Session 5
Another 400-mile round-trip to the hospital was on the docket to round out 2016, the action-packed year that witnessed our Miracle Mayah’s homecoming from her lengthy NICU stay. It was a life-changing year for our family as we settled into our new role as caregivers/parents/advocates to our incredibly rare and medically fragile daughter.
We were heading back to Akron, Ohio for a sedated MRI. At our initial consultation with the skeletal dysplasia clinic, three months prior, it had been suggested that Mayah’s spine be examined more closely, and that it was protocol for patients with dwarfism to have this scan performed.
Once again, we came the evening before our appointment and stayed at the neighboring Ronald McDonald House. The imaging under anesthesia was successfully performed the following morning and we were out of the hospital by noon and on our way back home without incident. The intention of this session is to share the events that occurred while at the Ronald McDonald house.
Since we had arrived earlier in the evening with this trip, we opted to enjoy lounging in the shared living room to watch some television before retiring for the night. Our Mayah was sitting on my lap when a young couple timidly approached us. They both shared a warm smile as their eyes drifted toward Mayah’s face.
They revealed that their own daughter was currently in the NICU and had just undergone a tracheostomy surgery. They continued to talk about their journey and how they were now in the midst of completing their training checklist prior to the expected discharge in a few weeks. Their daughter, too, would be going home on a ventilator.
We could relate to their anxiety mixed with excitement, so we were happy to answer all their questions. It was our pleasure to talk about how far Mayah had come, and it served as a reminder that we weren’t alone on our journey—it was easy to forget that. Many babies in the NICU will do a short stint on a ventilator, but a very small percentage require a tracheostomy, and even fewer go home on a ventilator. We are a small community and supporting one another is essential. I gave the mom my business card and urged her to contact me anytime if she needed to talk, (which we did a few times throughout the years through text messaging.) Before they returned to their room, they turned once more to smile at Mayah, telling us how encouraging it was to see us traveling and being out of the house with our daughter.
Just a couple of months ago, I was reflecting on that memory. I recalled how I could sense the hope that sprung forth in their hearts in that very moment. That divine appointment became the inspiration for the Travels with Our Trachie blog. I have gained much knowledge from other trach parents through our social media support groups, and I wanted to share our experiences with families in the way I feel the Lord has called—through journaling.
Until next time, my friends.
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