Your birth on April 18th 2015 was the happiest day of my life. You know, less than a year before your arrival, you had a big brother but he had the wings of an angel. So when I held you in my arms for the first time, it was both a relief and the culmination of a big dream; becoming a mother. You arrived 4 weeks earlier than expected after nearly 23 hours of labor.
When I saw you for the first time, I was ecstatic but this little voice inside my heart and my head was telling me that something wasn’t right. I guess we can call it intuition. When I changed your diaper for the first time, I noticed right away this little malformation on your skin in your lower back. I didn’t waste any time; I spoke to your doctor and from then on, a range of specialists entered your life and you have had to undergo a whole battery of tests that caused you to suffer more often than not. All the doctors seemed worried but nobody knew what was really going on so we were referred to different specialists.
As the months go by, I am realizing more and more that you are not developing like children your age. I fight every day to get you services and to make sure that you get all the proper follow-ups. I implement all of the specialists’ recommendations so that you can thrive even if it means putting up with judgements from those who think we should just let things go and everything will fall into place… As time goes by, the comments multiply, “She’s fine.”, “She’s brilliant.”, “She’ll catch up sooner or later.” Of course I know they’re trying to reassure us, but you know what? I don’t need to be reassured because it doesn’t matter to me that you develop differently than other children. Besides, I don’t want to compare you to other children because each child is unique and develops at their own pace and rhythm – you are no exception to the rule. I cried so many times, not because you are not developing as expected but because sometimes I don’t feel understood by specialists, because sometimes I’ve had enough of fighting with professionals who will not listen, because sometimes I’m afraid that the lack of services will affect you and because I’ve had enough of seeing you suffer when you must undergo tests that hurt you.
I feel so lucky to have you in my life. When you are sad or you get hurt, it’s me you come crying to. When you are proud of yourself, it’s me you come running to and each of those times my heart melts with love for you, my precious little pearl. You brighten our lives with your endearing and lovely personality. You move all those around you and everyone falls in love with you seeing how special you are. I am so impressed by your perseverance and your determination. When I look at you I can’t help but smile. You never cease to amaze me by your progress and all the efforts you put into your accomplishments.
On January 8th 2018, at a quarter past noon, I received a long awaited phone call…We have a diagnosis. You have the KBG syndrome, a very rare genetic abnormality. Only about a hundred people in the whole world share this same diagnosis. Regardless, this syndrome does not define you and it doesn’t change, in any way, the way I see you. It only explains why you are developing differently. I wish to tell you that whatever life has in store for you, I will always be by your side to help you reach your full potential, to help you celebrate your successes and overcome harder challenges. I will protect you and fight for you until my very last breath so that you have all the resources and tools you need to face life. Abnormality or not…the future holds many uncertainties and I will stand by you throughout the milestones with pride for the person that you will become.
My love for you grows every day and to me, you are perfect despite this medical imperfection.
Your mommy who loves you to the moon and back,