Community Submission by: Leslie Mehta
Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name.
I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were too busy making our way in the world.
We confronted our own mortality with the passing of my father on January 2, 2010 and, both being 32 years old, decided to start a family. Naively, we thought I would be pregnant within a few short months, but we were well into 2011 when we discovered we were pregnant.
We were excited to share the news with close relatives and friends. Nausea got the best of me, so a week or two shy of my 12-week mark, I decided to tell the female partner for whom I worked, mostly in case I had to dash out of a client meeting. She told me matter-of-factly that she did not keep secrets from her (all male) partners and so, because I told her, she would tell them, but they would keep my secret (they did not; I started receiving congratulations and felt compelled to share with other attorneys in the office).
I miscarried the next week.
After another year of trying, we decided to see fertility specialists. After multiple rounds of IVF, we were again pregnant – and again miscarried – this time at 5 months.
But on August 29, 2015, our miracle baby finally arrived. Ten fingers, ten toes. And quiet. At the time, we lived in the Bay Area. She was born in Berkeley. We called her our Berkeley baby – calm, cool…Zen. But a few months passed and we began to think that perhaps our miracle baby was just a little too chill. Then milestone markers came and went – with no changes. No rolling over. No sitting up. She couldn’t even hold her head upright.
We discussed this with our pediatrician and she recommended that we get Brooke tested through our county. After a battery of tests, one finger prick revealed our fate: Rett Syndrome. We had to google it. Turns out, it is a rare neurological disorder caused by mutations in the MECP2 gene. It affects approximately 1 in 10,000 girls and even fewer boys. It renders Brooke incapable of walking, talking or having purposeful use of her hands. Unless there is a cure (gene and other potential therapies provide hope), she will rely on us until she dies or we do.
For the first year after Diagnosis Day, I cried on my way to work every single day. There is a mile marker a few miles from my office that I used as my stopping point. I would not cry past that mile marker so that I had time to get myself together before walking through the door. On good days, I did just that. Great days? I stopped crying before I hit that point. On bad days, my eyes were too swollen and full of tears to see the mile marker.
I cried for my future. One of never-ending diaper changes, feedings, making purees, of no first words, no momma, no I love you, and on and on and on.
I cried for her future. One of hardship and frustration that the words won’t come out. A life that I couldn’t even imagine.
And I cried for the past. All of the dreams we had for her. How we joked that she would be the first supermodel president.
And I cried that it all seemed to be a cruel joke. We had tried and failed and tried and failed over and over. So much heartbreak and hope poured into one child. After the miscarriages and IVF needles and nausea, this was our miracle baby. We went through so much, but finally passed the test…only to be handed another.
It hasn’t been all doom and gloom. I’ve also learned along the way. I’m stronger. More empathetic. Wiser. And I’ve become a disability advocate.
But, if I’m being honest, I would gladly exchange those newfound strengths if Brooke could have just a little more MECP2.