Discover. This
was the word for the year I picked back in January. There were several
different reasons behind this choice. For this to stay an appropriate blog post
length instead of a novel, I will focus on one of the reasons behind this word
choice. Kaleb. One of the many reasons I chose this word was to remind myself
to enjoy Kaleb and enjoy watching him discover the world around him. Not to get
so caught up in being his medical coordinator, therapist, teacher, nurse, and
full time advocate. To remember to be his mother and to take the time to
discover him and his personality.
While I think
this is something many of my fellow parents of a children with an extra
chromosome can relate to, I will only speak for myself. We all say, “Don’t
compare,” and we sure as heck try not to, but it can be hard. I often found myself comparing Kaleb to
milestone timelines, his fellow peers of various ages at daycare, and even
those buddies of him rocking that extra chromosome. It would take the joy out
of Kaleb’s achievements. I shamefully admit that one of my fears in the
beginning of Kaleb’s diagnosis was that I would always be thinking; awesome,
Kaleb’s doing X but still not doing Y and Z. Occasionally I did. This is part
of the reason for the selection of the word. I wanted to always push Kaleb but
not being constantly pushing so hard that I forget to discover the beauty of
the moment.
It would have
been a shame to miss out on the joy and beauty of the past month, and even the
beauty of tonight. Kaleb finally has begun using more of his ASL signs. He’s
not saying as many words as he was but then again we hope to fix that tomorrow
with his second set of tubes. He has never really picked up on using sign
language until the past couple of months. Then finally not only was he using a
few more signs but he started to put them together and communicate.

Kaleb in true
Kaleb fashion wasn’t finished in impressing me tonight. After I read a book and
turned out the light I cuddled him and made up stories which tends to be our
nighttime ritual. Kaleb’s favorite kind of stories tend to be stories about
him. So I finished a story about a brave prince named Kaleb. When I finished he
patted my mouth and signed more. When I asked him if he wanted one more story
he nodded his head yes, signed more and held up one finger. Needless to say, he
got another story after several kisses.

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