To my dear beloved special Dovi,
In all likelihood, you will probably never read this letter. It will take a miracle for you to ever learn to read. I have learned to stop expecting miracles. I am still waiting for you to call me “Mama.” It might never happen either.
This Shabbos is a very special day. It is Totty’s and my seventeenth anniversary. Five years ago, on our twelfth anniversary, something incredibly special happened. I’ll never forget that moment as long as I live. After 9 months of pregnancy and 13 endless hours of labor, a writhing, screaming, gorgeous, pink, healthy 7 pound little boy was thrown onto a blue sheet that had been draped across my belly. I cried for five minutes straight. I couldn’t believe that after struggling with infertility for 9 years, and struggling to raise a head-strong preemie for almost 3 years, I was granted a second chance at making things right. A little brother for Chaim. It was incredible. Totty and I looked at each other and I commented, “How amazing is it that on our twenty-fifth anniversary we will celebrate this baby’s bar mitzvah?” The future was bright and exciting, the possibilities open and endless.
Little did we know.
You were the perfect baby in every respect. Blonde, blue eyed, always smiling, always happy. You nursed like a champ for 2 years. You rolled over at five months, sat up at six, crawled at nine, walked at thirteen. You had first sounds and first words. I was super careful to discipline you correctly and try to ‘raise you right.’ You were my Gerber baby, my wonderchild.
And then, when you turned 18 months old, everything imploded.
It started innocently enough - stimming, staring up at the ceiling. Then came loss of words, loss of sounds, loss of eye contact. We all know the rest.... a one-way trip down a dark tunnel so endless, so deep, so dark and awful.
It is now three years later. Totty, Chaim, and I are battle scarred. Our days and nights revolve around your needs. We struggle to keep afloat as a family, to keep the normalcy of the house flowing - and failing. Because of circumstances that you did not choose, such as your severe ADHD, we are forced to employ a lot of outside help to meet your needs while balancing the needs of our family. It kills me every time we send you to respite for Shabbos. But we have no choice, and we know you love it there.
This Shabbos, you will be celebrating your fifth birthday - not at home, but at respite. My eyes are blurring with tears as I write this - I can barely see. I will be thinking about you all day - your beautiful smile, your inimitable charm, your hugs and cuddles. I will be thanking HaShem for the small gains you have made in the past year; you are a different child than you were at your fourth birthday. Your receptive language skills have grown by leaps and bounds and your social interactions have improved. We have had to adjust our dreams and expectations of you, and we love you exactly the way you are. Our love for you will never diminish, no matter how difficult life gets sometimes. At the same time I cry for the loss of what could have been and for what will never be. I look at you and cry about your inability to express yourself, your inability to interact with your peers and your inability to occupy yourself constructively in ways that do not include ripping papers to shreds or jumping on and off chairs. It must be really difficult being you and my heart goes out to you.
Happy birthday, my little special tzaddik, my special neshama, my love. May it be a beautiful day, and you should enjoy it in your own happy, innocent way, the way only you can.
Your loving Mommy