For All the Children We Love

Since you are here on our blog you may all ready know that Discovery Arts is a very special organization that brings Music, Art, Dance and Drama to children who are in the hospital receiving treatment for cancer and blood borne diseases. These very sick children all share one wish.... "to be normal".  Anything we can do to make their journey a little easier or a little brighter is our greatest wish. We are honored to serve these wonderful children and their families each and every week and all year long.

I would like to share my experience, strength and hope to bring light to why this is so important to children and their families. It was under very blessed circumstances that I met Discovery Arts’ kind and loving Executive Director Marilyn Clements. It took some time for me to gather the strength to come forward to actively participate with Discovery Arts. I remained very much in the background for many years offering to help here and there when I could. You see … I had to gather up some healing before I felt strong enough to be able to give back, or strong enough to share my story. God in his mysterious way has led me full circle.

The impact of watching your child live their life in hospital rooms – takes some time to heal from, if you can call it healing. I am now convinced that there will never be total healing … just a different way of coping.

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Many years ago, my first child a sweet baby girl, Ilona Rene was born in Wiesbaden Germany on January 1, 1981. It was also my first wedding Anniversary. Just days later the Iranian Hostages were released. They were brought to Wiesbaden AF Hospital to debrief before heading home to the US. You might remember on January 20, 1981 President Carter ended his Presidency and Ronald Regan was inaugurated. Within 24 hours former President Carter traveled to Wiesbaden Germany to personally greet the Hostages on their release on January 21, 1981, after 444 days in captivity in Iran.

I was told on January 1st, when Ilona was 8 hours old, that there was a problem with her heart and she was immediately transferred to a children’s specialty hospital in Wiesbaden. I was still a patient myself so I had to watch them take her away in an incubator. This was my first heart break and I was only 19 years old myself. That visual is burned in my memory bank.

When I could get to Ilona the next day she was in a shared room with a very young child who was connected to an Iron Lung. He was probably 5 years old. I will never forget walking into this hospital room – one tiny baby all connected up with her hands tied down and this 5 year old clamped down with a respirator. This young boy was fully conscious and alert. He could see my pain every time I walked in the room – yet he was the one with tears streaming down his face – and unable to speak to me. He didn’t know English and I didn’t speak his language, but we communicated a lot during those days and nights. All I could do was stroke his arm and hair and let him know that I cared deeply for him. He had long soft curly brown hair and big round brown eyes. In the days I shared with him not once did he have a visitor; no Mom, no Dad, no Grandma or Grandpa, no brothers or sisters. No One! One of the biggest regrets in life my … why didn’t I get his name? I still have a need to know.

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Ilona was transferred to Wiesbaden Air Force Hospital when she was 14 days old. On approximately January 24th we were medevaced by helicopter to Landstuhl Regional Medical Center, a US Army Hospital in Germany. That’s when we were so graciously celebrated by the Iranian Hostages. They had been watching us board the helicopter; me, a nurse and Ilona in an incubator. This was all very surreal, I was buckled in sideways as we took off, looking out of the side window of the helicopter. I will never forget the view of the snow drifts around the helicopter as we were lifted up to eye level to see the hostages who were on the 3rd floor balcony of the hospital waving at us, wishing us God Speed.


Once at Landstuhl it got much more intense – long … long hallways to get to ICU. Rougher treatments, with lots of poking and prodding. Ilona had her first Cardiac catheterization (of 5 total), which is a tube inserted in her hip artery to her heart, for diagnostic evaluation. The Air Force put us up in housing, a lot like Ronald McDonald house, which was walking distance to the hospital. It’s there at Landstuhl that we met Christopher C. and his parents Lux and Craig. Christopher was a heart baby about 6 months old, in ICU in a bed next to Ilona. His Dad was stationed in Italy, and they were brought to Landstuhl to get help for Christopher. We had the same doctors and since we shared this common bond we became close friends with Craig and Lux. Christopher seemed to be doing ok. He also had big brown eyes and a generous smile to every one. His mom Lux was from Laredo, TX so you could see the fire in his heritage. He was a fighter, and he was strong. We spent lots of time with Craig and Lux supporting each other and getting to know each other well. We all decided to take a break one evening and played card games late into the night. We actually got a moment of relief and laughed a lot that night. The next morning as I walked into ICU – I found Lux who had told us Christopher passed away a couple hours before. We were devastated by their loss. They were quickly shipped out. As God would have it – they were there for us later in all places, Texas.

Ilona spent much of her life in and out of the hospital. At about 2 months old she was able to come home to Schierstein where we lived, in a suburb of Wiesbaden. Every morning rain or shine, (or snow), we would go to see her Doctor at Wiesbaden Hospital. She was teeny, only 5 pounds at birth and only 9 pounds at 10 months old when we were asked to travel to San Antonio, Texas to converge with a group of doctors who had been meeting with doctors from around the world in Dallas who were studying this type of heart defect. Ilona had Endocardial Cushion Defect; an abnormal heart condition in which the walls separating all four chambers of the heart are poorly formed. We also learned later she had Ventricular Septal Defect and a deformed left septum and her aortic valve was deformed to the point of being almost non existent and the tissue separating the chambers of her heart were actually valve tissue. All this made it taxing on her heart, which created cardiac pulmonary edema and also affected her breathing, to top it off as she grew her enlarged heart was pressing on all her other vital organs.

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