Tuesday, July 7, 2015

The Story of Us

 It has been very hard for me to write about what Adam and I have been going through in the last part of our journey. With the challenges there have been many joys though. There is always more good than bad. There is always more joy to be found than pain. I think I am just going to open my heart up and share our story. Adam's story and strength need to be shared.

Adam has a rare disease in his esophagus called Esinophilic Esophagitis. It is a allergic inflammatory condition of the esophagus. Symptoms include difficulty swallowing, food impaction, heartburn, pain, nausea, vomiting and other GI upsets. He has had it since he was 13 years old. He has been bed ridden since we were married in July of 2013. He suffers with severe chronic nausea and vomiting. It is very difficult for him to keep down any food. Dehydration is a problem, so he has nutritional IV's and medicine here at home. We have wonderful nurses and doctors that work with us. He recently had a PICC line put it, which is a more permanent IV that allows Adam to receive much of his treatment at home. The suffering he experiences is indescribable. The nausea just overwhelms him, and often the vomiting is so violent that he throws up blood or pulls muscles in his neck or back. Sometimes, I am able to sit with him as he throws up and put my hand on his back, to be there for him. But, sometimes it is just too hard for me to watch him suffer. We are both grateful that I am not a sympathetic puker! :) The vomiting happens multiple times a day. Sometimes it eventually turns into dry heaving, and sometimes he feels like he can't leave sitting in front of the toilet for up to a hour even. It is times like this when we are so grateful for his PICC line and Intermountain Home Health that allows me to set up his IV fluids to help with dehydration, and also it allows us to give him anti-nausea medication through the IV that helps take the edge off, even just a little bit.

Adam also has some food allergies that tie into the Esinophilic Esophagitis. He is allergic to soy, corn and milk and is gluten free along with myself. It has been such a growing experience for me to learn how to cook and provide meals that are in accordance with his food allergies. I have learned so much in that regard, and I assure you that it is possible to have delicious and healthy meals despite having food allergies!

When we fell in love, it was the most natural and easy experience of my life. It was easy to know that he was my best friend, that we were meant to be together. I knew when we were married that we would have our share of challenges. But, there was no way I could comprehend what was coming for us. Because we had each struggled with chronic illness, we had a mutual understanding and we had true empathy for each other. I am going to be completely honest, the last two years have been a bit of a blur, late nights, hard mornings, doctor appointments, hospital visits, procedures, IV's and giving as much love as I possibly can each and every day.

This painting is by the amazing Caitlin Connolly. It is entitled "They Climbed A Very Small Mountain Together." For me, it perfectly depicts the mountain Adam and I climb together every day.

It wasn't till about a year ago that I realized that I had become my husband's caregiver. A word and a title that has such a deep and special meaning to me personally. I cry tears mixed with an aching and a reverence at the same time when I think about being Adam's caregiver. I have realized that to be able to care for someone and their physical needs, to do things for them that they cannot do for themselves is sacred and special. I have also realized that in our situation, the more love and patience I give, the more inner peace I have in my heart and my mind. I have been able to have lasting peace despite having this immovable weight on my heart, mind and body.

Adam is the most resilient person I know. He is the strongest person I know. I have never seen someone endure such great suffering, and yet he is unbroken. Despite his great personal suffering, he cares so deeply about others and being there for them. Despite feeling like he is wasting away, he will smile and talk to you as if nothing is wrong and that the only thing in the world that matters to him is you. He has been an incredible example to me of accepting God's will and enduring well, one day at a time.

In sickness and in health has become indescribably meaningful for Adam and I. It is because of the promises that we have made to each other, and to God that we are able to be at peace and still have joy in our situation. There have been tear filled days, sleepless nights, and stress and anxiety and pain and grief beyond anything than either of us have experienced before, and I don't know how much longer they will continue. But, I do know that as long as we have each other and the Lord we will be ok.

The other day we just held each other and cried. That has happened more than once. I am so grateful to Adam for his strength. He is my comfort, and he is always there for me. I know with everything inside me that the suffering we both have experienced is not pointless. It is poignant, soul moving, harrowing and heart wrenching, but never pointless and never without hope. It is full of light and love. And that means we will be okay. We will be more than okay.