When someone I
know is upset, my initial reaction is to make a joke. Humor and laughter is my coping mechanism in
serious situations. I do not like the
awkward tense feeling that accompanies depressing situations, so much so that I
have been known to make “funny” statements during what might be inappropriate
times. As an extreme example, similar to
those times depicted in Lifetime movies where the police are investigating a
serious crime and the person has the most opposite reaction to what would you
would expect, yet they are actually innocent.
A more personal example would be that time my oldest daughter tripped
and fell into the corner of a wall. She
hit her head in the perfect spot to get a goose egg, which started growing at a
grossly inappropriate rate. Instead of being
overly concerned I grabbed an ice pack from our neighbor (it was at her house),
gave her a cuddle and was laughing so hard I had tears in my eyes as I held her. In most cases, I do secretly wonder if
someone is going to call CPS on me due to my reactions (although that could also
be due to my overwhelming neurotic worrying trait). It is just so much easier for me to make
light of a situation. If I feel uncomfortable,
I automatically make a sarcastic comment and/or crack a joke.
We have gotten close
with many of the members of the medical team.
I like to think that it has to do with our family comedy routine. I am pretty sure every nurse, doctor, primary
care technician, etc. who comes into our room is well aware of my antics. The majority of them understand my need to
crack a joke or two and they typically join in on the fun. I have to admit that these jokes are not “knock
knock jokes”; they are typically a sarcastic statement as to what we are
dealing with when it comes to Sonzee, seizures, and or CDKL5 in general. I try to make our situation less scary by
balancing the seriousness of Sonzee’s issues with the little Sonzee bear
flare. I feel like my little jabs are
not only therapeutic, but they shed a little insight into my vulnerability as a
mom, and how I handle things. I think it
gives the medical team and good representation of what type of person they are
dealing with.
In creating a lighthearted
atmosphere, we have made it possible for medical professionals to look at us as
more than parents, at Sonzee as more than a patient, and Sonzee’s siblings as
part of the package. Just last Friday we
had our favorite senior resident in the room while Sam and I were attempting to
have a serious conversation with the Interventional Radiologist. Simultaneously we had three rambunctious kids
literally climbing the walls and furniture. The senior resident left the
room and came back 5 minutes later with three zip lock baggies each filled with
a coloring book, markers, and stickers and then sat on the floor with the kids
while they colored, which allowed us to finish our conversation with no
distractions.
I like to think that our inability to create
boundaries with professionals and invite them into our lives on a deeper level
has helped to foster this type of relationship.
This most recent
hospitalization has been one of the toughest experiences thus far on Sonzee’s
journey with CDKL5, but in my opinion if we keep up with the laughter, with the
jokes, with the sarcasm, and with a smile, we might just make it out alive.
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