When our children are babies, we learn to cope with one set
of difficulties, such as how to get them to take their enzymes without burning
their mouths, ensuring they swallow the applesauce, or whatever medium you use
before the enzymes digest it. And then there’s the challenge of finding a way
to entertain those little ones, so they cooperate with treatments when all they
want is to get down to crawl and play or toddle around.
Then they grow, and as they become adolescents, we plead, we
cajole, we fight, we do everything we can to entice them to sit down and do
their aerosols and chest physiotherapy (or pounding, as we called it) or the Vest. We beg them to “just say no” to cigarettes and so many of the other
things that teenagers often experiment with. We do all this, because we love
them, and we know the work, the commitment, the sacrifices made are worth it to help them grow up to live out their dreams, while all they want to
do is just be “normal,” which, of course, to them means no pills, no treatments.
Then, for those of us parents who are blessed to have our
children reach adulthood, we face a whole new set of problems that many of us
find ourselves unprepared for. Now they’re independent. They answer to us no more. We’re
thrilled as we watch them do what we’ve prepared them for. Perhaps they go to
college, maybe they get jobs and live out of reach of our daily supervision. At
this point, their independence dictates that they make the choices about their
health care. We discipline ourselves to avoid calling every day to check up on
them. Then, some of them marry. When that happens, their relationship with us
changes for good. Now, someone else replaces us as caretaker. That’s right and
healthy and good. But it isn’t necessarily easy for those of us who have, until
then, been their primary caregivers. We restrain ourselves from jumping in when
we’re sure we know best. We resist the urge to “check in” frequently.
Knowing that we must make that adjustment in our thinking
and our behavior and actually doing it are two very different things. Everyone
who has children experiences this to a certain point when their nest empties.
However, those of us who have committed our lives to caring for our children
who cannot be healthy and, quite honestly, might not survive without our time
and attention, undergo a more significant loss and experience greater anxiety.
So how do we deal with this? I have been forced into a
serious change of behavior by being told in no uncertain terms that I am not
allowed to ask about Holly’s health. Ever. At all. That’s hard for any loving
mother, but if I am to love her the way she needs to be loved, that’s what I
do. Not easy, but worth it to maintain the relationship.
Perhaps if you, as moms of children/adults with CF, realize
what independence means to them and take appropriate action from the beginning,
you can avoid the extreme, painful and anxiety-provoking consequenses I’ve
undergone. How do you do that? Well, obviously, I’m not exactly an expert at
it, but here are my suggestions:
1.
When your child leaves home, be sure to talk
about her activities, her interests, her friends, whether she’s enjoying her
life and other questions that parents of healthy children would ask them. Avoid questions about her health.
2.
Let your child take the lead in discussions
about health. If he wants to talk about it, he will. And, he will appreciate
the trust you’re demonstrating in his ability to be an adult and take care of
himself.
3.
Don’t automatically assume that you’ll go to
clinic visits with your child just because you always have. Wait to
be invited.
4.
When your child needs you, be there
unconditionally. Don’t shotgun her with questions about what she’s been doing
to care for herself and immediately tell her what needs to change. Ask
questions only occasionally and offer suggestions only if asked. Let your
intimate knowledge of your child and your intuition guide your
behavior.
5.
Let his CF specialist be the advice-giver. It
will go down much easier from an objective party than from mom. Resist the urge
to intervene.
This major change in your relationship to your child will
not be easily navigated. You will make mistakes. However, mistakes present an
opportunity for your relationship with your adult child to grow and improve as
you demonstrate trust and open a dialog about your fears and your child’s need
for independence.
And last, develop a tough hide and hang in there. It’s worth
it in order to maintain a close relationship with your adult child.
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