Saturday, June 24, 2017

Just a Day

I can feel the pain in my back and legs as I hear the alarm clock waking me up. I turn the alarm off and cringe as I sit up from the pain. I look over and see that Adam is not in the bed, which for us right now, is not a good sign. I leave the bedroom and immediately find Adam curled up on the floor outside of the bathroom with a bowl. Our sweet golden retriever, Rusty is laying by him with her soft brown eyes open, as if she hasn't slept either but has stayed awake with him all night watching over him. I look at this scene and a bit of my heart cracks for the millionth time. I fall on my knees with a sigh, and give Rusty some grateful pats on the head. I gently put my hand on Adam's shoulder to wake up. He awakes with a start, and I tell him to let me help him back to the bed. I help Adam to his feet and feel a sharp pain in my back and hands, but I ignore it. As I help him back to bed, with Rusty at our heels, Adam tells me that he knows he is dehydrated. I go to get his feeding tube supplies and as he sits, we gently use his feeding tube to give him water. I then remember that we are out of Pedialyte, which helps restore electrolytes when the dehydration becomes this bad from throwing up so much. As I help Adam settle back into the bed, I quickly put on some shoes to run to the pharmacy. As I drive, I try to take calming breaths. No matter how many times I wake up to find Adam in this position, or stay up with him late into the night to help him through the illness, it never becomes easier. As I step out of the car into the pharmacy, the pain increases in my legs, but again I ignore it. I know right where the Pedialyte is, but of course they are out. I ask for help and 10 minutes later I am checking out. The cashier tells me that I have enough points saved up to get a discount. The points add up as I am constantly refilling Adam's prescriptions, or picking up new ones.

When I get home, Adam has fallen asleep and I take a sigh of relief that he is able to sleep for awhile. There are still many things to do when someone is chronically ill, and today I need to clean the bathroom, wash the sheets, dust, make sure Adam has enough medications for the next couple of weeks and finish some things from work and school. As I go to work, I can feel the pain in my back creep up into my shoulders and neck, and eventually I have to sit down and take a break. I look at my hands and see that they are swollen, which happens often when they are in pain. I think to myself that after 12 years of being in pain I would get used to it, but I don't. I get back to work, and then I hear Adam throwing up. I go into the bathroom and Rusty is sitting by Adam. I sit on the edge of the bathtub and place my hand on his back as he throws up. When he finishes, I give him some tissues to wipe his face and nose and he places his head on my lap. We sit there for a time, and I tell him that everything is going to be alright. It's going to get better. Adam brushes his teeth and then I help him back to bed again. I then go get a cool rag to place on his forehead as this helps with the nausea sometimes. Adam isn't able to eat much, but he does some formula through his feeding tube and I make a simple dinner and pray so hard that he can keep at least some of it down. We watch an episode of Psych, because we firmly believe that a Psych a day keeps the grumps away. :) Even though Adam throws up halfway through, we are still able to finish it and laugh together for a little bit.

As I help him back to bed again, I realize that my pain is at its worse for the day. Adam and I then say a prayer together. Adam prays and is so grateful to God for our blessings. Our safe, comfortable apartment, for his angel aunt and uncle that are so generous to let us live here, for Rusty and the comfort and happiness she brings to us, for the love and support of our families and loved ones, and how we feel their love and prayers. He thanks God for our car that by some miracle keeps running. He thanks God for our marriage and the support we are to one another, he thanks God for helping him through the day and for giving him the strength he needed. He then prays for each of our parents and siblings and dear friends and family members by name and for their specific needs. As he ends the prayer, I truly feel God's love for us. I feel that God is aware of us and of our suffering, individually and together. That feeling reminds me as it has almost everyday for the last 12 years that even though things are hard and painful, it does not make me forgotten. Even though I don't have the answers to why Adam is so sick, or why I am still in pain after all these years after doing absolutely everything I can to make it go away, I still can feel peace even while I ache.

Later that night, Adam is unable to sleep because of the nausea and can't fall back asleep after throwing up. I start him a warm bath, and after helping him back to bed after the bath, I rub his shoulders and neck because he pulled a muscle from throwing up. The weight of it all hits me, the crack in my heart deepens and I start to cry. Adam pulls me into his arms and talks me through my anxiety. As I calm down, I remember the feeling of peace I had earlier and reach out to it again. With Adam's incredible understanding and with God's love and watchful care I am reminded that everything will be ok. Everything will work out. As Adam helps me, my tears slow down and we are eventually able to fall asleep again.

We don't have answers yet. We don't have relief yet. But, we do have peace. We have peace because God's love is real and one day everything will be made right. And that is enough for today.



Monday, March 14, 2016

Adam is Brave


This morning Adam was throwing up blood.

He had a doctor's appointment at 12:00 and when I called to cancel, the nurse asked what was wrong. I told her that he had been throwing up blood. She asked if I was taking him to the ER. I said no. I said no because we had been down that route before, that this happens once in awhile and all he has is a tear in his esophagus from throwing up too much. All they can do at the hospital is give him fluids and anti-nausea medication, all things that I can give him here at home now. But, I assured her that if it got worse I would take him in. Thankfully, that didn't happen and I have been keeping a close watch on him and making sure he has had enough fluids all day.

Throwing up blood from a tear in the esophagus caused by throwing up too much. This has become our normal and Adam is the bravest person I know for facing it with such courage and dignity.


 :

We went to the Mayo Clinic in December with such high hopes. We were so positive we would be able to turn a corner.We squared our shoulders and took a leap of faith. After days of him be tested, poked, prodded and scanned all they could find was some abnormal blood work and MRI's, but still have no idea what it all means. At the last appointment when the neurologist was telling us there was nothing more he could do, I broke down. I could not hold it in, and the tears fell so fast. We stepped into the waiting room and that's when we sat down and cried together for a long while. At first we cried separately and then I ended up holding him and crying on his shoulder. After we pulled ourselves together, I knew we could not leave on that note. We went back to his gastroenterologist and asked to see him. He kindly fit us in right away and when he walked into the room, he gave me a hug. He said that he wanted us to know that nobody was giving up on us. Second, there were still paths that he wanted to try. While this was reassuring, our hearts were broken.

Having a broken heart at the same time as your loved one is a sacred experience. As I look back on that day, and the days that followed, I realize that as we were both in pain, we were drawing closer together. We sat down in the waiting area, waiting for the hotel shuttle to come pick us up. I wanted to run away, I wanted to just cry, I even wanted to scream, which is not like me at all. My head was buzzing and I am sure I was near a panic attack. I couldn't sit still, and as I was pacing some saving grace came to us in the form of a text from Adam's father. It said:

"Hold on to each other."

This calmed my heart. When I read it, the world stopped around me and I went and sat next to Adam, pulled his head out of his hands and held on to him tightly. This became my mantra for the next couple of months. Adam says that it calmed him as well as our hopes and expectations had been completely dashed. We began saying it to each other every so often to remind us. The best thing you can do when it is all falling apart is to hold on to the one you love the most. Hold on so tight. That is where healing came for us at this time.

"Hold on to each other."

Saving grace also came in the form of my parents driving 5 hours to come rescue us from that ordeal and taking us home to a safe place where no one could hurt us.

As Adam's health continues to struggle and as he suffers each and every day and night, he keeps his hope. This is what makes him brave. He still has hope that things will get better even though he literally spends his days unable to get out of bed completely nauseous or with a migraine, or throwing up, fighting with all his strength to not throw up, or just having enough strength to see his family for a little bit. He sees the good in the world around him and he loves others without hesitation or judgement. Even though we still have a journey ahead of us and still have tears to cry, I know that something good will come from all of this.

She Became Herself With Tears by, Caitlin Connolly

It is thanks to our God for giving us everything that we need to be at peace when everything else is chaos. It is thanks to my angel parents and siblings, Adam's angel parents and siblings and our dear friends that we know we are loved and cared for. It is thanks to our dear family members and church family that our immediate needs are taken care of. Adam and I would never be able to fully express our gratitude for these blessings.

We will never give up, and we will always hold on to each other. I hope that we all will hold on to our loved ones a little tighter as well.


Monday, September 21, 2015

Caregiving, Care Receiving and Everything in Between

According to the Merriam-Webster Dictionary, the definition of a caregiver is, "a person who gives help and protection to someone...a person who provides direct care." Synonyms include, carer, caretaker and guardian. While this is meant in a medical sense, I see it in a different context. Anyone who protects, loves, and cares for another in anyway is a caregiver. The synonym "guardian" particularly stands out to me. I can be a guardian for my husband during this time, and even though he is bed ridden and physically unable function he is still my guardian as well. He gives help and protection to me, and in that way he has become my caregiver as well.

Becoming a caregiver has stretched my soul and my heart. It has brought me to my knees countless times, and I have cried countless tears. Sometimes I feel so exhausted it feels like I can barely think or move. But, it has also brought me unspeakable peace and an assurance that caring for someone else in their time of need is the most important thing I can do right now at this time in my life. Caring for someone is a sacred thing, and it can transcend the normal everyday experience.

Being a wife and a caregiver does not mean that it is all one sided. Adam and I are still a team. It is not his illness, it is our illness that we are battling together. This is what we do to be caregivers for each other. I felt like I needed to record what it is like for us on a day to day basis.
Karen Darling
In the morning, first thing I need to do is pray. I pray for strength for the day, for patience and understanding and for peace. Mostly I pray that Adam can have some relief that day and to help me know his needs. Then I have Adam's feeding tube set up. It is a formula that I mix together with water. The bags of formula and water are then attached to the pump with the correct settings and then connected to the tube in Adam. It takes a few hours to complete the feeding, and we have to make sure he is sitting up a little bit, or it causes heartburn and acid re flux. If we have a doctor appointment that morning, we start the feeding afterwards. There are pills that Adam needs to take morning and night. We have those nifty pill dividers for each day. It really helps us keep track. There are some medications, or over the counter pain medicine if he needs it that I crush up in a pill crusher (one of the best inventions ever), mix with water and put in his tube with large syringe. I always make sure there is an extra towel and a "just in case he can't make it to the toilet in time bowel" on his bedside. After getting him settled for the day, I head to work for a few hours and try not to worry about him too much while I'm away. :) During the day there are doctors to call, or appointments to make. There are sometimes prescriptions to refill, and lines to wait in to pick up the prescriptions. Everyday his bandage on the site where his feeding tube is needs to be cleaned and changed.


After I come home in the evening, first thing I check on him, make sure the feeding finished and see if there is anything he needs right away. I love spending the evening together. He tries to move from the bed to the couch, or a chair in the kitchen and we talk if he can or watch Netflix. Some days he is too sick to move at all, and so I keep a close eye on him and put cool rags on his forehead (that helps take the edge off of migraines and nausea). Those times are the hardest, where I need to take some deep breathes and remember that I can't control everything, but he is in God's hands. The pain of watching your loved one suffer is unlike any pain I have felt before. I am learning to take the time to deal with those emotions, and remind myself that everything will be ok. I then make dinner and catch up on chores and house work or whatever Adam needs help with. I am a stress cleaner, so it helps me release my stress a little bit. :) Because Adam is bedridden, I try to wash the sheets and blankets frequently and I also keep the toilet and bathroom clean as I can because he is forced to spend so much time in there throwing up, or trying to not throw up. Depending how much much he threw up that day, or if he is feeling particularly weak we do another feeding through the feeding tube. Nights can be especially hard as it is difficult for Adam to sleep or stay asleep with the constant nausea and vomiting. I try to help him as much as I can through the night if it is a really hard night for him. Often, he pulls muscles in his back or shoulders from vomiting, so I will rub his back, neck or head, or his feet to help him relax. Sometimes, we just hold each other.
                                                                                                            Caitlin Connolly

Even though Adam can't be on his feet right now, he does the best he can to take care of me in the best way he can. When I am in a lot of pain he will take the time to rub my legs, even as sick as he is. No matter what, no matter how sick he is, he has always been there for me when I need a shoulder to cry on. He is my best friend, and has always been perfectly accepting of me. He is constantly asking what he can do for me or for others.

He always helps me work through my pain when I am struggling, and in that way he is a caregiver for me as well.
At the end of the day we always pray together. Adam always takes the time to pray for everybody! Seriously, he names and prays for so many loved ones. And he always does it with such sincerity and faith. It is amazing to me. We listen to the scriptures and often will say what we are grateful for that day.

It is all about taking it one day at a time. As a caregiver, I often need to step back and think about just what I need to do that day, and do my best to achieve it, otherwise I get too overwhelmed. Adam helps me with that. He is my caregiver. He gives love, true empathy, patience and support. Truly, it is his strength that helps me keep going, even when I feel I can't do it another day.

We are all caregivers in one way or another. Be the guardian of the one you thought of while reading this post. Caring is having faith that you are doing all you can. It is my prayer that I can always be brave enough to care with all of my heart.


Tuesday, August 18, 2015

Gratitude

There are some days that feel as if the seams of the fabric of our life are falling a part. There are some days where the sorrow, heartache and pain seem to reach the very depths of our souls. But, there is one thing that pulls those seams back together. It eases the sorrow and heals the heartache. It soothes the pain. It is gratitude, and Adam and I have found it to be a healing balm and a source of comfort. Often, before we go to sleep we list what we are grateful for that day. It really helps us keep things in perspective and helps us keep a knowledge of how blessed we really are. Here is my list of gratitude.

1. I am so grateful that the surgery Adam had to have a feeding tube place went smoothly. The recovery has been so hard, much harder than either of us expected but, the feeding tube is working well, and he finally is able to get the nutrition and calories that his bodies needs to be sustained and to start healing. Hopefully this will help him not have the severe weakness and dizziness that comes from not being able physically to keep down enough food. This has given us hope, and my words can't describe the gratitude I feel for that. 


2. I am so thankful for Adam's resilient spirit. He has not complained once, and continues to amaze me and others with his love and grateful heart. 

Vincent Van Gogh
3. We are both grateful for the dedicated team of nurses and doctors that have made this happen. We are grateful for the steady and experienced hands of the surgeon who placed the feeding tube. We are grateful for the nurse practitioner and dietitian that have made sure this is the best thing for Adam. I am grateful for the dedication and care from the home health nurses as they call to check up on Adam and their patience and careful explanation as they have shown me how to set up the feeding tube, the formula and how to administer his medication. 

4. Modern medicine is a wonder to be grateful for during this time. While we don't have all of the answers right now, we trust that they will come.

5. I am so grateful, with all of my heart for the love and support of our friends and family. There have been times when my physical strength fails, and my angel mother and angel mother in law have been there to do what I sometimes can't. My parents and sweet brother came out last week to help, and I don't know if I could have done it without them. Adam's parents and siblings have been there constantly, giving both of us the love and support we need. It is a sacred and special experience to be on the receiving end of so much love and prayers, and Adam and I are constantly touched and renewed by the strength that comes from it. Sometimes, the most powerful and moving things are ones we cannot see. We can only feel them. This is one of those times, and we are so grateful. 


6. We are grateful for our wonderful apartment, and for Adam's aunt and uncle that have been beyond generous in allowing us to live there and to work through this in such a safe and comfortable place. Adam and I are grateful for them every day. We are grateful for a comfortable bed, a place where Adam can lay and heal and rest. We are grateful for his medicines, for pharmacies, for syringes, for pill crushers, essential oils, for the feeding pump and IV pole, for the formula that will give his body what he needs.

7. I am so grateful for music, a constant refuge and source of comfort for me. I am grateful for Disney movies, for the TV show Psych that we watch and can laugh and forget our problems for a minute. :)

7. There is peace knowing that God lives, that He is our loving Heavenly Father. I am so grateful that I feel peace when I pray. I am talking about lasting peace, it is not temporary, it is not fleeting. It is real, and it comes from Him who loves us. We are both grateful for the knowledge that God's timing it perfect, and that He is watching over us. We know that we are not alone. It is my knowledge of these things that has allowed me to be ok, and to be able to keep going everyday.

8. I am so grateful for marriage. That Adam and I can become one, and that we can work through this together. I know that we are stronger together than we could ever be a part. I am grateful that we can laugh and cry together. There is a healing that comes from loving someone with everything inside you, and I am grateful for that. 

It is not always easy, but recognizing and being grateful for the little things brings peace when everything around says otherwise. 

Nicoletta Thomas Caravia
"We can choose to be grateful, no matter what. This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer. When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.

Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges.

This is not a gratitude of the lips but of the soul. It is a gratitude that heals the heart and expands the mind.True gratitude is an expression of hope...It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will."


-Dieter F. Uchtdorf

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.










 

Wednesday, September 18, 2013

If My Heart Was A House, You'd Be Home

 Well. I just have to blog about the best man, best time, best love, best experience, best memories, best everything, best day ever. I just have to. Because it's just the best ever.



Throughout the years, I know that my illness has played a profound role in how others see me. Sometimes, in a not so good way. That can be hard and painful. If you have ever felt that, please know that you are not alone. Growing up, I worried so much that I would not ever be able to find someone that could accept that part of me. My illness is a part of me that is often times still hard for me to swallow, let alone another person. I always worried that I would never find someone who would love that part of me. There have been points of my illness where I have felt real loneliness, a real loneliness in my physical pain and struggle. I have had real experiences in the past where as soon as a boy found out about my illness, I never hear from him again. That created a lot of heartache, and I put up lots of walls. Then one day, someone walked into my life that could help me take those walls down, and heal that heartache and loneliness. And it was in a way that I never even dreamed or ever expected.


Once upon a time, I wanted with all my heart to serve a mission. I am a member of the Church of Jesus Christ of Latter Day Saints, and ever since I was a little girl, I dreamed of serving as a missionary. I grew up watching missionaries teach people in my family's home about Jesus Christ and His Gospel. I saw the way that it brought light, hope and healing into their lives and I wanted to share that same light, hope and healing that had entered my own life because of the Gospel of Jesus Christ. When I turned old enough to begin the application process, I had just come out of a very difficult year and a half of my illness. The chronic pain and other issues were still an everyday concern, but I was so determined to go and serve. I wanted it more than any other goal or dream at that time. When I applied at first, the Church asked me to do a three month trial mission before the officially sent me out. They wanted to make sure I could physically handle the schedule and rigors of missionary work, because it is real work. My illness was a concern, but I was more concerned about accomplishing my dream and serving the Lord.



I met Adam my first day as a missionary. He was serving as a missionary in the Missouri Independence mission. Time went on, and eventually he found out about my illness. When he found out about it, he came up to me at a meeting one day and said, "Sister Graves, I know that it is possible for you to serve a mission despite your illness, because I have a chronic illness too and the Lord helps me do it everyday." Needless to say, his example inspired me. For the first time in my life I didn't feel so alone. There was someone who could really understand what it is like being sick everyday. I mean, truly, completely understand. He gave me a lot of strength during that time, and helped me understand that with God, all things are possible. I was able to receive an official mission call to the Washington Seattle Mission, and treasured every moment I had live my dream and serve a mission. It was the hardest, most soul stretching experience, yet it is a sacred treasure in my heart because the growth I felt spiritually, the miracles I saw everyday, the people I met that were able to draw closer to Jesus Christ. I will always treasure the helping hands from heaven that I felt each day that carried me, guided me, and pushed me along when I lacked the physical strength. Some of the greatest blessings of my life are a direct result from my mission, and Adam is one of them. 

Adam's illness began when he was a young teenager, like me. He has battled his illness so bravely for a little over ten years. I stand amazed everyday at his strength, his determination and his courage. Never once have I heard him complain about his illness. He has an illness called eosinophilic esophagitis. It is an inflammatory disease of the esophagus, and causes severe nausea, vomiting, stomach spasms, and dysphagia (swallowing problems). He is my hero in every way. You would never know the battle that he fights everyday just by looking at him, because he is so full of light, strength, consideration for others and pure kindness. Despite his illness, he is constantly looking out for others and serving them. He has a special kindness and pure spiritual and mental strength that permeate his every action. He is steady and true, and he has captured my heart. He picked it up off the ground and has mended the cracks I thought could never be healed. It's as if he knows what my heart sounds like from the inside. He fills my soul to bursting with joy and hope.
 We quickly became best of friends after our missions.

When we first started dating, I was very ill. My pain was high everyday. My back, arms, legs and neck ached constantly and my stomach was in severe pain as well. I had just moved back to Utah after living in Missouri with my family for a time, recovering from my mission. I was still in a hard place physically. These were the first moments we were spending together, and they were spent with him coming to sit with me day after day to take care of me. He would bring me food, watch Disney movies with me, listen to music with me, talk with me, make me laugh, and he would just sit there and hold me if I needed to just cry and breathe through the pain. He would wipe away my tears and just love me the way I was. He would and still is helping me love myself just the way I am. Chronic pain and all.

Falling in love and having the blessing to marry this choice man has been the most beautiful spiritual and physical experience of my life. He brings me closer to heaven. We have had our ups and downs with Adam's health as well. There are some days where all I can do is hold him and pray that he can feel better soon. It is a continual learning process to be able to cope with his illness, and my own. Adam is learning the same thing. It is beautiful strengthening process. We need to rely on each other each day, and through the hard nights. Adam is always there for me. Even when he is sicker, and I'm the one struggling, he reaches out to me and is my safe haven. I have seen God's hand in our relationship from the beginning, and I know that His hand will always be in it.

If you have a loved one who has a chronic illness, I know it is so hard to watch them suffer. You are not alone. It is heart wrenching at times. Also know that your love and care means more to them than words can express. Please, be patient with them, for they are fighting a hard battle. Also, know that your love can be enough.

If you are battling a chronic illness, be patient with your loved ones, for they are fighting a hard battle having to see you suffer. They feel it deeply, and no matter how alone you feel, you are loved. Please remember that. You don't have to battle your illness alone. You are still good, beautiful, strong and amazing even with your illness. You are loved more than you know.


I feel so blessed to have Adam. One who truly understands what my illness and pain can do. I'm not fighting my illness alone, and never will have to fight it alone. Not only does he come to my rescue, but we can fight the battles together. Even among these challenging times of dealing with our individual illnesses, we can have pure joy, happiness, laughter and hope! He will never be fighting alone either, because guaranteed I will be there at his side.To quote one of my favorite bands Mae, "All that I've wanted is standing in front of me, all that I need that's for sure. You came to my room when I was sick and you made me yours. All you could need or expect it will come from me, no one will ever love you more. You're in my world for good and our love will always be the cure."

 Photography by: The amazing Amanda Castleberry!

Friday, May 24, 2013

Lights and Angels Will Guide You Home

This is a very special post. There is so much in my heart, and so much I feel so deeply and so much I want to share! First, I must begin with a miracle that happened just last night. This miracle needs to be shared.

First, I know that there are angels hiding in the motions, actions, thoughts, and love of humans. Especially the humans that love us the most. To quote one of my favorite songs, "There are angels hiding in the bones of humans...helping all these miracles along."


I received one most beautiful and touching gifts ever given yesterday by my dear angel friend and sister, Emily Dance Fish. She choreographed a dance that tells the story of my illness and pain. She and her amazing angel dancers kept it a secret from me until the performance last night! When I found out I began to cry. My heart was bursting. When the dance started, it was like I had entered a dream. It was so surreal and beautiful. I wept tears of healing and hope. Dance is a very special part of my heart and who I am. It has been a grieving process for me as I have felt my body weaken and to feel pain when I am moving and dancing, doing something that I love most in this world. When I watched that dance it was as if my spirit was dancing with them. It didn't matter that I was in pain, because I felt free. There are moments and movements in this dance that tap into my spirit and heart so deeply that it takes my breath away. This dance is one of the most beautiful things I have ever seen. I feel like that if someone hooked up a projector to my heart, the movement from this dance is what I would see. It also is to a song that is so special to me, I have no words to describe the inspiration it gives. The song is "Fix You" by Coldplay.



Sometimes I feel like there are certain songs or lyrics that have been pulled straight out of my heart and played from it's strings. This song is one of those songs. These lyrics are perfect for all who struggle with chronic illness. They are perfect for anyone who has struggle. That's all of us.


There are two versions, one from another competition they performed it at and the performance last night. I wanted to show both, because one shows off the choreography better and one shows the lighting better.  Click here for one that shows a better quality of the choreography. :)


Emily later explained to me that the two dancers in red represent the illness. They are not portrayed as evil or bad. Rather an aching, but necessary part of my journey and who I am. My illness causes pain, not only in my hands, legs, back, stomach and arms, but also in my heart. They dance and move with me, but they are not who I really am. That is true for all of us. I want to make that clear. Our trials and pain, whatever forms or shapes or hardness they come in do not have to be evil, nor do they have to overwhelm our entire life. They can be tools for us to grow. As much grief as my illness has caused me, it also has been one of the greatest means for me to see the true beauties in life, and see what is truly important. In that sense, I am grateful for my illness. That can be true for all of us. There can be a balance of working through the challenge, yet still being truly happy, laughing and loving and experiencing true joy and peace. Yes, there are days when the burdens can be so heavy that they drag and push us down, but we have the strength within us to stand up again. They can reach us to our deepest parts and shake us to our very core, but we have angels and help to protect us and guide us through. We have angels around us to help heal us and stand up again. We have angels to help us when we are weak and feel we can't take one more step. They can lift us up and help us focus our gaze towards hope, light and heaven.

We may be marked in some way by the challenges we deal with. The red sash in the dance represents that. But, in the end, we can carry on while carrying the very things that hurt us. Our challenges can be the very thing that make us the best we can be. I believe and know that the hurt and problems we deal with will not last forever because of the reality and hope of Jesus Christ and because no matter what challenges we face, we can be happy and dance after our dreams. I must remember that.

Sometimes it may feel like we are constantly being pushed and pulled, tossed, turned and too bruised and broken to be fixed anymore. I know that we are made out of much deeper stuff than illness, and the struggles that come our way. Yet, it is our struggles that pull that deep stuff out of us for us to see and learn and grow from. It is an amazing process. I have so much to learn, and I am so grateful for the little and big experiences that give me some healing and help me try again tomorrow.


Awhile ago someone asked me what it was like to have to give up on my dreams of dancing and singing because of my illness. I told her that I had not given them up and that there was no way I was ever going to give up on those dreams. I feel so weak and worthless sometimes, and this dance has renewed my hope and fight to keep chasing after my dreams, goals and the quality of life that I want to live. I hope that it does the same for you.

There are lights to guide us home. There are those around us who yearn to fix us, and we yearn to fix them. I think that is one of the main reasons for challenges in our lives, so that we can learn how to help fix one another and be lights to each other. As the song sings, "Tears stream, down your face, when you lose something you cannot replace. Tears stream, down your face, and I will try to fix you."

I hope that we all can take the time to thank the "angels" in our lives that help us and lift us up beyond our struggles.


Thank you to these dancing angels. Emily, Shaunie, Brighton, Aisha, Aimee, Janessa, Magaly and Dulcee, you have given me a priceless gift. I want you to know that I will always, always treasure you and this dance. When I am hurting, I will remember this, and it will help me keep going. I hope that it does the same for you. What a bright and beautiful light you have brought into my life. There are no words to express. Keep dancing and inspiring. Each of you are amazing, graceful, and beyond sweet. You are all exquisite. Thank you for touching my heart. Know that I am thanking God for you in my prayers I know that He will bless you. I love you all with all my heart!






Ems, you have given me a most precious and beautiful gift. Your work and heart are amazing. You are my angel. From the beginning, you have brought joy, love, hope and peace into my life. Thank you for carrying me, and for always helping me see myself past my illness. I just don't have the words to express just how much this means to me. I love you forever.

Thank you to all my family, friends and angels who continuously love and carry me. I weep tears of gratitude as I write this for you. Thank you for being my lights and for helping me experience true joy and love on our journeys together. You all continue to amaze and inspire me.


I am filled to the brim and overflowing still. Sending you all my love.