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A Letter to the Late Dana Reeve, From Eric LeGrand's Mother

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Dear Dana,

I get it. I truly get it.

I never had the pleasure of meeting you before your passing 10 years ago this month, but if you came back for one day, I would tell you that I understand what you went through. We both figured out how to move forward when our lives took an abrupt turn. Similar to your experience with your husband Christopher Reeve, my son, former Rutgers football player, Eric LeGrand, sustained a spinal cord injury that left him paralyzed from the neck down more than five years ago. When faced with this devastating injury, you and I didn’t spend time thinking about it. We mustered all of our strength and energy and quickly transitioned into our new role as caregivers.

woman and son in wheelchair on the red carpet
Karen and her son, Eric, on the red carpet.

Like Christopher, Eric’s injury was also in the limelight. I was blessed to have support coming from all directions, but I was hesitant to accept it. I thought: he is my son, and I have to do this on my own.

Caregiving is not easy, and I wish more people knew that it is a full-time, around-the-clock job, every single day. I do all the things my son is no longer able to do for himself. Tie his shoes, feed him, arrange transportation, get up in the middle of the night to scratch an itch. I completely understand what it’s like to devote your life to care for someone else and neglect your own needs. It started taking a toll on me.

But learning about your experience and listening to your advice, you helped me recognize that it is good — and at times necessary — to let people in and accept help. Now, I know that I can’t manage it all on my own — and it’s OK. I learned that asking for help doesn’t make me any less of a mother or a caregiver. I realize the importance of being specific when asking for support, such as help grocery shopping or asking the barber for home visits.

As caregivers, we need to nourish ourselves. Even small wins make a difference. An hour of television alone or a walk around the mall is like a mini vacation to me, and that time helps. It’s in everyone’s best interest that I’m the best version of myself, so that I can help my son live a successful and healthy life.

As devoted as you were to your own family, you saw the bigger picture, too, and pioneered the quality of life movement for all people living with paralysis — work that continues to make a tremendous impact today.

After Christopher’s accident, there was no centralized resource for help or support. You even compared understanding paralysis to trying to land on another planet without a map. You quickly became the champion this community needed, building support networks and resources that improve health and independence for those living with paralysis and their caregivers.

You also realized that caregivers must make their own well-being a priority, which is why having a supportive network is crucial for you and your loved one. By launching the Christopher & Dana Reeve Foundation Paralysis Resource Center (PRC) in 2002, you helped provide a wealth of information, resources and referral services for myself and many others in the paralysis and caregiver communities.

I thought you should know the total impact of the work you began cannot be fully measured. There are thousands of families worldwide who have benefitted from your vision, and we all are so thankful for your fierce dedication to enhancing quality of life.

Drawing from your strength, it is now also my purpose to reach out to other caregivers and help them to find ways to move forward, whether by sharing my experience or lending a hand. Every time I get a call that another person sustained a spinal cord injury, my heart drops, but I think of you and how you’d want me to help that family navigate their changing world.

For all that you’ve done and the movement you started: you’re my hero, Dana.

mother kissing her son on the cheek in stadium full of people
Karen and Eric.

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Originally published: March 21, 2016
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