Skip to main content

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.


Comments

Popular posts from this blog

My letter to Alex Gordon

Alex,

I wanted to share a few pictures with you that show why I'm writing to thank you. You see my three year old, Kaden, knows more about baseball and the Royals than many adults I know. He loves as he would put it "all of the Royals" but without a doubt, without any hesitation when asked who is his favorite player is his answer is always one player; you. 

I'm not kidding when I say Gordo was one of his first words. In fact anything baseball for the longest time was called Gordo. I'm not exactly sure why he took such a liking to you. I joke it's because his first ever game at the K and you hit a grand slam when he was not even a year old. For what ever reason he adores you. He even has a little Gordo plush doll that he likes to take everywhere. 
This past year has been the toughest year for our family. Our second son, Kaleb, was born 12 weeks early at 2lb 2oz. We also learned of his diagnosis of Down syndrome two days after his birth. He spent 99 days in the…

Let Go and Let God: A story of a monkey and a banana, a Casting Crowns song, and my own stubbornness

This post is about a monkey and a banana, a Casting Crowns song, and my stubbornness. Those may sound like completely random things but all play a part in my learning to “let go and let God.” 
We all have flaws after all we are human. Two of my biggest flaws are my stubbornness and my need for control. I like to do things my way, after all I tend to think it’s the best way so why wouldn’t I want to do it my way? See, controlling and stubborn. So you can imagine when I have a certain plan for my life I don’t easily let it go. So it’s safe to assume I didn’t like or appreciate being thrown some curveballs this past August and September. They didn’t fit into my plan for my life. I found God trying to show me the same lesson I have yet to learn; once again he was showing me that I am not in control and once again I argued back. Which brings me to the first part of my story.  This was not the first time God and I had words on the subject. This has been a long term lesson and one I have a h…

At Papa's Feet

Today the world lost a great man. Often times that statement is said whenever someone loses a loved one. Today is my turn to say it as today is the day I lost my grandpa or the man I named Papa. What makes someone a great man? I could talk about his experience in the military, the hardworking man he was on his farm, the husband of sixty-four years to my grandma, long time deacon of the church, or father to my mother and uncle. I won’t speak to those things. I know of them, some more than others, but my experience my relationship comes from that of a granddaughter speaking of her grandfather.
You have all heard the expression of “your happy place.” “Go to your happy place, visualize your happy place.” This is used in order to calm you, to bring you back from stress, anxiety, frustration, anger, or various other emotions. My “happy place” has always consisted on one place; my Nanny and Papa’s house. I believe there are many reasons for this. Perhaps it might be Nanny’s meals, especially…