Winter 2013-‘14: Fall was moving quickly into winter and Carson was still in an emotional rut. It’s interesting when difficult circumstances happen and you feel like everything around you should just stop and wait for you to catch your breath.
But it doesn’t. The bills keep coming. Laundry needs washing. Kids want something for breakfast, lunch AND supper and cereal or frozen pizza gets old. Somehow as the parent, you need to muster the strength to put one foot in front of the other. But if you can’t do it for yourself, you've got to do it for your family. They need you.
I gained my strength from God’s Word and His promises like, Romans 8:28. “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” I believed that God had a purpose for our lives and He could use even this difficult situation for something good. Now if only I could make Carson understand these words.
Even though he now had a few months to get used to the idea of having Cystic Fibrosis, his emotional state was far behind in acceptance. He hated that he was seemingly different from “normal kids”. He felt embarrassed and didn’t want anyone to know. Carson was still absolutely devastated and depressed. I’m continually haunted by the sound of his mournful cries. One day he got so upset he kicked his Airway clearance machine- which is about a $12,000 piece of equipment.
Totally unacceptable behavior, but I understood his frustration and it was hard to reprimand him for it. Because I’ll admit there were times when I felt like launching it out the window myself! Just the sound of the machine made my heart ache. I can’t imagine how it made him feel! But being a responsible adult, I knew that kicking and screaming was not the appropriate, mature answer- at least in front of my kids.
It was another CF family and our specialist that referred us to some organizations that support families who have children with life threatening illnesses. Hopekids was one of them.
They provide fun, ongoing, activities for the entire family such as sporting events, concerts, and movies. Hopekids turned out to be a lifesaver for us all. One specific event we attended brought so much joy to Carson that he later told me, “Mom, maybe having CF isn’t so bad because I get to be a part of Hopekids!” That was the first positive thing he’d EVER said about CF. I was extremely uplifted by Carson's remark so I decided to call Hopekids and share about it. I thought they would also be encouraged to know they were making a difference. Well, apparently that story was passed on to a few people including a VIP with the Minnesota Timberwolves Franchise. And within a few days, both of our boys were invited by the NBA team to enjoy a game in a catered suite along with 10 of their friends. It was amazing!
Before the game, our family got to hang out court-side while the players warmed up, and meet the star player of the team.
During half time, Carson and Anders were introduced at center court as “Heroes in the Making” and then presented with authentic Timberwolves jerseys. Oh, and a TV news crew was there to film the entire experience. Afterwards as Carson walked off the court seemingly carried by a cloud he told me, “Mom, that was the best night of my life!” Those were incredible words to hear considering just weeks ago I had witnessed the worst day of his life. We all felt blessed and filled with hope after that night. Thanks to some generous and thoughtful people, Carson was given his smile back along with a renewed sense of purpose for life. Thank God for Hopekids!
http://minnesota.cbslocal.com/2014/01/08/two-brothers-with-cystic-fibrosis-got-to-hang-out-with-kevin-love/
If you or someone you know could benefit from Hopekids, visit their website: www.hopekids.org