How Does She Do It?
“I don’t know how you do it.”
I get that a lot. It’s really a question disguised as a statement because it floats into conversation as if it expects an answer.
I’m often puzzled by this comment, as well, wondering what anyone else thrown into my position would do. I was never given a choice on whether or not I’d like to fill this role.
It also makes me wonder: Does anyone outside of my closest friends and family and our team of providers really know what “this” is? What is it that I do that leaves you in awe? What do you think I do?
I’m a mother to an amazing three-year-old. I’m a wife to a supportive and hard-working husband. Our son was born three months early and has encountered complications associated with his prematurity, including developmental delays and cerebral palsy. Because of this, I’ve also taken on the role of a caregiver, advocate, nurse, therapist, all while working from home full-time.
I’ve gotten to be quite skilled at multi-tasking, so I maybe “I don’t know how you do it,” is an understandable statement. I usually respond with an answer that anyone else would give. Answers like, “Oh, stop that!” or “I really don’t do all that much!” come to mind.
But maybe it’s time to tell the truth.
I’m tired. I’m stressed. I’m anxious. I’m overextended. I’m burnt out. Most days, though I’m completely drained, I can’t sleep and just stare off into nothingness, worrying about what I haven’t done and about the things I have done that weren’t done “right.”
But how I feel and what I do is nothing compared to what my son goes through.
Yes, I go to all the doctor’s appointments and therapies. I’m responsible for scheduling, organizing, and tracking, but I’m not the one doing all the work or getting poked with needles and going through test after test. My son is.
As a parent, you would go to the ends of the earth to protect your children. I hope that you never have to, but I don’t have a choice. I fight for him to have a better life every single day. If that means I don’t sleep, I stress too much, I’m not who I “used to be,” or I seem distant, then so be it.
I see life so much differently now, because of this life. I’ve seen pain, struggle, and I’ve looked death in the face, but I’ve also encountered true courage, love, and strength. I’ve also witnessed prejudice and ignorance, which pushes me to fight even harder. I’ve realized that some people only see him for his disability, but I see Flynn. A child – he is still a child after all, though he faces a mighty battle – who loves superheroes and Halloween, who has a zest for life that most grown adults don’t possess. I consider myself lucky to have a perspective that I wouldn’t otherwise have had, one that has gifted me immense appreciation and gratitude.
It’s hard to put into words what it feels like when you finally acknowledge your child’s diagnosis. It’s a long road to acceptance, but eventually the hopes for your child’s life that you had pre-diagnosis disappear. And through your grief of that “loss” your vision of what their life will be changes.
You still never give up hope that they will live a long and happy life, but you come to terms with the worst-case scenarios, as well. And what really keeps me going are the “tiny” victories – the milestones achieved that we were told would never happen, the things that would have gone undetected if everything was “typical.” It’s a small glimmer of hope that makes you believe that anything is possible if you just fight for it. It makes you realize that this life is not about timelines and measured successes but seeing the joy in your child’s eyes.
There is no time for self-pity or rest. The clock isn’t on our side, time doesn’t stop moving and there is a lot to do each day and so little time to enjoy the happy moments.
So, to sum up “how I do it”: The truth is, there is no how, there is only why. I do it because I love him. Above and beyond any exhaustion, stress, anxiety, or grief, there’s love. And unconditional and never-ending love makes you capable of anything.