I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Saturday, May 7, 2016

Hey Mom - Thanks For Teaching Me To Prayer Before We Travel


Dear Mom,

Thanks for teaching me to pray before traveling. I remember we always said a prayer together as a family before we left on a trip away from home. I remember sometimes we would remember to do it before we got into the car to leave, but often we would do it with all seat belts buckled and the motor running sitting in the driveway. Dad or you would say it from the front seat. Once or twice in the summer the car a/c would be running so high those of us in the backseat couldn’t hear very well so we may have shouted out an “AMEN” before the prayer was over but nevertheless, I distinctly remember those prayers being a comfort.  

Because you taught me this I do it now with my family. This weekend we had a camping trip. We borrowed a friends luggage rack for our tow hitch to travel with. Since we have never used this rack Frank took extreme care in packing it. He decided that he would wrap the items in one of our camping tarps before he strapped it all down for extra precaution. The kids bounced around between the car and the house while Frank methodically packed the items in the rack and then before we left we did what you taught me and we said family prayer.

At our first stop for the bathrooms with the kids after traversing through mountain roads with no cities or gas stations we found our big mistake and our miracle. The exhaust pipe from our car had torched the stuff in the luggage rack. Literally. Frank’s neatly wrapped package of tarp was now a mound of messy melded muddled plastic. We thought there was enough clearance that it wouldn’t be a problem. We were wrong.

The heat had burned first through the initial layer of tarp and second through the folded up tarp right behind it and further still to melt the wall of our cooler. Despite all of that melting the heat did not melt the tie down strap right in front of the exhaust pipe. It also did not catch the sleeping bags on fire which were right next to soccer ball sized hole melted into the luggage.

I mean we could have acted out P.T. Flea’s from Bug Lifes “Flaming Death” routine on the side of the mountain, but we did not. Clearly we were protected and watched over.

So thanks Mom for teaching me to pray before traveling and thanks for taking me fun places even when it wasn’t fun for you to prepare and carry out managing 8 people away from home and beds.

Lots of Love,

Kamarah  
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