Jodi O'Donnell-AmesJodi is a parent, educator, former caregiver, ALS advocate, and public speaker. Jodi’s husband was diagnosed with ALS when their daughter was just two years old. Jodi is the founder of Hope Loves Company, the only nonprofit in the U.S. dedicated to providing educational and emotional support to children and young adults affected by ALS.
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What was life like before your husband’s first symptoms?
Before ALS, I was a teacher who was happily married to Kevin O'Donnell, and I was the proud mom of Alina, who was two and a half at the time of diagnosis. We were thinking about the things that parents and young couples think about at ages 29 and 30 – the next house, the next job, and maybe the next child.
What were some of Kevin’s early symptoms?
He had charley horses in bed at night, and then started dropping things. When he tried to go skiing, he couldn't stay on the skis, and then when he fell, he couldn't get back up. The biggest sign came when our daughter was two and a half and we all went for a bike ride. She was on one of those little toddler seats on Kevin's bike, and he fell. We had to get somebody to help us because he didn't have the strength. We knew then that something was terribly wrong.
How did you react to the diagnosis?
We were in disbelief, of course. I didn't really know much about ALS and neither did Kevin. And our first question was: How do we do this? Our focus was to make things as normal as possible for Alina. We immediately started to think about how to live and create memories in a life that would be shortened.
We were blessed to have family and friends around us consistently, and we concentrated on our family and welcomed people to support us in ways that wouldn't take away from our quality time. So if that meant someone picked Alina up from preschool, then that meant more time that I had with Kevin. I knew my time with Kevin was short and believed my time with Alina was not, so you have to pick and choose because you can't do everything.
He lived five and a half years after his diagnosis. The last year and a half he was on a ventilator, which he decided to do after three days of reflection and goal setting. I'm so glad that he did because we did some really fun things. And I think that I can honestly say that ALS may have taken Kevin, but ALS never took Kevin. He remained the fun, creative, and amazing husband and father that he always was. He just had ALS while doing it.
We were blessed to have family and friends around us consistently, and we concentrated on our family and welcomed people to support us in ways that wouldn't take away from our quality time. So if that meant someone picked Alina up from preschool, then that meant more time that I had with Kevin. I knew my time with Kevin was short and believed my time with Alina was not, so you have to pick and choose because you can't do everything.
He lived five and a half years after his diagnosis. The last year and a half he was on a ventilator, which he decided to do after three days of reflection and goal setting. I'm so glad that he did because we did some really fun things. And I think that I can honestly say that ALS may have taken Kevin, but ALS never took Kevin. He remained the fun, creative, and amazing husband and father that he always was. He just had ALS while doing it.
How did your daughter adjust over the years?
Having a father with ALS was normal to her, but when she went to visit other children her age and do other things, she actually was angry about it and would say things like, "Why can't my daddy do this? Why can't we do that?"
She was very aware of how it was affecting our family, and I never really had the courage to say that daddy was going to die. I just kept saying he was very sick. I couldn't express it as an adult, so how do I tell that to a seven and eight year old before he passes? I couldn't come to terms to myself.
She was very aware of how it was affecting our family, and I never really had the courage to say that daddy was going to die. I just kept saying he was very sick. I couldn't express it as an adult, so how do I tell that to a seven and eight year old before he passes? I couldn't come to terms to myself.
What were some of the fun things you did with Alina?
We did so many wonderful things that I get teary-eyed just thinking about it. When Alina was upstairs playing in her playroom, I would come up and take videos so that Kevin could see what she was doing when she was out of sight. This was back in the day when we used VHS tapes. Kevin always smiled when he saw them. And sometimes she would read books to him.
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When Kevin had his Permobil wheelchair, we would give neighborhood kids rides. It went seven miles an hour and was fun. You may not be able to automatically bring ALS into children’s worlds, but you can gently bring them into the ALS world. Children are so compassionate. You can help them understand something that's very foreign to them by allowing them to experience it in a way that's comfortable and meaningful to them. So giving kids rides was wonderful. I also went into Alina's school and read books and talked about ALS.
Tell us about the books you’ve written.
The Stars That Shine is a book for elementary school children. It’s the story of when Alina wanted to be in a parade, but daddy couldn't walk, so they decorated the wheelchair and made it something fun so that she could participate in a new way that was meaningful. The book also has resources for supporting children.
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Someone I Love Has ALS: A Family Caregiver Guide has information about ALS and perspectives from different people in the journey: someone living with ALS, a teen with a mom who has ALS, and a young child. Dr. Terry Heiman-Patterson helped me write it.
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Tell us about Hope Love Company.
Hope Loves Company is the only nonprofit in the United States that provides both emotional and educational support to children and young adults whose lives are affected by ALS. So they either are supporting someone right now with ALS or they've lost someone. We have many programs, which are all free of cost.
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One is Camp HLC, a weekend retreat that takes place in six states. The person living with ALS is also invited to join. We also have group shares for parents, group shares for children, and scholarships. We send Hugs of Hope care packages, which is like a hug of hope of goodies to let children know that we are dedicated to their needs.
What is the camp experience like?
Camp HLC takes place in six states: New Jersey, Massachusetts, Indiana, California, Georgia, and Illinois. There's also one virtually. Everything we do is free of cost, so we gather as an HLC family on a Friday night, we have dinner together, you sleep in cabins, and then you do the fun camp experience.
But you also have the knowledge that everyone there is in some way associated with ALS. Their lives have been affected, too, so you're not alone in this disease. You can meet new friends, you can have fun, and you also have the opportunity to share resources, and to share your feelings and what's on your mind as you go through this journey. |
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How does the camp benefit children?
I can't even begin to touch upon the amount of testimonials and feedback that we've received. But the overall consensus is that children come to Camp HLC most likely never having met another child whose life has been affected. They may feel isolated, lonely, and anxious and feel like their peers at school don't really understand. They really don't have that person with whom they can connect and speak about ALS.
Camp HLC is an opportunity for these children to come together. The first thing they say is, "You welcome us, you include us, it's friendly, it's fun, and then we leave feeling like somebody else knows what we're going through." There's confidence and security in knowing that there are others out there like you.
Camp HLC is an opportunity for these children to come together. The first thing they say is, "You welcome us, you include us, it's friendly, it's fun, and then we leave feeling like somebody else knows what we're going through." There's confidence and security in knowing that there are others out there like you.
What do adults take away from the experience?
We do have parents attend—people living with ALS and their caregivers. Sometimes it's just caregivers, sometimes it's both. They really enjoy watching the children and feel that they've gained something as well, primarily the connections and resources.
Parents meet when the children meet and parents get to exchange information and resources. We’ll see parents meet for the first time at Camp HLC and find out they're ten miles from each other. It’s an amazing way to feel included in a world that really does not understand ALS for the most part.
Parents meet when the children meet and parents get to exchange information and resources. We’ll see parents meet for the first time at Camp HLC and find out they're ten miles from each other. It’s an amazing way to feel included in a world that really does not understand ALS for the most part.
How can parents support their children in general?
I think that one of the misconceptions we can have as parents is that if our children don't say anything, they're okay. And one of the overarching experiences is that so many parents assume that their kids are okay because they're not talking about it. Kids are very perceptive. They might assume you already have enough on your plate and they don't want to burden you by sharing even more.
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So just because your kids aren't saying anything doesn't mean that they don't have worries and concerns, and I'll give you a great example of this. At one of our first camps, we had a young man who was 12 years old. He was a big kid. He, his mom, and his dad who was living with ALS came.
The young man was crying a lot—not over discussing ALS, but over other things. For example, he fell and even though he didn't even hurt himself, he started crying. And his mom said, "I have no idea what's going on with my son, this is not him. I am so sorry." And I said, "Why are you apologizing? This is the first chance that he has felt safe to cry.”
It was an eye-opening experience. Children need to feel like it's safe to do it and that it's okay to do it. And even if parents are loving and supportive, kids might have the emotional intelligence to think, "I don't want to burden anyone," or "I don't want to bother anyone." So it is amazing because we just assume. But we have to open our eyes.
The young man was crying a lot—not over discussing ALS, but over other things. For example, he fell and even though he didn't even hurt himself, he started crying. And his mom said, "I have no idea what's going on with my son, this is not him. I am so sorry." And I said, "Why are you apologizing? This is the first chance that he has felt safe to cry.”
It was an eye-opening experience. Children need to feel like it's safe to do it and that it's okay to do it. And even if parents are loving and supportive, kids might have the emotional intelligence to think, "I don't want to burden anyone," or "I don't want to bother anyone." So it is amazing because we just assume. But we have to open our eyes.
How can parents open that line of communication about ALS?
Talking to children is very important in keeping communication open, but it's also important to know your child. Knowing their biological age is one thing, but what is his or her maturational age? What is his or her style of communicating? Are they an introvert? Are they an extrovert? Would it be better to put a book in his or her room and say, "Hey, what do you think of the book?"
I feel like the most ineffective way is just to come out and say, "Let's talk about this." Because it's like when your kids come home from school and you say, "Oh, how was school? 'Fine.' What'd you do? 'Nothing.' Really, you did nothing at school?"
I think if it's cause and effect, like let's read this and then discuss it, then it's another assignment. So you have to just appeal to child senses and to their personality, through something that may interest him or her.
At camp we share an essay by a former camper about when her life was turned upside down. It's a brilliant essay from a 17 year old's perspective. For a 16 or 17 year old, that speaks so much more than for me to say, "How are you feeling? Are you coping okay?"
Also being aware of who your children are and any behavioral changes that take place in any situation. As parents, we want to notice when things change, because when things change, something is happening. It could be positive or it could be negative. It's an awareness.
We get a lot of calls about when to bring up this conversation and we don't have a one-size-fits-all answer. It really depends on how old your child is, how many questions they're asking, and what the communication dynamics are for the family and everyone involved.
We've had families with four year olds who are starting to ask questions. What do you need to tell them today? What do they need to know today that's not going to cause them enormous anxiety or anticipatory grief, but at the same time feel as though you're communicating honestly? So we encourage open communications, but we also suggest that you take into consideration your age of your child, their maturational level, and your family communication style, because it should work for everyone.
When I talk to families, I suggest that you don't just say, "Before dinner, let's read this book together." You want to make sure that it's a peaceful moment. You need to allow time for questions and gently start the conversation. Start where you are and do your best.
I feel like the most ineffective way is just to come out and say, "Let's talk about this." Because it's like when your kids come home from school and you say, "Oh, how was school? 'Fine.' What'd you do? 'Nothing.' Really, you did nothing at school?"
I think if it's cause and effect, like let's read this and then discuss it, then it's another assignment. So you have to just appeal to child senses and to their personality, through something that may interest him or her.
At camp we share an essay by a former camper about when her life was turned upside down. It's a brilliant essay from a 17 year old's perspective. For a 16 or 17 year old, that speaks so much more than for me to say, "How are you feeling? Are you coping okay?"
Also being aware of who your children are and any behavioral changes that take place in any situation. As parents, we want to notice when things change, because when things change, something is happening. It could be positive or it could be negative. It's an awareness.
We get a lot of calls about when to bring up this conversation and we don't have a one-size-fits-all answer. It really depends on how old your child is, how many questions they're asking, and what the communication dynamics are for the family and everyone involved.
We've had families with four year olds who are starting to ask questions. What do you need to tell them today? What do they need to know today that's not going to cause them enormous anxiety or anticipatory grief, but at the same time feel as though you're communicating honestly? So we encourage open communications, but we also suggest that you take into consideration your age of your child, their maturational level, and your family communication style, because it should work for everyone.
When I talk to families, I suggest that you don't just say, "Before dinner, let's read this book together." You want to make sure that it's a peaceful moment. You need to allow time for questions and gently start the conversation. Start where you are and do your best.
How did you cope as a caregiver?
Caregiving is so complicated. It is a hard journey, but it's also a complete expression of pure love. So if I can help someone who's dying to feel like he has a voice and can accomplish things and he is safe and he's happy, then that is really the ultimate expression of my love. And when we caregivers get engrossed in that, our self-identity also becomes a part of that. Somehow they mesh together and you can easily lose your identity.
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I think that if time and space allows, the best caregivers are the ones who can find a place for their personal needs as well. It's so hard to do that, but I'll give you an example of the simplest way that I did that. And it's going to sound crazy and silly, but in many ways, it's something that saved me.
I took care of Kevin and I was always with Kevin, even when nurses were there. However, at 7:00 in the morning before I had to get Alina up from school, I would drive literally two blocks away to Wawa.
I would get a bagel with cream cheese and a big coffee and I'd sit in my car with the newspaper and I would sit there for 15 minutes and cry my eyes out. I really did this every day and got it all out. I would put on music and then I would come back ready. I needed that time to process. I'm an empath. I feel big and I needed a safe place to just process how sad I was.
I was sad and I either lived with that sadness all day and then it would pour into other lives or I expressed it, and got it all out in one big cry. And for me that worked. And if I could, I would walk late at night. Sometimes I'd walk at 2:00 in the morning and just cry my eyes out. I tried to get my crying out when no one was with me.
I took care of Kevin and I was always with Kevin, even when nurses were there. However, at 7:00 in the morning before I had to get Alina up from school, I would drive literally two blocks away to Wawa.
I would get a bagel with cream cheese and a big coffee and I'd sit in my car with the newspaper and I would sit there for 15 minutes and cry my eyes out. I really did this every day and got it all out. I would put on music and then I would come back ready. I needed that time to process. I'm an empath. I feel big and I needed a safe place to just process how sad I was.
I was sad and I either lived with that sadness all day and then it would pour into other lives or I expressed it, and got it all out in one big cry. And for me that worked. And if I could, I would walk late at night. Sometimes I'd walk at 2:00 in the morning and just cry my eyes out. I tried to get my crying out when no one was with me.
How did you create and preserve memories in your family?
As a teacher and as a parent, I was very concerned about creating and keeping memories. I knew that Kevin was passing and encouraged him to write love letters to our daughter Alina. At this time, he was unable to speak, so I read his lips. For every milestone, he created a love letter, which was a combination of how he handled that milestone and what he wished for her. So we have one love letter left, and I think this is part of why I'm so emotional. Alina gets married next September and she has one love letter left about marriage.
Having these letters is so wonderful because I get to open them up for the first time, too, and read them. And I know it's meaningful to Alina. It might be a little bit hard, it might set her back a couple days after reading them, but they're also precious.
I saw a video recently about the power of grief. People say to move on from grief, but this woman’s idea is that you don't. You never move on from grief—you move forward with it. Kevin will always be a part of my life, he will always be a part of Alina's life and his family's life, and we all do our best to move forward with the memories that we have.
Having these letters is so wonderful because I get to open them up for the first time, too, and read them. And I know it's meaningful to Alina. It might be a little bit hard, it might set her back a couple days after reading them, but they're also precious.
I saw a video recently about the power of grief. People say to move on from grief, but this woman’s idea is that you don't. You never move on from grief—you move forward with it. Kevin will always be a part of my life, he will always be a part of Alina's life and his family's life, and we all do our best to move forward with the memories that we have.