Sheila Sims Iding
Some of you will read the next paragraphs and not truly understand. Actually, that is my hope. I hope you do not know first hand what I am going to say. I hope you have no clue the impact of the words. I hope and pray the following words are foreign to you.
We were at the University of Minnesota hospital for a diagnostic work up. We were actually with the kidney doctor when the pulmonary doctor walked in. I won’t forget the look on his face…ever. I won’t forget the walk to his office…ever. I won’t forget sitting across the desk from him, holding my little son in one hand and my sister-in-law’s hand with the other. She is a nurse and she knew in her medical heart this wasn’t good. I am mom and I knew in my medically ignorant maternal heart, this wasn’t good.
When you sit across the desk from a doctor and he tells you your son has an incurable disease it takes your breath away. Almost immediately you can’t breathe. When he says his life expectancy is only 15 years old, it takes your thoughts away. Almost immediately, you can’t think. When he says “I’m am not going to sugar coat this. He was born with CF and he will die from it.” It takes your dreams away. Almost immediately you crumble. And almost immediately you have no idea how you will move on from this…but you do.
You hold on to a little 5 year old squirming in your lap who has no idea the impact of those words and you try to breathe again, think again and rescue dreams again as your hold on him becomes tighter, stronger and more purposeful than ever. You hold on like you never want to let go…even at age 15. And you wonder what words you will use to call home to a father waiting the results of a simple chest x-ray. You wonder about Tim who at age 3 has had more infections than Joey. And you wonder about Adam who at almost age 2 has had more infections than both of them put together…you realize you are now fighting for three little lives…not just one.
That is when it all becomes a blur. That is when it is becomes surreal…unreal…and too real all at the same moment. The words of the doctors don’t sink in anymore because your mind is devastated, your heart is crushed and your spirit is broken. They hand you papers and books and information and appointments and prescriptions but once they have handed you the diagnosis the material handouts are beyond comprehension. And you immediately know, this is beyond you, beyond a little 5 year old now fighting for his life…beyond a family already strong from adversity.
So as the day ends…THE day…you hold a little 5 year old the entire night and you don’t sleep…you pray. And you ask your dad to watch over you from heaven. You ask God, your other Father, for strength for the journey that began the moment you sat across the desk from that doctor. And then you spend the rest of the night knowing, believing and hoping that God will provide. And He does. If I am honest I will say, I didn’t know it then. I didn’t even know it the next morning or the next year but I believe now that God put St. Raphael, patron saint of doctors and medicine, on watch over a newly diagnosed 5 year old, and his brothers and his family and his very life.
I know now that St. Raphael was there when we sat across the desk from that doctor and I know now that it wasn’t accidental that my sister-in-law was with me.
And when they did the definitive test looking for a score of more than 60, St. Raphael was there as the machine displayed a number over 70. A little 5 year old laughed at how fast that number came up. A young mother cried for the very same reason.
St. Raphael was there when Fr. Brian helped Pat in Lansing pack up two younger brothers to come to the hospital in Minnesota for their own testing.
St. Raphael was there when we got Tim’s diagnosis with a score over 80 and a new “player” in Team Iding vs. CF.
St. Raphael was really there when Adam’s number came in under 10. Really? The one with the most infections did not have CF. It felt like more than an answered prayer. It felt like a miracle…just when we needed one most.
St. Raphael was there as we gathered doctors’ appointments, CF meds, breathing machines and more information than we ever wanted to know. Turns out ignorance really is bliss. We are past bliss now.
St. Raphael was there on return visits to University of Minnesota hospital including one on Joey’s birthday which we celebrated on an airplane with a candle and a packet of pretzels…and a surprise balloon bouquet waiting for him in Minnesota from his first grade teacher.
St. Raphael was there when we packed up three little boys and suitcases and wishes and traveled to the CF Clinic in North Carolina searching for the best answers…searching for the best hope.
St. Raphael was there in Denver, Colorado that whole summer Joey was in the hospital trying to solve his allergic reactions to the very medicines he needed to stay alive to 15…and beyond. That whole summer in that damn hospital so alone and so far from home,so far from family, so far from hope…St. Raphael sat with me.
St. Raphael was there when Pat refused to dip into the college funds to help defray these horrible medical costs. We had college funds for all the boys and damn it, and to hell with 15 year old life expectancies. They were going to college and we were keeping those funds in tact. (And all those years later when Joey got his soccer scholarship, I wonder if St. Raphael smiled.)
St. Raphael was there for all the tests, hospitalizations and surgeries that came so fast and furious I never unpacked my hospital suitcase. Like an expectant mother it was just on my dresser waiting for “the time” when the medicines didn’t work and the x-rays were positive…again.
St. Raphael was there for a little 2 year old brother who couldn’t understand why mommy left him all the time…especially for one whole summer...especially when he was still fighting all those infections himself.
St. Raphael was there for the hundreds of pills each day all the breathing treatments twice a day…and three times a day…and as it got worse…four times a day. Each treatment and pounding took almost an hour, it hurt ribs and hurt hope. Treatments became my new job. I was on the clock…and so were Pat and Suzy who became my treatment partners for when I needed a break from my “job”.
St. Raphael was there when Fr. Brian returned from his mission in Africa to be at Joey's First Communion. Like a faithful Godfather, he wanted to be there for this sacrament. And like a faithful priest, Fr. Brian blessed Joey with the Anointing of the Sick right before that special mass. And...St. Raphael was there.
St. Raphael was there when the Lansing CF doctor messed up one more time and one more time and one more time. When he misread x-rays and left Tim untreated too long…the pediatrician sent us to U of M CF Center. That was truly divine intervention.
St. Raphael was there as U of M became part of Team Iding…proud Spartan fans now appreciated the a-maizing care of the maize and blue.
St. Raphael was there as we discovered Joey couldn’t take the CF meds for breathing treatments because it caused serum sickness. His body treated the medicines like they were a poison. The only medicine he could take was his enzymes because they were “natural”. The one medicine he immediately needed was the only medicine he could take. Tell me God and St. Raphael didn’t have a hand in that one?
St. Raphael was there as Tim was so sick he had hospitalizations two months in a row. And St. Raphael stood with him as, just released from the hospital, Tim gave a speech for a school contest about "What I Want to Be When I Grow Up?" He still had an IV in his arm and a dream of being a priest in his heart.
St. Raphael was there as Tim got worse and worse and needed more hospitalizations. And St. Raphael was there as Tim took up running and got better and better. He never won a race in his cross country meets or track meets. But St. Raphael knew he was winning a more courageous and important battle.
St. Raphael was there as we celebrated each birthday in a BIG way. And he was there as the very day they each turned 15...and then 16. (Take that, CF!!!)
St. Raphael was there as we discovered that the letters CF didn’t carry a life expectancy anymore and would now stand for continuous fighter..not cystic fibrosis.
St. Raphael was there as Joey played soccer year round and PFT’s (Pulmonary function tests) started to get higher again at the very age they are suppose to be failing. He had better PFT’s than his doctors. Thank you St. Raphael.
St. Raphael was really there as the more they fought the stronger they got. He was there as Tim gained weight back and Joey gained strength in running a soccer field. He was there with those U of M doctors wrote in Joey’s chart “soccer is his best medicine”. He still couldn’t take the breathing treatment meds so he used his God-given talent to play soccer at an elite level. How could this not have been God working in his life?
St. Raphael was there each day as God blessed them with a strong pain tolerance, a stronger determination and the strongest faith.
St. Raphael was there when Joey played soccer for University of Michigan in the shadow of the U of M medical health center. And St. Raphael was there as his U of M doctors stood on the sidelines to watch their Wolverine run a soccer field and run and run.
St. Raphael was there as they led such normal lives that they were retested for CF just to make sure they had it. And they did. And they do. But this new diagnosis did have the same impact as the first one…because of St. Raphael. And it didn’t have a life expectancy any more.
St. Raphael was there as Tim left to live in China where the pollution is some of the world’s worse and there are no CF doctors or CF medicines. And he stays “healthy”. A missionary half way around with the world living in pollution doing God’s work…Hello, St. Raphael!!!
St. Raphael was there as Joey ran his marathon and his ½ marathons and all his races just to be a continuous fighter.
St. Raphael was there on December 29th when Joey and Addie promised for better or worse…in sickness and in health…forever.
We will travel to CF clinic today’s for Tim’s appointment. I never take for granted that his numbers will be great, his tests will be greater and his health even greater than that. I have been blind sided with bad news before so I never get confident or comfortable...I just get hopeful.
I never forget that maybe in that same waiting room today a CF mom will not get the same news we have been so blessed to get these past years. I know not all continuous fighters are so lucky.
And…I will always be grateful and comforted that whatever happens today St. Raphael will watch over tests, doctors, medicines and a missionary praying to be strong enough to do God’s work in China. I know it’s not by accident that Joey and Tim have come so far from being so damn sick to being the greatest enemy CF has ever known.
I know that God has had a hand in this and from that cold February day in 1986 until now St. Raphael has been with them on their CF journeys. I know today that St. Raphael will sit with Tim and I realize the truth is…St. Raphael has been there all along.