05 Aug Don’t Get Stuck in the ‘It’s Not Fair Line’
When you have a child with special needs, the list of things that aren’t fair can seem nearly endless.
It’s not fair that:
- My daughter can’t walk or talk.
- It’s difficult for her to qualify for physical and occupational therapy that could improve her quality of life.
- Toys designed for kids with special needs are usually three times more expensive than ‘regular’ toys.
- Our family has missed lots of fun things because we had to do not-fun things, like doctor appointments, hospital stays or even just provide the time-intensive day-to-day care my daughter requires.
- The busywork of managing my daughter’s care, such as making appointments, going to appointments managing medications, advocating for services and coordinating with school, is work that is thankless and never-ending.
- It’s really, really hard for us to do family activities that other families take for granted (like a family bike ride).
The list can go on and on and on.
When our daughter was just a few months old, it was already obvious that she had profound disabilities and complex medical challenges. During those confusing and scary early days, my husband said something that has become a sort of family motto for us.
“We were in the ‘it’s not fair line,’ and it wasn’t going anywhere. So, we moved on.”
Those words have changed my outlook on dealing with the myriad of challenges that are a part of raising a child with special needs. There are so many opportunities to get stuck in the unfairness of it all. And, there are just as many opportunities to look past the unfairness to find acceptance and empowerment.
What does that look like in day-to-day life? The photo of Julia and Erica on one of our family bike rides is a perfect example. It’s not fair that Julia can’t ride a bike on her own. But, that hasn’t stopped us from taking family bikes ride. My husband built a special bike trailer so that Julia can join us, and she LOVES it!
I know how easy it can be to get in that line over and over again. Over the years, I’ve been infuriated by the lack of services our school district was willing to provide for our daughter, heartbroken to be faced with yet another hospital stay, frustrated by the bureaucracy of insurance, and overwhelmed by the medical complexity of my daughter’s condition.
But, there is nothing to be gained by getting completely stuck in the ‘it’s not fair line.’ Instead, I focus on finding strategies to face the situation head-on. Sometimes that requires advocacy, such as working with the school team to find a better way to meet my daughter’s needs, making sure that they understand that I will fight to protect my daughter’s rights. Other times it requires a sense of gratitude; we may be facing a hospitalization, but we’re lucky to have friends and family that provide support during our most difficult times. It could be patience and persistence that’s required, especially when dealing with insurance issues. And, focusing on building a talented and compassionate medical team for our daughter has made it easier for us to face the medical challenges.
My daughter’s disability is not fair. No child should have to deal with the daily trials she has to face. But, I’ve chosen to seek acceptance and search for empowerment. To do anything less would be even more unfair to her, and unfair to myself. Because the ‘it’s not fair line’ doesn’t move, it’s up to me (and the rest of our family) to find another way to make forward progress.
Please try this strategy in your own life. The next time you are in a situation that just doesn’t seem fair, try to find a way to get unstuck. Look for ways to empower yourself and your family so that you can get out of the ‘it’s not fair line’ to find your own different kind of special.