Humble Yourself As A Child ~ Kristi & Michael Hill's Story

August 05, 2013  •  Leave a Comment

 

Janie's Journey...

Kristi was a normal small town girl in the prime of her young adulthood. At 20 years old she developed Acute Tubular Necrosis. A blood clot caused by birth control which shut down her kidneys. The internal structures of the kidney, particularly the tissues of the kidney tubule, become damaged or destroyed. ATN is one of the most common structural changes that led to acute renal failure. Against her doctors orders she was not hospitalized until after her friends wedding the following weekend. God himself put Kristi into perfect position to meet a groomsman at that wedding. Enter Mike Hill... Kristi and Mike hit it off immediately. 2 days after the wedding and meeting Mike, she was transported to the hospital where she had a port inserted into her neck to begin dialysis. At 20 years old, she had to endure dialysis and was told that she would never have children. God is good! Kidneys were healed, and so was Kristi apparently because she and Mike were pregnant with cute, perfect little Peyton Lee Hill about 2 months later. Sassy, diva MaKenzie Grace Hill followed soon after. Aside from a couple food allergies, this girl is unstoppable and full of personality!

 

 

 

Top - Mommy and Daddy - Mike and Kristi Hill

Below - Big Brother - Peyton HillBelow - Big Sister - MaKenzie Hill

Another short amount of time later Kristi is yet again pregnant. This time she knows that at 28 weeks pregnant something is not quite right. The doctors assured her that the baby as well as herself were both fine. Konner Dewayne Hill was born right on time. He was happy and healthy until at 9 months he began having seizures. They ran tests and found out that at 28 weeks when Kristi had the "mommy intuition" that something was terribly wrong, Konner had an in-utero (pregnancy) stroke. This causes a missing or "dead" cortex of the brain. It causes seizures, and controls physical development.   Kristi and Mike were told that Konner would not walk until he was at least 5. Little man sure proved his doctors WRONG! He was walking by age of 16 months. You would never know he had medical issues at this point unless you were told.

Below is a picture of big brother Konnor Hill.

Having 3 kiddos is a challenge for anyone! Especially when you are working full time and battling your own medical problems. Now I know that Mike and Kristi NEVER complain, nor do they broadcast their medical or financial issues for the world to see. However, I have obtained permission to share their story. In order for me to do so I feel it necessary to open up the book of the "Hill's" and show you just what kind of amazing family, and support system they are to each other. They have both agreed that if it will help Janie, they will share what is needed. That's the kind of selfless people they are. 

This part is a little uncomfortable for me to tell. I feel as though I'm invading a privacy that should not be shared with the world. However, according to Kristi and Mike "you gotta do what you gotta do".  So here goes nothing. 

Mike had a wonderful job, a nice house, the perfect little family. Then he was laid off. His words were "God had decided that I was taking life for granted and had gotten a little too big for my britches".  "And He said: "Truly I tell you, unless you change and humble yourselves like little children, you will never enter the kingdom of heaven." Matthew 18:3  They moved their family of 5 into a single wide mobile home with two bedrooms and one bathroom. Meanwhile Kristi was 8 to 9 months pregnant with Miss Janie Renee during the move. Through the struggle of moving and Kristi's pregnancy, Mike was quietly dealing with his own medical issues. Here again, I state that having known Mike for years, I've never heard him complain or even discuss his diagnosis. Not many people even know what he is going through himself. Michael Hill is a strong man with nothing but respect from his wife, family and friends. Even more so from me now that I have had the pleasure of sitting down with him several times this past week and finding out what makes him tick. He is an extremely smart man with a huge heart of gold and goals and ideas that will blow your mind. Now comes the shocker. Mike has type 1 diabetes and takes 3 insulin shots per day to keep his sugar under control. He takes medicine for high blood pressure as well as high cholesterol. After we go to this point in the interview, I asked, "Is that the extent of your medical issues?" He replied, "yes that's all". Kristi then spoke up, "Mike, what about your stomach?" Mike again replied, this time, my jaw dropped... "Oh yeah, I have Esophageal Lymphoma".  I said, "well Mike that sounds like cancer." Mike said "it is"Esophageal lymphoma is rare, accounting for less than 1% of all gastrointestinal lymphomas. The good news is that his non-hodgkin's form of lymphoma has not metastasized. Meaning it has not displaced into organs or begun spreading. Bad news, this cancer can not be treated until it metastasizes. More good news, when it does metastasize, they can take care of it because it was caught very early.

I know this is a lot to take in. Bear with me. I'm almost there.

Most of you that are taking the time to read this already know a little about Janie Renee Hill. If you are learning of Janie for the first time, here is a little run down...

Janie Renee Hill was born July 22, 2011 and is the youngest of our 4 children, it became obvious very soon after birth that Janie's needs were going to be very unique. Janie is a very happy and curious 2 year old, and is ready to help change the world. Janie has complex medical needs and is regularly followed by her pediatrician, GI, Neuro, ENT, Pulmonary, surgeon, ortho, and a Geneticist, as well as receiving therapy through Early Intervention, Kale Rehabilitation, Feeding therapy at CRS in Huntsville, Children's on 3rd in Birmingham also provide her with OT, physical therapy, Speech therapy, and Vital Stem therapy. Janie's life is currently being improved by the placement of tubes in her ears, the use of oxygen, and a GJ-Tube (feeding tube placed in her abdomen that is used to pump her nourishment through her body). Janie has been diagnosed with prolapsed rectum, acid reflux, gerd, aspiration, larygamacia, sleep apnea, mild hearing loss, failure to thrive, malabsorption, poor muscle tone, neurological issues, and has sensory, vestibular, and prospective disorders. However, the main diagnosis has gone unanswered. We are raising funds to cover the cost of a very expensive test that her insurance will not cover. The name of this test is a Muscle Biopsy with Mitochondrial Panel. The cost is $12,000.  Basically they will take out a chunk of her thigh muscle and test every strand of DNA (millions upon millions) over a period of 6 months. She will not be allowed to have any form of pain medicine or be put to sleep for this test due to her extremely complex medical history.  The test will determine if she is gaining muscle, losing muscle or muscle mass is staying stagnant. This test is in no way going to fix or diagnose Janie. It is going to give doctors a starting point as to what to look for and which direction they should go. It's a stepping stone if you will...

 

This brings me to a personal note. I know some families would take the doctors for their word that she can't be "fixed". That since the insurance will not cover this test, many would give up and say "it is what it is". Not the Hill's. Janie is a huge part of many peoples lives. She is meant to do great things in this life. This test will help begin the journey to help improve Janie's quality of life. Her parents will NOT take "no" for an answer. They are putting lives on hold and finances on the back burner to get Janie the help she needs. 

During a 3+  hour interview I had with Mike and Kristi, I asked many questions that were emotionally draining for me. Which makes me feel guilty to a point because all I'm doing is hearing their story, not living it. Why should I be emotionally drained. Afterall, Kristi is the one that is run through the mill with Dr. visits, birthday parties and everything that comes with being a mother to a 7 year old, 6 year old, 3 year old and a 2 year old with special needs. I am not the one who needs an emotional breakdown. When questioned diligently, they answered in all honesty and with a sense of dignity that I've never seen before. 

"What is the main thing that keeps you going every day?"  They answered in unison... with a smile on their faces. "Our babies". Simple as that.

"What would you say is the biggest sacrifice since this journey has begun?"  They both looked at each other with a confused yet humorous glance and answered again in unison, "Nothing". Kristi added, "We haven't sacrificed a thing. This is our life. We love our babies, we do what we have to do to keep them safe and loved." Mike added, "We live our life from day to day. We have 4 beautiful, loving, well behaved children, (Kristi chimed in with a smile on her face and a chuckle in her voice, "that we do want to strangle from time to time') but this is us. This is our family and we are thankful for every day." Mike continued with all seriousness... "At times it has been rough. But everyone has struggles. Our struggles are no different than anyone else's. This is all we know. We play the hand we were dealt and are blessed. For example, when Kristi called me a year ago with the news that they were in Birmingham about to place a tube in Janie's stomach for feeding, I jumped in my car and pushed the gas to the floor headed to the hospital. When I got there, I asked the nurse frantically, where is my daughter and she directed me to the West wing but then corrected herself "I'm sorry, the West wing is the burn unit, you need to go this way". At that moment I felt a peace about me that only God could have placed in my heart. Things may seem bad from time to time, but that could be my wife in the burn center, my daughter in the cancer ward, it could be much worse. We face trials and tribulations just like everyone else. But as a family, we got this! Superman has nothing on me. And Amanda, I thank God every night for my beautiful wife, I thank God for my sick daughter and my healthy children because it could be much worse. We don't have everything we want, but we have everything we need and we have each other." 

At this point in the interview I'm pretty torn up. I probably had snot running down my face and I know the tears were streaming. My notes are tear stained and wrinkled. My heart is aching for this family and the obstacles they have faced and will be facing in the future, but with the smiles on their faces and they joy that these children are, it's hard to be sad. I have only seen Kristi cry once. ONCE! I don't know how she does it. Trips to Birmingham to Children's Hospital several times a week having to leave her other 3 children at home with the question of "how long will mommy and sissy have to be gone this time" all the while these sweet brothers and sister are worrying about Janie and how they could help "fix" her. A husband working full time, 4 children to care for and make sure they have the most normal life they possible can. I mean, 4 healthy children are challenge enough in all honesty, but Janie's needs are something she takes in stride. She tries to make Janie have the best life possible regardless of the obstacles she faces day to day. And let me tell you little Miss Janie can hold her own. She may not be able to walk "yet", but she can scoot across a floor faster than lightning. She may not be able to talk "yet", but she can tell you what she needs by signing. They refuse to accept that Janie may have to be in a wheelchair the rest of her life. She may have to have one to go on trips and while she is out and about, but her momma and daddy are hell bent on making sure she is self sufficient in her own home with no wheelchair assistance. She will be a hell of a strong little woman when she grows up thanks to two loving parents and a house full of love, guidance, three brothers and sisters that will hurt anyone who gets in her way!  Kristi IS Supermom. She will deny that she is something special until she is blue in the face, but you that are reading this, mark my words, this woman is a Godsend to everyone who knows her. She will help anyone and I mean ANYONE that needs it, without question or expectations of anything in return. There aren't many people like the Hill's left in this world. I'm going to hang on to this friendship for dear life.

I'll leave you with this...

This is the Hill family.  Giving joyfully to others when they are facing such a trying time in life and putting on a smile at the end of every day that you come home to your loving family and embrace the good with the bad. They are a HUGE reason that my faith in humanity is being restored...

Janie's Journey is to promote awareness and acceptance for children with chronic illnesses and disabilities and to provide support for other families in their search for answers. Please join them by "liking" Janie's Journey on Facebook to follow her progress and to get information updates on how you can help Janie reach her goal! Janie and her family encourage any questions you may have and invite you to share your experiences and stories.Thanks for being a part of Janie's Journey! 

Here is the link to Janie's Journey on Facebookhttps://www.facebook.com/pages/Janies-Journey/513077992064819

If you would like to send mail or a donation made out to Janie's Journey or Kristi Hill you can mail it to P.O. Box 939, Trinity, AL 35673

And please visit Janie's Go Fund Me page just for special donations. Thank you from the bottom of my heart!  http://www.gofundme.com/3t917k

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