I have said it before that being a special needs mom can be
very isolating. I don’t have a group of girls that I can call up for a girl’s
night out or a girl’s trip. My circle is pretty small. I have been planning
this event for Skylar for about 7 months. I wanted to try to break the Guinness
World Record for the Longest Line of Moving Wheelchairs. This was going to be an
event to mark a big item of Skylar’s bucket list, raise money for charity and
bring awareness for people with disabilities. I had planned most of it but had
some help from a few pretty great people. I spent hours upon hours calling
people, asking for vendors and sponsors, looking for volunteers, trying to
promote the event. I was fortunate to have things work out really well. I had
no idea about how many chairs I would have but in my gut I just knew we would
break the current record. The day came and went and we did not break the record.
I felt defeated and like I had lost. I put on a great face but I was
disappointed and felt let down.
Skylar spent the day first in line waiting for us to see if
we’d get enough chairs. She continued to have low oxygen levels on 3-5 liters
of oxygen. She had a smile on her face though. We get home and on 5 liters of
oxygen she is struggling. As I try to suction her and try to keep her oxygen
levels up I reflect on the day. I think about Skylar and the life that she has
lived and how hard she has fought her entire life. I think about how if life
got to hard and she gave up she’d no longer be here. I also think about
everyone that came today. Most of the people that came today use a wheelchair
on a daily basis. I am not sure what it’s like to be in a wheelchair but I know
what it’s like to care for someone who is and everything is harder.
It gives me the realization that today was not a defeat but
a lesson. It showed me what to improve on for the next time and it really showed
me how truly amazing people can be. I am beyond grateful for the people that
came out to volunteer and donated their time, who donated t-shirts and other
things and everyone who came out to participate. I’m thinking about today and I
no longer think of defeat but just hunger to break the record and to spread
awareness. I think about Skylar’s inability to give up and everyone there. I
couldn’t imagine what their life would be like if they gave up when things got
hard or felt defeated. It’s a humbling experience. If breaking a world record
was easy I think there would be a lot more record holders.
Like I said, today is a lesson or trial run. I got to see
what I need to improve on and how it can be better. It would be amazing if life
worked out like that. If every time we messed up or made a mistake if it could
be a trial run. At the end of the day, we had fun, was able to raise money for
charity and feel like even though the record wasn’t broken I still feel like I
accomplished something. I can’t wait to try again and truly break the record! The
experience was amazing and I can’t imagine how it will feel actually breaking
the record and getting to share that with even more people.