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Dr. Gwenn's Mito Minutes #3
Normal Is In The Eye Of The Beholder
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference
As we travel through life, we carry with us a road map in our minds of what our life will be like.
Sure, the images are hazy and the paths often covered with dust but we have a sense of where we are going and what the picture may end up looking like at the end of the road. However, if our journey takes an unexpected twist or turn, our life's map becomes suddenly more hazy and that is often unsettling and difficult to negotiate.
That is often the feeling expressed by families who learn their child has been diagnosed with mitochondrial disorder, or an adult who learns later in life they actually have a mitochondrial disorder. Panic sets in because one desperately wants back that "normal" map, the one you created from others around you. As you'll soon realize, you can have your map back and consider it "normal" again. But, there is a catch. Read on and I'll get to that.
The Elephant In The Room
We all desire to be "normal" and to fit in. We are wired as human beings to be like that and to mold our families around that concept. On many levels we strive to be part of the general pack, while on others we appreciate and recognize our differences. Whether visible or invisible, all families have something that sets them apart from the pack. We may opt not to publicize it but no doubt we all have something. The key is to not define ourselves by other people's standards but instead to live by our own standards. That is all we can really do.
With mitochondrial disease, families become concerned at times because the disorders are hard to explain and parents may worry about their children being labeled or treated unfairly as a result of their disorder. While we all cope with medical problems differently, I feel naming the elephant in the room is the only way for the child to learn they are normal. In a given classroom, kids may have a range of challenges from diabetes to allergies, from learning issues to cancer, from mitochondrial disorders to juvenile rheumatoid arthritis to autism. Kids feel normal when they learn to take control over their situation and part of how they do that is to learn to talk honestly about what they have and include their peers in that conversation. The first step to accomplishing that is for their parents to be able to have those conversations with teachers and other parents.
Is your family normal?
Every family has its issues, health or otherwise. If you look at the big picture of a family, marriage, jobs, size of family, income, child care, stress, laundry, grocery shopping, house work, paying bills and the need for couple time and family time are components of every family. In every family, Mom and Dad need time away from the kids on occasion. In each family, each child needs time with Mom separate from the other kids. And, in each family, each family member has different likes, dislikes, wants, needs and issues. That's just part of being in a family.
For families who have a child with Mito, the issues above are still the same but compounded because that child will have intense issues that will unpredictably change day to day. The ultimate question is how to create normalcy in a way that meets the needs of your family unit. This is what parents CAN focus on.
Empower Your Child
For kids, normal is about doing what other kids are doing, as well as recognizing that they are normal by doing things other kids can't do. This is what makes us unique individuals. The earlier our kids internalize that message, the more solid their sense of self becomes and the more established their self-esteem. For kids with Mito, this is no different except one must get more creative to find appropriate and rewarding activities for your child. One must also embrace flexibility and be realistic about how your child will participate due to the medical realities of Mito.
Without specifically asking, all the moms I interviewed for this article told me that their number one priority was finding activities that gave their child confidence and maximized quality of life.
They sought activities that their kids seemed interested in, and then worked with teachers to around their Mito issues so their child could participate when at baseline. For example, Kirstin's daughter loved to fence and they found a fencing school that allowed them to come when she was at her best and worked with her privately.
For most Mito families, travel is hindered by energy of the child and the toll the actual travel takes on the child. Yet, most agree that it is important to get out and for parents to have frequent dates to keep their marriage alive. Day trips, local overnights at hotels, recruiting family on a recurring basis, finding reliable local college students to help can help to provide respite. Some cautions that were raised by families of older Mito kids were to avoid having the family schedule always be centered around the Mito child's schedule. All Mito families noted the importance of allowing the kids who are not affected by Mito to be able to have their time to explore their lives to the fullest.
Have a Philosophy
The moms with Mito kids who are now teens all seemed to not only develop a daily or life philosophy of sorts but a great sense of humor. For Kirsten, her philosophy was to remember that "It's their journey". She feels that her job is to find a way to help her kids live out their dreams.
For Wendy, she tries to remember to not be negative. "If you are too negative, you'll think negative. Mito can be lived with. You have to give hope".
All moms seem to agree on one thing, you have to live life to the fullest today. The philosophy I heard overwhelmingly was carpe diem or, seize the day.
Taking Control Day By Day
When living with a chronic condition, the overwhelming task is to not become consumed with the condition and to remember there is a life to life. Most Mito families discover early on that it becomes all too easy to become consumed with the "what-ifs" of the future and quickly take action as they learn to maximize their child's energy better.
As Theresa Couture likes to say, "Start with the end in mind". So, if your child wants to sing, find a way to make it happen. If you and your husband need a night out, don't become consumed with the IV tubes talk to your more experienced Mito friends (or call Mito 411) and find a way to make it happen. There is always a way to get done what you need in order to live. In fact, a few of the more experienced Mito moms mentioned they felt a sense of "battle fatigue" early on by living by the demands of the disease. This feeling was eased after learning to allow themselves to enjoy life and, more importantly, LIVE.
The Three L's
So, with all this in mind, the path you thought was less traveled is actually very well traveled by every parent to one degree or another every day, and for Mito parents, and parents of kids with all sorts of other medical problems, remembering this can be helpful because there is a world of parents among you to call upon for support.
The difference between your family and a family whose child does not have a medical condition is the importance and amount of time spent on the medical path. For you, you'll always have a toe on that path but it should only be a toe unless your child's symptoms warrant more. Like every other family, you need to keep your eye on the work of living which I've dubbed the 3 L's: learning, loving and laughing.
So, what is normal?
Normal is whatever path allows you to maximize the 3 L's and minimize the amount of energy spent thinking about the "what-ifs" that go along with mitochondrial disease. That's the catch.
So, here's to a life filled with 3 L's and all that goes with it for your entire family. Focus on those always and the Mito issues only when you need to. Make that your philosophy and you'll
soon realize you have that "normal" life because it's your life.
Gwenn Schurgin O'Keeffe, MD, FAAP