Ga H&V, GBYS February Love Letters Blog Event- You've got mail #2

Ga H&V, GBYS February Love Letters Blog Event
You've got mail! Letter #2

Dear Lilia,
We look back on our journey, and we are in constant awe of you. Lilia you have continued to defy the odds. As we began our journey on starting a family, it was not as simple as we thought. Countless doctor’s appointments and two years flew by as we prepared our bodies to bring you into this world. We were told by our doctors and specialists; biological children may not be part of your future. We relied on our faith to help us through, and knew no matter the outcome we would be blessed. After a grueling and lengthy process, we were told you only have one embryo. The chances of this embryo “sticking” are not in your favor. Two weeks later, we go in for our blood draw and sure enough we were pregnant! Still extremely early, we followed up weekly and those weeks turned into months and our sweet Shorty was due on July 9th, 2009. You had other plans, you decided not to come until July 17th. After almost 20 hours of preparing and laboring, we hear your cries and we were elated. And after that we realized, we forgot to ask is it a boy or a girl? Girl! Lilia Shirazeh is here! She is perfect in every way.

You were in a precious pre-school when one of your teachers commented on noticing you were not turning around as quickly as before when she called your name. We had no reason to be worried, so we waited until we moved to schedule your hearing test at CHOA. Lewis and I never missed any doctor’s appointment, any school function, we missed absolutely nothing. We scheduled this hearing test at 5:30pm in the evening so we could both be there. And that was another day that our lives changed. Next thing we know; we are in a sedated ABR the next morning. As the audiologist and the pediatric ENT walked into the room and shared the results. They said words that we never imagined we would hear. We were stopped cold, and life stopped. We second guessed everything we had ever done. What did I do wrong, while I was pregnant? Was it the IVF? Was is the football games we took her to, or was it the band concerts we attended? What happened and why? We tried so hard to get you here, and we failed you? We mourned and grieved what we thought we would never have, and we were thrown into this new world. Will she be able to speak? Will she be able to go to school, to college, and what will her future look like? She can’t hear??!!

You took every doctor’s appointment, every blood draw, every therapy session, every fitting, and surgery like a rock star. We were in awe of you. You were 20 months old when you were diagnosed with hearing loss. You were fitted with hearing aids, and on New Year’s Eve 2010 we got the call with our answer. You inherited a gene from both me and Daddy. Your hearing loss was due to Pendred’s Syndrome. This meant you would have a high probability of completely losing your hearing as you got older. Your right ear progressed to profound and in May 2011, you became a recipient of a cochlear implant.

You worked so hard. You took every therapy session in stride. You were enrolled in a special school and you worked so hard at the tender age of 3 from 8am until 3pm every single day. We will never forget you standing on stage, the day of your graduation and doing your speech, and we sat there with tears of pride streaming down our faces. And we realized at that moment, you could do anything. You were 4.5 years old. That day would not have happened without Lilia and the amazing teachers, therapists, audiologists, doctors, and incredible group of amazing families we met along the way. Lilia’s dream team. Mommy and Daddy’s dream team.

You are now 8 years old. Nothing has ever slowed you down. You relish in the fact in teaching your family and friends about your special ears. Your confidence and your acceptance of who you are is something I wish I could bottle and share with the world. Your kind heart is infectious, and your smile lights up a room.  You love your family and friends. You love playing outdoors, music, cooking, reading, dancing, ballet, and singing at the top of your lungs. Your violin teacher is impressed with your ability to hear tone and to read music. You continue to thrive as a student at the Atlanta Ballet. You are the best big sister, and an incredible example to your twin brothers. You are also a role model to one of your brothers who also has Pendred’s. You continuously amaze us.

This past fall you auditioned for a tiny part in the Nutcracker. You were chosen to play one of the mice. On a remarkable December snowy evening in Atlanta, we sat on the second row at the Fox Theater and through our tears you make your debut. You did it! You never looked back, and you worked so hard to get there. Thank you God for the many blessings that been woven into our lives because of this hearing loss journey. Thank you dream team. Thank you Phonak and thank you Advanced Bionics. Thank you Lilia for your relentless focus, for your strong will, and thank you for introducing us to such an incredible world through your eyes and special ears.

Love always and forever,
Mommy and Baba Joon
(Laila Lawrence "Mommy" is a Parent Guide with GA H&V, GBYS Program.)

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