Merry Christmas

Merry Christmas from the Hawkins family!  Today started out as a great family day, the boys were extremely pumped up for Christmas and Santa Claus.  Wendy and I have debated on coming clean about the truth around the jolly man and it was confirmed today that we will.  Brandon went to bed early because he wanted Santa Claus to come and “if you are awake he doesn’t stop at your house.”  So when I got to bed at 11:30pm all was quiet.  When I got up this morning at 7:15am I thought to myself “Wow, I can’t believe the boys slept in past 6am, that’s unusual.”  However what I did not know was that Brandon had woken Wendy up at 2:12am to tell her he had been downstairs and Kris Kringle had made his appearance.  Wendy persuaded him to go back to sleep and supposedly he did around 3:30am.  The opening of presents, playing with some, putting together of some and breakfast and lunch(not necessarily in that order) brought us up to mid afternoon.  I jumped in the shower to freshen up and then all heck breaks loose.  I heard a crash in the room where Brandon and Jeremy had been playing with their Beyblades and next thing I know Wendy is yelling at me “SEIZURE” and I find her with him almost blocking the door to that room because of the way he had fallen.  He was seizing for about a minute and a half before he came to a stop and slept it off for 30-45 minutes.  Jeremy was visibly upset and kept saying “I am not going to have seizures because I take my medicine.”   It’s difficult to do but we don’t lie to them if possible about what to expect, so I had to tell him that this is what Batten may do.  He reminded us that “every child is different” so I know he has been listening to some of what we say at our fundraisers and such.  I am not sure whether this is a good thing or a bad thing, but can’t change that now.

We spent the rest of the day  in low key mode trying to keep an eye on Brandon, who is a little dinged up but by this evening had gotten that Christmas spark back.  He talked to my mom on the phone for several minutes and all she could manage to get in were a few “uh-huh’s” and “I sees” and such.

Even with all this activity today it was a great day in the Hawkins household.  It is always a wonderful experience to see the true joy of your children opening their presents on Christmas Day.  Everything from the “Mamasita Chihuahua” to Beyblades and Pokemon to the Nerd Ropes that are expected each year.  The bean bag chairs are a big hit and the dogs were in the middle of everything more so than usual this year.

Here’s to hoping that you and your family  have a Merry Christmas and a Happy New Year!!

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I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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