Chasing a Diagnosis

We sat on her family room couch sorting through her photos. Occasionally one of us would stop and show the other a photo, laughing or reminiscing about the story behind it. I felt like a kid again, sitting in my childhood home reliving old and happy memories with my mom. Then she paused, her fingers resting on a photo. The smile had vanished from her face. “What? What is it?” I asked. I noticed her demeanor had changed.

“I don’t remember having this taken,” she said in a somber voice. I leaned over to look at the photo she still had between her fingers. It was a photo of her at the hospital two years ago after a major surgery called a Whipple Procedure. She looked at me as if to question if she was really the one in the photograph.

“That’s you,” I assured her. “You looked awful,” I said, trying to hold back my tears. “I am glad you don’t remember.”

“Me too,” she said as she slid the picture from her fingers into my hand.

I sat and studied the photo for what seemed to be an eternity. She was sitting upright in a chair next to the bed in her hospital room, a pillow draped over her lap. The hospital gown barely covered all that was coming out around her. A tube was coming out of her nose and one was also coming out of her neck. Looking at the photo seemed to leave my mom in some sort of disbelief. She had no recollection of the days following this surgery and although the photo looked like her, she acted as if she had just seen a ghost. I knew it was my mom in the photo, but I too thought she looked like a shell of the woman I have always known. Her pain was so intense after this surgery that I can only describe the look in her eyes as empty pain. It’s the kind of pain that demands complete submission to it. And there she was in a photograph, a momento of pain.

She and I had a haunting glimpse of a time two years ago we would both prefer to forget. It was the first time I seriously doubted whether or not my mom would make it through a surgery. This surgery was different than the ones she’s had previously. This was a rare procedure that required a skilled surgeon and would not guarantee her a better future or survival. When faced with such uncertainty, I thought about the holidays we had shared over the last year and wondered if we had truly enjoyed those moments together. I didn’t want to think about having the next holiday without her. It also made me think about my own selfishness and the times I didn’t grasp what life has been like for her. As long as I can remember my mom has been battling an invisible enemy. My mom was born in 1953 and in 2008 she finally found out what has been causing her life-long pain. She has a hard to detect birth defect called Pancreas Divism (an abnormality of the ducts of the pancreas) and Spincter of Oddi Dysfunction (a dysfunction of the muscle(s) that help control the flow of pancreatic juices). This and the treatment of which caused Chronic Pancreatitis. These abnormalities cause the syptoms she has felt since childhood: pain in the upper right quadrant of the abdomen or in the back, epigastric pain (especially after meals), abdominal swelling, nausea and/or vomiting. All of these symptoms during her lifetime were mistaken for various other ailments, so mom spent 55 years of her life undiagnosed and suffering.

“I’m sorry,” I whispered from under my tears.

“About what?” she asked, sounding surprised.

“For not being more supportive,” I continued. “I can’t imagine what it was like to be in so much pain, especially when so many people stopped believing you.”

“I had to keep going. I knew something was wrong, but I hate that it took so long to find out what it was.”

Her problems began in childhood. She had unexplained pain that grew more intense into adulthood. Because she so desperately sought an answer, she has had a staggering number of surgeries in her lifetime. Some surgeries to fix specific problems and others were an attempt to find the source of the returning pain. There is no doubt it was hard for her to continue to fight for her own health when others had given up.

She hugged me and we sat silently, maybe pondering the moments we lost. Her story has touched me more deeply in the last year. I was recently diagnosed with Rheumatoid Arthritis and I too will most likely be dealing with a lifetime of chronic pain. The difference between her story and mine is defined by one word: diagnosis. When my blood was drawn last year, I didn’t want a diagnosis but once I got it, I was validated. My pain wasn’t an illusion and I could begin treatment. My mom had spent most of her adult life chasing a diagnosis.

So, why was it so hard for her to chase a diagnosis? The hospital and medical bills became a rotating door for my mom even though she and my dad were already struggling financially. Money wasn’t the only reason she was discouraged from returning to the hospital or seeking out another specialist. She’d frequently hear comments like, “If they can’t find anything wrong, then what is it?” or, “You don’t look sick.” And all the while she would feel discouraged and invalidated for her suffering. Years of hearing other’s doubt made her doubt herself and that led to depression.

“How have you done it over the years?” I asked. “How did you live with chronic pain, especially when you had no idea what was wrong? Weren’t you angry?”

“It isn’t easy,” she explained. “Getting angry about it wouldn’t have helped. I knew my body and I did what I had to do. I have also learned not to hide from my depression.”

When my mom finally had diagnosis in hand, the only treatment available was risky and didn’t guarantee a better quality of life. The first procedure landed her in the hospital with acute pancreatitis. I visited her during this acute flare in 2008. Her pain was so intense that she was given large doses of pain medications and food was held until her pancreatic levels decreased. When I saw her, she was out of her head and desperate for food. Every year since 2008 is speckled with memories that she and I would rather forget. Awful memories where my mom and I began having an unspoken understanding about her health and death. These moments would shame the people that would doubt her illness when they’d say, “You don’t look sick,” doubt her pain because she wasn’t constantly folded over from it, or those who were perplexed because they couldn’t see her disability with their eyes.

“Mom,” I said, “you are amazing. I can only hope to have half of your strength.”

“I’m not any stronger or braver than you.”

I heard what she said but doubted the truth in it. I didn’t have the same difficulty before I had my answers. There are many people, like my mom, who are chasing a diagnosis. They spend every day in real pain and desperate for answers. They persevere even if they have to do it alone. My mom did what she knew was right despite adversity. Fighting the unknown is one of the bravest battles one can face. She isn’t the only undiagnosed individual fighting for answers so don’t judge someone based on outside appearances or speculation. Offer support because even when someone is fighting the unknown, they are still fighting.

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Why "You don't look sick" isn't a good thing to say.

Signs of acute pancreatitis:

Sudden intense pain in the middle of the upper abdomen and the pain may radiate to the back. This pain may begin 12-24 hours after a large meal.

Fever, nausea, vomiting.

Cammy skin or rapid pulse.

Tenderness or distention of the abdomen.

Signs of chronic pancreatitis:

Abdominal Pain that may radiate to the back or chest that is intense and long lasting. It may be intermittent or persistent.

Stools that are excessively foul or bulky.

Nausea, vomiting or abdominal distention

Weight loss because of malabsorbtion of foods

Development of diabetes if pancreas becomes damaged.

Source: webmd.com

A Brother’s Lesson in Disability

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It's hard to believe they were once this little.

My disabled son is seven and he is the second oldest of my four children. My special needs son was diagnosed with Tuberous Sclerosis Complex at three months of age. A few of his secondary diagnoses include epilepsy, autism, and intermittent explosive disorder. He is considered multi-disabled. As he grew, his delays became more apparent to all of us, even to my when my oldest son. He and my youngest son are 17 months apart and it was very exciting for him to have a little brother of his own. It didn’t take long for him to notice that his little brother didn’t play with him as he anticipated, and that his little brother was also sick.

At four months, my youngest son developed a rare and catastrophic form of epilepsy called Infantile Spasms. These deceivingly innocent looking seizures occur in clusters and are very hard to control. He would have multiple episodes a day and the seizures would be only a few seconds apart and could last up to fifteen minutes. All of our best attempts at controlling the spasms eventually failed. This made it hard for him to reach developmental milestones. His brain was just too bombarded with epileptic activity to make any significant developmemtal progress. So as both my boys grew, the developmental gap also grew. My oldest would be playing ball, stacking blocks, or drawing and my youngest could only watch. His body was weak and he had limited mobility. He also had significant speech delays. It was obviously hard for all of us, but especially for his big brother who wanted to play with the “little buddy” he eagerly anticipated. How could I explain to a three year old why his little brother couldn’t play or talk? How could I help him grasp such a complicated subject in a simple way?

My oldest was very familiar with his room. We spent alot of our time playing there. I first asked him where all of his favorite toys were and he happily showed me. Next, I blindfolded him and asked him to bring me those same items. He did find and bring me what I asked but it took him a while and he needed my help. After that and a few laughs, I explained, “Your brother is just like you, he just sees things differently. It may be harder for him but he knows what’s around him, just like you knew your room even with the blindfold on. And just like you had to take your time, he has to take his time to do all the things he would like to do. You needed me to give you directions on where to go and we have to do the same for him. You eventually got to your favorite things and he will too. You are one of your brother’s favorite things and he will find you. Give him time.” I also reminded him that even though our experiment was hard, we still laughed and he needed to laugh with his brother, even when it gets hard. He smiled and I hoped something stuck but every day from then on I still remind him, and all four of my children, of one or all of these things when life gets hard,  give it time, offer help, give lots of love, and never forget to laugh.

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A Boy Fading

It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and a new school will be the right decision for you both. The question, “Why?” rings in your ears frequently and today is no exception. You know the answer, it’s because he was born with this genetic condition that is stealing his vision. And then that same sickening feeling wells up from your gut and you try to stop yourself from revisiting the same internal battle that steals your sleep. You know the conclusion is always the same, life hasn’t been fair.

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When it comes to children diagnosed with a disability that robs them of any physical or mental capability, it is often hard to see the silver lining. The hard truth remains the same, it isn’t fair. It is unfortunate that in our supposedly accepting society, people often prey upon the weak much like a lion attacks the weakest of a herd. Too many continue to act like animals when encountered with someone who shows the slightest fragility. School should be a safe environment for every child but instead many children are teased, bullied, and excluded based on differences. Parents often have to decide if they want their child to continue an education at a school that is adding unwanted stress to already stressful physical or mental health issues.

Yet, it happens every day and the above llustration is a very certain reality for a little boy living with a rare genetic disease. His name is Avery, he is 10, and he was born with a condition called Retinis Pigmentosa. This inherited disease causes severe vision impairment by retinal degeneration of the eye. During the course of the disease, the cone and rod (photoreceptor) cells die which causes a decline in vision. The landscape of life for individuals with this disease slowly turns into a confined view of reality. Life that was once bright and colorful slowly turns into a channel of black.

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Even his favorite things are fading from view.

Avery is as bright and as inquisitive  as any other child his age. Through it all he has tried not to let his disease define him or what he wants to accomplish. But, Avery’s vision is slowly fading and with it, it takes the spirited independence of a little boy. He no longer rides a bike or a scooter because his disease has progressed enough to make these iconic childhood activities risky. At his young age, he now has to be more cautious because even walking into a new environment creates challenges.

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Sometimes he feels very alone.

And so brings us to Avery’s first day at a new school. He leaves behind students who heckled him for understandable clumsiness associated with his disease, parents who allowed and contributed to the bullying, and impatient teachers. He now has to familiarize himself with a new school, make new friends, navigate a completely different environment, just because he was born with an incurable disease. That is when unfairness is caused by the actions of those who made him to feel unwanted over no fault of his own. Disease and disability are never an elected decision of life, but the unfair treatment makes it seem that way. Teach your children about acceptance. Teach them to love one another regardless of differences. Even a child can be a bright light, and they too can make a difference in someone else’s life. And yes, a bright light for a child whose world is growing dark.

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Avery with his brothers.

If you wish to support this little boy and his family’s difficulty paying for his medical care, please visit their page:
http://www.gofundme.com/uqm3u7f3u

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Childhood is Still Waiting

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Do you remember playing in the tub as a kid? The goal of a bath was not to get clean but to play until the skin on your feet and hands got wrinkly. Do you remember picking scabs, counting bruises, jumping off the couch, or on the bed? How about spending who knows how much time figuring out all the quirky little things our little bodies could do? This entailed sitting cross-legged with both feet on top of the thighs, trying to do a handstand or a somersault,  and climbing trees as high as possible until mom got nervous. I remember riding in the car hoping to see a mirage on the road, wishing we would drive over a large hill, and surfing the wind with my hand when the windows were down. It didn’t matter how much time was wasted swinging at the park, talking to friends, or playing basketball because there seemed to be an endless amount of time to grow up.

As an adult, time seems more limited and it’s hard picking a pointless task to spend our precious time pursuing. I find it hard to spend too much time playing make believe with my kids because there are piles of laundry waiting to be washed, dirty dishes in the sink, and dinner always needs to be made. It’s a shame because my kids will grow too fast and there is a quickly fading window of opportunity to have kid-fueled adventures.

Days after my son was diagnosed, I was crying to my mom on the phone. I told her that I felt like I would never be able to move forward and enjoy being a mom again. She gave me what seemed to be odd but simple advice. “Next time he takes a bath, put on your bathing suit and take it with him. Put a bunch of bubbles in the bath and play.” She gave no explanation and I wondered if she truly realized the magnitude of what I was telling her. How would this make my broken heart feel any better? I didn’t really want to do it but I knew my mom, she would make sure I did as she asked so that evening we drew him his bath and filled it full of bubbles. I put on an old pair of shorts and a tank top and sat with him in the tub. He was only three months old, so I sat him on my knee and put the bubbles on his little nose and in his hair. His older brother stood at the edge of the tub and played with the bubbles as well. My oldest thought the notion of mommy in the tub with her clothes on and covered in bubbles was too funny. I began to smile again. In the middle of the bubble filled tub, I was reminded that my newly diagnosed son was the same boy he was before we learned of his diagnosis. He needed all the things he had before, especially the best of his mommy.

The few minutes I spent acting like a kid didn’t solve our problems. There are days I fret and I have had many more tear-filled conversations with my mom. What it did do is remove me briefly from the fast-paced world of adulthood and remind me of why it is such a joy to have children. My kids are oblivious to the responsibilities of adulthood, as they should be, but I cannot be oblivious to their childhood. My children need me to be an adult but they also need me to understand what it’s like to be a child and for that, I sometimes need to act like a kid. I need to let the laundry, dishes, and dinner wait so I can let my kids, and myself know just how fun it is to be a kid.

So, if you are reading this post, here is my challenge to you: go be a kid. Do it. Blow bubbles, find a park and swing (make sure you lean back as far as you can on the way forward so it looks like your feet are touching the sky and say, “I’m flying!”), run up a slide, hop from one piece of living room furniture to the other pretending the floor is lava, color (on your stomach and on the floor), make a blanket fort, or draw yourself and bath with way too many bubbles. Yes, adulthood is about maturity but it doesn’t mean all the fun of childhood should be lost. You will be amazed what a few moments away from adulthood will do for you. Make time for moments you will look back on and smile. So, go ahead, take a moment, be a kid.

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