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.

Wednesday, April 22, 2015

The Day I Ruined Disneyland in the Parking Lot : A Call for Parental Resiliency

We love our children. One of the most exhilarating things as a parent to experience is the random, sometimes embarrassing, behaviors that our kids exhibit at the most inopportune times and ALWAYS in front of other people. During those times it’s good to be reminded mentally that we as parents and previous children ourselves had some pretty bad exhibits of behavior in our day.
In the early 1990’s my parents were able to buy a van for our family to drive together in. They planned a road trip in the new van to Disneyland. We were all very anxious for the trip. The coolest part about our new van was the amazing sliding door.
As a bossy-obnoxious-7-year-old-4th-born-of-six-kids-baby-sister trying desperately to prove how incredible I was (sound familiar anyone who knows my family now) I thought it was my right to close this new amazing sliding van door. My little brother 5th-born-of-six-kids trying desperately to be just as big as his bossy older sister disagreed with me. He thought it was his right to close the amazing sliding van door.  
We had finally arrived at Disneyland and were filling out of the van. Here it was. Time to close the amazing sliding van door. My little brother and I began to fight. He began to swing his arm in and out of the car through the hole the open amazing sliding door made. I being sick of the argument went ahead and closed the door anyway. His arm was inside the door when the amazing sliding van door clicked into place and got jammed.
I had closed the amazing sliding van door on my brother’s arm. It was broken. Both the arm and the door. But the broken arm was stuck, literally, in the broken amazing sliding door in the Disneyland parking lot. My brother was very upset. My parents were very upset. I was embarrassed and probably should have been more upset.
My Dad tried with all of his fatherly adrenaline to un-jam the amazing sliding van door and open it from the outside with the handle, but to no avail. He had to climb into the back seat from the driver’s seat and use the heal of his cowboy boot to kick open the amazing sliding van door.
While this was happening other Disneyland guests were arriving in the parking lot around us. My brother was screaming, rightly so, and there were tears and words associated with an amazing sliding van door being kicked off from the inside out being used, rightly so. Disneyland staff approached my mother and asked if we could please leave because we were causing a scene and disturbing other guests, rightly so.
Eventually the amazing sliding van door was kicked off and my brother rescued and consoled as much as possible by my mother. As my Dad was trying to figure out how we was going to drive the van out of the Disneyland parking lot with his family inside and no door, I have a distinct memory of rummaging through the bags in the back of the car to find some fruit snacks. From this one clear memory alone I am pretty sure I was a rotten kid.
My older brother held the amazing previously sliding door in place as my Dad first drove to the nearest hospital to get my little brothers arm set and then drove to the mechanics shop to get the door somehow fixed. My parents did get us to Disneyland at some point in that stay in California. We have a family picture taken after the arm healed with the Disney shirts to prove it. However I can imagine, even though unfortunately my only clear memory is the fruit snacks, that there were not many me-fans on that trip.
Thank heavens time passed, my brothers arm healed, I grew older than 7, and my family forgave me for my embarrassing behavior in front of all of Disneyland. If my parents can be that resilient with me, I owe it to them to be just as determined in my resilience with their grandchildren.
P.S. - Ed, sorry again about your arm. You do mean more to me than fruit snacks, I promise.
 
 
 

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