Little darling ,
Words can't express how proud I am of you.
You see this Tuesday, I got you up and ready for school, did your hair, picked a pretty outfit for you, took zillions of photos of your official first day of a pre school program for children with disabilities, a classroom filled with children with typical needs and others that needs a bit more help to learn just like you. You will have little friends that you can look up to and get the motivation to learn. We all know that's what you need.
You are starting a new journey without me, without our home nurses that you adore and trust and that we trust. Just you, your teachers and classmates. A journey where I will only know so much of what they will share with me on the events that happened throughout your day.
I will not be there to know you if are happy or sad or actually hear from you on how your day went. It will be your own secret world with just notes coming from home and trusting those caring for you while at school.
I can't help but remember the first time I got to hold you when you were born, after making sure your little heart was doing good.
I can't help but remember the first time I got to hold you after your heart surgery.
I can't help but remember the first time I got to hold you again after your feeding tube placement.
I can't help but remember all the nights I held you on a hospital chair or squeezed myself into a hospital bed to be closer to you. Just to feel you close to me, so you would know I was here and things would be alright. I made you a promise to always watch over you. To always make sure you are heard and fight for your rights. I promised you that I would do whatever it takes to make you feel better. That I would be your voice to the doctors and always do what's best for you.
I can't help but remember all you have thought me. All the researches I have done about your genetics and finding not much on it. Getting the motivation from you to start to blog, to write about your journey to help the next person that might need it.
I learned for you all about feeding tubes and feeding techniques to get you to eat.
I learned about heart issues and signs to watch.
I paid close attention to your little body and to watch for signs when you are not so well, until you can figure it out how to use that little voice of yours.
You and your therapists thought me about picture boards, basic signs, and communication device so you could let us know what you want.
You thought me how to become a better person.
All along you have been my best teacher and I only put to practice what I have learned from you and your specialists.
But this week starts a new journey without me by your side.
A journey where I will only know so much about your day.
I wish you could come home and could tell me all. If they are treating you right and all you have learned along the day.
Deep in my heart,I still know this is the best decision we have made for you.
I can't keep you forever with me. I need to let you grow, and become independent, reason why daddy and I have decided to not send a nurse with you. We could of, it would of probably be easier accepting you to go and get a report from your nurse.
But we know deep in our heart that you can do it on your own. That you will learn, that you will grow. I am already very proud.
I did write a letter to your teacher, titled; "Naylah's instruction"
I gave her signs to watch if you are hungry , that you don't always sign "eat" but make mouth movements.
Or to watch you with that feeding tube of yours that you love to play with.
Mostly, I did let them know that daddy and I are only minutes away if they never need us!
I'm proud of you Naylah, you are growing and you are becoming independent. I cannot wait till the day you get home and tell me about your day, until then, I will trust the school binder and what I hear from your teacher when I pick you up.
I love you. We love you.