Through my daughter’s eyes

Starting with a wee rant: I’m super size mad with Ben’s hospital in NYC. They are really messing with my quest for inner peace. I know I have control over my own emotions, but they keep throwing crow bars at my happiness and I’m getting tired of dodging them. Grrrrr.

So, here’s the rundown: Ben was due to start his next round of antibody therapy July 13th. With Madeline on summer break I thought it would be nice to take her along with us, and to add to the fun, I scheduled a last minute, pre-NYC mini-vaca to the Great State of Ohio to visit family and friends. I only booked the tickets to Ohio because we were waiting on the approval from our social worker in NYC to travel on from Columbus to NYC for therapy. It’s a pain in the butt, but there’s a reason why. See, there’s a whole legion of people who have abused the system over the years, folks using the Ronald McDonald House and travel privileges for their own vacation time instead of care for their sick child, so every tiny detail has to go through our social worker and she’s in charge of approving when we travel. Once we got the lab results that Ben was medically cleared for another round, our social worker needed to let the Ronald and a charity we work with to get flights know that we were cleared to come. However, she went on vacation without completing the task. It’s no secret that my patience with this NYC facility is near the “hot liquid magma shooting out of my head” level, so we told them to reschedule Ben for the end of July instead. More Grrrr, but at least we have some extra time to get a solid travel plan in place.

Anyway, while we were in Ohio, I celebrated my 47th birthday. I’ve never really stressed out about numbers before – each birthday is undoubtedly a gift – but 47 struck me with a feeling of “Holy crap, I’m on the downward slide to 50.” And, for whatever reason, I’ve decided that by the age of 50, people should really have their sh*t together. Here I am, a well-educated, yet unemployed individual who has no security for her future. No retirement plan. No investments. No savings. No adult stuff. If I were to die, my children would inherit nothing.

I’m 47 and I’m worth nothing. Honestly, I tried to set myself up for a much better life through getting a solid education, but even if I could hold a “real job” with the rigors of a sporadic schedule hanging over my head, I wouldn’t want to. Because despite the lack of money, my life is very rich.

I know my primary job is to care for Ben throughout his medical journey. And I know I kick ass at that. My dad honored me with the ultimate compliment recently. He said that he believes Ben has done so well for so long because of my love and support over the past 11 years. I’ve been steadfast in letting Ben know that I’m with him, no matter what. And, I’ll be honest, there have been times that I didn’t want to. I was scared. I was exhausted. But I knew that Ben was more scared and more exhausted, and my job as his mother was to give him every single bit of me. I’m pretty confident that I did just that.

Now, with Madeline, it hasn’t been as consistent. I’ve missed first days of school and parties and field days and performances. She’s had to rely on the kindness of others to help her when Ben has to travel. I feel like I’ve let her down time and again throughout her 11 years on this planet. So, when she gave me my birthday present – a jar she decorated and filled with 10 slips of paper listing things she loves about me – well, I felt the Universe give me a giant hug, letting me know that we’re all on the right track. Here’s what she had to say:

*You are such an amazing, strong person. *I love to snuggle with you. *I don’t think you know how funny you are. *You always know what to do in sad situations. *You’re very unique, and I love it. *I think you’re a great caretaker. *You always know what to say. *I love to hear about your future books. *I am so proud to call you my mom. *Just, thank you for being you.

Of course, as I’m reading each validation, the tears fell. They cleansed my weary soul of all the nonsense I think I’ve been doing wrong. My inner voice is dumb. It’s busy telling me all the times that I’ve failed. I think I’m going to listen to Madeline’s voice for a while. Because, in her eyes, I’m giving her what she needs.

And that’s priceless.