Dear Jakey,
As per usual, I have spent a good portion of the day thinking about exactly one year ago today. And because your mom is a weirdo I remember explicitly that one year ago today (today as in this particular Friday in November, not the actual date) is the day that I was brave enough to leave you at school for a longer day and let them feed you without me hovering over you and micro-managing the whole thing. And it was the day that Beth was so proud and that you ate all of your avocado and egg meal for her. And that we went to the Mexican Connection for dinner and sat in the second room at one of our favorite tables and Heather was our waitress. And Heather commented on how alert you were and how you were following her with your eyes. You were off the clobazam and it was the best damn day you had in a long, long time. And today, I am trying so hard to hang onto the pride I felt and how close to you I felt. The reason it is so hard is because I know that tonight is also the night that when I re-adjusted you, your femur broke. And it was the night you screamed in agony for so long and it was so hard to comfort you. And tomorrow was the day that we were supposed to get you and Ethan’s pictures taken with Santa and then have dinner with G-Pa for his birthday. Instead you were in the hospital. And as we now know, it was the very beginning of the end.
But today, I am remembering so vividly how strong you were and that feeling of pride that you gave me. A feeling I will never quite have again. And I am hanging onto every second because next year at this time it will be a once removed memory and I need to be able to hang on to this until I make it up to see you again.
Below is the letter I wrote you 1 year ago, I want you to remember (and me, too) exactly how I felt. I miss you so very much my little peanut.
With so much love,
Mommy
11/19/10
Dear Jakey,
I need to take the time to count my blessings. I know I can get all negative and worry about your weight or your night’s sleep (actually lack of) or your poop and can get a little obsessive. But the fact of the matter is I have lost count of how many people have told me you look so great this week. And by great, they really mean alert. You are awake. There was a point not too long ago where I was writing to Dr. Thiele begging her to help me help you because all I really want is you to be able to participate in your own life. And I think we are getting closer to this each day. The hardest part of being your mom is that sometimes, or actually a lot of times, it is about faking it. People comment about you being such a sound sleeper and I have to smile, nod and agree. Or people tell me how envious they are of you because you are asleep in the stroller – really how many more “what a life” comments can we take? But you my dear, are joining in – you are keeping those eyes wide open and you are using them to see and participate in the world around you. And I couldn’t be prouder.
Today alone you got three notes home from school – one from Beth about how great you did all day playing with ooblick, the light box and other toys. One from Nancy about how alert you were for the whole PT session. And one from Stephanie about how great you ate at school today – your first day eating without me there! I couldn’t be prouder! And then Dr. Kang was clearly excited as I think this was the first time you were ever awake for an appointment with her! And she noticed how hard you working to get your eyes to follow her. You are awesome. And it doesn’t even end there – Heather at the Mexican Connection had to stop and comment on how super awake you were. It makes me so happy that we got rid of that clobazam and brought you back to your own life. We are trying to get rid of some of those annoying seizures that have come back too but hope you are happy too – and that you will take some extra lip smacking, teeth grinding and twitching to be a part of it all. I can only pray that it means as much to you as it does to us. I am so lucky to be your mom and love you more every minute of every day.
Love,
Mommy