Jake, age 15, who is diagnosed with Mito and CP
Seasons of Love
by Tonia Rowe
On January 29, Bella celebrated her eighth birthday.
Every year I am amazed at how much she has been through and achieved in
her short time on earth. As any of you who have children with special
needs know, there are many emotions you experience over the years with
them.
It starts with the pang of
uncertainty and doubt when faced with the initial diagnosis. Will I be
able to handle this? Am I strong enough to make the right decisions for
them? How will this affect the rest of our family?
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A Break from Mito
by Meghan Clement
My son Eric and my sister Amy just got on the road to head to Nashville. Amy realized it was once again time for a much-needed break for my husband and I. She will be taking him to his seating and mobility appointment tomorrow at the Vanderbilt Rehab Center and then Eric is going to spend the rest of the weekend with his aunt. While Eric is in Nashville with Amy, my husband and I are going to go on a little get-away to the Smoky Mountains. We will be going with our good friends and hopefully we will be able to enjoy our time away. I hope I won't be a big ball of nerves all weekend!
As I was putting Eric in his car seat today, I could feel myself trying to savor every little thing about him. This weekend is a VERY much-needed break, but it is times like this that make me hate Mitochondrial disease the most. As a parent of a child with a medical condition, you never really want to think about the reality of your child's condition, but somehow reality always seems to sneak itself into your mind.
by Meghan Clement
My son Eric and my sister Amy just got on the road to head to Nashville. Amy realized it was once again time for a much-needed break for my husband and I. She will be taking him to his seating and mobility appointment tomorrow at the Vanderbilt Rehab Center and then Eric is going to spend the rest of the weekend with his aunt. While Eric is in Nashville with Amy, my husband and I are going to go on a little get-away to the Smoky Mountains. We will be going with our good friends and hopefully we will be able to enjoy our time away. I hope I won't be a big ball of nerves all weekend!
As I was putting Eric in his car seat today, I could feel myself trying to savor every little thing about him. This weekend is a VERY much-needed break, but it is times like this that make me hate Mitochondrial disease the most. As a parent of a child with a medical condition, you never really want to think about the reality of your child's condition, but somehow reality always seems to sneak itself into your mind.
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"I So Tired"
by Amber Ferrell
There is something so special about rocking a child. Wrapping your arms around that warm miniature body...patting his behind with one hand and running your fingers through his hair with the other as your hearts beat against one another. Your calves getting a mini-workout as you use tip toes to push off the ground in a rhythmic rock back and forth, back and forth, as you try so desperately to lull the child to sleep. There is something so special about this time...about the closeness you experience for those few minutes. There's something precious about the stillness and contentment that happens as your child's eyes flutter into the initial stages of sweet slumber.
Rocking my children has always been one of my favorite pastimes, but lately my heart has become heavy each time this scenario plays out with Nathan. Hoping that it is a transient issue like so many other symptoms with Mitochondrial disease, Nate has been having an increase in his level of fatigue lately. He can still run around and play like a normal kiddo for brief periods of time, but his little body seems to get exhausted quicker and stay that way much longer than most.
by Amber Ferrell
There is something so special about rocking a child. Wrapping your arms around that warm miniature body...patting his behind with one hand and running your fingers through his hair with the other as your hearts beat against one another. Your calves getting a mini-workout as you use tip toes to push off the ground in a rhythmic rock back and forth, back and forth, as you try so desperately to lull the child to sleep. There is something so special about this time...about the closeness you experience for those few minutes. There's something precious about the stillness and contentment that happens as your child's eyes flutter into the initial stages of sweet slumber.
Rocking my children has always been one of my favorite pastimes, but lately my heart has become heavy each time this scenario plays out with Nathan. Hoping that it is a transient issue like so many other symptoms with Mitochondrial disease, Nate has been having an increase in his level of fatigue lately. He can still run around and play like a normal kiddo for brief periods of time, but his little body seems to get exhausted quicker and stay that way much longer than most.
Focus: Living with Mitochondrial Disease
Taking Mito to School
by Melody Pohla
"What if he gets overtired?" "What if his stomach bothers him?" "What if he crashes?"
Mitochondrial disease is so unpredictable and never seems to affect two people the same way, so the never-ending questions and worries ran rampant in my head as the first day of Kindergarten approached. I could not stop imagining all the terrible things that could happen to my child due to the stresses a full day of school could bring. Nicholas had been in preschool two days a week for two years prior, but it was a small class, it was not a full day, and he had a day of rest between the days he was there. That put me at ease that he would not overdo it. Full day Kindergarten, on the other hand, just loomed at the end of the summer...big, anxiety-ridden, and unknown.
by Melody Pohla
"What if he gets overtired?" "What if his stomach bothers him?" "What if he crashes?"
Mitochondrial disease is so unpredictable and never seems to affect two people the same way, so the never-ending questions and worries ran rampant in my head as the first day of Kindergarten approached. I could not stop imagining all the terrible things that could happen to my child due to the stresses a full day of school could bring. Nicholas had been in preschool two days a week for two years prior, but it was a small class, it was not a full day, and he had a day of rest between the days he was there. That put me at ease that he would not overdo it. Full day Kindergarten, on the other hand, just loomed at the end of the summer...big, anxiety-ridden, and unknown.
Unusual Presentations of Mitochondrial Disease
by Jessica Hilliard
I stared at the floor after the doctor finished speaking. From the corner of my eye, I gazed distractedly at the growth chart clutched in my right hand, trying to collect my thoughts. It was a standard pink and white "Girls Newborn to 3 Years" chart, dotted with tiny black points showing weight in relation to age. Try as I might to assemble an intelligent response to the doctor's comments, my mind kept hiccuping as my eye caught the pattern of data on the chart. From top to bottom the page was filled with sweeping curves; a multitude of rainbows demonstrating the proper way little girls should grow and gain weight. But like single-minded insects, the dots representing my daughter's "growth" marched downward toward the bottom of the page, ignoring the clearly marked paths. A bad headline, the words, "Failure to Thrive," had been written in sloppy red letters at the top of the chart and circled by an unknown specialist.
by Jessica Hilliard
I stared at the floor after the doctor finished speaking. From the corner of my eye, I gazed distractedly at the growth chart clutched in my right hand, trying to collect my thoughts. It was a standard pink and white "Girls Newborn to 3 Years" chart, dotted with tiny black points showing weight in relation to age. Try as I might to assemble an intelligent response to the doctor's comments, my mind kept hiccuping as my eye caught the pattern of data on the chart. From top to bottom the page was filled with sweeping curves; a multitude of rainbows demonstrating the proper way little girls should grow and gain weight. But like single-minded insects, the dots representing my daughter's "growth" marched downward toward the bottom of the page, ignoring the clearly marked paths. A bad headline, the words, "Failure to Thrive," had been written in sloppy red letters at the top of the chart and circled by an unknown specialist.
Teens and Mitochondrial Disease
by Heather "Kass" McNair
Years back, when all three of my children received a diagnosis of Mitochondrial disease, there was a real shift in our philosophy of life. We learned to focus on the day at hand, and not allow ourselves much time contemplating the future. It was always there, but then, as now, I was just going to be happy if we got them to adolescence. We would deal with the issues, and joys associated, when we got there. I am happy to say we are THERE, and actually have been for a few years, and it has indeed presented with new challenges and joys, but also a perspective I had not anticipated.
by Heather "Kass" McNair
Years back, when all three of my children received a diagnosis of Mitochondrial disease, there was a real shift in our philosophy of life. We learned to focus on the day at hand, and not allow ourselves much time contemplating the future. It was always there, but then, as now, I was just going to be happy if we got them to adolescence. We would deal with the issues, and joys associated, when we got there. I am happy to say we are THERE, and actually have been for a few years, and it has indeed presented with new challenges and joys, but also a perspective I had not anticipated.
Specialty Article
To most parents, the idea of intentionally making their children sick is a foreign one. To most parents who have seriously ill children, the idea is all the more horrifying.
Unfortunately, there does exist a tiny subset of the population that deals with a serious mental illness called Munchausen Syndrome by Proxy, a disorder in which a caregiver--most often a mother--actively makes her child sick in order to gain attention. More recently, the condition has also been called Medical Child Abuse. Caregivers with this condition are often extremely good at covering their tracks and many times, if not stopped, will continue until their children are very severely harmed, or worse.
Feature Article
Our grief journey began when our son Kyle was diagnosed with a Mitochondrial disorder, a progressive incurable disease. We were not fully aware at that point that we had started on our grief journey. Kyle took the lead and created what would become our motto: "we can focus on the bad and be sad, or we can look on the bright side."
While Kyle was alive, we started looking on the bright side and using our experiences to help others. We did this by starting a local Oley support group and reaching out to other families who had a child on home nutrition therapy or whose child had a Mitochondrial disorder. Kyle always encouraged others to look on the bright side and remember there is always someone who is worse off than you. Kyle and his "help others" attitude inspired our family. As his condition worsened, he encouraged us to continue to give to others.