So much has changed since I wrote this letter on this day 3 years ago. You are now terrified of the happy birthday song, so we will not in fact be singing it tomorrow. I no longer bring you to therapy because I don’t have the physical strength to drag you there or back on task when you act like a stubborn little brat… but I am still so proud to be your mama. You still amaze me every day. You still give me strength every day, and I am still so grateful that you included me in your miracle.
Cue the tears.
A letter for my son… (2015)
Two years ago, on November 16th, 2013, we had to cancel the party I had been planning for you the following day… because you had been sick, but it wasn’t until that day that we understood how serious it was. Your kidneys were in bad shape. You were diagnosed with Nephrotic Syndrome. The next morning, on your second birthday, you took your first aggressive dose of a strong steroid which you’d continue to take for months. You suffered so much from the side effects… emotionally and physically. Deep down I believe that it’s not a coincidence that the symptoms that later led to your Autism diagnosis started during that time. But those nasty meds saved your life. Two years ago, the specialists told us that this syndrome would be our new way of life. Your kidneys would be in danger every time you caught a cold or a virus. We would have to limit your contact with others during flu season and keep a close eye on the protein levels of your urine. We were told that, in a best case scenario, you would outgrow it when you hit puberty. Relapses would be frequent in the first year, we were told… and only 5% of all patients with Nephrotic Syndrome do not relapse.
Well, my little champion… you showed them! Today marks the anniversary of the scariest day of my life and I couldn’t possibly be any happier to say that those kidneys of yours are miraculous! How many people really get to say that they’ve beaten the odds? Thank you for including me in your miracle.
Tomorrow is your birthday, but unlike most 4 year olds, that means nothing to you. You’ll go about your day in the same way, bouncing and flapping with joy at the simple things that you find so amusing. When we sing “Happy Birthday to you” and you blow out your candles, you may just say “Happy Birthday to me”, right on cue, because it’ll remind you of the episode of Wallykazam when the Cake Monster says that and it cracks you up each time. To others, it’ll look like a perfectly normal reaction from a birthday boy, but I’ll know that it’s your echolalia and the way your brain makes rigid associations… but I’ll still be so proud of you. For the first time since your second birthday, I’m not terrified for your future. Your immune system is strong enough to allow for a “normal” life and your ability to imitate “normal” and “expected” reactions might just be enough for you to have “normal” relationships when you are older. In the past few months, you have worked so hard in all these different therapies we’re putting you through, and you are flourishing. And you’re happy. And I couldn’t be any prouder of you, my boy. Your energy and your challenges test my strength every day, but you give me strength every day. Thank you for choosing me as your mommy, Giancarlo. On November 16th, every year, I will allow myself to get emotional and nostalgic like this… but tomorrow, on your birthday, I promise to do nothing but share your joy. I can’t wait to see your eyes light up when I surprise you with cake and candles at school. Because you love cake. And when you say, “Happy Birthday to me”, I’ll say it right back to you, with nothing but pride and joy.