The Road to our 3rd Ronald McDonald House in 19 Sentences

After the 1st House, we thought the 2nd House was the end of the road, but there was another road to travel, and to another Ronald McDonald House.

The cooler, drier summer respite in Colorado Springs for our daughter’s immune system was literally what the doctors, locally and at Duke, ordered, but then …

To Denver in 19 Sentences

1. Our first summer in Colorado Springs, we stayed in touch with family and friends via Caring Bridge, and friends cautioned: Don’t come home yet, it’s still so very miserable hot, but we had to come home at some point, so we did.

Home

2.  Home meant more anaphylaxis, more hives, more itch, more medication, so we took one day, one dose at a time and stayed in close touch with local and Duke doctors.

3.  As springtime approached, the team of doctors reiterated the previous year’s summer plan: Get her out of there, we don’t know what else to do.

4.  It was crushing when Duke was out of options; if God were a medical institution, I always thought He would be Duke.

5.  But Duke doctors promised to never give up on the case, so they sent us to National Jewish Health … in Denver.

6.  Back in touch with Ronald McDonald House Colorado Springs, they welcomed us home to their House for the first chunk of our second summer, and encouraged us that Denver, too, had a Ronald McDonald House.

RMH Colorado Springs

7.  As the day drew near for the next leg of our journey, a room at the Denver RMH was not to had and there were conventions in Denver, so hotels were booked; I had a glimpse into Joseph’s worries of 2,000 years ago.

8.  I finally found a hotel online with public bus service to the hospital, thinking being across from a strip mall would not be so bad; turns out it was a strip club and Denver buses are not Colorado Springs buses.

9.  Was it the morning of, or the day before?  I can’t remember when the call came: A room at RMH Denver is available!  Come now!

10. Just a few sentences left, maybe best told with pictures, but know that you are only seeing the happier moments, not the pain, the tears, the pain, the questions, the tests, the pain, the 6 am treatments, the noon treatments, the afternoon treatments, the bedtime treatments and the laundering between each, the travel via shuttle and taxi between hospital and House, the walks in not-good-neighborhood to get groceries, the shooting just a block and a half away.

Sparkles the Elephant Helps Bad Day Treatments

11.  I don’t have photos of the faces of the mamas and the papas at the treatment center, but their fears reflected my own; we clung to the Word of God, to the experience of the medical teams and to each other.

Hope in Her Eyes

If it weren’t for the medical experience and hope in this woman’s eyes, I’m not sure we would have stuck it out.

Pain Ain't Gonna Keep This Girl Down

12.  After nearly two weeks of treatments, the team asked us to take a walk in 90 degree heat (unseasonable for the location), and part way through the walk, the Girl of Courage said, “Mom!  What is this?  My arm is wet.”

13.  Worried it was another round of infection oozing out in it’s honey-colored way, I looked at her arm: it was sweat, she’s sweating!*

This Girl is Tough

Treatment on a Better Day

14.  More treatments, more meds to help her immune system recover from meds, another two-week stay in Colorado Springs, at a hotel because RMH in the Springs was full, to make sure of long-term treatment benefits.

15. We went home to embrace our new normal, to arrange our schedule around the 1-4 hour treatments (on good days), to morph our lives once again to meet the needs at hand, and to share life and the abundance of life with a child who had experienced so much, who had traveled so far into the deep places of pain that she now is filled to overflowing with compassion for others on the journey of chronic illness.

16. Her health journey isn’t over.  She still anaphylaxes; she still gets hives; she still must avoid several foods, but she graduated high school, and bikes to college – even in the heat.

17. And my son?  He still carries his EpiPen, and manages his health as a young adult on college campus, making wise decisions, and staying alive.

18.  We don’t have all the answers, but we have enough for life, one experience at a time, one bite at a time, one gifted day at a time.

Vulcan Hood Kids

19.  Isn’t that what all mothers hope for their children? Life and life more abundantly, or in the words of our favorite Vulcan: Live long and prosper.

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* REALITY CHECK: When one can’t sweat, bad things can happen.  She didn’t sweat for years.  And years.

 

Next Stop …

One More Ronald McDonald House, Much Closer to Home

 

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