Wednesday, June 20, 2018

Discover


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.

Tonight I watched him self initiate signs to me, eat all of his chicken nuggets, and then begin picking up his toys at bedtime without me even asking. He was so excited when I noticed and praised him that he signed more, turned around four point crawled a few steps, and then said “Up” as he picked up more toys. I could have focused on the fact that he’s two and a half and has very few words. Instead my heart soared at the conversations I have been having with him lately. I could have focused on the fact that I fed him the chicken nuggets because he struggles to bite off a bite of chicken while holding it. Instead I praised him that he finished all four nuggets, and remembered that he still had a Mic-key button feeding tube for his first ear tube surgery. Again, I could focus on him not really even being able to four point crawl at his age instead I was too busy cheering for him and how hard he’s worked to get to this point. While he was doing these amazing things, discover was the word that kept replaying in my head and heart. I was thankful that in the midst of delays I was able to discover and be witness to the beauty and celebration of the moment.

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.  
While I want to nod yes and sign more, I want more nights like this. I know the hard days will be there too. I finish this post as I go to bed to get up at 4:30 to take Kaleb to his surgery in the morning. I once again hand Kaleb off and even though it’s just tubes and adenoids, I will fight back the panic and stress as memories of Kaleb’s hospital stays and surgeries come flooding back. I hate to see how hard he works for things most of us take for granted. However, my brave prince Kaleb continues on as he discovers the world around him and I discover more about his strength and my own.


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