Each year, I look forward to Syona’s birthday. It’s a day we warmly embrace, given her challenging start to life. This year, I’ve started thinking about what I wish I’d known when Syona was first born.
Here are some of the things I’d want to tell myself four years ago:
You and your daughter are both stronger than you could have ever imagined. When things seem insurmountable, take a deep breath and follow your instincts.
You will sleep better in the “parent room” while your daughter is in the hospital. You will cherish the routine of changing her diaper and feeding her through a tube more than you would ever expect. And you will feel so much joy on the day she drinks from a bottle and has her feeding tube removed.
Learn how to ask yourself if you have enough. When the answer is no, figure out how to change it.
The car will become a very important place for you: It will be where you process many difficult thoughts—but make sure you always have tissues handy. But it will also be a place to spend hours singing songs and having funny conversations with Syona. Oh yeah, and carry wipes. Lots of wipes.
Syona really is the perfect name for your daughter. It means “rays of sun” and she truly will be the light in your life.
Each year, her birthday will bring up so many mixed emotions. You need to remember to be kinder to yourself on the days leading up to her birthday and during the days that follow. Actually, remember to be a little nicer to yourself in general.
Start a happiness list ASAP. Use that as often as you need to.
Your child, like any child, will completely change your world. You’ll alter your motivations and work really hard to ensure that the world accepts and embraces kids like her.
Syona’s journey is hers alone. The story of your experience as her mother is yours alone. That is what you will—and should—share with others.
Syona will introduce so many amazing people into your life.
You know how you’re a perfectionist? That won’t change. But your perception of perfection will change completely.
You have as much patience as you need.
Accept as much help as people offer. You can’t do it alone. Learn this early on.
Get comfortable with “not knowing” an outcome. It takes time for a diagnosis. It takes even more time to know what your child’s abilities will be down the road. In many ways, waiting is a good thing. It helps you process and get ready for the next step.
Wheelchairs are not as daunting as they seem.
Life is filled with joyful milestones. Sometimes these moments are different from what you expected, but they are still incredible.
Most importantly, have faith. You are exactly who your daughter needs as a mom—whether you’re at your best or at your worst. Life is good.
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.