I always thought we would be talking about fashion, school, boys and life changes when you were 12 years old. As a first-time parent, I envisioned I would be the kind of mom that you would be able and want to talk to. I planned to be open-minded and accepting of your opinions. I would encourage you to be your own person, think for yourself and not feel like you had to follow the crowd. As you went through toddlerhood, I felt excitement about the girl and woman you would grow up to be. You were sweet, funny, and happy. You had the world in your hands…you could be anything you wanted to be.
As the early school years progressed, it became evident that things just were not right. You were not advancing like the children around you. We found ourselves entering the world of special education, psychological evaluations, specialist consultations and multiple procedures. You were a trooper. You underwent more testing in your short life than most people ever would in a lifetime. From blood-work, brain MRI’s, EEG’s, sleep studies, x-rays, echocardiograms, EKG’s, hearing and vision exams, you experienced them all.
Ultimately, the testing led us to the most devastating, unimaginable conclusion. At 8 years old, we found out that you had Sanfilippo Syndrome, a rare, progressively terminal disorder. My life would never be the same again. How could I carry on, function, and live? How could I ever know true happiness again? I had no idea what the future held but knew that my life was shattered.
It has been over 3 years since you were diagnosed. Your heart is still beating; my heart is still beating. We both breathe, eat, sleep, laugh and love. We are still living life and making memories. You amaze me with your determination and strength. You still dance, sing, cheer, read and write. Your light shines bright my sweet daughter. Although you do not realize that you have a terminal illness, you live a life full of love and happiness. You know what true joy feels like.
We don’t have the conversations that I envisioned we would, but we do have lots of good talks. You are a planner, so we talk about future plans… like what is for supper and what we will do tomorrow. I cherish hearing your voice and laughter. I have difficulty sharing my true feelings because I never want you to think there is anything wrong with you.
My sweet Abby Grace, these are the words that I want to express to you…
I am so sorry that you have to live a life with Sanfilippo Syndrome
I am sorry that you have to live a life full of doctor visits and taking extra medication
I am sorry that you face challenges understanding and communicating your thoughts and feelings
I am sorry that you can’t experience the things that you should be experiencing at 12 years-old
I am so glad you do not notice the stares of strangers who don’t understand your differences
I am also glad that you could care less about what others think of you
You have brought my life more love and joy than I could have ever imagined
You have touched many peoples’ lives, some you have never met
You have taught me that I can withstand anything this life throws my way
You have taught me how to be more compassionate and empathetic towards others
I am so very proud of your accomplishments; you have beaten the odds already
I love your quirky, obsessive personality
I love that you are tender-hearted and cry watching our wedding video
I am so happy that you do not judge others and see the good in people
I love your innocence and simplicity
I love that the simple things in life bring you joy
You are loved more than you will ever know
We have chosen not to tell you that your physical body is dying. Your spirit and joy will live on forever in the hearts of those around you. Although you are 12 years-old, your mind is that of a 6 year-old. We do not want to burden you with the worry of dying. We have not given up on you and still have HOPE that you will be cured of Sanfilippo Syndrome. We just do not want to steal your joy and happiness. We want you to stay the silly, fun-loving girl that you are. We will carry the weight of your diagnosis on our shoulders. You just keep singing, dancing, laughing and loving life.
For more information about Abby Grace and Sanfilippo Syndrome, please visit abbygracefoundation.org.