I think the hardest thing for any parent of a child with disabilities is the daily struggle. My child has autism, epilepsy, and other health issues that keep us hopping. Just when one thing is settled down, another one shows its ugly face.
The seizures will be under control for a few weeks and then bam, the asthma is terrible and we are back to square one. The cycle is never ending for all of us. But I have learned that you can't stay in the pity cycle. You have to find the good, the happy, and the bright lights.
I remember for months telling my son about the stars, sun, and the beautiful moon while we would be driving. Months later, while I was taking him to school, I heard my child (who never seemed to notice his environment and certainly never talked about it) proclaim, "Look at that beautiful sun, Mom." I truly wanted to stop the car, jump out and scream to the world that my baby just noticed the sun! Instead, I looked at him in the rearview mirror, smiling as he looked out the window.
Then a huge tear fell down my cheek. Yes, Jackson was right. That sun was beautiful at that very second of that day, and I needed reminding that something so simple to anyone else was really important to Jackson.
The one thing I am grateful for is that with his disabilities, I don't think he knows how different he is. I have cried buckets of tears listening to kids and adults talk about him at various places or make fun of him.
Now I cry because I think they are the ones missing out on such a wonderful kid. The good in this is I know how special he is and he knows how to brighten up a room with his smile, his laugh, and silly personality.
The thing that always helps me get through every day is knowing that I am truly blessed to have been given this child who has meant the world to me and my family and that there is always someone worse off. He has truly made our world wonderful and blessed us many times over.
The Family Support section offers lots of information and ideas for finding and sharing support.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.