Managing Change With Your Medically Fragile Child

In science, change is inevitable and drastic. Matter – the stuff we and our world are made of – goes through changes all the time. With shifts in pressure and temperature, solids change to liquids, and liquids change to gas. The outcome is something that looks and feels different than what we started with; a new normal.

Raising a medically fragile child involves lots of change. Our son, Richie, has had many ups and downs in the medical sense, and uncertainty is a way of life. From medications and therapists to routines and goals, I have had to learn not to get too attached to the way things are at any given moment.

The first time Richie’s pulmonologist discontinued two of his medications, the shock of that drastic change made me gasp. Since then, I have learned a few things about how to approach change and arrive at a new state.

Despite the uncertainties, I have found that it helps to make plans and have a vision of the outcome I would like to experience. Even if that vision has to be adjusted, knowing where we want to end up is sometimes more important than knowing how we will get there.

Accepting instability is another essential step in managing change. When we don’t have answers or don’t even know what questions to ask, things can seem out of our control. Ultimately, most things are out of our control, and learning to live with that fact can be oddly empowering. It can allow us to focus on the areas where we can make a difference, while relying upon hope, prayer, luck, or chance to fill the gap.

Change will happen whether we like it or not. Like ice melting into liquid water, change can make us more flexible. Bracing against it is useless. Instead, we can put our energy to good use by preparing and planning for the outcomes we want.

NikkiMontgomeryNikki (Charisse) Montgomery has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2013. In addition to being a professional writer and editor, she is pursuing a graduate certificate in patient advocacy. She is a hospital volunteer and a parent mentor, and she volunteers with Muscular Dystrophy Association. Nikki and Richie are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the hospital’s main entrance hallway. Nikki is a regular ProMedica HealthConnect blogger who hopes to inspire and connect with others through the Teachable Moments series. You can follow her on social media @madvocator.