I’m about to make one of the biggest decisions of my life. What makes it all the more challenging is that it’s not a decision for me; it’s for my four-year-old daughter, Syona, who has cerebral palsy.
We recently visited a children’s hospital in the US to discuss a major surgery for her. I’m not ready to share the details yet, as my husband, Dilip, and I are still processing all the information we received. While we hope the procedure will significantly improve the overall quality of her life, it also comes with some very serious risks—and, as with any major procedure, post-surgery pain.
When it comes to my daughter, there are three steps I follow to help me reach a decision: 1. I get as much information as I can. 2. I allow myself time to emotionally process it all (this often includes an “ugly cry” in the car). 3. Together, Dilip and I make the most informed choice we can.
But in this case, I feel like I’ve switched up the order. We’ve completed #1 and I think we know the answer to #3, but I’m stuck on #2. It feels so overwhelming, and I keep coming back to the fact that I never expected to have to make these types of decisions for my child. That is what hurts the most: It all just feels so unfair.
I know I’m not alone. Every parent has to make tough decisions for their kids at some point. Other parents of kids with special needs make these sorts of decisions all the time (often in conjunction with their child’s medical team), like what medication to give their child, the right time to undergo certain procedures or the decision to let someone else care for your child because what they need is more than you can provide. All decisions are tough, and we do the best we can.
Over the past week, I’ve tried to shift my focus back to being grateful. Grateful that there are options for Syona. Grateful that I have a solid support system, both online and with family and friends. Grateful that my little girl is strong and shows me, time and time again, how wonderful life can be.
Down the road, we’ll talk to Syona about the surgery and make sure she is as comfortable and informed about what to expect as we can. I know she will have questions, and we will handle them as they come. For now, I’ve decided to let myself focus less on actually making the decision and more on taking things one step at a time. I’ll start by doing the one thing that always brings me clarity and joy: spending time with my daughter.
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