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Speaking in Cursive

Walking through this extraordinary life.

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family

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.

Is Was, Was Is

I had a craptastic week , last week. My grand puppy went nuts and ate everything that wasn’t nailed down. Including my new couch. One of my other dogs went on a hunger strike, and I have no idea what he was protesting. He thinks he is Gandhi.I worked long crazy hours. I got stung by a wasp and had a horrible allergic reaction, go figure. I had to say goodbye to my second born son as he moved across the country with the love of his life. I ugly cried. And that is when I finally realized the definition of Motherhood.

Motherhood, Is, locking myself in the bathroom with a fun size bag of Kit Kats, crying, repeating over  and over,to the adult child knocking,  “Yes, of course, I am okay!” as the wrappers fall to the floor. I think I need to upgrade to the giant size bar.

Motherhood, Was, 5 loads of laundry a day. Smelly football uniforms. So many shoes scattered about the house, not knowing who they all belong to.Cooking to feed an army, or a football team, whoever showed up first.Doors slamming, guitars jamming, noise noise noise.Just wanting five minutes peace.

Motherhood, Is,empty places at the table, which is now just used for storage. Empty bedrooms, so I keep the doors shut.Learning to cook all over again, to feed 2 or 3 instead of 6 or 20.Throwing away bread and milk that have spoiled, because, there is not a neighborhood gang at my house eating and drinking. Too much silence.

Motherhood,Was, sleepless days and nights. Staying awake with sick kids.Holding puke buckets. Helping with projects and homework. Going to games, and tournaments, and musicals. Concerts,Spelling Bee’s and field trips. Never eating a hot meal from a plate, but rather from the serving spoon, as you cleaned off the table. Greeting them after school, at the door, about the missing homework phone call,Screaming and yelling at the top of your lungs, then regretting it the second you did. Praying that they would turn out despite how much you were screwing them up, by not knowing what the hell you were doing at all.

Motherhood, Is,Skyping, and texting and emailing, to make sure they are okay.It is sending or handing them money, and having them say “No, Mom, I am okay, I don’t need it.” (Who are they? )It is watching them, from afar, or very very afar, live and follow their dreams. Seeing them fall in love and make life decisions. It is constant, unending worry and prayer. Worrying if they made it safely, if they ate, if they have enough money,are they Happy? Praying that they did, they have, they do and they are.It is forgiving yourself over and over for all the mistakes you made raising them, and hoping they forgive you too. It is looking at old photos and wishing you could do it all over again.The, messes, the homework, the sleepless vomit filled nights. All over again.It is nagging them about making you a grandmother.It is crocheting baby blankets so you are prepared.

Motherhood , Is, Missing their laugh, their voice and their mess.It is memories to last a lifetime, to carry you through, on the quiet nights, or weekends.It IS having your heart, walking around, beating in someone else’s chest, because you love them that much.It, Was, and Is the greatest blessing in your life. It , Was, Is, worth the scars, and the stretchmarks. It Was, Is, learning to let go, before they were, or you are ready. It was, knowing they needed you, it, Is hoping they still do. It, Was, loud and noisy, it, Is, learning to embrace the silence. It, Was, all about and for them, it still Is. It Was, Is, and always will be.Motherhood, is crazy.

 

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