It all started last year around this time. Christopher picked up a helmet, headed
toward the tee, choked up on his bat and swung. The seriousness that runs across Christopher’s face when he
plays baseball started then and has carried over until this year. He often doesn’t crack a smile until he
has run across home plate. Don’t
let his tone fool you though, he is having fun the entire time…he is just
focused…very focused!
Last
year’s t-ball experience sparked something in Christopher that I would have
never imagined, a deep passion (and at times I think obsession) with
baseball. During his first t-ball year
he wore his baseball uniform sometimes 4 days a week just because he liked to
imagine himself on the field. He
wanted and still wants to practice every day. If we can’t go outside, no
problem! Christopher grabs a
tennis ball and becomes the announcer, batter, and fielder all at once…in our
hallway! It is the most hilarious
thing to watch! He calls “Freddie
Freeman” up to bat, throws the ball (pretends it is a line drive) slides to
catch it and then determines whether Freeman is out or safe.
Christopher’s
passion and intense practicing led him to play on two teams this year! He started off playing t-ball with the
4-6 year olds, but it was clear to the 7-8 year old coach that he was ready to
play with the bigger kids and be a bit challenged. So the coach offered to let Christopher practice with the
older kids, and then half way through the season invited Christopher to start
playing games. My husband and I
were a little worried about 3 practices a week and two games on Saturday; is it
too much? But Christopher really
wanted this…and we didn’t want to kill his passion for the game!
Did
I mention that Christopher has LCHADD?
Honestly, Christopher playing baseball, and this intensely, has been a
surprise to us both! When
Christopher was first diagnosed with LCHADD we wondered about sports, and
whether this would even be possible.
My husband and I are both athletic, but we had heard enough stories of
kids with LCHADD struggling to keep up with sports that we really were not
sure. Then when we signed
Christopher up for T-ball we thought, “This might be perfect. He will get breaks during the dug out
to fuel up and in the outfield he won’t be running all the time like he would
in other sports.” So far so
good. The first year of t-ball we
had Christopher’s CKs checked after two practices and a game and everything was
normal. This year we have kept him
fueled up and he has done really well!
What
does baseball look like for this kiddo?
A lot of “fueling up”!
Typically 30 mins before a practice or game Christopher eats a meal with
a tsp of MCT oil over his food.
Then right before practice he drinks about 4-6oz of Lipistart mixed with
1 Tbs. cornstarch. During the
actual event he drinks a combination of Gatorade and coconut water every 15mins
to assure hydration. (Dehydration
can send a child with LCHADD into rhabdomyolysis just as quickly as lack of
food.) When he plays with the older boys I try to throw in an extra snack with
MCT oil during game days. Shortly
after a game or practice we are now trying to add in more protein with Greek
Yogurt to help the muscles re-build.
Outside of keeping him “fueled-up” there is a lot of cheering,
encouraging and explaining the game! He loves it!
Some of the kids ask a little about his extra snacks but he seems to
take it in stride.
Do
I worry? YES! If he had a fuel light on his body like
our car, that would be helpful! It
is hard to know if we are giving him enough, keeping him hydrated enough…and if
we are monitoring him close enough without suffocating him. Christopher is learning more and more
to listen to what his body needs, which is great! But he is still just a normal little boy who is focused on
the game more than anything! And
this is how I want it to be…so all the worry and fear that I carry I try not to
show to him. I wish that I could
just sit and watch the game and not be distracted by my worry, but I feel so
grateful that he has this opportunity to play! I am very aware that not all LCHADDers get this chance. I don’t know why and it makes me very
sad…but we are so happy and proud of our little guy! He has got an amazing swing! 