I want the world to “see” her…#1000 Gifts

ByMary Lenaburg

:: noticing God’s glory
It is a stunning spring day. The sun is out, the windows are open and the house is being aired out. Not much makes me happier than a quiet sunny day to catch up on life as we recover from hospital hangover. 

:: listening to
Miss Courtney sounds like Chewbacca this morning. Apparently she has a lot to say and she is going to say it. We are also listening to a little praise and worship music, singing a little joy into our world. 

:: clothing myself in
Jeans, happy hot pink sandals, a lovely light grey striped top with cami underneath. Have I mentioned how much I love spring. Perfect weather for this menopausal woman. 


:: thinking and thinking
This past hospital visit was the first time Miss Courtney was on an adult floor. I did not like it. I missed the happy colors and hope filled people on the Peds floor. Every time a physician came it to check Miss Courtney’s lungs, they would apologize.  

“I am so sorry you have to deal with this.”

“I am so sorry this is what you have to deal with every single day. You must feel so suffocated.”

“This must be really difficult to give up your freedom to care for your daughter. You know there are homes that have rooms available if your interested.”

Each and every time I just smiled and responded the same exact way. 

“Courtney is not a job or a chore. She is the sunshine in our day and the heart of our home. We would be lost without her.”

Yes, I know that my daily life is not attractive to most people. There are days and weeks I dream of being anywhere BUT here. I can’t just drop everything and take a trip to the grocery store let alone the beach. However, I would never for one second change who my daughter is. What I would very much like to change is how the world sees my daughter. 

She is who God made her to be. How can I argue with that? God doesn’t make mistakes. 

She is a human being with feelings, needs, wants and desires. She likes her food at a certain tempurature. She hate peas and despises having her hair brushed or washed. She loves listening to books on her iPod, especially if the narrater has a British accent. Her favorite time of day is when Daddy comes home. She takes snuggling on the sofa to an art form. 

I want the world to see my daughter for the beautiful gift she is. No, she can’t walk (yet), she can’t speak, she can’t take care of herself and relies completely on us to help her. She has seizures everyday that would make a layman cringe while watching. When she sneezes she toots and it smells as bad as it sounds. 

But…

She teaches me every single day that to love and serve another person in such a way is the same as if I were loving and serving Christ. 

“What you do for the least for my brothers, you do for me.”
Matthew 25:45

I don’t always do it well. I don’t always do it with love and joy. But I refuse to look at my daughter as a burden or a mistake. She is my sweet, sassy, determined stubborn angel and if God calls me to spend the remainder of my life serving and caring for her, than I will do my best.  

Please don’t put me on some pedestal of piety and religious rightousness. I am just me. I self-medicate with chocolate. I swear like a sailor and have the temper to match. I can be cranky and selfish and at times I can even stomp my feet when things go awry. Yes, I really do. 

I am a work in progress and so is my daughter. So stop apologizing world. It’s really beginning to make me mad. 


:: giving thanks for
#2063 ~ 2086
** thankful for a quiet weekend of rest and recuperation with Courtney
** for the blessing of so many beautiful souls sending prayers our way. Prayers of healing and good health.
** for fresh herbs in the garden, allowing me to quickly and healthfully add some zip to our daily meals. 
** for the recent rain that saturated our vegetable garden encouraging our kale plants to go crazy…a good crazy!
** for IV antibiotics and nebulizer treatments
** for modern medical doctors who listen to a mothers concerns without dismissing her
** the many prayers said on behalf of our Courtney
** Granma Green who always knows the right thing to say even in the midst of chaos.
** a fully charged cell phone to keep in touch with extended family during our hospital stay 
** for sweet friends who bring dinner without asking. 
** a trip to the grocery store by myself in peace
** a successful trip to John’s Hopkins to measure Court for her new wheelchair
** an everything bagel with cream cheese
** a nice piping hot bowl of chicken noodle soup
** sending packages of love through the mail 
** Miss Pam, our PT, who pushes Courtney to strive to do better every week with patience and joy.
** celebrating TWO First Communions of two Godchildren
** spending time with my nieces and nephews
** a pretty new blouse in bright yellow
** madras plaid, makes me smile every time. 
** time spent in Adoration
** an invitation to a Bridal Shower
** being able to take my husbands shirts to the dry cleaners instead of ironing them myself. 
** a good book to read on a quiet Sunday
** new spring colored table linens.

::pondering prayerfully
+ for the soul of Shawn Kuykendall
+ for my Courtney to feel better very, very soon
+ for Amelia, 11, who is battling brain cancer
+ for peace of mind and heart in regards to Courtney’s future treatment
+ for my mother and direction with her retirement
+ for our parish as we raise funds to build a new church
+ for my husband and his job
+ for my Jonathan deciding on his future path
+ in Thanksgiving to God for allowing our daughter to come home form the hospital


:: creating by hand
I am almost done with the Paschal Cloth I started during Lent. I am also working on some baby quilts and clothing So much fun sewing for little people. 

:: in the kitchen
Getting back into my grove there. Tonight we are having aKale Slaw and grilled chicken. I can’t wait to try out a new recipe. 

:: living the liturgy
Enjoying the remainder of the Easter Season. May is one of my favorite months of the year. The May Crownings and Holy Commuions. I love them all. Springtime in the church is so wonderful is it not?

:: keeping house
Trying to keep things picked up every day and so far that’s working Reduces my stress on making sure we are ready for company no matter when they come.

:: loving the moments
when my Courtney smiles. It makes everything else fall way and I know that it will all work out.


:: Miss Courtney’s World
We are home from the hospital and she is doing really well. I guess she like shaving her Mama wait on her hand and foot. Her lungs continue to get stronger. We will check in with the pulmonary Doc on Wednesday to see if her lungs are clearing. They sound good to me, but we shalle see what the experts say. 


10 Comments

  1. I am so sorry for the misguided "sympathy" that most of the medical world seems to foist upon anyone who deals with physical suffering.

    If it helps at all, I believe that God sent Courtney to you so that the world can see what true joy and love looks like; I sure as heck see it!!

    I'm praying for her continued improvement and peace for you.

    🙂

  2. I like to think that someone in that hospital needed to hear what you had to say about Courtney and needed to see how much you love her even though she isn't "perfect". It's almost like God wanted you there at that time to speak His message to someone's heart.

    I was just thinking today about a few things I needed to put on my thankful list and then thought that it had been a while since you blogged yours. Great minds think alike! 🙂

    Continuing to pray for healing for beautiful Courtney!

  3. Well, this made me cry. My favorite part is the verse where Jesus said whatever we do for the least of these, we do for him. My son Joshua is like a two year old in a man's body…he is 15 years old. God has taught me so much, how HE VALUES people, not for our achievements & talents but because He created us in His image. Joshua loves me in a way his brothers & sisters do not…he just loves being with mama & is so content with such a simple life. He truly is a gift…but I know many people cannot understand that,(sort of sad really). I am learning more & more to focus on what pleases the Lord..& not so much what people think! Love & prayers, in Jesus, Cynthia

    1. Isn't it wonderful how our sweet children show us their love with such simplicity Cynthia? I am one happy Mama when Miss Court smiles at me or snuggles with me. Simple love is the best love.

  4. Not to avoid the questions/sympathy but more because you stated missing the colors, etc: Has Courtney switched to an adult neurologist? My husband a pediatric hematologists and cares for patients into their 30's at our children's hospital so that they can stay with the doctor who has been following them.

    Agree with Beth though, am so glad you and Courtney were there to add a needed bit of perspective to that hospital's staff.

    1. Joy – she was in for pulmonary issues not seizures so we ended up on the adult floor. In VA you have to be seen by an adult pulmonologist after age 21. Miss Courtney continues to evangelize in her own special way.

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