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.

Monday, April 27, 2015

Change of Plans : A Camp In


A rare agreement without fuss, Orson agreed to skip the morning minutes on the Kindergarten playground with his brother Friday morning so we could get a jump on our shopping trip and make a morning appointment. So on Friday morning we went grocery shopping. But the most exciting kind of grocery shopping. Camping grocery shopping. Orson helped pick out all the fun stuff. We talked the whole time about cooking hot dogs over the fire, roasting marshmallows and Starbursts and of course sleeping in a sleeping bag. The mental list of all the things the boys would need was being gone over in my head. He was so totally excited. Of course big brother Charles and himself had gushed about the trip all morning together and could hardly wait until after school for Charles and for Dad to get home to take them.

Then something happened that RARELY happens where we live. It started to rain. It rained quite a bit, relative again to where we live, and we knew that if it was raining here it would be raining just as much if not more on their campsite. We began to feel like the camping trip should be put off for a few weeks.

We had planned for this father son camping trip to happen before Orson’s surgery to insure that they got to go on one because the Father and Son’s campout for church happens to be just 3 days after the surgery. We have no idea how the healing process will go and how Orson will feel so we wanted to make sure that they got to go and no one was left out.

Now, the afternoon was upon us and the rain continued. We pictured getting the car entirely packed up to camp and them getting there and not even being able to set up a tent because of the rain. Then we thought about the potential for Orson getting sick a few days before his planned surgery. Together Frank and I made the unpopular decision to put off this camping trip now until Orson is healed enough to go after the surgery happens. Frank and I knew that we had to think of something really awesome to take the place of the camping trip. We knew it would take some strenuous convincing and assuring that they would get to go on the trip eventually. I brought up staying home instead of camping to Orson on the way to pick up the kids from school when I would have to explain it to Charles, Orson laughed and told me “yeah mom, no, we ARE going camping. Dad is taking us when he gets home.”

When Charles got into the car and the first thing he mentions is the trip and the first thing I mention is needing to put it off there was granted, plenty of weeping and wailing. The good news is we had a kitchen counter full of already packed and stacked camping fun food. The boys sat down to soda and cookies as soon as we got in the door from school. They all got to sleep downstairs in sleeping bags after watching a movie. The next night was their favorite part.

Frank set up a little fire pit in the backyard and Orson and Charles went nuts. They not only roasted their cheese dogs, but gobbled them up. Then proceeded to roast handfuls of marshmallows and Starbursts while it sprinkled on them from the clouds above. Orson kept saying, “I guess this is a good camping weekend after all.” Charles was a good sport about it too. Frank even let them throw a little trash in the fire, Starburst wrappers, which of course they got a big kick out of.

They were hoping that some long sticks would magically appear in our backyard to poke the fire with like they do when they camp with Papa, but no luck with any big sticks appearing. Either way, a memory was made, and the kids learned to make the best of what we had to work with for the weekend. Here is to another shopping trip for camping food in the near future, and a successful surgery.  

 
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