The Curler Coaster of Parenting a Particular Wants or Terminally Ailing Baby
Raising a child with special needs is a challenge. It’s physically demanding and emotionally draining. But it’s also incredibly rewarding.
Some days I feel like I don’t know and are not doing anything right, while others are positive and uplifting. This is the roller coaster parents of special needs children ride every day.
When my daughter Abby was diagnosed with autism as a toddler, I was forced onto this roller coaster, and I’ve been riding it for about 23 years.
I call it a roller coaster ride because of the ups and downs and the fear and loss of control while driving. A roller coaster can be both scary and exciting. It can make drivers cry, scream and laugh – sometimes almost at the same time. Dealing with children with special needs on a daily basis can evoke the same emotions.
When a child who doesn’t hit any milestones suddenly hits one, they’ll be delighted. Waiting longer for that child to do something their peers have been doing for months or years makes the achievement so much more special. And the smallest things can mean the most, like saying a new word, taking a step, or avoiding a tantrum when expecting one. These are the fun moments of the roller coaster, the parts of the ride that are full of happiness.
However, the scary bits are also sprinkled into the ride. The many meetings and calls from school officials reporting negative information about a child, including the fact that they are not up to standards. The lingering tantrums and resistance to anything that feels like anything a parent says. Having to crawl up monkey bars or play areas in restaurants to fetch a child who doesn’t want to leave. The numerous birthday parties to which she is never invited because she doesn’t fit in. And that doesn’t even apply to the drugs and therapies that never really help. It is conquering, and it wears a parent down over time.
In 2017 Abby was diagnosed with Sanfilippo Syndrome, a rare genetic disease that will eventually cost her life. This diagnosis led the roller coaster to go in a whole new direction. The ups and downs are different. And I know these will change over time as your health worsens.
Currently, the highs consist of days when Abby is happy and feeling good. Days when she says a few words more than the 5-10 she can still say. On these good days, she tries to sing more and her sleep is pretty good.
She has bad days when she doesn’t feel good or gets more frustrated than usual, but I can’t fault much compared to other families with Sanfilippo kids. Your bad days pale in comparison to what they are likely to be in the future. So I have to focus on the positives and enjoy the good days.
The bad days happen when I get caught up in the reality that it will keep getting worse. Although my goal is to cherish the time we have with her, I still get frustrated with her which makes me feel guilty.
Living with the everyday reality that an illness is slowly wiping out a child is heartbreaking. It forces parents to enjoy the moments that are usually dismissed as insignificant. But sometimes I’m still impatient. Abby’s independence has almost completely disappeared, which means that she is very dependent on her father and me. This sometimes leads to frustration for us, as I know that all parents like us have the experience. But we should cherish every moment and not take anything for granted. That’s when I get consumed with guilt. Living this paradox is difficult.
As I would tell any other parent in my situation, I need to give myself some grace. I am human and frustration is part of humanity. I can’t always walk around with a smile like everything is fine. But that’s fine. And parents with special needs or terminally ill children should know that it is fine for them, too.
I wouldn’t recommend this roller coaster ride to anyone. Losing a child is the most unnatural thing one can imagine. I have an incredible system of support from people around me who help me when I feel down or like I am “not enough”. I pray others will too. These kids need us to be able to withstand the ride.
Note: Sanfilippo news is strictly a news and information site about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always contact your doctor or other qualified health care provider with questions about any medical condition. Never disregard or hesitate to seek professional medical advice because you have read something on this website. The opinions expressed in this column are not those of Sanfilippo news or its parent company BioNews and are designed to stimulate discussions about problems related to Sanfilippo syndrome.