Our story starts the same way like everyone else’s in this group. Parents know the feeling of welcoming a healthy baby into the world. Five fingers. Five toes. Passing all the initial tests. Other than having less time for ourselves, life with two girls was perfect.
It was the summer of 2012. We were spending a nice weekend at Storyland, NH when Sabrina, who was 6 months old, would jump as if she got startled and cry inconsolable for 5 minutes. In the three weeks that followed, she was doing it more frequently, and became fussy and serious for a baby who was always smiling and easy going. Being experienced parents, we knew what colic was. We changed mom’s diet, made sure she was burped very well and massaged her stomach regularly.
Finally, we captured a video of the startle. We showed it to her pediatrician and were rushed to the ER at Boston Children’s Hospital that same day, where the doctors told us she was having infantile spasms. We were shocked. Seizures? Not stomach problems? It was the beginning of our journey into the world of special needs: lots of acronyms, lots of reading and lots of odd sounding medication names.
As parents, we were heart broken. We mourned for her loss of a “normal” life. Her inability to live it up to its fullest. But we now realize that for Sabrina, life is still the same, just as exciting as the day before Storyland, and that she was simply going to march to the beat of a different drum. We found the FOXG1 Facebook page (thank you!), a place for amazing support and for invaluable resources, where all the FOX kids hit their own drum and march at their own pace.
After the mourning phase, came a new life. One that is very special indeed: her milestones meant a lot more, patience and resilience had new meaning. She has shown us so much she is able to do. Maybe not at the same pace as “ordinary” kids, but it is our job to do whatever we can to help her get there. We also started seeing our other kids differently, especially after our third one was born, and not taking their lives and milestones for granted.
“The Heart of Life” song by John Mayer summarizes how we feel about life with Sabrina:
“I hate to see you cry Lying there in that position There’s things you need to hear So turn off your tears And listen
Pain throws your heart to the ground Love turns the whole thing around No it won’t all go the way it should But I know the heart of life is good
You know, it’s nothing new Bad news never had good timing then, circle of your friends Will defend the silver lining”
We are learning a lot more every day, taking everything with a grain of salt and sharing with our friends and family so they understand and accept her for who she is. No pity necessary. No sadness needed. Sometimes we need to remind ourselves of that same wish.
Sabrina is still a perfect girl, very social and very happy. She loves to cuddle and to touch your nose. She has the most enjoyable and adorable laughter. She loves to play with (and to lick) shoes, the more colorful the better.
She has taught us so much already, and she is only 3 years old. We can’t wait to see what the rest of her life will bring and teach us because we are sure she will do great things. In her own way, and at her own pace. Our story starts the same way like everyone else’s in this group. Parents know the feeling of welcoming a healthy baby into the world. Five fingers. Five toes. Passing all the initial tests. Other than having less time for ourselves, life with two girls was perfect.
It was the summer of 2012. We were spending a nice weekend at Storyland, NH when Sabrina, who was 6 months old, would jump as if she got startled and cry inconsolable for 5 minutes. In the three weeks that followed, she was doing it more frequently, and became fussy and serious for a baby who was always smiling and easy going. Being experienced parents, we knew what colic was. We changed mom’s diet, made sure she was burped very well and massaged her stomach regularly.
Finally, we captured a video of the startle. We showed it to her pediatrician and were rushed to the ER at Boston Children’s Hospital that same day, where the doctors told us she was having infantile spasms. We were shocked. Seizures? Not stomach problems? It was the beginning of our journey into the world of special needs: lots of acronyms, lots of reading and lots of odd sounding medication names.
As parents, we were heart broken. We mourned for her loss of a “normal” life. Her inability to live it up to its fullest. But we now realize that for Sabrina, life is still the same, just as exciting as the day before Storyland, and that she was simply going to march to the beat of a different drum. We found the FOXG1 Facebook page (thank you!), a place for amazing support and for invaluable resources, where all the FOX kids hit their own drum and march at their own pace.
After the mourning phase, came a new life. One that is very special indeed: her milestones meant a lot more, patience and resilience had new meaning. She has shown us so much she is able to do. Maybe not at the same pace as “ordinary” kids, but it is our job to do whatever we can to help her get there. We also started seeing our other kids differently, especially after our third one was born, and not taking their lives and milestones for granted.
“The Heart of Life” song by John Mayer summarizes how we feel about life with Sabrina:
“I hate to see you cry Lying there in that position There’s things you need to hear So turn off your tears And listen
Pain throws your heart to the ground Love turns the whole thing around No it won’t all go the way it should But I know the heart of life is good
You know, it’s nothing new Bad news never had good timing then, circle of your friends Will defend the silver lining”
We are learning a lot more every day, taking everything with a grain of salt and sharing with our friends and family so they understand and accept her for who she is. No pity necessary. No sadness needed. Sometimes we need to remind ourselves of that same wish.
Sabrina is still a perfect girl, very social and very happy. She loves to cuddle and to touch your nose. She has the most enjoyable and adorable laughter. She loves to play with (and to lick) shoes, the more colorful the better.
She has taught us so much already, and she is only 3 years old. We can’t wait to see what the rest of her life will bring and teach us because we are sure she will do great things. In her own way, and at her own pace.