This girl!

This girl!

Sunday, June 21, 2015

I love you da-da!

Sophia can't talk but she can say da-da. It's pretty much the only word she says and she says it all the time and I'm not surprised, Sophia loves her daddy. She may not say it with words but I can tell by the way she lights up when Eric gets home from work and by the way she loves to rub his beard and read a bed time story sitting on his lap every night. When I do her hair or trim her nails or do anything that she is not thrilled about, she looks for her da-da and he comes to the rescue. They have a very special bond and that's evident in the way they look at each other, no need for words to realize they love each other.
It's father's day and I want to take the opportunity to acknowledge and recognized the amazing job that Eric does as a husband and father. He is my main source of support and strength to do my job as Sophia's mom the best I can. He is the only one who can truly understand how I feel when things don't go well for our daughter and always has the right words to make me feel better. We don't always agree but he validates my concerns and helps me make the best decisions for Sophia's well being.
He, just like me, had to go through the grief of losing the idea of having a typical baby and had to learn to deal with the challenges of having a kid with different needs. It hasn't been easy for him to see his daughter struggle and his wife cry but he is strong for the three of us and always finds the right words to make me feel safe, protected and loved. I am usually the one who is praised for how good Sophia is doing but I have to say that I couldn't do what I do if I didn't have such an amazing man by my side.
Yes, Sophia loves her da-da and I know without a shadow of a doubt that he loves her back just the way she is and that he is going to be there for her, protecting, supporting her and doing everything he can to make sure she has the best life.

Sunday, June 14, 2015

6/15/08, the date you changed my world.

"...In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
she was sent to rescue me
I see who I want to be
    in my daughter's eyes..."  
Martina Mcbride.

Seven years ago I was in a hospital bed, 37 weeks pregnant and getting ready to meet the person that was going to change my life forever. I already knew that the baby I was carrying was a little different from the one I had pictured before the diagnosis, but when I saw this tiny little creature for the first time I didn't notice what was different,  all I could see was that she was nothing but perfect.

Sophia, you arrived into the world on a father's day, stating from the very beginning that you are a true daddy's girl. With eyes wide open you started to explore everything around you and then your eyes met mine and I knew right there that we were going to be ok. You have gone through a lot in the past seven years, everything from surgeries, stays in the ICU, breathing problems and seizures. But that hasn't stopped your determination to be the happiest kid in the world, every single time we go through a rough patch you start smiling and being the happy girl that you are and that makes everything a lot better.
Today as we are getting things ready for your birthday party, I can't help but think about the resilient and determined person that you have become and that makes my heart fill up with pride to be your mother. You have come a long way my love, I believe you are going to get far and you can count on me to help you get there.
I truly believe that you came to my life to show me the kind of person I was meant to be, and I don't want to be anybody else but your mommy. It has been seven years since I saw you for the first time and today, on your birthday, I look at you and I know that I would not change anything about you. You are special and unique, not because of your diagnosis but because of the amazing, fun and sweet personality that you have. I've learned a lot from you and I am looking forward to see what else you are capable of and make no mistake baby girl, I would be there with you every step of the way loving you, supporting you and fighting the world for you.

I love you to the moon and back Sophia!

Saturday, June 6, 2015

I'm still not used to the stares (part 2)

When Sophia was 5 years old, I wrote a post about kids staring at Sophia, you can read it here. Today, I think somewhat differently than I did two years ago. I've learned that when kids stare at Sophia they are mostly curious, but then after the initial surprise of seeing someone different from them, they are interested in interacting with her and playing together. I am better at explaining to them why Sophia makes loud noises or why she uses a walker to stroll around the mall, and so they and I can have a little chat and then they go their way. It's actually nice (most of the time, anyway).
In that post from two years ago, I said I was used to adult stares. At that time Sophia was five and she was still very little and the difference was not too obvious from a typical kid, so most of the people used to stare at her noticing how cute and sweet she was, but now at seven the difference is more noticeable and the use of her walker and her communication book (the PODD) make it obvious that she has special needs. Many people still look at her and even say it out loud: "Oh she is adorable", "she is so sweet", "she is so cute" and I can see they genuinely think that, and it's nice to hear those words. But there's also a bunch of people that look at her using her walker and they look at us and I can see the pity look and the "oh poor you having to deal with a kid with special needs" thought going through their minds. I sometimes choose to ignore the look, but other times all I want is to tell them about us and make them understand that we are ok. I want to tell them that yes, it has been challenging but it's not horrible. Sometimes we wish things were not so difficult for Sophia but she is making progress everyday. We do what most parents do for their children, we make sure she has what she needs, we take care of her when she is sick and rejoice when she gets better without having to go to the hospital.
Yes, we have more doctors than I can count with one hand but they are very good doctors and they help us take care of Sophia.
Yes, Sophia has a lot therapists and teachers and care givers, but we have met amazing people because of it.
Yes, it has been very hard at times and we have cried but we have also laughed. I want to tell them that Sophia is a very happy kid, that her laugh makes everything better, that there's no way that we can think of Sophia and not smile (really! we have tried!).
We also go to the park or the beach and have fun. We take pictures with Santa and watch Elmo and Barney on demand. We also go on trips and we go out to dinner (quite often) and we laugh a lot.
I want them to know that Sophia is sweet and fun and mysterious and amazing and she brings a lot more happiness than sadness to our lives. We are a happy family who has some struggles, maybe a different kind of struggles but just like any other family we try to deal with them the best we can.
I dare you to look at that face and not smile!