Tuesday, July 21, 2009

Prevailing with a Powerful Presence

It began as we drove down to Gulf Shores, Alabama for our first family vacation in three years. We last visited this condo and beach after Jonnae's initial leukemia diagnosis and 16 months of chemo (with another 12 months to go). She was feeling better than she had in months and looking so forward to a week of fun in the sun and her going back to school. (She had been homeschooled since her diagnosis.)

Thoughts of my girl visit me every day, but the last two weeks have been different. It's been a flood of memories.

In trying to relay this beautiful place I've inhabited the last couple of weeks, I compare it to the experience a child has with an imaginary friend. I'm 41, but feel like a child in heart and spirit :) Much of that is because of what I've learned through my daughter's illness and Heavenly Birth. My imaginary friend is not imaginary at all, she's very real. She's more than a friend, she's my daughter, my soul mate, and my God given guide. I continue to be taught by her example every day.

A stomach bug paid our family a visit at the start of our vacation. It introduced itself to Johnny on the drive down, spent the first morning with Lydia, and a couple of days with me before departing. I can't recall the last time I've felt so awful. I found myself in thanksgiving as I realized I have had such a very long string of healthy days and how seldom a day like this was to me. I reflected on how Jonnae, and so many dealing with chemo, have experienced so many days similar to the one that was so painful and challenging for me. I know she doesn't need it from me, but I found myself apologizing for her having been asked to endure so much sickness. I don't believe I was experiencing sorrow, just a more profound admiration and appreciation for a young girl so courageous and strong. She's been keeping me company since and I'm enjoying her "stay" .

For the last couple of weeks it's as if I can hear her saying, "Hey Mom!!! Remember when.....?" In reflection of those memories she's called up, I've shed some tears. But more than sorrow, I've felt joy and an embrace of great LOVE.

A couple days ago I decided to run to the playlist she had created for her ipod. It was very early in the morning and the memory that I headed out on the run with, was of the early morning run I took the day she joined God in Heaven. Every single song I heard on her playlist this week had a line that spoke volumes to me. Most of them were very poignant. But there were lighter moments too, like when I giggled and picked up my pace as Nancy Sinatra's "These Boots Were Made for Walkin" came on. (Jonnae could have that attitude about her when she wanted to. :) My run ended with a song that sang, "peace like a river; joy like a fountain, flows" ...it was as I finished that run and has continued to.

This past Wednesday was another Wacky Wednesday at the Kosair Children's Hospital. They never start out being easy. Much like the run I had experienced, I began the day feeling heavy, stiff, and more like a dying ember. However, I ended feeling light, free, and on fire with a LOVE of life and all I've experienced to get to this place. All of it being by the grace of God and the strength and protection I find in my faith.

Many have written lately about going to see "My Sister's Keeper" and how it has reminded them of Jonnae and I. One person even stated, "It's your life, you must see it". I went in with a mild anxiety, anticipating sorrow might be the prominant emotion to be pulled up. I was equipped with plenty of tissue and ready. A good cry can be cleansing. I had already begun to experience a mild "cleansing" earlier in the week as my husband and I went and saw "The Proposal". I had a "weepy leak" just watching the previews for the movie "Fame" I'm an emotional person. I cry for every emotion and often. Anytime I see someone obtaining a dream by throwing their heart over the bar, I get emotional. I'm just a sap when it comes to romance, comedy or not, so that's where the tears came from for The Proposal. I ended up blowing my nose in my sweat jacket (gross I know, but I was snotting and unprepared) With "My Sister's Keeper" though, I found myself comparing our story to that of the family in the movie. I didn't cry much because more than anything I saw the "storybook" version of leukemia. Even though it wasn't all "pretty" and there were moments when you felt through the characters, just how painful the journey can be, I didn't get to experience with Jonnae what that mother did with her daughter.

Jonnae didn't ever have a boyfriend. She didn't get to experience a prom, a dance with a boy who cared about her, or a first kiss. She didn't get to have that last day at the beach (her wish that Make a Wish had intended to grant was to see one of the beaches of the Caribbean. She wanted to ride a horse on the beach. Someday I'm gonna do that to celebrate her) I thought briefly about all the things that this mother and daughter were experiencing that we did not. However just as the movie states in the end. "the point is not that I didn't get to experience those things. The point is I GOT TO BE HER MOTHER! and I experience A LOT of beautiful wonderful things with her!!!"

I found myself laughing at a couple of things that were comparable. For instance, how ridiculous some people can be when they think they have something helpful to say. There was a visit at the hospital where the mom and daughter in this movie were just smiling and zoning out as the visiting friends and family simply had no clue how absurd they sounded. Another giggle came as the girl (Kate) had made a scrapbook and there was a page dedicated to why her dad won at scrabble - he cheats. HA! Johnny cheats at boardgames to win. It's no secret, we all know to keep an eye on him, lol. Jonnae LOVED playing scrabble. I think I laughed out loud at that point of the movie. Also, the mom shaves her head to prove to the daughter she's placing too much emphasis on her outward appearance. I offered to do that and my sweet, precious daughter let me know I have a long nose and shaving my head would just draw more attention to it. lol. When I suggested the boys shave theirs to make her more at ease when we were out, she replied matter of factly, "they would be butt ugly if they were bald" :) That was her way of disguising the fact that she really didn't want us to do anything on account of her....that she was okay. (we all know she was more than okay :)

Through all of the reflection, whether the tears came at times out of sorrow, feeling her loving presence, or experiencing the grace of God wrapped in the midst of it all, I know I live life in a way that would be impossible to live had I not experienced everything that I have.

I'm able to see more, hear more, feel more, love more, all as a result of leukemia and my daughter's early exit from this world. I am existing from a plain that I would not have reached had I not used the adversity, pain, and lessons, as stepping stones to get me here.

I believe we all have gifts that we use or abuse -healthy bodies, intelligence, spirituality - I witness people using, abusing, and misusing their gifts. It's easy for me to decipher now because of the heightened sense God's gifted me with as I've remained open to His guidance. I'm using my gifts now, but that's not always been the case. Before Jonnae's illness, one of the gifts I abused was my body. I didn't take good care of it. Once I started taking care of it, then I misused it. Not anymore. I was in a vicious cycle and God used Jonnae to save me. She accepted His will, knowing I, and many others, would be saved through her faith and my sharing our stories. Regardless of how I miss her physical presence and the memories we could have shared, I can not find myself being sorrowful for the life I have now and how God will continue to use it to bring those who are lost back into alignment with Him.There's no greater experience than one that's led and blessed by God! This smile in the midst of a battle with cancer proves it!

She prevailed with the powerful presence of God. Even with the immense void I feel without her physical body, as her spirit accompanies His and lifts me up, I will prevail with a powerful presence too.

Seeking to have a heart more like His (and hers), always in ALL ways, Denise


  1. My dear friend D- These pictures took my breathe away, especially the second one. Jonnae's light in this picture could blind a person. She is looking right at us with such vibrance and love. You were right, You GOT TO be her mother, what a wonderful thing. And I am sure that she would counter that by counting her blessings in GETTING to be your daughter.

    As always, you know I think you are 10 shades of wonderful.

    LYG Infinity, RR

  2. Denise - May I start by thanking you for extending an invitation to share such a precious level of intimacy with you. I truly cherish your generosity. I am a lover of hearing people's stories. That is probably why I became a social worker professionally. I look forward to hearing your stories. You are not only an amazingly strong, intelligent and giving person, you write pretty dang well too! ~Brooke

  3. Denise,
    Your writing and sharing your heart are a gift, another gift you are using and not abusing.

    Thanks for pouring out your heart to give others who are hurting, comfort and peace through the love and mercy of Jesus Christ!

  4. thanks Denise...your writing is so thought-filled and Spirit-filled.