BY ELIZABETH SCHUSTER

I have been a worrier my whole life.  I can remember worrying when I was as young as first grade.  I worried about being late to school, disappointing my teachers and my parents, or hurting my friends.  You name it and there’s a good chance that I have worried about it.  I have even had such outlandish worries like my house spontaneously starting on fire or becoming overrun with bats and mice.  Could there be a volcano in Massachusetts? If so, my house is right on top of it….don’t think I have not worried about that! You could say that I have spent a large portion of the first 37 years of my life in various degrees of worry.

When I was pregnant with my first child, I worried about everything I did, ate, even thought.  I read an article while pregnant that said mothers who worried or had anxiety had an increased risk of having a child with mental health issues. Great, I thought, I’m ruining my child before she is even born. (Fortunately, no signs yet of her having mental health issues.) My second  pregnancy was smooth and I worried less.  And by the time I was pregnant with my third child, I was simply too exhausted to worry….as much.  I would always get a bit worried leading up to tests and ultra-sounds, and release a sigh of relief when everything came back normal.

But then came the first blow, a tumultuous birth followed by a long stay in the NICU while doctors ran test after test trying to determine the cause of my daughter’s medical problems.  Again, the sigh of relief when we were finally discharged with the doctors saying that they couldn’t find a single thing wrong with Adelaide—she’d just had a rough start to her life.

After a few months at home with the new baby, my worrying amped up again; and this time my husband and pediatrician listened.  Adelaide was not hitting her milestones, and after having two other children I knew something was drastically wrong.  Over months of testing and meeting with specialists, we received a diagnosis that is every parent’s worst nightmare: our daughter has a rare disease that is literally destroying her brain matter.

Guess what?  Spending my whole life worrying about the What Ifs still did not prepare me for this.

In the months since the diagnosis, I have certainly reflected on life.  While I cannot say that I no longer worry, I can say that it has toned down considerably. So much so that family members and friends have noticed the change.  My priorities in life have gone back to the basics.  I don’t worry about my older children being academically brilliant.  So far they are pretty average, and I am beyond happy that they have their health, friends, and activities they love to do.  (How sad is it that my oldest daughter’s teacher found my attitude regarding her mediocre academic achievements refreshing ?! Parents worrying that their child is not brilliant is a topic for another day.)  I have stopped worrying about saying the wrong thing to people.  When you have a child with a life-limiting illness you start to cut to the chase in conversations with people.

Our whole family has been brought into this world of special needs children that is equal parts beautiful, heart-breaking, heart-warming, and overwhelming.  Life and my mental state will never be the same. Practically speaking, the worrying has had to decrease just to make room for the sheer volume of work that is required of a parent of a child with special needs and/or a life-limiting disease—it simply has to take a back seat when I am juggling doctor’s appointments, OT, PT, and swim therapy.

A close friend of mine who has known me since my big, bad hair days in high school says that without my constant underlying worry, I have become a more accepting, calm, and humorous person. Hard to believe that humor has taken hold during a time like this, but it’s true, and I suspect a lot of parents in this situation can relate. Sometimes levity is what we need most when things feel overwhelming. I’m happy to replace the worry with a bit of humor.

I had spent my whole life worrying about the “worst case scenario.” After being confronted with it, I have been able to come out the other side and still lead a full, loving, and dynamic life with ALL of my beloved children and husband.  I can truly say that having a child with a terminal diagnosis has changed my outlook on life—for the better.