Our journey with stroke began in 2012 with the birth of our youngest, Addison. My sunshine mixed with hurricane. We welcomed this beautiful red head into our family on December 5th and despite complications during pregnancy, we were assured she was in excellent health.
Addison wasn’t our first child, so we knew bringing a newborn home was a big journey. We knew the lack of sleep, the newborn tears, and that wild but beautiful ride of those first months, all parents know what I mean. We thought we knew what to expect. But, with Addison, it was different.
Her first month home was as joyful as much as it was trying. Our daughter had extreme difficulty sleeping and eating. Every other hour like clockwork she would wake and cry. While she had the appetite – she lacked the ability to eat well. She would struggle and it was horrible to see her so uncomfortable. It was a heartbreaking cycle to witness your baby struggle to simply eat.
We lived in survival mode those first months, carting her around to a number of appointments. So many discussions on colic, acid reflux, and possible allergies. I sought support from lactation specialists, therapists trained in reflux, and made countless calls to her pediatrician. Most attempts proved futile, with the constant reassurance that she was healthy and gaining a small amount of weight. It was just enough.
By the time Addison was 4 months old she had developed a strong preference to her right hand. She didn’t use her left to manipulate any toys or reach out, most often her left hand remained in a tight fist. I would literally have to pry her left hand open to clip her nails. It was strange to me. Each time I mentioned this to her pediatrician I was told to watch and wait, that it could still be her newborn refluxes- that there was no cause for alarm. But, In my mind and in my gut I was certain something was wrong. I refused to accept this was typical for an infant.
I took to newborn books, searching for any answers that I could possibly relate to with my daughter. When nothing about hand dominance came about I took to searching Google, which is not a parent’s friend. You cannot diagnose your child through a google search and not but all lose your mind. I wanted answers, but with no direction I only found new worry.
At her 6-month checkup her pediatrician recommended we see a neurologist for an MRI. Although he didn’t completely agree something was wrong, he was willing to put the referral through. I had seen stories shared of Cerebral Palsy and pushed for all the possibilities of what could be happening with our daughter. It was then in a very light conversation that her Pediatrician mentioned there could be the rare possibility of a stroke being the cause of her difficulties.
A Stroke? How does a child, an infant, have a stroke? I was confused and I was scared and rightfully so. The truth be told, stroke in children is not rare, its simply not discussed. Even among my early google days, stroke never popped up. I had to know what to look for, and quite honestly stroke was the furthest thing from my mind.
Addison’s MRI results confirmed she had suffered from a Perinatal Stroke during my pregnancy. That the damage to her brain was what was responsible for all the difficulties she had experienced. Because the stroke occurred in the right side of her brain, her entire left side was weakened. Her hand, her leg, her mouth, the ability to swallow, and her digestion were affected by this stroke. It was all clear to me now. Clear, but still devastating.
I wrestled with every possible emotion, just as I am certain any parent does when they receive a major diagnosis for their child. I was angry that after months of appointments and specialists- not one of them had mentioned a stroke as a possibility. I was filled with guilt that I didn’t fight harder for my daughter- that I failed at protecting her. I was scared for her future and what it may look like. Was she going to walk, talk, would she have another stroke? And No matter how much I wanted these answers, the truth was again, only time would tell.
Up until this point in my life, I was sheltered from this life that many parents navigate when their child has a developmental need. The one certain thing we were told was that Addison would benefit from ongoing Early Intervention. That only through therapy, could she reach her greatest potential.
That first call to seek therapy was hard. It’s hard for me to ask for help. It was hard for me to admit that my child had developmental delays. It was scary and I had no idea what to expect.
So, when this beautiful team of therapists knocked on our door days later for her evaluation, I was surprised that it felt like opening a door to fresh air. I had wondered, what does therapy look like for an 8-month old child? And they showed me. They brought me hope, they brought us a plan and they saved our family from experiencing this alone.
The team coached me as a parent on how to support Addi in our daily routines and carry out those strategies between sessions. They taught me how to thicken formula and showed me special exercises for my daughter’s mouth, so we could strengthen her ability to eat comfortably.
They showed me how to focus play on her left side to incorporate the use of her left hand and leg and how to strengthen her core muscles so she could potentially learn to sit on her own. 2 to 3 times a week these therapists were at our home, navigating this journey with me and my daughter. This team was our village. And to this day, they still are.
Addison is 7 now and let me tell you - this girl has crushed so many milestones. After early intervention, we began the often “routine” of ongoing therapies needed to continue to help her reach her greatest potential, and we realize therapy may be a part of her childhood. But, I’ve witnessed first words, first steps, leaps & bounds beyond what any doctor foresaw in her future. She does it all in her own way and in her own time, and I will always be her biggest cheerleader.
A brief, tiny moment in my daughter’s life during my pregnancy changed the course of her future dramatically. In many ways Addison is your typical child, and in some ways, she has to work much harder at the things that come easy to most, because of her stroke.
The biggest message I have ever shared to anyone is that my daughter, our children- are bigger than any diagnosis, they will amaze and inspire us with their ability to overcome. Never lose sight of that.
Addison wasn’t our first child, so we knew bringing a newborn home was a big journey. We knew the lack of sleep, the newborn tears, and that wild but beautiful ride of those first months, all parents know what I mean. We thought we knew what to expect. But, with Addison, it was different.
Her first month home was as joyful as much as it was trying. Our daughter had extreme difficulty sleeping and eating. Every other hour like clockwork she would wake and cry. While she had the appetite – she lacked the ability to eat well. She would struggle and it was horrible to see her so uncomfortable. It was a heartbreaking cycle to witness your baby struggle to simply eat.
We lived in survival mode those first months, carting her around to a number of appointments. So many discussions on colic, acid reflux, and possible allergies. I sought support from lactation specialists, therapists trained in reflux, and made countless calls to her pediatrician. Most attempts proved futile, with the constant reassurance that she was healthy and gaining a small amount of weight. It was just enough.
By the time Addison was 4 months old she had developed a strong preference to her right hand. She didn’t use her left to manipulate any toys or reach out, most often her left hand remained in a tight fist. I would literally have to pry her left hand open to clip her nails. It was strange to me. Each time I mentioned this to her pediatrician I was told to watch and wait, that it could still be her newborn refluxes- that there was no cause for alarm. But, In my mind and in my gut I was certain something was wrong. I refused to accept this was typical for an infant.
I took to newborn books, searching for any answers that I could possibly relate to with my daughter. When nothing about hand dominance came about I took to searching Google, which is not a parent’s friend. You cannot diagnose your child through a google search and not but all lose your mind. I wanted answers, but with no direction I only found new worry.
At her 6-month checkup her pediatrician recommended we see a neurologist for an MRI. Although he didn’t completely agree something was wrong, he was willing to put the referral through. I had seen stories shared of Cerebral Palsy and pushed for all the possibilities of what could be happening with our daughter. It was then in a very light conversation that her Pediatrician mentioned there could be the rare possibility of a stroke being the cause of her difficulties.
A Stroke? How does a child, an infant, have a stroke? I was confused and I was scared and rightfully so. The truth be told, stroke in children is not rare, its simply not discussed. Even among my early google days, stroke never popped up. I had to know what to look for, and quite honestly stroke was the furthest thing from my mind.
Addison’s MRI results confirmed she had suffered from a Perinatal Stroke during my pregnancy. That the damage to her brain was what was responsible for all the difficulties she had experienced. Because the stroke occurred in the right side of her brain, her entire left side was weakened. Her hand, her leg, her mouth, the ability to swallow, and her digestion were affected by this stroke. It was all clear to me now. Clear, but still devastating.
I wrestled with every possible emotion, just as I am certain any parent does when they receive a major diagnosis for their child. I was angry that after months of appointments and specialists- not one of them had mentioned a stroke as a possibility. I was filled with guilt that I didn’t fight harder for my daughter- that I failed at protecting her. I was scared for her future and what it may look like. Was she going to walk, talk, would she have another stroke? And No matter how much I wanted these answers, the truth was again, only time would tell.
Up until this point in my life, I was sheltered from this life that many parents navigate when their child has a developmental need. The one certain thing we were told was that Addison would benefit from ongoing Early Intervention. That only through therapy, could she reach her greatest potential.
That first call to seek therapy was hard. It’s hard for me to ask for help. It was hard for me to admit that my child had developmental delays. It was scary and I had no idea what to expect.
So, when this beautiful team of therapists knocked on our door days later for her evaluation, I was surprised that it felt like opening a door to fresh air. I had wondered, what does therapy look like for an 8-month old child? And they showed me. They brought me hope, they brought us a plan and they saved our family from experiencing this alone.
The team coached me as a parent on how to support Addi in our daily routines and carry out those strategies between sessions. They taught me how to thicken formula and showed me special exercises for my daughter’s mouth, so we could strengthen her ability to eat comfortably.
They showed me how to focus play on her left side to incorporate the use of her left hand and leg and how to strengthen her core muscles so she could potentially learn to sit on her own. 2 to 3 times a week these therapists were at our home, navigating this journey with me and my daughter. This team was our village. And to this day, they still are.
Addison is 7 now and let me tell you - this girl has crushed so many milestones. After early intervention, we began the often “routine” of ongoing therapies needed to continue to help her reach her greatest potential, and we realize therapy may be a part of her childhood. But, I’ve witnessed first words, first steps, leaps & bounds beyond what any doctor foresaw in her future. She does it all in her own way and in her own time, and I will always be her biggest cheerleader.
A brief, tiny moment in my daughter’s life during my pregnancy changed the course of her future dramatically. In many ways Addison is your typical child, and in some ways, she has to work much harder at the things that come easy to most, because of her stroke.
The biggest message I have ever shared to anyone is that my daughter, our children- are bigger than any diagnosis, they will amaze and inspire us with their ability to overcome. Never lose sight of that.
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