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Sunday, July 26, 2015

We made it, babe!

Dear Raya,

It's late and I should be in bed. We have a big day tomorrow! I know every mom says this, but I really can't believe you're starting kindergarten tomorrow. I would say that I don't know where the time has gone, but I know exactly where it has gone. Time flies by when you're working hard, and we have been working HARD for 5 years, 8 months, and 16 days now.

When I first laid eyes on you, I could have never imagined what our journey together from birth to kindergarten would look like. To be honest, it was not at all what I wanted for you. I wish you had never been subjected to half a dozen needle pokes in the middle of the night on multiple occasions. I wish that no NG tube had ever rubbed against the tender tissue inside of your nose and no tape had ever made your soft little cheeks bleed. I wish that your first word had not been "blood pressure" and that you hadn't uttered your first word within the walls of a children's hospital.

 I wish that you had never swallowed a drop of barium. I wish that you had been able to spend your time at dance class or gymnastics instead of therapies. I wish that you hadn't spent the first 18 months of your life repulsed by the idea of eating food. I wish you had never experienced emergence delirium waking up from anesthesia. Or anesthesia, for that matter. I wish that we didn't have several souvenir photographs of the inside of your esophagus and stomach. I wish there wasn't a hole in your belly.

I wish your body and brain communicated better so that things didn't have to be so hard on you. I wish you hadn't been in isolation on your first Halloween. I wish you didn't have to be so brave. I wish your vocabulary didn't include medical terminology. I wish your skin had never been burned by your own digestive fluids. I wish you had never had to see a specialist (or 6). I wish food wasn't your enemy and you didn't need to carry EpiPens and Benadryl. Or any other medications. I wish you hadn't had to learn to walk with a feeding pump backpack on your back, even if it was ridiculously adorable.
I wish sending you to school was as easy as buying your school supplies and dropping you off like all of your friends. I wish you didn't have to worry about what might happen if someone accidentally sees your pull-ups at school or if you don't make it to the bathroom in time. I wish you could just be a carefree little kid.

BUT
I would not change any of it. (okay, maybe a little bit) Every needle poke, every NG tube placement, every anesthesia, every hour of therapy, every x-ray, every endoscopy, every G tube insertion, every traumatic GJ tube change, every vomit, every doctor appointment, every hour spent in waiting rooms, every night spent in a hospital bed, every meltdown, every test, every procedure, and every bit of pain, fear, frustration, and sadness has shaped you into the incredible little kid that you are. You have never stopped amazing me with everything you do. Every time your therapists ask you if you're done and you say you want to do one more or take one more bite, you show me your determined spirit. Every time you write your name and your letters are a little bit neater, you show me that you are capable of working at something until you get it right. Every time you take a taste of a food that I know you would rather vomit than eat, you show me that you trust the adults who are trying to help you overcome your challenges. 

Tonight as we were preparing your "all about me" bag, you chose 3 things to put in your bag that will teach your classmates about who you are. One was the family picture from last year's Christmas card. Another was your little Beanie Baby cow, because you have a LOT of those little stuffed animals and you carry at least half a dozen with you most of the time. The third thing you put in your bag was your "I ♥ a Tubie" shirt. When I asked you what you would tell your friends in your class about it, you said, "I'm gonna tell them about my tube." I asked you what you would say about your tube, and you matter-of-factly replied, "I'll tell them that it feeds me because I have trouble eating." Your answer was simple but sufficient, and my heart melted, as it does every time I hear you explain your G tube in your own words. It's adorable and it makes me so proud to hear you find your voice and speak up for yourself.

I have so many hopes for you this year, Raya. I hope that you LOVE kindergarten. I hope that you love learning, and that you will be humble enough to let your teacher teach you. I hope that you will be a good friend, and that you will love your classmates and be loved by them. I hope you will be a hard worker, even when you are asked to do things you don't want to do. I hope that you will find a good routine and that it will lead to you developing the age-appropriate self-care skills that have been so hard for you to catch up on. I hope that you will learn to handle disappointment in a constructive way. I hope that you will continue to develop a sense of ownership over your body and your health, and that you will conquer your fear of putting your own G tube in. I hope that you will be kind, but that you will also be assertive when you need to be. I hope that you can find the words to express how you are feeling and what your body needs to those who are responsible for your care at school. I hope you will be safe. I hope you never have to use the emergency supplies in the health office and that your pump bag never breaks at school. I hope you will get used to wearing your uniforms soon so that you don't keep getting upset that your uniform skirts don't move right, like your regular skirts do. Most of all, I hope that you will someday be able to comprehend how proud I am of you for working so incredibly hard to overcome so many challenges and be ready to go to kindergarten. 

It is really hard for me to turn your care over to someone else because I have spent the last 5 years, 8 months, and 16 days completely devoted to keeping you alive and healthy and I know how hard that job has been. It's hard to place that trust in someone else, especially when we haven't met her yet. There is a part of me that is sad, just like when your older siblings started kindergarten. I was sad for me because my babies are growing up, but I am so excited for you to start this stage of your life. You are READY to go to kindergarten! You keep telling me that you miss preschool; that you miss your teachers and your friends and mostly the toys, but preschool was not enough for you anymore. You outgrew preschool and now it's time for you to grow into elementary school. I love you so much and I can't wait for you to tell me all about your first day of school! You will do great things, my darling!
Love,
Mommy ♥

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