Monday, May 18, 2015

Dear Sonya

I am writing this letter to you with such fervor that you will one day be able to read and comprehend these words.  I want you to know what a blessing you are to our entire family.  We all love you so very very much.  It was a difficult task picking your name, as your father and I (as well as so many others) were convinced you were a boy.  You were named after pop-pop's very strong, smart, and loving grandmother, who lived a very long and full life.  Your first name is a Russian variant of the name Sofia, and it means "Wisdom", and your middle name Ahava is Hebrew for "love".  I have no doubt that you are one of the wisest people here on earth full of love and being loved.  I have no doubt that your intelligence is going to shine, that you will use your wisdom to be creative, and teach others, and you will be responsible for some amazing contributions to science.

While it has been a trying time for us all as we have been adjusting to your diagnosis, it is so hard for me to comprehend this situation from your eyes.  Like others who are having a difficult time imagining the predicament your father and I are facing, I can't begin to imagine how you must be feeling.  I ask G-d that you are not frustrated and that you are not upset being different.  I hope you see yourself as perfect.  You will have days where you may want to cry, know it's okay, let me join you, and we can wipe each other's tears.

I pray so hard that you will thank me for all that I demand of you on a daily basis.  I hope you know that we have your best interest at heart with all of our decisions regarding your medical care.  I hope one day all of these efforts will allow you to contribute to these discussions.

Please forgive me for the days that I tire easily and have a short temper, PLEASE know that I am not giving up on you, ema just needs a break to get her mind back on track.  I will have days of frustration and loss of hope, but those feelings are not directed at you, rather the situation.  Your great grandfather never liked us to use the word "hate", because "hate is a strong word".  I now see his point, as I have NEVER hated anything as much as CDKL5.  I have never felt so robbed by a string of letters.

Please know while it is really hard watching you have seizures, it is even more difficult to rationalize giving you so much medication that your little personality cannot shine through.  We are SO sorry we can't make them stop.  We will continue to choose YOU over medical interventions every single day.  I hope this will be your choice as well.  We will exhaust ALL interventions that will help make your life easier and make you the most happy.

I hope you know that your siblings love you so much! Your older sister loves nothing more than to cuddle and hold you.  Your brother loves to give you kisses.  Your oldest sister is one of your biggest cheerleaders, and prays daily that you will walk and talk so you can play with her.  I hope G-d hears her prayers.

I hope you are always comfortable with your life, and that you are happy.  I hope we find a way to communicate and understand one another.  I hope you never feel failed.

Rascal Flatts says it best: "My wish for you, is that this life becomes all that you want it to, Your dreams stay big, your worries stay small....And while you're out there getting where you're getting to, I hope you know somebody loves you, and wants the same things too."

I have no doubt that you will continue to amaze me with your determination and perseverance.  Please stay strong, don't give up on me, and NEVER give up on yourself.  As Miley Cyrus says "There's always gonna be another mountain.  I'm always gonna wanna make it move.  Always gonna be an uphill battle.  Sometimes I'm gonna have to loose."  It is not going to be easy, it is going to be a tough road, some days will be a struggle, but WE ARE GOING TO MAKE IT.

Love always,
Ema