Excuse me… how old are you again?!

3 Jun

Cutest, coolest thing in the world I wanted to document through this whole journey of chemo, clinic, fevers, hospital stays, etc….

Last night we were discharged from another stay on the lovely 5th floor of UNC Children’s Hospital. We were there from Fri night – Mon afternoon. & once again… it was a casual stay. Keely was running a pretty high fever starting Fri afternoon & we were admitted into UNC for a blood culture & monitoring. Turns out, it was just a little stomach bug that Keely was fighting off, but for a child with almost no immune system, she has to be hospitalized & monitored until her counts start to come up (indicative that her body is almost done fighting the virus). So, as before, it’s almost a treat for Keely. I mean, yes, she’s hooked up to “Fred” (if you don’t know about Fred… well… you just don’t know about our journey… so moving along….), but aside from the initial needle access to her port, the whole hospital stay is pretty much a “get-a-way” for Keely. She has no bedtime (it’s impossible to enforce a bedtime with nurses coming in & out), she eats whatever she wants, she watches whatever she wants, & she has (at ALL times), either mommy or daddy there to hang out & bond with all to herself, which is impossible in a house with 2 little brothers.

This time was different. She still joked around with the nurses & showed off her spunkyness, but I noticed something significant. She’s changed so much. I’m not sure if it’s because of the diagnosis or just her age, but it seems like since all of this has happened & she has come around to gaining some understanding of her battle, she suddenly grew up on me. I went from communicating with a normal 3 yr old, to talking to someone seemingly around the age of puberty. weird.

A lady that has been my mentor through our journey (her daughter just finished her last treatment in Dec of last yr. Diagnosed at the same age as Keely with the same “high risk” A.L.L) told me that her daughter was so isolated, that her only REAL interaction most of the time was with adults… usually talking serious business, so she made that same transformation… just adapted to adult talk & behavior.

All of a sudden, I am having conversations with my 4 yr old like a junior high kid. Everyday she shocks me with new information, new phrases, new words… things I would never hear one of my friend’s 4 yr old say or comprehend. I kinda like it. I think our relationship is much more fun & interesting when I can communicate with her on this level. She has such a sassyness about her (I can imagine her snapping her fingers moving from side to side with a “look” on her face). It’s just so….. ME! & so I can respond back with a sassy comeback (all in fun instead of it being so disciplined, but with the same outcome) & it just cracks the nurses up…. our whole “relationship”.

There have been so many times that I’ve criticized myself for the way I interact with Keely. I feel like I’m not a “loving” parent or the right type of mom for a daughter, but this whole ordeal, this grown up little 4 yr old fighting the battle of her lifetime made me realize something…                            

One of the things that mother did do for me that helped me so much in life, is she made me strong. She never coddled me or babied me. She taught me to be strong. To fight. To decide who I am & stand there! To never let anyone persuade me or influence me. To be a woman someday. The type of woman that would never put up with any man’s crap!… to be self sufficient. To be able to choose God & never let anyone’s opinion of that keep me from Him.

So… I realized that I’ve done just that with Keely. Brian’s job is to show her the real love of a man, but my role is different & I shouldn’t compare the two, because they are so different in the outcome of who she becomes. Same with the boys. My role is to show her a confident, fearless, strong, woman of God. A woman who takes no crap, but would show the lowest of lows the same respect as I would her doctor.

She just amazed me this weekend in the hospital. She’s such a pistol, so spunky… it’s beautiful & so amusing. It’s not in a defiant nature… it’s just a presence about her that says, “I’m Keely! Get to know me, cause your gonna love me!”. At one point on Sun night, I had the computer on & she was watching cartoons & it was getting late. She suddenly turned to me & said, “mom… can we pray together?” I was so shocked. I wanted to cry. I decided at that moment that if she was grown enough to ask me to do that, then she was grown enough to pray with me in an adult fashion. We’ve used the generic prayers at meal time & bedtime to get her in the routine, but I’ve never prayed with her in a real way. So we held hands & I prayed… just like I would if she wasn’t in the room with me, except I talked about her as if she was involved in our conversation with the Lord. She held hands with me so peacefully & quietly through my whole prayer time. At the end she said… “I feel so much better. That was a good pray.”

A few minutes later she asked me to turn off the TV & the computer because she was ready to go to sleep… & so I did, but she obviously wasn’t ready for sleep. We cuddled up together, & she started talking… talking to me like a 12 yr old. She asked me, “so mom… I have leukemia, right?” (this is the first time she has actually asked about the disease or even said the L word). For almost 40 minutes we talked about leukemia, chemo, etc. She asked me why only kids at clinic had leukemia & not kids that she knows. She usually says that she has “chemo”. So, we talked about how she actually has leukemia, but that she gets chemo to get rid of the leukemia so she can get better. She even asked how she gets the chemo & how it goes into her body… so I explained that & it seemed as if a light bulb went off & she finally understood. She said “ooohhh”. & that was it. Her questions… these thoughts, this confusion, & her inability to express it was finally put to rest & she seemed so at peace.

I love her so much! I see myself in her more than anyone could ever imagine & I know the great things she is capable of through her genes & God’s plans. She is just so amazing. My life would be incomplete without her. She is my daughter… my wings to watch soar someday. & I will never leave her. I’ll always be here, in the most glorious of seasons & when life seems to beat her down, I WILL be by her side.


4 Responses to “Excuse me… how old are you again?!”

  1. Shannon June 3, 2009 at 3:36 pm #

    What an amazing bond you two have, made even stronger by this journey.

  2. Aunt Melanie June 3, 2009 at 7:06 pm #

    Wow, what a great story! You have a special little girl there with a special momma 🙂 It amazes me a 4 year old can be so strong and understanding. I know you and Brian are so proud of her.

  3. Theresa S. June 5, 2009 at 1:29 pm #

    She sounds amazing 🙂

  4. st. kelsie j. June 11, 2009 at 2:14 pm #

    Your blogs never cease to amaze me. You’re so open and honest, it almost makes me jealous.
    Just imagine: If God can reveal this much to you at this point in the journey, just imagine the revelations you’ll get years down the road.
    We truly serve an awesome God.

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