If you are the parent of a child with special needs, you are
likely very well aware of the divorce statistics for our cohort. Our marriages are significantly more likely to
end than our peers with healthy children. It just seems cruel that the disorders that
try to steal our children attack our marriages too. The truth is though we can experience stress
levels similar to those of soldiers in combat and that puts strain on even the
healthiest relationships. Our marriages aren’t doomed though. We just need to understand what we are facing
and protect our relationships while we weather the storm.
I think that most couples initially go one of two ways when
faced with a crisis like a child’s diagnosis: denial or obsession. Many people feel so overwhelmed by what they
are facing that they avoid it at all costs.
Those couples may fight about trivial things or become overly involved
in other activities because facing the threat to their child is just too
terrifying. Others, like my husband and
I, become laser focused on the medical situation. It seems easier to juggle the advice of
multiple specialists, a whole new drug regimen and a child with a very
uncertain future when you block everything else out. For a little while that works but in the long
run, it just isn’t sustainable.
When my daughter first started having seizures it was all
consuming. Everything we did revolved around epilepsy. Every conversation was
related to her health. Every nightmare
consisted of her seizing until her little body couldn’t seize any more. Nothing
mattered but keeping her alive. We were
in survival mode. I remember a conversation I had with Curt one of the times
that we were in the hospital. I told him
how impressed I was that we had been able to fall together instead of apart. I didn’t mean that we were a super couple who
never faltered. We just felt so little support at the time that we were forced
to lean on each other while we went through hell always thinking that the storm
would pass and we would go back home to our normal lives.
When the dust finally started to settle and we came home to
this life that was far from normal, we faced a whole new challenge; our family
had to learn to talk to each other again.
It wasn’t that we weren’t speaking at all. It just felt awkward to talk about anything
that wasn’t related to epilepsy.
Suddenly, telling my husband about the woman who was a jerk at school
seemed really trivial. Bragging about
our son’s report card at the dinner table felt wrong when his sister might
never learn to read. We used to sit up
and talk for hours but every interaction had somehow shifted into a medical
conference. Even though he was always
right there with me, I missed the connection to the man that I needed the most.
After weeks and weeks of nights that were spent at the
hospital or lying beside our seizing princess, we were finally able to sneak
away by ourselves for a few hours. As we
pulled out of my parents’ driveway after dropping of the kids, we made a
decision that I think is a large part of why we are still together three years
later. We decided not to take epilepsy
on our date.
When we decided not to talk about Alyssa’s health that
evening, it freed us up to talk about everything else we had been
neglecting. We went to a steak house and
talked like we used to. All of the day
to day conversations that had been deemed too trivial to mention were up for
discussion. The longer we spoke the more
the murky medical haze seemed to life and we reconnected in a way that my soul
desperately needed. I don’t remember
what he was said that night, but I vividly remember looking across the table
and breathing deeply, knowing that we were going to be ok. When we picked the kids back up, I felt like
a weight had been lifted. We still faced
incredible odds with Alyssa but I knew we were facing them together.
If you and your partner avoid the giant medical elephant in
the room, you might consider setting aside a specific time to discuss it. Sit down together and don’t get back up until
you have confronted the fears and made a plan to fight this fight together. However, if you feel like your partnership
has become more about your child’s medical needs than about romance, I highly
recommend that you take a date this Valentine’s Day and leave the diagnosis at
home. Give yourselves a chance to
reconnect with each other without focusing on the disorder. It will still be there when you get back but
it might not look as overwhelming when you know that you aren’t fighting it
alone.
