It takes a village to raise a child. And when your child has multiple medical needs, that village includes not only family and friends, but many specialists.
When my youngest son, Matthew was born, this idea was new to me. It was also scary because I was treading new waters and didn’t know how to begin. Thankfully, his pediatrician was the person willing to guide me. So, I dove right in. With each new challenge to his health, we added to our special team. As I found doctors, I would check in with her and she would coach me and guide me. I depended upon her to assist with our navigation. She became my coach and the captain of our team. Unfortunately, she passed away unexpectedly.
Without her, I knew it was up to me. It did not take long for my fear to turn into confidence. I quickly learned to listen to my intuition. Walking into a doctor’s office and starting the conversation was all I needed to do to determine whether we would return.
I was the new team captain.
I leaned on the other specialists on the team for guidance. I learned to walk the path and face obstacles as they came.
This isn’t a straight, paved path. It is a gravel path with twists and turns. For me, accepting that idea was a journey in itself.
Matthew brings joy and happiness to the world and motivates others to do the same. He is nonverbal, and has a high tolerance for pain. And let’s face it, most of our people with medical needs do have a high tolerance because they have been dealt challenges since day one. These two qualities in Matthew put the responsibility on me to learn how to read him, learn the medical terminology, research the options, and double check the specialists, even though trust has been developed. I became, what I would consider a "Matthew expert".
By the time Matthew was 8 years old, a team of ten or more doctors, therapists, and clinicians was formed. Team development didn’t stop, but it slowed down and comfort levels remained stable.
Fast forward to age 22. Those comfort levels are diminishing, and I feel like I am starting over. We had a team that I could depend upon by pulling them front and center as needed. Now that is changing.
As Matthew's mom and primary caregiver, I know when Matthew isn’t well. Finding the exact cause of the problem is much harder.
I observe him, use my intuition, then, based on my experience, determine which specialists are up to bat.
However, the team we developed and maintained all these years are now “releasing” us to find specialists who work with adults. What? Our team now must be re-constructed.
I would expect this to be easy by now. I have built and managed a team for 22 years. However, this phase brings new challenges. I know what he needs from each team member, but in the adult world, the specialists aren’t as accommodating. When I ask for a referral, I get a practice, which is composed of about eight doctors to choose from. Nobody knows which doctor will be a good fit for us, or if the doctor will have the qualities I find essential: listens to me, gets us in when Matthew is sick, does tests when they are needed, and thinks outside the box. Unfortunately, these qualities seem to be foreign in this adult healthcare world.
So, I find myself back in the original world, spending hours a day making appointments, welcoming (or passing on) team members, becoming that coach who must train the new team.
This idea is tiresome, but then I remember, we have done this before. We navigated and got to our comfortable place. Now I must work to get us to that point again.
I am glad for the journey we have taken because it formed us into the people we need to be in order to walk this path again.
God willing, we will reach our comfortable place. Our family and friends have multiplied, so we have the support and cheerleaders we need to navigate successfully. It’s another phase and we are up to the journey.
Advocate, Changing Spaces Ohio
“Be fearless in the pursuit of what sets your soul on fire.” – Jennifer Lee