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Crohns Disease

Even Here

My Faith was tested. It was pushed to the limits. I have never felt so helpless, overwhelmed and unprepared in my life. If it could go wrong, it had. 2019 was trying to kill me I was sure.It was trying to suck the life, Joy and Faith right out of me. Somehow, it didn’t. It made my Faith and my Joy stronger. Even Here, in the deepest, darkest days, Even here, I wasn’t alone.

Brett was admitted to the hospital August 4th. After a summer of sickness, and E.R. visits, we were prepping for his colonoscopy. My worst fears came true. As Brett began to vomit blood, I screamed for my husband to call 911. The tests confirmed Severe Crohn’s disease, a stricture blockage and ulcers in his esophagus. He was as sick as I had ever seen anyone. But it was different, he was MY Son, and I was helpless. I couldn’t fix him. He wouldn’t let me leave. So I stayed for almost all of his 14 days in the hospital. He wanted the room dark, blinds drawn, t.v. on E.S.P.N. ( he never watches sports) on mute, for 14 days. I had brought my bible and journal. So I spent time finding comfort in the Word. I was worried sick about Brett. They wanted to transfer him to a teaching hospital for possible surgery. I once again had to close my salon so I could be with him.( By the month of August I had shut the salon down a total of  almost 4 months. Two months for my broken arm, two weeks and a few days for when my parents were hospitalized and put into nursing homes and now this. ) Most days were spent quietly with Brett, while my husband worked.  My husband would come as soon as he could get off of work each day. But I felt so alone, in the muted darkened room. I had to reach up for help.

 

When the doctor names the pain you feel
And the air around you changes
When you don’t know what is coming next
You’re afraid to turn the pages
When the answers don’t give you relief
And they only bring more questions
When you wish that you could run away
But you don’t know what direction
There’s no waking up from this a bad dream
There’s no way to stop a slow motion emergency
Even here
In the unknown
Even now
You are not alone.   JJ Heller
 On the 8th day in the hospital, Brett was going to be transferred an hr away. I would go with him, in the ambulance, and Mark would join us when he could. That day also happened to be our 30th wedding anniversary. Earlier in the year we had booked a cute little cabin on the water for a get a way to celebrate it. As the summer went on we knew it wouldn’t happen, so we canceled it. I never thought I would end up spending it like this. The transfer was taking longer than expected. I was tired and weary and afraid for Brett.  My husband and I ended up saying some cross words to each other and in the midst of it he told me the company he had worked for 15 years would be closing their doors at the end of August. I felt the air leave my body.I stood still. How could this be happening. I know in that moment God took over. I felt a peace and calm, and I knew I needed to be there for Mark. I knew we would be okay. What I didn’t know, was that Mark had found  out about the job loss the day Brett was admitted to the hospital but wanted to spare me the stress. He knew I was beside myself over worry with Brett. So he took that burden away. I feel so badly he felt he had to. When the transfer was finally happening, I walked down one hallway with Brett on a stretcher and the paramedics and Mark walked the other way with the nurses. I turned, and quietly whispered “Happy Anniversary” to him as tears poured down my face. The nurses stopped in their tracks. These sweet women who had comforted Brett for 8 days were now comforting us. Mark came and gave me a quick hug and we said our goodbyes. I knew we were heading into so many unknowns, but I knew Who was going before me.
  Find me in the River
Find me on my knees
I’ve walked against the water
Now I’m waiting if you please
We didn’t count on suffering
We didn’t count on pain
But if there are blessings in the valley
Then in the River I will wait.   (Find me in the River by Delirious)
 Brett was transferred to one of the best hospitals in the country and got amazing care. We were close to family there for support, food and a place to rest our weary bones.  They ran more tests and confirmed the severity of Brett’s condition and even added more to it. Brett was diagnosed with Severe Fistulizing Crohn’s Disease. Which the Dr. said was good news bad news. The bad news was obvious, the good news was that it is almost a guarantee for insurance approval for Remicade. Remicade is a medication administered via infusion to try to bring on remission. I felt relief and fear all at once. But this is what I had spent all summer praying for. Answers and a plan. Just give me a plan. I live and die by a schedule, a calendar and a plan.  This year had thrown all of that to the wind. I knew God was teaching me, His schedule, His calendar, His plan. I need only be still. So after two weeks in the hospital we were going home. A bag full of prescriptions and a plan. He was quickly approved for the treatment and he started them 3 weeks later on my 50th birthday. Honestly the best present I ever could have.
I had been feeling sad about my birthday, but not for the typical reasons. I was sad because my mom couldn’t remember it. She has dementia, so I knew eventually it was coming, her forgetting important things, but I wasn’t prepared. I was born on their 16th wedding anniversary, so she always had a speech she gave to people about me. ” This is my baby daughter Mary, she is the 6th child, 6lbs 6 oz. on our 16th wedding anniversary.” She literally said this for years, to any friend of hers I was meeting for the first time. So when the days were drawing closer to our special day, I would ask her “Mom, do you know what day is coming? “No”. she would say. I would tell her it was her anniversary, then ask her what else happened on their 16th anniversary. ” I don’t know unless it was something special.”  Gut punch. Every time. But I kept asking, because I just needed my mom. I would quietly say, “It was me mom, I was born on your anniversary.” So to have the distraction of Brett beginning his treatment was exactly what I needed.

Exodus 14:14

14 The Lord will fight for you; you need only to be still.

As difficult as it was on us to have my husband lose his job, I also feel it was Gods perfect timing. I needed him home, we all did. We had been through so much this year, we were so overwhelmed, so we all needed the break. The lord is faithful and He provides. We had savings, and I was back at work. Mark was able to be home with Brett in the early days of his treatment. I could breathe easier knowing he was there. But then the rains came…the flooding rains. Our area was hit with over 7 inches, and we had a leak in our roof. Of course we did. I actually laughed, because, why not? I mean what else could happen, wait don’t answer that. So 13 grand later we are getting a new roof. ( Our second new roof this year as we had to put a new roof on the salon building after the tornado damaged it. No, I am not kidding). And God is still faithful. He never said we wouldn’t suffer, that wouldn’t have trials. He simply asked us to lean on Him. So I do. Every morning, with my coffee, I sit quietly with my bible, my journal and my devotional. And I thank God for getting us through. For the patience He is helping me learn when things don’t go my way on my time.I am learning I can’t and don’t control everything. Those were my lessons I needed to learn. My kids always tease me about how often I ask them if they are okay, if everything is alright. It is a habit. While Brett was so sick, I would probably ask him 40 times a day. I was so worried I would miss something. Every time the poor kid entered the room I would grill him. I am working hard to let that go too. Brett’s therapist mentioned that maybe I could try to only ask a few times a day. So I am trying. I bite my tongue, sometimes it works.

 

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2

 

As I sit quietly here tonight, I am in awe of the work God has done for my family this year. This year filled with trials and tribulations. God is good. Brett is doing amazing, he has gained over 30 lbs back. He smiles and cracks jokes again. Mark starts his new job tomorrow. It was such a blessing having him home. He completed almost every honey do list I had. He was here for Brett when he needed him most. And for me. And I have a peace and calm I haven’t had in a long time. A clarity to see things how they really are. Each night when I lay my head to the pillow, I say “Help me Jesus.” He hears our prayers.

Even here.

 

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Another New Normal.

Two years. We started this journey two years ago. Doctor appointments, tests, nurses. Two years of googling symptoms, of thinking I could cure him myself. Two damn years of worry, and fear. Today, I exhaled.

  My son Brett, started losing weight. Slowly at first. Enough to notice. Of my four sons, he was my “husky” one. So 20 lbs at first wasn’t alarming. It was more a wonder. Has he stopped just shoving food in his mouth, not caring what it is? Is he starting to control some of his oral fixations? Having autism, food for him is comfort. Certain foods, more than others. Anyone in the autism community knows all about  the chicken nuggets and bacon obsession. So could he be maturing?  Not wanting to miss anything, we made an appointment.

The Dr. Brett saw for years had passed away, so we would be seeing a new one. I was leery as Brett doesn’t do well with Dr.’s or lab work, or anything related. His old Dr. understood him. Knew how to talk to him, to get him to explain his symptoms. I was hopeful we would be lucky twice. As soon as we left his office, I had a gut feeling. That nagging feeling that this wasn’t the Dr. he needed. He seemed to blow us off, told us not to worry, his metabolism was probably changing. I so badly wanted to believe it. So I left the office, praying he was right. Brett also had a rash on his chest that wouldn’t clear up, he was not worried on that either. He said he would do some labs and get back to us.  When nothing showed up, I should’ve been happy. I wasn’t . I knew there was something wrong. But I did nothing. I let my fear of ruffling feathers, of making a scene, of using my voice stop me.

Over the next year we made multiple trips to the Dr. They ran more lab tests, but nothing further. Because he is on disability, and has long term care funding, he has a personal nurse, She would come often to monitor him, check his BMI. She had him drink ensure. He was now down 40 lbs. We were doing everything we could think of. Everything. I am so mad at myself. Furious. I should’ve marched in there, somewhere, and had a sit in. I should’ve been the mom in Terms of Endearment, when she demands they give her daughter the medicine. I should’ve screamed. I couldn’t find my voice. I will never forgive myself for that.

During all this time, my life was in a tailspin. My parents are elderly and failing. At the same time. So my siblings and I had to place them in a nursing home, sell their home and grieve all that was. My head was somewhere else. I stopped fixating on Brett, I had so many irons in the fire. I had fallen and broken my wrist so was off work for 2 months. I was worried about bills. I lost focus. It happens, I know. But as a special needs mom, there is this saying, ” I can’t die, like ever.”  It means that he will need me, us, forever. There is no moving out, no getting married. I dropped the ball.

On June 1st, Brett got sick. We thought it was a 24 hr bug. At least that is how it presented itself. He wanted me to sleep on the couch with him. To watch over him. Like I did when he was a child. As quickly as it came, it was gone.  Until Fathers Day morning at 4 a.m., when it came back. I asked if he was in pain. He said yes. I asked if he wanted to go to the hospital. Surprisingly, he said yes.  Thank God he did. He found his voice that day.

I am incredibly grateful for the NP he saw in the E.R. . As usual when we go into unfamiliar situations, I will whisper “he has autism” to whomever has to interact with him. It matters. It changes how he reacts to them, based on how they speak to him. She Listened to him, and to my husband and I. She showed concern and compassion. She immediately ordered a series of tests. Including a CT Scan and an ultrasound. For the first time in 2 years, I felt heard! After several hours, she came back in to tell us.  She sat down next to Brett, looked him in the eye, and said “I think we figured out why you’ve lost 60 lbs. You have Crohn’s Disease. I was simultaneously relieved and panicked.  Brett being Brett looked at her and asked ” Is it curable or is it like an STD?” Oh how we needed the levity. She laughed and then honestly told him ” It isn’t curable. Our goal is remission.” As hard as it was to hear, I was forever grateful. I looked at her and just smiled. I was crying inside. I was angry at myself. But I was happy we at least had the start of an answer.

Since June 17th, we have had many appointments. We have had many setbacks. We have made emergency calls to the specialists. There is more medication than I can keep track of. Today, we had a very big scare, and we ended back at the hospital. But in the end we were put at ease. He has more testing coming up in two weeks, where they will determine what medications will hopefully put him into remission, because right now he is in a flare, a serious one. My husband and I are stressed beyond limits. People tell me I look tired. I am. Not sleeping from regret and worry will do that to a gal. We truly live minute to minute. That is how quickly this disease acts on him. And we live in this new normal. A zombie like state. I hover over him, picking up his every signal only I can decipher.  We hope for good news with every new test they run. We pray what he eats stays down and gets absorbed. He is severely under weight, anemic and tired.  But he is still Brett. He still says highly inappropriate things, things that make us laugh.  He spends more time with us now, which is new, out of fear I suppose. He is scared, so we are his safe place to fall.

I have relied heavily on my faith in Jesus. For comfort for Brett, for peaceful nights rest for him as he struggles in pain or nausea. I have prayed for patience and grace for myself, so I don’t lash out at others around me, because there is a tornado inside me. Calm, I pray for calm. In my mind as it races and jumps ahead to years my husband and I are older, and beyond. We can’t die. I have cried countless tears, at home, or work. I have many  a

client grab me in their arms and hug me. They see the load  I carry.  I have been held up in prayer by our friends and family, and people I don’t know. I believe it is working. I am working on letting go of the anger I have at the Dr and Myself for not speaking up. Fool me once, that is what they say right? Never again. I am so impressed with his Dr and NP and nurse right now, I can not sing their praises enough.  His nurse today spent a half hr just going over his CT results with us. She knows how to talk to Brett, and understands his humor. At one point in the Dr’s office today Brett had enough, dropped an F bomb and stormed out. We looked at her as she laughed along with us.  “Welcome to the wonderful world of Brett “. we said.  Our new normal.

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