Ten Things I've Learned in Ten Years
Reflections from an FOP mom

1. Not everything doctors predict will happen.
Soon after Sarah was diagnosed, we were told that if she could not move freely because of her restricted joints, she might not be able to orient her body in the world and would have perception problems. She never had a problem. A doctor noticed that Sarah's face is asymmetrical and asked if she had double vision. She never has. These questions planted seeds of dread and worry which I have learned to put into perspective.

2. Parents have to stay in charge.
We can't let pity or guilt get in the way of setting limits and giving direction to all of our children. During times when my husband and I have become too tired or confused to make and enforce rules, the children have become ill-behaved and demanding and the whole family has floundered. It surprises me how well our children respond when we enforce stricter guidelines. Even during periods of flare-ups, when Sarah is in severe pain, she reacts positively when we tell her how she can and cannot behave.

3. The highs are higher and the lows are lower.
Another parent of a special needs child said this at a March of Dimes Support Group meeting. A lot of special needs parenting is the same as parenting healthy kids. There will be ups and downs, like anything in life. It's just intensified when you're raising a special needs child.

4. Take one day at a time.
Matthew 6:34 says, "Do not worry about tomorrow, for tomorrow will bring worries of its own. Today's troubles are enough for today." I've learned the hard way not to let troubles that may or may not happen in the future, even troubles that most likely will happen someday, overshadow what could be a perfectly good day today. Even if the dreaded thing happens, experience has taught me that it often isn't as bad to face the reality as to imagine it.

5. I've learned to take care of myself.
If I'm not well, physically, emotionally, and psychologically, I won't be able to take care of my family, and soon they won't be well either. I'm doing something for all of us when I exercise and eat well, get enough rest, and spend time with my husband. And though I preach this one better than I practice it, I believe in respite care. I can't let compassion or guilt or pity prevent me from taking time for myself or attending to other members of my family. By its nature FOP demands a lot of attention. But it shouldn't become the only factor in family life.

6. It helps to talk to other people.
Talking about the stresses our family is under helps keep me objective and makes me feel less sorry for myself. I do well when I have good, empathetic listeners. I also read books and articles about disability, about parenting children with special needs, and stories about people who have suffered. I find the stories especially inspiring because I have suffered too.

7. Life with FOP gets more demanding as the disease progresses.
Physical limitations and caretaking needs gradually but constantly increase. Parents get older and more tired, but the disease progresses in spite of it. Older parents are universally concerned about finding someone to care for their afflicted child when they can do it no longer. There were many families who were unable to attend the Second Symposium on FOP because they could not manage the difficulties of travel.

8. Disability doesn't mean that life isn't worth living.
Having a disability doesn't mean that victories aren't possible, or that gloom and doom must be the mood of each day. Disability doesn't mean a person can't lead a productive life. Everyday things just take more work, and we have to give ourselves credit for the effort it takes to accomplish what we do.

9. I've learned compassion.
There is something about suffering that changes a person. I would even venture to say that there are two kinds of people in thw world: those who have suffered and those who have not. There is a name for my camp. My family and I belong to the "community of those who bear the mark of pain." There are some advantages in belonging to this half of the world. Suffering makes us struggle and reflect about what we believe and what life means. This struggle makes us richer, deeper people. We learn things about what's important in life that can only be learned by suffering. My own suffering has given me compassion for others.

10. There's no one right way to do this.
Each person has different resources and coping strategies. Each family finds techniques that work and others that don't. Fathers and mothers often deal differently with pressures and demands of having a child with special needs. That can add stress to the marriage. One mother said, "My husband and I have our differences, but we both know that neither one of us alone could take care of our (adult) child with FOP." We need to give each other space to handle the pressures of having or living with a disability in our own way. Living with FOP is the challenge of a lifetime. There is no one right way to cope.

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