It’s been four years since we were told my daughter experienced a stroke, four years since she was diagnosed with cerebral palsy, sensory processing disorder and a speech disorder. The labels have added up- but we push to never let them define her. I have learned so much along this journey with my daughter and the most important lesson came from myself. Pride. I had to learn that I didn't have to navigate this journey alone.
Parenting is tough enough, and adding in medical complexities brings on an even bigger reason to build support. Any parent of a child with medically complex needs can tell you feelings will creep up, sometimes blindside you in a moment when you were not ready to take them on or even admit they exist. Sometimes there is a trigger, sometimes more than one. For me, an emotional day of medical tests, regressing in therapy or a conversation with our insurance about the re-occurring question of “is this medically necessary?” will send me spiraling through the emotions. Years of defending my child and advocating for her needs through the red tape brings out the worst, brings out the isolation. The simple truth is, as her mom, I will always be advocating for my daughter and working through so many feelings, but I certainly don’t have to do it alone.
Nobody likes to talk about the hard days because it isn’t pleasant. You find yourself worrying what others may think if you were honest. Admitting it’s hard does not mean you are ungrateful or love your child any less. It doesn’t mean you have failed, yet as parents, we all feel we have to defend ourselves and our love when we admit to these feelings. We don’t.
It should go without saying. It hurts so much because we love our children. Because we want what’s best for them, and getting there is not simple. I removed the veil of perfection a long time ago when I realized these feelings are OK to have, that they happen and that talking real with someone that has "been there" helps you to get a handle on them.
I was never prepared to be this mom and some days I do feel as if I am failing at it, but I’m still here. I can admit when the days almost feel impossible. I can cry when I need to and no longer feel the shame in it. I let the thoughts, emotions take over just long enough to bring me full circle to where I need to be to forge ahead better. But I had to learn to do it with help, with support. I had to get vulnerable in knowing I couldn’t do it alone.
We simply weren’t meant to do this alone.
We were meant to celebrate successes and milestones just the same as we were meant to speak of the difficult times, with someone who gets it. My village may not be the same as yours, and that’s OK. Mine is filled with face-to-face conversations with doctors and therapists who care about my child, friends and family, who take the time to understand more and be supportive. My village also consists of those I have come to know and value through online support pages, families I may never actually “meet” but I know them, and they know me and these relationships have become vital. I can without a doubt admit that this support has helped me be a stronger, healthier person for my family.
I am grateful to have these people’s stories even if it is not completely identical to my world. There are connections through it all. While I navigate the world of stroke with my child, someone else navigates something entirely different. Real life can be beautiful and messy all at the same time , but the simple truth is we never have walk through it alone, and we shouldn’t.