About Kimmy’s House

Dec 31, 2015.  We have become an inactive non-profit.  Over 1.4 million dollars was donated between 2009-2015 to support compassionate disability care in Haiti and India!

What a journey since 2002 with Kimmy’s Courageous entrance into the world, and Todd’s trip to India in 2005, the orphanage in Hyderabad, India named Kimmy’s House and eventually starting a non-profit in 2009.  We had a name change in December 2014 from Kimmy’s House to Made Known, “helping children with disabilities around the world become MADE KNOWN.”  Before we closed down, we changed our name back to Kimmy’s House to honor the namesake!

Our work as a non-profit has closed, but the courageous care is continuing through our former missionaries and partners.  Please visit http://www.madeknown.org for info on how to continue to support the work.

Stephanie Mosier, used this blog for many years to keep her supporters updated.  She now blogs at http://stephhaitijournal.blogspot.com/

Kimmy’s story and the connection made to global special needs orphan care follows below.

MISSION STATEMENT
Our mission is to partner with Jesus Christ to impact the lives of special-needs orphans around the world by providing quality physical, emotional, spiritual, and educational care, and to teach their communities to value them as God’s children.

 

THE STORY BEHIND THE NAME:

Enjoy the story of the earthly beginnings of Kimmy’s House. It is a story of hope and endurance. It’s a story that we pray reveals to you a glimpse of God’s plan. Every fiber of this story points to the almighty power and grace of Jesus Christ, and how He chooses to do extraordinary things. And lucky for us (and you), He chooses to use ordinary people. And of course, sometimes little amazing ones!

Our story: Written by Shannon, the proud mother of Kimmy

…I start with those three dots because they signify that there were events long before the point in history that I start this story for you to read. Although difficult, I had to choose a place to begin. It is a rather long introduction, but I can’t apologize, many of the details point to a much larger plan. Who knew that the start of a small life would be threaded into the continuum of a much larger plan to care for special need orphans around the globe?

Because this organization is named after our daughter, “Kimmy” Grace this seems like a good place to start.

Two cells rapidly dividing, began the life of Kimmy sometime in late May of 2001. Our first child, Caleb, was eight months old and he had just discovered how to hold onto the coffee table and walk around it.

I was enjoying every millisecond of being a stay at home mom. I LOVED being pregnant, it made me feel so much like a woman. The calling of providing a protective and healthy place for growing one of God’s fearfully and wonderfully created people delighted me to the core.

Little did I know at that time my womb was the healthiest place she would live during the first eighteen months of her life.

In June, while studying John 15, in the Bible, I heard a whisper that something was going to change my life with this child.

This child is going to be different.

September came and we were approaching the big one year mark in celebration of Caleb’s life. I was exactly at the half way mark in this pregnancy the day the towers in New York fell. Because of the day’s events Todd came home from work early and he was able to join me at my routine pre-natal appointment. I only mention that because had he not been there holding Caleb while the nurse did all her checks I would have declined to draw blood for the triple screen blood test she offered.

Friday rolled around, we were still in shock with the rest of the nation over the 9/11 attack. My midwife called to tell me my blood work showed a 1:12 chance of this baby having Down Syndrome; I needed to come in on Monday for an ultrasound to follow-up. Honestly, at first I was kind of excited to get to have a second ultra sound. I was eager to see the baby. I felt the baby moving all the time; I wanted to catch a glimpse of our second child.

I had heard of so many people having false positives on these tests that I assumed mine would be as well. I was 27. Healthy. I exercised. I ate well; I avoided caffeine, nicotine, too much ice cream and all the bad stuff in between. I read and reread the pregnancy books and took the exact prescribed amount of folic acid, calcium and ate the right ratio of fruits, vegetables and protein. I even made the sample recipes included in the back of the books. I was the poster woman on how to have a healthy baby. With water bottle in hand, I turned my nose at women great with child smoking a cigarette and drinking Diet Dr. Pepper. My blood test will be false too.

Unless that whisper I heard a few months ago was preparing me for something.

An unfamiliar face greeted us in the ultrasound room on Monday. The new tech was friendly and talkative.

We had brought our video tape so we could record a few minutes of the baby to share with Caleb and grandparents. The woman applied the clear jelly substance to my rounded belly and began to tell us the various markers they look for to determine if our baby would have Down syndrome. I was rather amazed at the science of it all.

The tech found the heart first and began paying close attention. She was very silent. Tick, tick, tick, the clock was loud, or was that my heartbeat? She didn’t say anything for an excruciating five minutes. I looked at Todd for reassurance. He squeezed my hand.

“Please,” I began, “tell me what you see. I want you to tell us as you go along. I don’t want to wait until you are all done.”

Deep breath…

WHY GOD? WHY?

Don’t you see me down here eating good food, getting exercise, going to church, reading my Bible? I am a Christian. I’ve been on THREE mission trips God, three. I am a good wife, a good mom, a good person. I haven’t done too many bad things. Well, BIG, bad things anyway. I am sorry I drank beer in college when I was underage.

Fix this God. Why me?

Because I love you. Because there is nothing wrong with my child. This child is my creation and she is perfect, I am loaning her to you.
“Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?” Exodus 4:11
“Neither has this man sinned, or his parents, but that the works of God might be displayed in him to display His glory” John 9:3

February 12th 2002, 1:39 am. Kimmy arrived. She took her first breath outside the womb, she was born.

Then she started to die.

A Flight for Life trip to a more capable hospital across town jolted us into a journey that we never expected. Tests, tubes, oxygen, probing. Four days pass.

“Take her home, this is how her oxygen works. See the cardiologist once a week, your pediatrician every three days, here is the number for the gastrointestinal Doctor. Schedule an appointment tomorrow. Call with any questions.”

Huh? What? Home? I have a 17 month old, I am not a nurse, I am a mom.
Will oxygen catch my house on fire?

She can’t figure out breastfeeding.
–Latch on little one, I have to breastfeed you, I am your mom, you are sick, it is only natural. Ok, let’s try a bottle. She can’t get the hang of this either, Let’s try a different shape nipple, a smaller bottle, a different brand, a syringe maybe. Her tongue is too big, she can’t suck. It takes me 2 hours to feed her 2 ounces. Then she spits it up.

HELP ME.

The doctors recognize that she is failing to thrive. A Nasogastric tube ( A tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach) is prescribed.

“Go ahead and take her home, if the tube falls out all you have to do is stick it back down her nose and into her stomach. Like this, watch carefully. Then you attach this 30 cc (2 ounce) syringe to the end and slowly push the milk into her stomach. Replace the tubing every 4 days. Alternate nostrils. Don’t forget to wash your hands, and oh yeah, visit the cardiologist tomorrow. You can take the portable oxygen tank in the car. Go on home now. Call with any questions.”

WAIT, my husband is out-of-town he won’t be back for three more days, Caleb is only 18 months, I just gave birth three weeks ago and I haven’t been able to sleep. She is so blue I listen to every breath she takes because I am scared she will stop breathing while I sleep. I am still bleeding. Shouldn’t I be resting and recovering?

Hmmm, at the doctor’s office they used a stethoscope to listen for the tube, why didn’t they give me one too? What if I miss and stick it in her lung instead? I think they sell stethoscope at Walgreens, I’ll go buy one.

Ok, every time I feed her she spits up. I swear I am doing this just like you told me. I push the milk in slowly. She can only take in 40cc’s and then she spits it all up. I have to start all over, she needs 45 cc’s every three hours. It takes me that long to get it all in so she won’t spit it back up. Am I to continually push the milk in all day and night so she grows? This is not working. Help me. She has lost a pound. I take her to the pediatrician every day to weigh her. I should just go buy a scale to keep at home. I weigh her right before she eats, then I weigh all her diapers.

Something is wrong!!!! SHE ALWAYS SPITS UP, this stupid tubing is driving me crazy. The doctor’s keep telling me she needs to be bigger so they can do her heart surgery. How is she supposed to get bigger when all she does is spit up? I AM TRYING! Why are you expecting me to solve her problems? I dropped out of college. Anyhow, I went to school to be an architect not a nurse.

More tests revel that her intestines are actually pinched in the area of the duodenum (the first part of the small intestine extending from the pylorus to the jejunum).

SEE I TOLD YOU SOMETHING IS WRONG!

Her first surgery. (Most moms are highlighting more appropriate “firsts’ in their child’s life right now)The surgeon corrects her duodenum stenosis (a narrowing or constriction of the diameter of a bodily passage). Three day hospital stay and then we are back at home. No more nose tubing thing.

“She should be ok, make sure she eats and gains weight. Follow up with the surgeon on Wednesday, the cardiologist on Thursday; check in at the Gastroenterologist too. Call if you have any problems. Cut back on the oxygen she is ok in the 70% range. You don’t want her lungs having to do too much work, she will burn too many calories. Set the alarms on her pulse ox machine to go off if she dips below 60% oxygen saturation and if she goes above 79%. (Saturation is a measure of how much oxygen is in the blood sampled as compared to the maximum possible. 95-98% is considered healthy.) Here is another prescription. Get some rest.”

Her alarms beep every hour. Not that I actually sleep anyway, I either have her on my chest or in her bassinette that is next to our bed so I can hear her breathe. She might stop. I know that is why we have machines connected to her with loud alarms, so that if she stops I can wake up and simultaneously perform CPR while I am on the phone with 911 and comforting Caleb because Todd is out-of-town on business. What if the alarm doesn’t go off and I am asleep?

Hey wait a minute that nose tubing wasn’t so bad after all. At least the milk could get to her stomach. She still can’t latch on very well. But I am tired of pumping milk, the bottles are too complicated for her anyway. I think someone needs to teach her how to suck.

I begin to chart every hour of her life. How much she eats, an estimate of how much I think she spits up and how many minutes pass between the eating and the spitting up. How much breast milk I am pumping, how many ounces of formula I have to add in. I weigh and record how much each diaper weighs when I change her. I have to keep track of her meds. Most of them she takes 4 times a day, some just three. I have to coordinate when she takes each one because some she can’t take at the same time as others. One has to be taken at least an hour after another and not within two hours before taking a different one.

I also paint her toenails pink. She is beautiful!

She is still failing to thrive. I take my charts and my concerns to each of her doctors. They remind me that she is indeed very sick . Keep on going.

Her heart is missing all the chambers and a major valve, for crying out loud. Blue is a normal color for a child with atrioventricular canal heart defect (a complex heart problem that involves several abnormalities of structures inside the heart.)

Children with Down syndrome often have a hard time learning how to suck. Her intestines are fixed. All I have to do is keep trying to feed her so she can gain weight and grow big enough to survive open heart surgery and the by-pass machine.

Do my part, be a mom, feed her and they can do their part and examine her and one day hopefully fix her.

Please, someone.

GIVE ME A BREAK I am doing MORE than all I can to try to make her grow! I have a mini hospital set up in my home. I keep charts and lists. Can I remind you I am not a nurse? I have another child who needs my attention. All the books on babies with Down syndrome really scare me. I really LOVE my baby girl, but I need help.

Six friends, all new moms come over one day and clean my house. What a blessing.

Six weeks old. Another hospital stay for failure to thrive. I feel like I am being punished and I don’t deserve it. I am not failing to help this child thrive; I am doing more than is humanly expected.

She is so sick that she is actually burning too many calories to stay alive. The effort it takes her to eat burns more calories than are actually in the bottle she is drinking.

This time a more permanent solution for her feeding issues is discussed. A feeding tube (often called a G-tube) is surgically placed in her stomach. She also has a procedure called a fundoplication. Basically the surgeon tied a portion of her stomach around her esophagus and tightened it up so she can’t reflux. (I find out later that this also means she will never be able to barf. I’ll refrain from painting you the picture of what she looks like now, much older, when she has the stomach flu and the stop sign on the up passage of her esophagus sends all the stomach contents forcibly back through her guts and out the other end.)

Another 5 days in the hospital. I take home my beautiful baby girl. She now has a plastic valve that I can snap open and shut, attach a tube and a syringe and feed her directly into her tummy. I am also supposed to add a teaspoon of pure olive oil several times a day with her milk so that I can boost her fat and calories.

I change her toe nail polish to purple. I dress her in pretty clothes. I hold her close and smell her hair.

The caution that came with the G-tube decision was that she may never learn to eat and may have problems with speech because she won’t be getting any oral motor stimulation and development. Ok, well I am not stupid; I WON’T let that happen to Kimmy. I will give her all her calories with the G-tube but I will still let her breastfeed too just to keep her skills up. I will give her some food on a spoon too, that oatmeal stuff for infants. Instead of using her tube to put in her meds I’ll make her take them from the syringe still. I’ll rub my fingers along her gums to stimulate her mouth. I won’t let a silly feeding tube keep my baby from learning how to eat or talk.

When you have a child who is fed with a G-tube and has had a fundoplication, burping is pretty impossible. I learned to keep the tubing inserted into her tummy valve and keep an open 90 cc syringe tube elevated over her head and tied to her car seat carrier or the swing or her bed…wherever. This more or less vented her tummy and allowed her “burps” to escape. I would leave her attached for about an hour after each feeding so she wouldn’t be uncomfortable from gas.

This venting concept I rigged up helped save her life one night.

Three months old. Todd and I were trying to lead a normal life despite the fact that it was not at all normal for us. Todd traveled and worked a lot. He wanted to join an indoor soccer league so that he could recreate once a week and take his mind off work. I was learning how to make Kimmy and all her gear portable so she, Caleb and I attended his games when they had an early start time.

One Tuesday evening I fed her via the G-tube during the first half of the game. Caleb fell asleep so I decided to drive home and miss the second half. I drove home with the syringe tied to the handle of the car seat and left it venting. When I arrived home and was taking her out of the car I noticed the syringe and the tubing were filled with bright red blood. There was more than 2 ounce of it. I quickly called a neighbor to stay with Caleb and raced her to the ER.

I left frantic voice mails for Todd to come to the hospital.

Results showed us she was bleeding from an ulcer caused by the G-tube. However the stress on her body caused by the scope they used to send the microscopic video camera down her throat sent her into pulmonary hypertension (an abnormal elevation of the pressure in the pulmonary circulation caused by the constriction of the blood vessels that supply blood to the lungs.).

She had to be intubated. This was the first time she was intubated to keep her breathing. Previously during her surgeries she was briefly placed on a breathing machine for anesthesia purposes. This was different. Things did not look good.
The cardiologist and cardiac surgeon decided to go ahead and do somewhat of preventative heart repair- heart surgery. Her chest was sawn open and she had a band put on her pulmonary artery to decrease the amount of blood going into her heart. This could buy her a little time and hopefully beef her up some more before they fixed her.

They also discovered she needed her ductus arteriosus tied off (The ductus arteriosus usually closes at or shortly after birth, permitting blood from that moment on to course from the heart directly to the lungs. However, if the ductus arteriosus remains open (patent), flow reverses and blood from the aorta is shunted left-to-right into the pulmonary artery and thence recirculated through the lungs).
A week stay in ICU and we were sent home.

A neighbor brings dinner over for my family. She tells me she will bring dinner every Wednesday until I ask her to stop. What a blessing.

More wires and cords and machines came home. This time they have inserted a Broviac, which is an IV line into her internal jugular. It dangles like an oversized piece of body piercing jewelry. She would now require 24 hour IV feedings of TPN and Lipids. TPN is basically food for the body administered into the blood stream instead of the stomach, Lipids are fat. This was to give her GI tract a break and still supply her body.
If I could do this for a month, she might be beefed up enough to survive open heart surgery.

Oh, did I mention that a nurse came over for two days to teach me how completely sterilize a work area, prepare her TPN and Lipid and change her IV’s. A procedure that took about 15-20 minutes each time and if not performed with complete sterilization or accuracy could potentially kill her. The nurse drew me a diagram of exactly how each item was to be connected. She showed me how to set the computer on the machine that pumped everything in. She gave me about 50 rules and cautions.

Then she went home and gave me a phone number to a nursing hotline. “Call if you need help.” You know what I mean when I say nursing hotline. You call, you are connected to a receptionist who asks you for your child’s medical history then puts you on hold, connects you to a nurse who asks you the same questions… it is all an exercise in futility because at the end of your desperate dialogue they always tell you to bring your child to the hospital.

At least I had the world’s best pediatrician. Dr. Halee had given me the number of her personal pager and her cell phone. She told me to call day or night and she would call back immediately. She always did. Also, my new friend at church, Angie was a nurse practitioner. She let me call her and ask endless questions and provided me with lots of support.

Thank God for people like these two.

After my two days of IV training, I now knew as much about this subject as most nurses do after graduating nursing school. I am a wife, a mom, now unofficially a nurse. I am tired; I have two children, one living, and one dying. I have a husband that is going to be out-of-town for another three days. WHY?????

A whisper.

Just wait my child. Endure. I have a plan for you. I have a plan for Kimmy. She is in my care. So are you. You are not alone in this. I will never let go of you. I love you. I gave my life for you. I know about sacrifice.

June 28, 2002 finally arrived. Kimmy is five months old. She now weighs over ten pounds. She gets her open heart surgery.

I didn’t mention earlier that she was 8 pounds 5 ounces at birth. This gives you an idea of how many calories she burned just to stay alive. After coming home from the hospital, most children will gain about an ounce a day after birth. That is one pound every sixteen days. It took Kimmy (and me!) five months to gain what healthy babies can do in just 30 days!

Her surgery takes eight hours. She does amazingly well. Chambers were created in her heart using Gore-tec (think ski gloves) her only valve was spliced and a second one created. Her heart is patched but functioning like it should.

She goes home on July 4th. She comes home with all her medical gear and machines minus the Broviac and IV feeds.

Yes, I am celebrating FREEDOM.

She is supposed to be healthy from here on out. Her heart will grow, her bluish hue vanish. And yes, because I am determined, one day she will have her G-tube removed and she will eat and speak.

All is well.

I learned to sleep again.

For exactly a month.

The alarms on her machines are going crazy. In my sleepiness I assume she had simply pulled off her oxygen. I stumble to her room. Yes, I said her room. We had moved her out of our room into her own. So we could sleep. Five months is a long time to go without sleep. I needed to start catching up. My precious baby had stopped dying.

I thought.

The alarm shows her oxygen saturation is too low, she is gasping for breath. She is blue. Her gasps are pained and rapid. I increase her oxygen. I pick her up and change positions. I reset the machine. Nothing stops her gulping. I unhook her from her compressor and put her on her portable oxygen and throw her in the car.

I race her to the ER. The 20 minute drive is too long. I should have called for an ambulance.

I arrive at the ER. We are well-known here, I know that I can bypass the reception desk, the admin form, the waiting room. I race her in and tell the first person I see wearing blue scrubs to call the pediatric intensivist. Thankfully I am not stopped or questioned. I take Kimmy out of her car seat while the doctor rushes in. She is bluer than I have ever seen her. She is GULPING for air, she is thrashing her head back and forth looking for air that is not going into her little body. She has a panicked expression on her face.
I am ushered out of the room and she is intubated and moved to the ICU. (They never let parents watch their child being intubated. Apparently it is not pretty.)

I thought my days in the ICU were over. We said good-bye last month. I was done here. The people were great but the food was getting to me.

I have to pause and mention that (almost) all the doctors, nurses, therapists and surgeons who have touched Kimmy’s life are AMAZING people. They all show endless devotion to their field and a high level of care. They were and still are our heroes.

Twenty one days of uncertainty followed. It seemed no one could agree on what was wrong.
We learned about the art and science of medicine.

She had repeated echocardiogram’s (ultrasound of the heart) and X-rays. She had a Bronchoscopy (a procedure during which an examiner uses a viewing tube to evaluate a patient’s lung and airways including the voice box and vocal cord, trachea, and many branches of bronchi) during which, it was discovered that she had mild to moderate tracheomalacia. This is just a big word to describe a floppy airway.

Every time she would show signs of improvement the respiratory team would wean her and take her off her breathing tube. She would crash again and have to be re-intubated.

We discussed having a tracheostomy (a surgically created opening in the neck leading directly to the trachea (the breathing tube). It is maintained open with a hollow tube called a tracheostomy tube.) placed in her throat to provide a permanent airway solution. I flat-out refused. Unless someone could convince me that it was her only hope, I did not want Kimmy have a hole drilled in to her throat to be attached to a breathing machine for who knows how long. I needed the doctors to agree. Was it her heart, her lungs, her airway? WHAT?

Please let me have a little girl who I can hold.

A child that will grow and run and jump and flip cartwheels and play duck duck goose.

A whisper.

A shout.

I am in control, Kimmy is in My Presence. I am with here. She is dancing, she is aware of Me, I have her in my grasp. Rest in my peace, rest in my loving arms, you are her earthly parents, I AM her Father.

What I really needed was a break. I needed to spend 24 hours away from the hospital. I wanted to spend time with Caleb and not visiting him in a hospital play room. I needed to sleep in my bed, the foldout chair in the ICU was wrecking havoc on my body.

My mother in law agreed to sleep at the hospital in my place. I went home to play with Caleb and to rest.
The phone kept ringing. I ignored it a few times. When I finally answered it was my mother in law, she was very concerned and thought I should come down. I wrongly thought that she was just overwhelmed by all that was going on. I had lived at the hospital and at Kimmy’s side for the greater part of six months. I had grown used to the drama.

Certainly she was just overwhelmed.

The phone rang again. It was Dr. Alswang. He told me that I needed to come immediately, not to wait for a sitter for Caleb, just to bring him and come. It looks like she may not make it.

I arrived in the ICU. Kimmy had a lifeless body attached to yet another machine. This one was rapidly pumping CO out of her body, next to it the intubation tube pumping in Oxygen. The combination of the two machines working simultaneously made her lifeless body thump up and down on the gurney. It was a depressing site. The doctors had put her into a drug induced coma.

While I was at home ignoring the phone Kimmy had crashed. A doctor heroically jumped on top of her hospital bed and pumped on her chest to restart her heart while others scurried to connect her to the machinery that was now supporting her life.

For the next 24 hours, she remained like this. These 24 hours were supposed to give her time and strength. The cardiac surgeon wanted to buy her time so that he could saw open her chest for a third time, and open her heart up for a second time and see that was going on. The ticking of the clock that passed the time was not heard over the whirring of all her machines. While Todd and I sat and held her hands there was absolutely no response from her little body. Just the thumping of life support.

A whisper–more like a shout.

Do not fear. I am with her. I am with her. She is mine. She is dancing. She is healthy.

God, does this mean we need to say goodbye?

Let ME have her and I will give her to you.

The hardest part of this waiting was watching all the people who came to visit Kimmy. We sat in a surreal state, watching real-time events from a skewed, disconnected perspective. Family and friends filed past. People from church came. Nurses who were supposed to have the day off came to see her. Parents of other patients that we had met stopped in. A hospital chaplain, whom we had never seen during any of our previous and frequent hospital stays came to meet us. He lied when he said he comes around all the time to talk to folks, he just wanted to stop in and say hello and let us know if we needed anything his office was on another floor.

Kimmy’s pediatrician, and my now a beloved friend, Dr. Halee was honest with us. She told us in a very loving way that no one thinks she is going to make it.

Prepare yourself.

Were we being selfish? Was our desire for Kimmy to live preventing her from the freedom of being in the presence of God her maker?

Whole, healthy, laughing, playing, dancing.

But separated from us?

During the three weeks of this hospital stay there was a certain song that I CRANKED loud in my car. Often, if they had not come to the hospital, I would drive back home in the evening to see Todd and Caleb. We would pray together and I would kiss them goodnight. I’d grab a change of clothes and then return back to sleep by Kimmy’s side. This song was set on “repeat” in my car. It seemed to sustain me. God was very lovingly shouting to me through the lyrics of this song. I listened over and over because the words thundered in my soul.

“I can only imagine what it will be like, when I walk by Your side…
I can only imagine, what my eyes will see, when Your Face is before me!
I can only imagine. I can only imagine.
Surrounded by Your Glory, what will my heart feel?
Will I dance for you, Jesus? Or in awe of You, be still?
Will I stand in Your presence, or to my knees will I fall?
Will I sing ‘Hallelujah!’? Will I be able to speak at all?
I can only imagine! I can only imagine!
I can only imagine, when that day comes, when I find myself standing in the Son!
I can only imagine, when all I will do, is forever, forever worship You!
I can only imagine! I can only imagine!

This song was not about heaven. This song was not about dying and standing somewhere else.

I missed it at first. But this song was about NOW. This song was about LIVING in HIS PRESENCE.

Kimmy was in His presence. So were all of us surrounding her.

She is dancing, she is in Awe. We are falling at His knees unable to speak.

A whisper, but because of my tears…A Shout.

Wait my child. I have a plan and a purpose. She is in my grasp. I will never let go. I am holding you. Feel my presence. I AM here. Find rest for your soul.

The morning came and the clock slowly ticked off the final minutes before she would be wheeled back into the operating room.

Todd and I prayed. We told God that it was ok with us if He needed to take our daughter to heaven. She belongs to Him anyhow. She is just on loan to us for our allotted days together.

We held Kimmy’s unresponsive fingers and gave her verbal permission to go ahead and decide what she wanted to do. We loved her and would never stop loving her no matter where her soul resided.

We kissed her hands and walked next to her gurney for as long as we were able. The red painted line on the white linoleum floor signifying authorized admittance only arrived at our feet.

We stopped. We kissed her again and held hands and watched as the automatic hallway doors closed behind the team of people God would trust with this little extraordinary life.

We purposefully avoided the waiting room full of friends and family who had come to be by our side. To pray, to wait. To catch us if we fainted. We were too raw to look at anyone.

We snuck out a side door and walked hand in hand around the perimeter of the hospital. We prayed. We made plans for going home without Kimmy.

Then, we returned and we sat with our family and friends and prayed and waited. No one really looked each other in the eyes. There was too much real emotion waiting to brim over. No one wanted to acknowledge it.

Miraculously, the hourly doctors’ reports from the O.R. were encouraging.

“She is on the by-pass machine. We are cooling her core body temperature. She is doing well. We see the problem. We can fix it.”

“To the best of our knowledge, it seems that the reason behind this trauma the past few weeks was created somehow by too much pressure building up in her heart causing the sutures from the first surgery to tear away. This caused more damage to her heart. But we can fix it. The surgeon is working hard, the team is doing well.”

“She is off the by-pass machine and her body is warming. Her heart is working again. It will take a few more hours to close up her heart. Then we have to get out the staple gun and put her chest back together.”

“The most critical time is still ahead. The next 48 hours. This will be the deciding point. But, it looks better than we had hoped. We think she might have a chance.”

Finally the emotion was able to spill out. We were given permission to have hope. To celebrate.

A whisper. A Shout.

I give you hope. Hear me child. I have a purpose. I have a plan. Trust in Me. I am here. Find rest in my arms. I bring you hope and a promise.

Kimmy finally started thriving. She was brought home less than two weeks later. Caleb tuned two. We started living again.

She was slowly weaned off some of her meds. Weekly visits to each of her doctors turned into just monthly visits. Her oxygen was improving; we were able to give her less and less. Soon we only had to turn on the machine at night.

I still worked hard on her oral motor skills. I still let her breast feed. She still required all her calories through her feeding tube, but I was determined to give her a better option one day. We fed her baby food from a spoon. It was a lot of effort but she learned how to use her tongue and swallow.

Now instead of doctors, therapy visits filled our calendar. Thankfully, therapy was in our home. As my nursing duties were diminishing I was began my training in Occupational, Physical and Speech therapy. We had an amazing OT, her name was Rosemary. She would come and work with Kimmy and teach me the exercises to repeat several times each day.

We celebrated Kimmy’s first birthday with cake that she ate herself by the fist full. She was free from all her medical equipment except the feeding tube. She was growing and gaining weight. Her X-rays and echo’s showed her once enlarged heart to be shrinking and functioning well.

I decided I was going to close the plastic valve on her feeding tube and work with her to be independent from it.

During this time we still had various visits to the ER for minor things. She had several more surgeries. All of which were minor and performed in either outpatient or day surgery. In all over two dozen surgeries have been needed to support her life.

One day I took Kimmy shopping with me to the book store. A woman was in line in front of us. She stared at Kimmy as if she was pondering something. She then asked me what her name was. I said “Kimmy, Kimmy Grace, because God’s grace has sustained her life.” The woman started crying and reached out to Kimmy. She said, “Hello little one. I have prayed for you since I found out about you.”

At various points since we had found out about Kimmy I would send out e-mails to friends and family with updates and prayer requests. This woman was on the receiving end of one of those messages that had been forwarded on to people whom I didn’t know.

What a blessing and an honor to meet a stranger who had gone to The Throne Room of God on our behalf and prayed for my daughter’s life.

July 2003. Thirteen months after Kimmy’s second of her three heart surgeries, her feeding tube was removed and the hole sutured shut. I had not used it in over three months and we were all brave enough to remove it. Kimmy was strong enough to survive without it and we felt like there was not a chance that she would ever take a turn for the worse again and need it.

All of these events, though treacherous at times, had a purpose. The purposes are too numerous to count. Some of them are still waiting to be realized.

However, one purpose does stand out above the others. It is what brings us to part two of this story. And at the same time to “Volume One” of a bigger purpose.

KIMMY’S HOUSE 1, HYDERABAD, INDIA

In January of 2005 Todd was growing weary of long work weeks and too much travel. I was six months pregnant with our third child, James. Caleb was four and Kimmy, now finally walking, was approaching her third birthday. Life was settling down and Todd was taking a few weeks off. He was packing his suitcase for an adventure that would ultimately change our lives (again).

The previous October a man named Timothy had visited our church. He was from India and had traveled to the US to share about his ministry in India to train village pastors in poor rural areas all over his country. A team of folks from our church decided to travel to India and teach the Bible alongside Timothy.

The tsunami had hit East Asia just two weeks before the team was set to leave. The plans to travel were not cancelled, however, they were altered slightly to include helping with the relief effort.

This extra travel provided an opportunity for Todd to get to know Timothy personally. Todd recognized that it was on Timothy’s heart to not only train pastors but to also care for the abandoned and disabled children of India. This struck a chord in Todd’s heart.

Timothy took Todd and a few others to a rented apartment in a poorer area of town. This apartment was somewhat of a mini orphanage for 8 abandoned children that were mentally handicapped and/or have polio. Timothy had rescued these children and paid a caregiver to care for them.

In a land with a caste system and where physical labor is the main means to earn a living, children with disabilities are typically seen as having no value.

No value? One of God’s created having no value?

With Kimmy on his mind it was hard to hold back his emotion after visiting the children. Something bigger was tugging on his heart. Timothy shared with Todd his hope of buying land and building a home to care for more children. Perhaps one day at least thirty.

A whisper

A connection

A purpose

Todd knew he had to help. He was excited to share his experience and e-mailed home. He told me to pray because we needed to fund the home; perhaps it could be named after Kimmy in honor of her life. Perhaps one day Kimmy could travel to India.

Ultimately by pooling resources with other family members, we were able to send the funds needed to purchase land and build a home.

In February 2006, Kimmy turned four. At her bi-annual cardiologist check up the Doctor remarked at how good she was doing. He told her he would miss seeing her so often, but not to come back again until she was five.

Kimmy’s heart once grossly enlarged because it was so damaged was ticking away at a normal size.
Yet, that now normal size heart was indeed doing large things. Because of Kimmy’s life and her determination and endurance others with a heart to make a difference are participating in the lives of children half way around the world.

While Kimmy celebrated her birthday with family and friends, eight children in India moved their meager belongings into the completed home named Kimmy’s House. Soon more would arrive. The number quickly grew to twenty, then thirty, then forty…

It may be true that we cannot even put a dent in the need that exists worldwide. There are countless children, those with profound disabilities who are discarded to back rooms and alley ways. But, we can make a difference with the children God brings to Kimmy’s house.

….and in June 2008 God whispered that Kimmy’s House would go to Haiti. In 2010 it is being built because of partners who have served in Haiti for over 30 years who have their own three dots that begin their story…

…and in the fall of 2009 a second partner in India would have children with special needs put in his path and his dots are threaded into the story…

Are you hearing a whisper?

8 thoughts on “About Kimmy’s House

  1. Shannon,

    Thank you so much for sharing your journal. You are truly a gift from God to me. You’re always an inspiration and you always make me smile.

    Victoria

  2. Shannon and family,

    My name is Tom Kirby, your dad’s cousin. The last time I saw you, you were quite young. I grew up with your dad. Played with him in his back yard. I saw him in July. What a treat! Your dad was indeed a great man. It’s obvious he touched a multitude of lives. To know and to see his entire family serving the Lord as you do is a great legacy to have left behind. His life has has honored the Lord. I was reading in Psalms this morning. Several verses I read made me think of your dad… “The Lord cares deeply when His loved ones die. Oh Lord, I am your servant; Yes, I am your servant, born into your household; You have freed me from my chains.” You are all in my prayers.

    Love,

    Tom

  3. Shannon, Todd and family,

    It’s always a delight to re-connect with you!

    Over the years and miles, you’ve continued to be a bright light to our family, setting powerful examples of selflessness, love, hope, joy and dedication to God-led lives.

    May you continue to be blessed as you bless the lives of others!

    We’re excited for your trip to India, Shannon, and we’re looking forward to your journal entries! Thanks for sharing.

    Much love,

    Janet, Jeff, Jamie, Danny, Melissa and all the rest

  4. Thanks, Shannon! I am praying for you and Char and the team.

    We have room for one more on our India trip Feb. 12-25 to do construction, medical and spiritual care at Kimmy’s House and beyond. Perhaps someone reading this is led to go???

    Trusting Jesus,
    Lucinda Van Vleet

  5. Dear Shannon,

    Thank you so much for the Christmas Card, the information about Kimmy’s House, and the letter updating us on your goings on.

    Let me say first and foremost how sorry I am to hear about your father. I know how difficult it is!! I lost my Dad to Pancreatic Cancer on April 10, 2007. It was the most difficult time in my life, still can be rough at times. I was with my Dad when he died and I am so thankful that I know he went straight into the the arms of Jesus at that very moment. It was beautiful and tragic all at the same time!! The first year was most difficult, but one day, the Lord provided the most beautiful sunrise I have ever witnessed. It was as if He was saying, “Everything is going to be fine! This is just a glimpse of what your Dad is experiencing right now!” At that instant, a peace came over me, and now I am just biding my time until I can see my Dad again. It’s going to be awesome. I know that God will bring you the same peace!!

    Second, I want you to know what an impact you and Kimmy have had on my life. When you asked me to volunteer at Adam’s Camp, little did I know that it would change my life forever. I have found my dream job here in Knoxville with an organization called Shangri-la Therapeutic Academy of Riding (STAR). We provide horseback riding therapy for children and adults with disabilities, i.e. Down Syndrome, Autism, etc. (www.rideatstar.org). I am the Volunteer Coordinator and I witness mini-miracles every day!! Anyway, ever since volunteering at Adam’s Camp, I realized that somehow and someway, I needed to be a part of something involving the special needs community. The Lord led me to STAR and I am so thankful!!

    I visited your website (Kimmyshouse) and began tearing up (nothing unusual there, ha ha). What a beautiful thing you all of created!!! Please keep me updated on the progress. Sorry about the length of this note. I hope you don’t mind!! (Gift to Kimmy’s House coming shortly!!)

    Take Care Neel Family!!

    Melissa Suadi

    P.S. Please tell LaWanda “hello” for me!! I sure miss her too!!

  6. Dear Shannon,
    I think this is the first time I have read this story from start to finish. But I know the whole story is not finished. God still has more chapters to write. Thank you for your transparency. I love you.

    Aunt Tina

  7. Dear Shannon,
    Thank you for sharing your story! I’m hearing that whisper from God. Let’s talk as soon as you return from Haiti. Doug Corley

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