Random Thoughts on Transitioning a Medically-Fragile Child to Adulthood

By Jeanne E. McMullen

My family had a great deal of anxiety and sadness as we approached the age of transition into adulthood.  After 18 years of frequent inpatient and outpatient care, we had developed a sort of love/hate relationship with Children’s Hospital.  Though we often looked forward to the day we would never have to return, there was no denying the facility was our safety net.  We couldn’t imagine going anywhere else.

Our pediatrician too had become a trusted, steady guiding light while over the years we sailed stormy and unpredictable seas through uncharted territory.  Throughout most of my daughter’s life, I couldn’t wait for her to reach adulthood, to reach that magical age that I thought would bring answers so desperately awaited to the collective unknown of all my biggest hopes and worst fears.  Yet upon nearing that age, I now wanted to stop the clock and stay in my comfort zone, just like my daughter.

These anxieties were heightened as we also had to navigate significant changes in health insurers.  In addition to waiting for the two largest insurers in the region to battle it out in the courts and on the front pages, we had to navigate through changes in how the state and federal government supports individuals with disabilities once they become 18.  We learned that some mistakes, no matter how simple, cannot be easily reversed.

We navigated through the educational options available to transitioning students.  Day programs, waitlists, PUNS, critical versus urgent need…..

And the most daunting decision of all, how do we ensure our child, no longer a minor, would be protected from those who could do her harm.  We weighed power of attorney with the limited protection it provides versus legal guardianship, with the overwhelming time and expense involved.  We tormented ourselves with what if scenarios…

At times, we felt like we were nearing the proverbial cliff…

Yet, we landed on our feet.  We moved past the mistakes and made new allies.  Our pediatrician was able to ease the transition by recommending someone appropriate to take on the level of care needed by our child.  We kindly asked the educators to patiently repeat our options until they finally made sense.  We replaced medical appointments with legal appointments.

Among the many things we learned:

Our caseworker is our new best friend, worthy of a place on our speed dial, right after husband and child. Because the best mistakes are those not made in the first place.

The next slot on speed dial goes to our other new bestie — the nurse in our new primary care physician’s office.

The best physicians are interested in what their patients can contribute to the appointment, regardless of ability.

That our adult children are always welcome at Children’s Hospital and when they should be our first choice, and when they should not.

There are many hard-working, dedicated workers in adult day programs.  If that’s not apparent, we’re with the wrong program.

That legal guardianship is a very expensive pain in the butt, and yearly chore.  But peace of mind is priceless.

And the most important lesson of all……our daughter turned out OK. Really. Truly. She’s OK.  She is not following in our footsteps, or fulfilling the dreams we had for her so many years ago.  Instead she is blazing her own trail, reaching her own goals, realizing her own potential. Her life has meaning; she has worth.  And isn’t that what we expect of all children?”