of time, energy, anxiety, and worry — and all that comes with those emotions — would have to be dedicated to this one thing. If you acknowledge something like this and do nothing about it, it’s cowardly and immoral, in my opinion. Was it hard? Yes. Was Abby worth it? Absolutely.
As I look back over my life Abby has occupied much of my time and energy since about age 2. She was an extremely hyper child and had to be watched every single second. Her oppositional attitude throughout her toddler and adolescent years was so difficult to manage. I often felt like I was crazy and inadequate as a parent. Her dad was a baseball and football coach while she and her sister were growing up, so I had lots of time solo parenting with them.
I say all of this for a couple of reasons. Firstly, it wasn’t autism, but rather Sanfilippo syndrome that was causing her behavior. When we discovered her true diagnosis, it was devastating, but it also provided me with a feeling of justification. I had been justified in feeling inadequate and anxious when raising her because she was a tough kid to raise! I wasn’t crazy after all.
Secondly, she was the kind of child that so many parents of small Sanfilippo children are raising right now, and I want you to know that I understand you. I get that you are overwhelmed. Our kids aren’t like other neurotypical kids. We can’t go to a restaurant and have a quick meal. Family outings, vacations, and even trips to the grocery store can be huge ordeals! People with “normal” children don’t always understand that.
Having said this, I still feel that these children are worth all the hard stuff we have to endure. They are full of love and deserve everything we do for them. I am not a hero because of what I do for Abby. I am doing what is right and what needs to be done — just like all the other parents of special needs and terminally ill children.
I want to end this column by recognizing parents who are heroes in my eyes. These are single parents who have to do this alone. Parents who don’t have someone else to “take a turn” when their child is up all night. These people must figure out how to make money to survive and take care of their children at the same time.
They are parents who don’t have close family nearby to help them out, or perhaps their family is nearby but unwilling to help. Or they have their own health issues or other difficult situations but are still expected to do what is necessary to help their special needs or terminally ill children. These parents deserve to be called heroes, warriors, fighters.
Parenting these children is hard enough when you have a wonderful support system. I cannot imagine having to do it alone. I would do it if I had to, but it would be tremendously hard.
If you know someone who lives near you and is raising a terminally ill or special needs child by themselves, reach out to them and see if they need help. They are the true heroes, but even heroes have to rest sometime.
Note: Sanfilippo News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.