Battles against terminal illness, anxiety, and life!

Posts tagged ‘Eating’

You Scream! I Scream! We all Scream for…

Today Braden looked at me and said, “Mommy, I want hot fudge sundae.”  It was seven in the morning.  Hey, I’m all for ice cream for breakfast, but there’s no hot fudge in the house.  So, I told him we’d have to see what we can do.  We did go for that ice cream today.  Both of my parents joined us for the fun too! 

We sat down, and Braden was so excited to have exactly what he wanted.  He picked his spoon up and tried to bring it to his mouth.  His eating has always been clumsy at best.  Although, clumsy might not be the best word to use.  He has poor motor control, and eating has always been difficult.  However, today Braden’s tremor was painfully obvious.  His ability to get the ice cream from the cup into his mouth was seriously compromised, and it was extremely painful to watch.  With each attempt, Braden’s frustrations mounted.  So, my  mom went and got an empty cone.  Our theory was we could scoop the hot fudge sundae into it.  The fudge would slide off, and he got so upset.  I looked at him and smiled, “Hey, Mommy’s got a great idea!”  Off we went to the register again.

Round three was not much better.  I ordered him his usual.  He can normally eat a cone really well.  However, with his feeling so utterly defeated, Braden simply waved his white flag and systematically shattered the hearts of all the adults.  He threw his arms up to me, and I scooped him up.  There he sat, so very sad, with his arms around my neck and head on my shoulder.  My baby boy.  I wanted to scream at the injustice.  It’s an ice cream sundae.  How can an ice cream sundae have the power to ruin my child’s day?  It doesn’t, but his body does.  It failed him today, and his mind knew it.  That’s what crushes me.

We all rode back to the house in relative quiet.  Something had to be done to disconnect from that experience.  None of us would allow the experience to ruin our entire day.  We learned that it’s ice cream cone or bust in our world. 

Upon arriving at my parents’ house, I had an idea.  I know that my parents’ bed is off-limits.  It always is made, the comforter always looking pristine.  He he.  I climbed on the bed, a no-no, and snagged Braden as he left my parents’ bathroom.  He giggled wildly, knowing we were doing something against the rules.  We laughed hysterically as my mom feigned anger.  It was then the unexpected happened.  My parents ganged up on Braden and me!  They started tickling both of us!  I can honestly say that I didn’t see that one coming!  I had an idea they would tickle Braden, but my feet surely didn’t expect it!  We laughed until our sides nearly split, our cheeks hurt, and until our hearts no longer ached.  It was perfect.

I can always count on my parents to help make things better, and today was no exception.  My dad ate soup with Braden at lunch today. I have Braden drink soup directly from the bowl, and tell him, “It’s just like they do it in Japan!”  So, now we all eat soup Japanese style.  We are making this lifestyle work for us in our own quirky way, and that is almost a gift in itself.  I just wish we didn’t have to.