Make A Wish Family

The day we became a Make A Wish family was like any other day. You know the kind – School.  Kids arguing. Doctor appointments. RUNNING LATE.

Around 10:00, we were headed to a doctor’s appointment with Katie concerning her leg. I was already in the van; backed out of the driveway, and trying to get to the first stop sign as fast as I could.

When suddenly, I realized I forgot something.

Stopped . Backed the van up.

Parked. Jumped out.

I ran inside and then….

(At this moment, I don’t even remember what I forgot .)

Was it really that day we became a Make A Wish family or maybe….

I knew down deep we were becoming a Make A Wish family for years but just didn’t want to admit it to myself.

Since the beginning of 2012, Katie’s health has slowly declined. Her belly went from looking like a smooth flat abdomen like any other 10 year old’s to a belly that has 2 holes with a device to attach to each.

I will never forget the day she came back into the hospital room after her G-Tube and MACE stoma surgery. As she lay there slowly coming out from under the anesthesia with a tube in her nose, I kissed her swollen face and reached down to expose her belly. For a minute, I didn’t move.

What had I done?

Well, what had I agreed to?

Why? Why did I agree to this surgery?

She was forever changed that day!

My baby’s belly now had a tube hanging out of it in two places.

I cried!

AND CRIED!

JUST KATIE, ME AND GOD – I WEPT.

I FELT SO ALONE. I felt like I had let Katie down in some way. After all, she couldn’t tell me what she wanted. She couldn’t agree or disagree or even ask questions.

All of a sudden, Katie’s sweet face turned to look at mine. She reached out her hand for mine.

I was forever changed that day!

I knew then and even more as the days slowly passed that our child was having some major health issues.

Katie was in and out of the hospital during 2012 every 6-8 weeks. We would make the hospital room our home for a minimum of 4 days up to 14 days at a time. While we were 150+ miles away from the rest of our family, Katie was changing right before my eyes.

She went from a G-Tube to a GJ Tube.

In March 2013, Katie returned once again to the hospital but this time when she was discharged she had yet another hole in her abdomen. This time it was for a ileostomy bag. She no longer could poop the way God intended for her to; she had a bag of feces hanging on the outside of her 11 year old belly.

Again, she was forever changed and so was I!

However, this surgery did reduce her hospital admissions despite all her diagnoses. (Kleefstra Syndrome, Fetal Alcohol syndrome, Autism, Cerebral Palsy, Global Developmental Delay, Scoliosis, Cyclic Vomiting Syndrome, Dysmotility of her entire GI track, Ulcerative Colitis, Pyoderma Gangrenosum, Reactive Airway Disease, and Seizures.) Click here to read more about Katie.

In addition to all of these, she had been dealing with Slipped Capital Femoral Epiphysis which was the reason why we were headed to the doctor before I ran into the house. Katie’s left femur bone was slipping out of her hip socket. We were going for her pre-opt appointment.

Oh yeah, that is why I ran back into the house.

I forgot the directions and paperwork to Shriner’s Hospital.

I picked up the papers and headed out the door yelling, “Love y’all, see you…” and the phone rang.

This was the day we became a Make A Wish Family.

It was Katie’s pediatrician. He told me that he needed to talk to me because he had submitted the paperwork for Katie’s to Make A Wish East TN. He had just gotten off the phone with a medical adviser at MAW. He said, “I was going to have this conversation with you the next time you came in the office.  Since talking to the medical adviser today, I thought it best to give you a call. I didn’t want you to hear this from them.”

“Missy – after reviewing Katie’s records, talking to her other doctors, and researching the statistics from all her conditions, I want you to know that her prognosis isn’t good. Her organs can’t keep up with her growth. As she gets older and gains weight, her organs can not keep up with the growth. In my opinion, she only had 3 -5 years to live.”

Silence came from his end of the phone. and I was speechless.

Shock.  Disbelief.

Questions flooded my mind but I no sound could escape from my lips. For a moment in time, I was gripped by fear and lost in my mind.

I was forever changed!

The doctor’s voice brought me back to reality.

I heard him say,’ Missy, you know that I don’t number our days. Only God does. I am telling you this to prepare you. Missy. Missy!”

“Yes?”, was all that I could say.

The pediatrician asked if I was alright. I am sure I told him I was fine. But… I lied! (I was not fine! I was running late, had a 3 hour drive in front of me and now I was told my daughter has only 3-5 years to live over the PHONE!)

The doctor ask me if I had any questions and told me and Jeff to call him if we needed anything. He ended the conversation by telling me to make an appointment so we could talk further.

I hung up the phone.

“Bye”, came from my lips as I walked out the door.

I walked to the car and put it in drive.

After about an hour, we pulled into a rest area and while the nurse was in the bathroom.

I called Jeff to explained the conversation with the doctor.

Anger exploded from my end of the phone.

Questions from Jeff that I couldn’t and DIDN’T want to acknowledge much less answer at that moment were being dropped on my already heavy heart.

We agreed we would talk more when I got home.

A few miles down the road, I talked to Katie’s nurse about the call. No tears fell, It was just matter-of-fact. We talked about how the doctor was just looking at statistics and records. He didn’t know the plans God has for Katie or for our family.

During the pre-opt appointment, a doctor proceeded to tell me that there was not much he could do for Katie after her surgery. He said, “It is not the worse thing if she is confined to a wheelchair.”

My first thought – (OH, MY FREAKING GOODNESS! REALLY!)

I looked at the nurse. She looked at me.

I ever so calmly explained that, that statement was NOT good enough for me. After a few minutes, he agreed to let Katie come back for a test that would test her mobility when she fully recuperates from her surgery.

After dinner, Jeff and I sat all the kids down and talked to them about the day. I didn’t cry. I remained calm. I told them what the doctors said and that, “I am choosing not to focus on what they are saying. For now, we are just moving forward . God created Katie and only he knows the last day she will be here on earth.”

It felt like I was concrete on a dam holding back a rushing river as I fought back the tears building in my eyes. I contained the fury that was in every part of my being getting ready to explode as I watched shock, hurt and concern fill the lives of our children. Question after question was being fired at me from 6 children who never expected to deal with this today.

No one cried. We prayed. We hugged.

We were all forever changed that day!

When all the children were in bed, I went outside. Jeff and our neighbors were hanging out around the fire pit. We shared with them the events of the day.

Overcome with emotions, I lost it! My tears could have put out the fire that night.

I couldn’t breathe – I felt like when each tear fell, part of me fell on the ground with it.

I was breaking… I was broken!

NO! I would not accept that my child was going to be confined to a wheelchair.

NO! I was not going to accept that Katie’s life had a time limit or expiration date attached to it.

NO!

She has not begun to live!

As the tears fell, I had visions of Katie lying in a coffin.

Our life without her in it and my days without her sweet voice saying, “WOW – DINNER!” was something that I was not ready to accept.

We are forever changed but only God knows how long our forever is to be.

Life does not stop just because our circumstances change. We have two choices: faith and perseverance or fear and resistance.Click To Tweet

How am I doing? Most days I am fine. I am making the most of everyday with Katie and choosing not to focus on the when or what if.

Then, there are those days that God has me stop….

I will hear a sermon, song, or someone will say something that brings me out of my optimism and into a realistic view of our life.

I cry.

I stomp my feet!

I scream, “IT IS NOT FAIR!”

I can’t kiss these ouchies and make them better. I can’t look into Katie’s eyes and tell her it will be alright. I weep for our Katie, who does not understand what is going on. She has the most forgiving spirit, the most loving heart, and the most beautiful smile.

She makes me a better mommy. She has shown me what unconditional love looks like in the flesh. She has taught me more than I could every express.

She deserves more than 3-5 years. She deserves a lifetime of kisses, sunny days, hugs, food, playing in the ocean, watching Sandlot, working puzzles, hitting a baseball, and RUNNING because her mommy is chasing her.

She deserves laughter. She deserves Mickey Mouse, Cinderella, Pooh and all the characters to give her hugs.

She deserves no more tubes, no more sitting on the potty for an hour, no more medicine, and NO WHEELCHAIR RIDES.

She deserves a life longer than 3-5 years!

Take me – I pray. Leave her!

We are forever changed because of Katie. We are a Make A Wish Family.

The reality is I don’t get to choose. I have to accept the fact that our child has a life-threatening illness.

We might be counting down the days until Katie’s Make A Wish Disney Trip, but I will never countdown the days Katie has left. I refuse to watch the calendar.

When Katie’s Make A Wish Trip to Disney World is over our life will go on. We will have memories of Rapunzel hugs, Tea Cup rides, endless cookies and sunny days. We will remember the smiles, stress, and surprises of our trip. We will be thankful for every day.

I would gladly have Katie healthy and never get to go to Disney World. But that choice is not mine…

Where do we go from here?

We pray. We hold onto our faith. We grab each day like it is the last one and LIVE.

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Grab each day like it is your last one and LIVE LIFE ON PURPOSE!Click To Tweet

Some days, I look at Katie – I just stare at her trying to imprint on my brain all her facial features.

The scare on her left cheek (that I don’t know how she got). The freckle that popped up on her finger this week. Her long eye lashes. The look of disgust she gives me when she doesn’t want to comply with my requests. The sweet smile that greets me when she says, “morning” every morning like it was the first one ever.

Katie has endured more in her short life than lots of adults. She has been hungry when she shouldn’t have been. Abused with no one to defend her. Left all alone without a Mommy’s love.

Now, her body is failing her.

As her Mommy, I will NOT fail her!!

I am living life with her. We are walking a journey together. I don’t know when it will end and neither does any man.

We have Faith and are persevering. WE ARE LIVING LIFE ON PURPOSE!!

Our lives are forever changed; we will never be the same. We are stronger and closer than before. We are blessed.Click To Tweet

The day we became a Make A Wish family changed us and now we are living life on purpose.

If you would like to get to know Katie and our family more, you can check out our Facebook Page. Stop by, introduce yourself and comment. We look forward to chatting with you.  https://www.facebook.com/discoveringusbus/

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2017-07-15T22:45:13+00:00

5 Comments

  1. Angela April 23, 2016 at 11:12 am - Reply

    Bless you and the courage you have to be such an amazing light in your daughter and families worlds. I say all the time that as long as I don’t have to experience what you are going through I am ok. You and your family will be close to my heart. Best wishes.

    • discoveringus April 23, 2016 at 11:36 am - Reply

      Hi Angela, Thanks for commenting and thinking of us. Actually, I wrote a note last week after our MM call to connect with you. I just wanted you to know that I understand having special need kiddos and if you ever want to talk or need someone to listen just let me know. Also, just remember: Just because you are not experiencing the same thing as me it doesn’t mean your situation is any less stressful. Being a special needs mama is hard no matter what the need or how severe. Your feelings are real, raw and valid. Blessings to you and your family, Missy

  2. Monica Bruno April 23, 2016 at 2:12 pm - Reply

    Thank you for sharing your story, Missy. Your strength and faith is amazing. Katie is lucky to have you and your family. You are truly blessed. Katie reminds all of us to live everyday, because no one is guaranteed a tomorrow. Every single day is a gift. I’m sending you a big, virtual hug!

  3. Bruce May 17, 2016 at 5:03 pm - Reply

    Currently I’m in Disney right now with my parents and sister with her own variety of special needs. As of now it’s been a week and the trip is nearly over, and everyone is exhausted due to all the increased extra care my sister needs this vacation due to her getting older. After a litany of terrible experiences at the airport my mother has said she will never bring my sister on a plane again. But my sister loves Disney, and even though we’re nearly spent it’s great to see how much she has enjoyed her time here. So is this the last trip she’ll ever have to Disney World? There has to be a better way to do things. Eventually, I came across the idea of converting a bus to suit her needs and ended up at your blog, reading all about Katie. I have to say this feels serendipitous to have your experiences as a guide, and I’m glad to have found a fellow Make-a-Wish family of kindred spirits. You’ll be in our thoughts and prayers.

    • discoveringus May 17, 2016 at 10:08 pm - Reply

      Hi Bruce, I am trilled you have gotten to experience the magic of Disney World. I think your Mom is awesome to even attempt a plane ride to Disney! She is more woman than me. We were offered the plane and I decided that I would not be able to handle the stress. You are right, there is a better way. Our bus was a huge blessing and Katie absolutely loves it. We have asked her what her favorite ride was at Disney and she says, “The Bus!”. Our bus is equipped with a hospital bed and all of Katie’s medical supplies. Thanks for introducing yourself and for your thoughts and prayers. We will be praying for your sister and let us know if we can ever help you with a bus conversion. Join us on our FB page and we can connect more. I hope the rest of your trip is filled with nothing but fun times and lots of memory-making moments! When you have time post a pick on our FB page. We would love to see some of the fun you have experienced.
      discoveringus recently posted…The Day We Became A Make A Wish FamilyMy Profile

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