I was chatting with a friend the other day, who also has a child with medical needs, and it occurred to me that I don't think she knows how strong she is. And sometimes, that's easy to forget, amidst the doctor appointments, IEP meetings, grocery shopping, kid activities, insurance company phone calls, work, and all of the other things on our to-do lists. Never mind the worry, the stress, the frustration, the grief, the confusion, the isolation that comes with being a parent or caregiver of a child with a rare disease or a complex medical condition. Of course, there are joys, hopes, surprises, laughs, cheers, and celebrations too! I need to remember how far Buster has come and how far we have come as a family, even when we are enveloped in anxiety for certain seasons of life. For us, that time is usually around Thanksgiving, as I described in a previous post. My friend seems to be in the thick of a hard season right now, and as other Rare Parents know, sometimes the only help you can offer is an open ear, an open heart, and a little pep talk :)
Years ago, when we were in the thick of Buster's diagnosis and ongoing treatments, people would ask me how I was doing. And I'd respond honestly because I am very open about Buster, his condition, his challenges and triumphs. Most people would have their mouth agape, and say, "Wow. That's a lot. How are you doing it all?" And that always shocked me. "Really?" I'd ask. It never seemed like I had any more troubles than other people. Looking back, I could snap fingers in my own face at the obviousness of it all---of COURSE I had more "going on" than other people! I had infant twins and a child with a rare disease and physical needs. Needless to say, I ended up in therapy ;) I had no sense of how hard it all was because I just...did it. I needed a reality check.
I was listening to a podcast this morning and the guest was Tony Robbins. As I'm sure you know, Tony Robbins is an author, coach, motivational speaker and philanthropist. He is known for his loud, but encouraging advice for being the best version of yourself. Robbins was asked about what holds people back from accomplishing their goals, and he said one factor is lack of mission. He claimed that we don't need to know the "how" when it comes to accomplishing our goals, as long as we know the "what" and the "why." How true that is. Robbins also said that usually we need a reason, bigger than ourselves, to get us going in the right direction, and that we are more likely to do something when it is for someone else. With all of the research out there focusing on the importance of self-care, I don't know whether this saddens me or whether I find comfort in its accuracy. When I began my search for a specialist for Buster, I put one foot in front of the other and did what I could, each day. Because he is the reason that is "bigger than me." I had absolutely zero idea of how to do it, but I got on the phone and slogged through awkward conversations, desperate pleas, and frustrating silences. That is what made me strong---getting through each awful phone call with a fleck of information that I didn't have beforehand. And each one, compounded onto the next, built a foundation that is now what makes me a Rare Parent. We do hard things. Day in, and day out.
My friend is an amazing person, a wonderful mother, a fantastic friend, a pro at her job, and everyone loves her. Describing her with the cliche, "she lights up a room," is absolutely accurate and there is no better way to explain the kind of person she is. She gives so much of herself to everyone around her, especially her family. Even on her darkest days, she is smiling. She is love and light and strength. Her "why," her "reason bigger than herself," is lucky to have her, fighting for the best treatment, the most reasonable solutions, the least painful procedures.
So here is my advice, to my lovely friend and anyone else who is overwhelmed or doubting what they can do: Remember your mission. One day at a time, one phone call or email at a time. But, most importantly, do what needs to be done. You are your child's hero, not just for the usual "parent stuff" you do, but because you go above and beyond and move mountains for him or her. You've got this, and I've got you.
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