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.
July 16, 2019 at 10:40 pm
I have been very concerned for your family. Thank God you have answers. You are in my prayers.
July 17, 2019 at 1:34 am
Thank you!!!!
July 16, 2019 at 10:41 pm
Thanks for sharing, Mary! I will pray for Brett and your whole family. I can only imagine how you feel. ((HUGS)) from Michigan. ❤️
July 17, 2019 at 1:34 am
Thank you so very much!
July 16, 2019 at 10:46 pm
Mary – you are Ana amazing woman, a wife, a mother, a daughter. Don’t ever doubt yourself. God will give you the strength you need to get through all of the tough times. And if they get too tough he’ll be with you then too. I had no idea what was going on. Thank you so much for posting this and sharing. I will pray that you and your family find the way through these hard times.
Shannon
July 17, 2019 at 1:34 am
Thank you so much!!!!
July 17, 2019 at 12:03 am
While I only know you through Facebook, my heart aches for Brett and all of you. I have no words except that your faith will get you through. It most certainly won’t be easy, but please know that you are an amazing witness for our Lord and Savior. We will be praying for you and your family from Utah
July 17, 2019 at 1:33 am
Thank you so much for your kind words. It means so very much!! We so greatly need and appreciate your prayers!
July 17, 2019 at 4:19 am
Mary,
Thank you for giving us the priviledge of praying for Brett and you and Mark. I don’t take that trust lightly.
Thank you for sharing your journey and feelings with us. You’re so courageous with your vulnerability.
Thank you for stepping up to the challenge of parenting a special needs child. I’ve never felt “I have to” from you, but “I get to.”
You are a wonderful example of how to be a good human for the rest of us.
I’m glad you’re praying for your own peace. I will pray that you can forgive yourself for not speaking up and camping out. That time is gone. You can’t get it back, and any time you spend feeling guilty or angry at yourself is more time you will lose over something you can’t change. I understand those natural human feelings!! I also pray you can let them go to bring the best of you forward.
I will also pray for you to give yourself extra grace. The emotional challenge of watching your parents health fail and saying goodbye to the people and place that were home changes you. The arms of the people who would’ve helped you through this are no longer the arms you can fall into, so you’re both dealing with your own feelings and trying to figure out a new way to deal with your own feelings. I know your parents are still around, but grief doesn’t care. It wants you to mourn, and that takes so much attention and energy, even if you try to push it into a corner.
I very much believe God is thinking, “well done, my good and faithful servant.” I pray you can lock that firmly into your heart, renew your energy, and prepare for whatever might come next, knowing Jesus will be walking with you through it all. 💕
July 17, 2019 at 10:08 am
Thank you so much for your kind and meaningful words. I do indeed feel honored and blessed God entrusted me with Brett. it has been the journey of a lifetime, maybe even two! Thank you for your prayers, for my son , my family and myself. I feel them, and feel the guilt and sadness leave. I ca once again feel peace, as I exhale. Thank you so very much.
July 17, 2019 at 7:02 pm
I just want to give you some comfort. I am also a mom of a son with Crohn’s disease. I too carry guilt for things I did before diagnosis. It just doesn’t do any good. We do our best and now that you know, focus on remission. What medications is your son on? My son was diagnosed at 4 years old. It took 2 years to get him into remission. We’ve had many great days since. There is a light at the end of the tunnel. I will always worry a bit more about this child of mine, but he’s happy, strong, and healthy (for now). If you ever want to connect or talk, I’m a friend of Barbs. I’d be happy to exchange stories. Hang in there! You’re doing the very best you can. Charla
July 17, 2019 at 7:18 pm
Thank you so much for reaching out to me. Barb mentioned you, as a possible source of info and understanding. I will need all the advice and info you can offer! I am so glad your son is doing well!!!