Last month, something remarkable happened: The anniversary of my five-year-old daughter Syona’s diagnosis came and went without notice. Although I remembered she was diagnosed with cerebral palsy in the month of August, I could no longer recall the exact date and had to do some digging to confirm it was indeed on August 19. I thought back to previous years and how that date was such an important milestone for our family. While Syona’s diagnosis was a game-changer, her needs are now simply just a part of our daily routine. Although I’m no parenting expert, I thought I’d share what I’ve learned with those of you who may have just received an unexpected diagnosis for your kid.
1. Grieve. As the parent of a kid with special needs, you’ll grieve—a lot. You will cry for the baby you were expecting, the missed milestones and the unfairness of it all. But remember that all of that is OK. Take all the time you need to process your grief.
2. Celebrate. Look for moments of joy in your daily routine. Even during the darkest days, they’re there. Sometimes it’s the sound of your child’s breathing; other times it’s a certain look in their eyes. Sometimes they’re small moments that seem inconsequential at first; other times they’re huge milestones. Celebrate them all.
3. Build your village. Our village includes relatives, longtime friends that have stuck by us, and new friends—from our special-needs community and elsewhere—who embrace my family’s reality. They’re people who are comfortable seeing us at our best and our worst.
4. Accept help from others. This includes connecting to service systems that support you and your family. It involves taking people up on their offers to lend a helping hand. Most importantly, it means raising your hand and asking for help when you feel you need a break from it all. It can be difficult at times, but it makes a world of difference.
5. Choose happiness. Most days I wake up and choose to be happy. I try to focus on the positive. When I find myself spiralling into the negative side of things, I actively do something to break that cycle. Yes, there are days where I’m down and very little can lift me up. That’s normal. However, when those days come I allow myself time to work through those dark feelings and wait for it to pass. I’m always striving towards happiness.
6. Lean on your partner. If you’re lucky enough to go through this with a devoted partner, find a way to keep that relationship strong, especially during trying times. Realize that aspects of your relationship will change, and that’s OK. Allow yourself to be vulnerable with each other, and honest on those days where you need a little extra emotional support.
7. Have fun. My daughter uses a wheelchair. This isn’t a tragedy; it’s simply how she gets around. We love dancing, even when she’s in her wheelchair. Sometimes people stare, and sometimes people join us. Regardless, we always try to have a blast.
What advice would you share with parents who just received an unexpected diagnosis for their child?
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.