I would love to sit and share with you Kyles story from beginning to the end! There are so many miracles that took place in his 24 years on this earth!! This season of life without him is extremely hard though & it could take me some time so for now I am sharing a few articles I had written for newsletters done by the Care Center. I hope you will enjoy learning about Kyle here….

Written August 2022- We were asked to continue from the previous article & bring it up to date for a book they are putting together about their children at the Care Center. I loved writing about Kyle. I had no idea He would be leaving us so soon!!

Kyle Esh Part 2

Wow! As I reread the story above, I just could not believe it has been 8 1/2 years already. And to be honest I couldn’t believe that was our lives!! In the moment you just love your child, doing what needs to be done & not thinking too much about it. But reading it, and realizing that is us, brings mixed emotions! I will try to bring you up to date a bit here….

Today is August 9’th, our oldest sons’ birthday. He turns 27 today, he was 3 when Kyle was born. There are literally times I have to do the math to make sure Kyle is actually 23 years old, 24 in a couple of weeks. It is really  unbelievable & as hard as some years have been it still does not seem like it could be nearly that long. Our boys have become Uncles last month, yes, we are grandparents!! Our daughter, who now lives in TN had her first child, a baby Boy named Jack Elliot. We are so excited! I wish it were not so far, but we have much to be thankful for! Tomorrow Kyle, our caretaker Miriam Miller, a cousin of hers, and myself will be traveling to TN for a week. This is our third year of taking a summer trip & I really look forward to it. Sometimes I think I must be crazy to do this without my husband’s help, but I am not crazy I just love adventure & love making all the memories with Kyle I can! I am believing for lots of smiles, giggles, happy screams & even some hand clapping on this trip!!! We are very thankful for Miriam & her involvement in Kyles’ life.

In 2014, when that letter was written, although we did not realize it, we had a pretty easy life with Kyle.

He had a very routine schedule each day & he was mostly content even just sitting around. That has changed a lot!!! In 2017 Kyle ended up at Hershey Medical Center with a bowel blockage. It was very unexpected, 2 days before we were to leave for Florida. I was delivering flowers on Valentine’s Day & got a call from my husband. Kyle was gagging when he got off the bus and just would not stop. I called the doctor & they gave us some things to do but said if it continues overnight, we should take him to the doctor in the morning. It was a rough night, so we made the trip to the doctor. They examined him, gave us medication to try but said if it did not stop by that evening, we would need to take him to the ER. That evening poor Kyle was still gagging so we drove to Hershey Medical Center. We drove separately in case we had to stay. Ivan had market the next day. We got there around 7:00pm and the waiting room was packed, we were still waiting at 11:00 so Ivan left. They finally got us in around midnight. After checking a few things, they brought another bed into the room, shut the lights off and told us we could get some sleep. Early in the morning we did some more tests and they admitted us around 8:00 with a blocked bowel. The children’s hospital was so full & since Kyle was then 18, we had our first stay in the adult hospital, another totally new experience. They loved Kyle & treated us so well, but it was a stretch for the nurses. They did not have small pampers, scales to weigh input & output, small enough gowns & even the meds were not children dosage so had to send for everything from the children’s hospital. We had excellent care though on the 5’th floor. We hoped we could get things taken care of and get home & still take our 2-week vacation. The kids were not sure what to do but had flights scheduled already so went ahead to Florida thinking we would join them. Things did not work out that way. Kyle had surgery but was not bouncing back well. They decided to take him in one night and see if they had missed something. During that time, they punctured a lung and Kyle went from the 5th floor to Intensive care. I got a call at midnight that things had not gone well, arrived the next morning to relieve my husband and did not go home again until Kyle was released. The children came home from Florida, The Ronald McDonald house gave us a room and our “vacation” was spent at Kyles bedside. When we finally came home, the day before the snowstorm in March 2017, we had spent 4 weeks in the Hospital. God sent us amazing people to love on Kyle & who helped us battle through some craziness that took place (with the punctured lung). I believe we may have even had an angel who stepped in to get us what we needed one day! God showed himself strong in so many ways, but we were certainly ready to get home and get back to our lives. No Florida trip that winter! This hospital stay had been the first in 12 years. Kyle had been back to Hershey for dental work & ear surgeries but never stayed overnight & thankfully had not been sick enough to need hospitalization.

Soon after that our pediatrician’s office told us they just could not continue to see Kyle since he was over 18. In the summer of 2018, I went to the Clinic for Special Children’s auction. While there I bumped into Dave & Keturah Beiler whom I had known since we were children but did not know much of her work at the clinic. I told her about our situation & not knowing where to go for care. She said she would discuss Kyle at next week’s staff meeting and see if they could take him. We were thrilled to get the call that they could. Kyle was going through an extremely demanding time in life. Very restless, almost angry at times. He did lots of head banging, they had to push him in his wheelchair almost the entire time he was at the care center so would switch off volunteers all day so as not to wear anyone out. I believe it may have been that he was going through puberty at a later age. At the clinic they were shocked how hard he was to care for in just that one visit. It was exhausting. They immediately suggested we put him on medications to calm him. That began the process of finding out what was right for him and what dosage we needed. This helped but did not get us back to the content child we once had.

In the Winter of 2019, we went to Florida for Christmas & New Years. I had high expectations for 2020. Kyle would be graduating, was hoping to through a big party. Covid hit, school closed & that was the end of that season in Kyles’ life. No graduation, no party, never went back to school. Daycares Kyle was supposed to transition to after graduation closed & when they reopened, they required masks which Kyle did not wear. We were & always are so thankful for the Care Center. They were the only option we had & they love on Kyle so well!! We know we can trust them with Kyle, and they will not enforce vaccinations, etc. behind our back.

Another thing that happened that year is coming back from Florida Kyle never settled back into his sleeping routine. He would go to his bed nicely and then wake up sometime between 1-3 am and wants to be moved to the recliner. In Florida he always sleeps on a recliner & it sometimes takes a while to get back to routine when we get home. This was different though. It just went on and on. He started waking up and wanting water several times a night as well. He has probably only slept through the night ten times since Christmas 2019. We tried adjusting medication to help him sleep. He was sweating at night as well and the thirst continued. One day I was sitting on the couch just watching him sleep on the recliner & thinking to myself “what am I missing?” Suddenly, almost like a voice from heaven spoke to me and I said aloud “Its his heart!” I texted my family and told them I am fairly sure Kyle is having heart issues. I took several videos over the weekend then sent them to the clinic Monday morning. They asked us to bring him over, did several tests and bloodwork, connected us to their cardiologist in Lancaster for an appointment that day. The next morning, we got a call that we needed to get Kyle to a hospital. We spent the next 3 days in Hershey again as they did more tests on his heart and met with doctors to discuss any options. We decided we would not put Kyle through open heart surgery again, he had two as a baby. The doctors told us Kyle was in right heart failure. They said “this heart could really give out anytime, but since its Kyle & We did not expect him to even leave the NICU alive and he is 22 years old, we have no idea, it could last another 10 years!! 😊 Kyle truly is a miracle. I am thankful I get to be his mother!!

So now we monitor the heart more regularly. He gets heart medication twice a day. We see a doctor at Hershey for the heart, see the doctors at the clinic in between when we have concerns. The doctors really wanted us to get overnight nursing for Kyle and we have been trying for 2 years and do not have any yet. We have a friend who comes one night a week to give me a break. This morning I contacted Hands to Care and it sounds like they could possibly help us!! What an answer to prayer that would be. Kyle currently wakes up 6-12 times a night for water. He still sleeps in his bed for a few hours then gets a pamper change and wants to sleep on the recliner the rest of the time. I really look forward to getting more sleep again once we are able to set up some kind of care.

As I finally finish this, it is August 24 & Kyle turned 24 today! It has been a day of reminiscing some, looking at old photo albums, reliving the good & the bad days. God has brought him & our family through so much! What next? Only God knows! We know that life is made up of  many different seasons, no season lasts forever. I am determined to get the most out of this season & see that Kyle does as well. I want him to experience new adventures, meet new people. Everywhere we go people are blessed by him & his smile. His laughter is contagious! I tell Kyle all the time he is a warrior for Jesus! His middle name is David & I remind him of the humanly impossible things God did through David the little Shepherd boy in the Old Testament. Whatever it is God has planned for this young man I want to be right there helping him to achieve it. We pray for divine appointments each day with people who need a little love & laughter. Kyle has definitely settled down a lot more since those really rough years, but we are still praying for & declaring more healing in his life. A verse we claim for Kyle is …..

Psalm 27:13- I remain confident of this: I will see the goodness of the Lord in the land of the living.

Thank you for listening to our story! Thanks to all who work at the care center & all who support it! We are forever grateful for the “village” God has blessed us with to help in Kyles care!

May God Bless you all,

Sue Esh (for the Esh family)

Written for Care Center Newsletter, Part 1

Hello from the Esh Family- I hope you are all enjoying this Spring weather!! What a blessing it is!!

My husband, Ivan & I have 3 children- Kendra (21), Virgil (18) & Kyle (15). My children were all born at home with a midwife & before Kyle came, we hardly knew what a hospital was! He changed all that & we have come to realize how blessed we are with the medical care we have here in the US! God has been so faithful to us thru this walk & I hope to be able to share a bit of that with you!!

Kyle was born August 24'th, 1998- here at home just like my other 2, We had no idea there was any type of birth defect with Kyle even though we had just had a sonogram the week before. We knew immediately though that this was serious. The midwife & my husband rushed Kyle to Lancaster General & from there he was flown to Hershey. Kyle was an extremely sick boy. He spent one month in the NICU there and had his first surgery at 3 days old. We had many serious & precious meetings with the doctors. God showed himself strong in every way. The support we had from family, our community & our church family at Spring Garden Church was amazing!! The night before we were able to bring him home they told us they had found his diagnosis- He had Mosaic Trisomy 22, which is an extra 22'nd chromosome on some of his cells. Kyle's case was the first they had ever had, and they could not tell us much about it. Many of them, we were told, do not make it through the 9 months of pregnancy. Our doctor later told someone that She did not expect him to live more than 24-48 hours when he arrived. He is truly our miracle as 9+ surgeries, many hospital stays & 15 years later he is still with us!!

Kyle changed our lives in so many ways & has blessed us incredibly. Yes it has been a battle & there have been many frustrations, but God has been faithful! Our eyes have been opened to many things; our hearts have been changed as well. We have met so many people & had so many experiences we never would have had were it not for Kyle. I never would have guessed way back then that almost 16 years later we would still be caring for a special needs child- changing diapers, feeding him through a tube, using a wheelchair & learning to communicate with a child who has no verbal communication. I was naïve I know, I thought people go to Hershey to get fixed up and did not know it would be a long-term thing. We prayed for a miracle from the beginning & we have seen many. But the biggest, the complete healing we really want to see, is one we are still waiting for!! We know without a doubt that God could heal Kyle at any time like he did the lame, blind, deaf & dumb in the Bible and since then,  and we would so desire that! I dream of the day I can talk & communicate with Kyle. I long to run with him. But whether that day comes here or in eternity I will still serve God & Proclaim His faithfulness to those we meet.

I have always wanted to travel, to be a missionary in some other country, but God has shown me many times that there is a huge mission field here, in my own community & especially among Families of Special Needs Children. The road can get weary, sometimes we just need a lift, someone to cry with who understands & someone to laugh with who understands why some of the weird things that happen in our lives we just need to laugh about!! There are many all around us & especially in Hospitals (doctors & nurses included) who need encouragement & so I want to accept the mission he has given!!

Kyle will be 16 this summer. He attends school at Garden Spot High School 5 days a week. Saturdays are most times spent with his mom as the rest are off to work at our Restaurant at the Amish Farmers Market in Annapolis, MD. Sundays he enjoys going to Children's Church at Petra Christian Fellowship where we have all been  attending the past 51/2 years.  We have been blessed there with many great friends & a huge army of Prayer warriors for Kyle. Kyle loves school, loves one on one attention & loves to go for rides in his car seat, especially with dad in the market van. His favorite thing to do though is to swim & he is very daring in the water! We are so looking forward to summertime!! Kyle also attends the Community Care Center on Friday's, getting dropped off from his school bus after school. In the summer he attended Tuesdays as well.

MT22 has affected Kyle in many ways! He was born without a hole in his rectum & had a colostomy for the first year. In this time, they reconstructed the hole & when it was healed they reconnected everything. Praise God it is all still working!!!:) He also had a heart defect called Tetrollagy of Fallot which he had surgery for at 3 months of age & then again at 2 years. He only has one kidney & that one is doing well. He doesn’t eat much at all, only a few baby foods or yogurts a day so he is tube fed every night. Kyle doesn’t walk so we use a wheelchair; he doesn’t talk either but has his ways of letting us know his needs & wants!!! His biggest problem in the last few years has been his ears. He has exceedingly small ear canals & they seem to get infections all the time! He has had 3 surgeries to date, for ear tubes to be put in. For the most part  though,  Kyle is a very pleasant & sweet kid! His smiles are adorable & his giggles are "out of this world"!! A giggle from Kyle can make us all drop whatever we are doing & just enjoy the moment, he truly makes our day!! We have met several other children with MT 22 in the past 10 years, one even coming to visit from Scotland, and the amazing thing is they could've easily passed for brothers!! We also have connections through families with MT22 Children online which is really nice!!

I am so thankful for the amazing people who donate their time & talents at CCC! I love that every Friday I know that Kyle will be dropped off there after school & it is one day if I want to go farther away (like maybe a visit to market, shopping with friends, etc) I can do that without needing to be home for the bus at 2:30!! It is great to see the love & attention they give our kids. I think the Guys Night is really cool, but it does feel a bit funny to put Kyle on the bus at 7AM and then not see him until 8:30 in the evening. I always tell him he is acting just like my other teenagers, just gotta stay away from mom all day!! J So thank you to all of you who love on our Kyle & to all of you who work behind the scenes to make this all possible!! We are truly blessed!!

       Many Blessings to you all!

                                     Sue Esh (for the Esh Family)