One Word at a Time

I love the advice and sayings passed down through my family. Some of my favorites are:

“Busy hands, happy heart.” My grandma is always busy with something. I think it is because she has such a big heart.

“Everything has it’s place, everything in its place.” My favorite. This fuels my obsession for everything clean and neat. Especially my house.

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L-R: my attempt to make a space to organize family activities (we will see if I actually use it.. but it looks good), my tidy office (I like to stare at it more than use it), my bedroom (I promised my husband it would never get girly and ten years later I get caught in my lie)

“Cold hands, warm heart.” My grandma reminded me of this every time she touched my cold hands.

“Finish for a clear day tomorrow.” This usually referenced the evening’s meal.

“Treat others the way you want to be treated.” This is a good one for everyone to follow.

“You had better “go” before we go.” This is why my bladder has the urge right before I step out the door.

“Return borrowed items the same way or better than when you received them.” I think if this one every time I get something back filthy or broken.

“Don’t go to bed angry.” My grandpa’s favorite.

“Early to bed, early to rise.” I like it but I hate mornings.

Some sayings were those we frequently heard from our parents;

“I am going to kick your butt into next week.” My mom would often threaten such action if we chose to participate in improper or illegal activity.

I am trying my hardest to make some of the lessons I have learned about life stick with my children. I know I will inevitably recycle these favorites, I am tempted to add some of my own personal lessons that I can sum up on cute little quotes, you know, those things in which I have lots of experience:

“Always expect poop.”

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Yes, that's poop. See, you should have expected poop.

“Setting a bedtime for the children is like trying to run on ice.” There is always one more thing they need and although we feel like we are moving closer to bedtime, we aren’t.

So okay, these don’t sound as profound. I truly hope my kids will be able to see the work I have on this blog and those pieces I have or will eventually have published and realize I tried to change their lives, and maybe a tiny piece of the world for the good. So with that being said, I will list some of my own favorite quotes.

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Maybe someday someone will quote me and my children will be able to say, “My mom wrote that.” To me, that would be a great legacy, a realization that their mom did something to make the world better and they could do the same. I know generations before me certainly tried and my life is better by them being a part of it.

What are some of your favorite or treasured quotes? I hope some of the best ones are from those people who personally made your life a little better one word at a time.

*d*

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Stay Tangible

I can remember what the term Best Friend meant when my age was still a single digit or long into the doubles. It was whoever you liked the best at the time. I’m not sure when that superficial notion dissipates, and I know that there are people older than me that still believe that. I can’t really pinpoint when I realized what having a “best” friend really meant but I guess to me it means no amount of distance or disagreement can change how I feel about that person. It’s like having a spouse, that’s not my spouse (but who would grow old with me and my 30 cats if for some reason we both became spouse-less). It’s unconditional.

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Something else that I’ve realized is that best friendships are not necessarily exclusive. My definition of best friendness allows for more than one person to fill the role. While there will always be that one person that survived me during my most moody and awkward teen years, and vice versa, that doesn’t mean that new friendships can’t become just as bonded. When you find someone you can trust, someone who makes you better and tears the duct tape from the mouth of the voice in your heart, you cherish them and hold on tight.
But this isn’t about somebody’s traveling pants or divine secrets. It’s about how if I’m not careful, all that will remain of that solid pact of mutual adoration, is a thumbs-up on a newly posted Facebook photo. The internet has given opportunities, where there were next to zero, insights I may never have had otherwise, and the choice to be the best, or worst, version of myself behind the comments I wield. It’s allowed me to stay in touch with people I might’ve otherwise lost contact with, and to find again, the ones I lost years ago.
But a side effect of all this digital interaction is that what was once a tangible human being becomes a series of “lol’s” and emoticons. The constant connection I feel with the web and my smart phone give a false sense of friendship. It sets me up to go months without actually seeing someone and to somehow be okay with that.

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Well, until this morning. I had another one of those face-slapping epiphanies while I stared at the chat window on my computer screen. Messages from ol’ Trixie (from Silhouetted In The Background), making me laugh mostly because I could hear the exact way she’d say the words. I’d “lol’d” and that got me thinking about how our friendship had been relegated to interactions of the electronic kind. While it hasn’t happened yet, I started to worry about forgetting the way her laugh sounded. In the years passed, we may not have always had time for each other but we still talked on the phone semi-regularly. There’s something about hearing someone’s voice that all the texting and messaging and commenting and poking will never be able to replace. I almost typed, “I miss you.” Instead, I took my turn in Words With Friends.

Like hell! We never let each other win! Battle to the death!!
Like hell! We never let each other win! Battle to the death!!

I will never let her go. Of that, I’m sure. What seems unclear is if it will only be her cleverly typed responses on social media and an occasional email that will be the friend that I cling to.
Life is hard right now. I’m diving into my new career and she’s excelling at hers, all while raising a family. But when will it get easy? It seems like I was citing the hardships of existing several years ago and for totally different reasons. I don’t think life ever gets un-hard.
I can’t rely on the hope that she too has had this epiphany, that all the people I’m close to in the physical world as well as the virtual understand how important it is to keep ourselves tangible. If we dissolve into electronic hearts and smileys, I want to know that I did my part to reach out, to touch—to literally laugh out loud alongside someone who knows exactly how to make me giggle.

~L~

A Matter of Perspective

One of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” to “Why is she so anxious during social events?” Parents like my husband and I not only have to deal with issues such as these but we are also trying to understand everything associated with him medically. All these things intertwine like a complex web and pulling at any part of this web will no doubt effect something else.

For example, my one of my son’s diagnoses is epilepsy and when his seizures become poorly controlled, we have to decide the next step in management. Most of the time we choose to increase the dosage of his current medication before trying another medicine or approach. We also know his behavior is directly effected by how much medication he is taking as he has been known to have a low tolerance for anti-epileptics at high doses. This has made finding the right therapy for seizure control challenging. We want control but we also don’t want to see him overly aggressive and causing harm to himself or others.

A few years ago he started a new medication to treat his primary diagnosis, Tuberous Sclerosis Complex (TSC). The medication is normally used to treat cancer but it has been found to be a promising drug to treat TSC. A year after starting this medication, he was seizure free but he also stopped eating. Feeding issues were not new to him but giving up eating was and we became concerned. After asking adults on the same medication, speaking to his clinic and a nutritionist, we have a better understanding of how the medication may be effecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand how to unravel this complex issue. He could be refusing to eat because of his autism, medication, or behavioral issues. We also realize that we could be partly to blame for his finicky eating habits.

These two examples are not the only ones I could list but they are the issues that have caused the most conflict in our lives. It is particularly difficult for us to pull our son apart from his problematic issues and fully understand how to manage them, so trying to explain it to others is almost impossible.

I know my husband and I are not the only parents who are exhausted by the questions and unwanted advice over subjects we are trying to understand ourselves. We started our son in early intervention at four months of age. I have worked with therapist for years discussing his different habits and behavioral issues. We have spoke to his team of doctors, nurses, psychiatrist, nutritionist, and many more to try to give us the best chance of helping him live the fullest life possible. After seven years, there are many questions that we still cannot answer. There are many questions that don’t have answers. I want to share a few insights to what it feels like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.
Although we have spent years with professionals to try to help our child work through various problems, there is no magic fix. There will still be times when he will have a meltdown, inflict harm on himself or others, and many other things we’d rather not see. This does not grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we have been working very hard to help our children. Don’t forget that they are often struggling in ways we don’t understand. If you haven’t been working just as hard at helping, then stop the unwarranted advice.

2: Dictating to us about what you think our child should or should not do causes unwanted stress.
We have been there. There is a party and all the kids are lined up, ready to play a game and someone says, “Everyone plays, even (insert our child’s name here)”. We have even been told we HAVE to sing The Happy Birthday song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries but we are also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. If we choose for him not to participate, we have a good reason and if that isn’t good enough, prepare to get what you have asked for, anxiety from our child or a stern “no” from us. Asking before assuming is always the best approach.

3: Pointing out our child’s flaws is very upsetting.
I don’t understand why others feel the need to point out our child’s issues, like we are blind to them. We are obviously aware of these things, it is OUR child. Instead, try acknowledging the good things our child is trying to do.

4: Fixing our child for us undermines our parenting.
Trying to “fix” things, especially without our consent is not welcome. If we don’t offer our child fruit at the dinner table, we don’t want anyone else to either. If our child hasn’t had a haircut for a while, there is probably a reason for it. Don’t try to save the day with these “fixes.” We are not neglecting our child when we choose not to do or offer things that others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture) so unless you are a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed causes friction in our relationships.
My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same, he’d scream and hit himself. This never stopped my grandfather, he’d keep asking. This caused us a lot of anxiety because even getting our son to the table was an accomplishment. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather, “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.
Sometimes an innocent question or action could cause anxiety for our child, so we ask our requests regarding our child be respected. Don’t be the reason for additional stress.

The bottom line is this; we need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless too but we are doing our best despite the fact that we don’t have all the answers. We want to be trusted to know what is best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

*d*

What is Important to Me in the Coming Election

Dear Presidential Candidates,

I would like to be very candid with you about my life because I am a representation of many silent voters who are watching you carefully. I am an American who is living with chronic illness and I am also an American who has a special needs child. It may be rare to have both a debilitating disease and a child with one but here we are and I want share 6 points that are important to me. By the way, I have Rheumatoid Arthritis and my son has Tuberous Sclerosis Complex. Neither disease has a cure so our problems are life long, so we hope for long term solutions to the issues that are important to us.

So, how can my life be important for your champaign?

1: My son collects Social Security Disability Income.
Thus far, I do not. My disease has become more debilitating since my diagnosis and some day I may choose to apply for Social Security Income, but the difficult process is enough to make me steer clear of it for now. Everything I have learned and experienced about social security is difficult. I don’t have to go any farther than my phone to realize how broken our system has become. Don’t get me wrong, I appreciate this vital lifeline but we have developed a love/hate relationship with this program that was supposed to be designed to help children and families like mine.

2: We are directly effected by drug companies charging outrageous prices on medications.
My son was prescribed a medication for a type of catastrophic epilepsy called Infantile Spasms. We saw a huge increase in the price of this medication after FDA approval. He has since started a new specialty medication and because of the price, we are required by insurance to get preapproval every three months. This means I am a sick with worry every three months wondering if they will approve the only medication that has helped my son have an improved quality of life and seizure control. When has it been acceptable business practice to jeopardize lives to make money? The practice of specialty medications being distributed only by speciality pharmacies has also become an issue. The problems some families run into with these pharmacies is inexcusable. These problems range from allowing delay in medication shipment (even if it means the patient will run out of medication) and dropping a patient without proper notification (we have experienced both).

3: I refused medication to treat my own disease because I didn’t know if I could afford it in the future.
In January our high deductible insurance starts a new year and we still don’t know if we will be able to afford the out of pocket cost until our deductible is met. More private insurance companies are offering skyrocketing deductibles with H.S.A. accounts. They try to say we can thus control our own health care with an H.S.A. but this is false. In the end we are paying a premium, pushing money into an H.S.A. account, and we still don’t have nearly enough money to cover these huge deductibles.

4: My son and I have missed out on equipment, medication and therapy needed to help us live the best quality of life.
Everything comes with a price tag and if you have a disease, are disabled, or have been diagnosed with something like autism or sensory issues, expect a huge price tag. My son has needed protective headgear and a bed enclosure for his epilepsy and we needed help paying for these steeply priced products. He have lived without many items that would certainly make life easier for both of us because paying the price for these items would be nearly impossible, even with assistance.

5: Getting help paying for the variety of different needs is complicated.
Life is already hard with these difficulties and so many people have to navigate the paperwork and hoops to try to get what is needed and/or prescribed. How to get help should be clear and require minimal paperwork.

6: Families are choosing between health and cost.
No one asks to be diagnosed with something life altering. No one asks to live a difficult life made harder by the system that seems to work against people like me and families like mine. The government needs to decide if it actually wants to help or just talk about it. Cutting funding for critical needs programs is a low practice that needs to be stopped. In the end, you aren’t messing with dollars, you are messing with lives.

We are supposed to be living in the greatest county but many Americans are without insurance or reasonable insurance plans to pay for their medication and health care. It is a tragedy when drug companies can set their own prices and have no regard to the lives effected when the medication patients need is out of reach. If you don’t believe it, go to the local hospital and ask questions instead of taking pictures. I guarantee parents still have to leave the hospital empty handed and without what they need to take care of themselves or a sick child. The life of the sick should never carry a price tag. How sad. It’s time to consider what life is like for those who need the most help.

*d*

Pondering the “What If” in Life

It’s Monday and Kristie’s day began before most of the world opened it’s eyes. It’s 2 a.m. and one of her two sons is ready to start his day. Kristie rubbed her eyes, dreary from numerous days of scattered sleep.

“Can I get up?” asked her youngest son Blake standing next to her bed

“Go back to bed, it’s too early.” As he wandered back to his room, Kristie knew she shouldn’t get too comfortable. She knew he would come back and he’d probably ask to go to the toy room. Several minutes later, he was back. ” Come on,” she said as she walked with him to the toy room. She laid on the couch and he grabbed his iPad. She didn’t look forward to the next four hours of interrupted sleep on the couch.

On this morning Kristie couldn’t sleep. She settled on the couch and made her best attempt but couldn’t.  Instead she ended up watching her little boy. Her mind began to wonder about all the things surrounding Blake and her oldest son, Drew. She began to rehash the “what-ifs” and all the other parts of her life she tries not to think about. It’s the same inner monolog that plagued her when her oldest son Drew was born, it’s the same crushing thought that wonders what life would be like without Fragile X Syndrome. What if their two boys never had it and what if she never carried it? “What if,” she wispered to herself.

She began to wonder what their life would have been like without all the harsh looks, awful critism, and impossibly difficult days in the  fifteen years since Drew was born. She recalls the worst of moments when a harsh stare was enough to make her family feel unwelcome and how a terrible comment like, “You should stop having those defective children,” seemed to cut her to her soul. She could still feel the same sting she felt fifteen years ago when it was confirmed that Drew had Fragile X.

She sleepily closed her eyes and  began to dream, or maybe it was her imagination but when she opened her eyes, both of her boys stood in front of her. “Hi Mom!” They spoke with unbelievable clarity, each offering arms open wide. “Thank you,” she heard from both boys harmoniously. In her  confusion she also heard, “We know it’s been hard, sorry Mommy.”

“No babies, don’t say that.” She thought she had spoke but the words didn’t come out.

“I love you.”

“I love you ”

Each boy embraced her. The very real feeling startled her awake. It was Blake. He was pushing on her arm. He wanted to watch a movie. It was 4 a.m. She got him settled again, all the while playing back the vivid vision in her head. She returned to the couch and now she really couldn’t sleep. She felt a gnawing in the pit of her stomach. If getting carried away with an impossible notion where her boys weren’t plagued with Fragile X wasn’t enough, she felt like she got a very real glimpse of it. She was very certain her boys would never fully understand the difficulties their family faced daily. The boys didn’t know life without Fragile X, it’s all they knew, but Kristie couldn’t help but wonder.

What would it feel like without the cloud of anxiety that seemed to hover over her boys. The anxiety that make daily schedules a must, especially when plans change outside the normal routine, small difficulties a big deal, and outings that often feel more like a production. The anxiety that causes fear of the unfamiliar. The same fear that causes tension between the boys and sometimes leads to physical outbursts. Most importantly, what would life be like without her own anxiety over every decision made in regard to her boys?

Kristie and her husband wanted to be prepared because they knew they could not afford take the trial and error approach to parenting. They knew they would need support and help with the decisions they would have to make for their boys and a foreknowledge of how to deal with the issues that come with Fragile X. They have attended meetings and conferences to help navigate life with their two special boys. She and her husband couldn’t simply ask, “When will Drew start school?,” they asked questions like, “What’s an IEP?” and “Will this school be able to accommodate his special circumstances?”. They couldn’t anticipate developmental milestones, they had to work hard to help the boys reach them. Each day is hard work and she and her husband often feel like they are fighting an uphill battle. They fight everyday to make life fulfilling for their boys while trying desperately to somehow fulfill their own needs. So they do wonder what would life be like if every decision didn’t feel like a thread that could pull the complex tapestry of their lives apart.

Kristie blinked heavily, “It’s six Blake, let’s get a shower.”

At this age both her boys should be taking showers independently but both boys need help as developmental delays and anxiety keep them from doing it without assistance. Soon she would have to wake Drew who is often hard to get out of bed and often difficult to bathe.  After the routine of morning showers, Kristie either feels ready to approach the day or ready to go back to bed. Today was difficult. Both boys needed plenty of help and verbal cues to prepare for the morning. It felt like an entire day was packed into a mere few morning hours. Already tired and exhausted, she began to make a schedule for the day, but today was proving to be too much. She began to cry.

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Drew and Blake saw her crying. Drew nudged her and said, “You’re a sad little Mama,” and stormed off but Blake stood for a moment, looked at her, and began to cry.

She couldn’t help but smile through her tears. She looked at Blake and just like any other mom, she saw her baby and wiped away his tears. But Kristie became especially grateful for this moment. There was no anxiety, schedules, or questions, just a moment where she could cry with her little boy. It was a moment when he was moved by her sadness. This small moment reminded her of a great many things.

What would she be like without Fragile X? Would the small and grace given moments such as these be as special? Would she see the world with the same set of eyes if her life wasn’t entwined with it? Undoubtedly, the disease has laced each day with challenges most families will never face, but it has also allowed life with her boys to teach her many things.

She knows patience is not given but learned. She knows even when she has felt like she has failed, there is always an opportunity to try again.

Grace is invaluable. She knows why it is needed because she knows she has needed it.

Love should be given blindly and love is not defined by another’s capacity to reciprocate that love.

“I love you Blake,” she said as he left the room. Kristie wiped her own tears, reminded of why she makes it through each day.

She has been given a gift and although she can’t help but occasionally wonder “what if”, she knows she is filling a greater purpose. Kristie is the woman God has intended her to be, a woman who serves as an example of His unending love and grace. Kristie sees the world with compassion because she has needed compassion, she has patience because she has to endlessly practice it, and she loves her family as selflessly as God wants to love each of us.

Yes, Kristie has grieved the life she envisioned for her boys, she still prays for easier days, and still desires understanding from those she comes into contact with, but with it, she has an opportunity. She knows there will be days when she will wish the world would love and accept her boys as she has but it won’t, she struggles with the inevitable bullying and dirty looks that frequently come their direction, but you won’t see her deny the blessings she has received through each of her boys. Life for Kristie and her family can be hard but they truly love the life they have been given despite the difficulty. They have been given the rare opportunity to show others that true joy comes from the foundation in which you stand.

Kristie knows that on days where she feels like she has had enough, she can still stand because she chose a solid foundation in her faith. It is faith in a God who provides the most joy in what seems to be the most difficult of situations and shines an example of His love through her life. God often uses the broken to do His best work because oftentimes the broken are already asking for His guidance through prayer. No doubt this is Kristie.

At the end of the day, she can look back and thank God she was blessed with another and thankful for the strength to endure. Soon enough the day will start again and she may be tempted to wonder “what if” but she can be assured she will remember why she wouldn’t want to be anywhere else.

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*d*

A Lesson in Friendship

It’s no secret, I like different and I would love to start a new and unpopular way of thinking that praises the vast differences of the human race. I would love to think we could be a world where people would truly learn to love blindly. I want to share a story with you about my son with special needs and how he might know the very best way to love.

I normally would not go into a debate about social issues and I do not want to with this post. I only want this story to be one to ponder the next time you see strife over various differences in our country.

I believe I have the freedom to believe and the free will to choose my own personal convictions. I also respect the beliefs of others and their freedom to choose their own convictions. That is what our country is all about, right? Freedom? The problem is the inability people have to respect the differences we are all allotted. It can also be difficult to find a middle ground that satisfies an infinite number of beliefs. Here is something that could make the conflict a bit easier to swallow; if your opinions or beliefs differ from another, you have the option to choose kindness. It isn’t likely the debates and arguments will ever end and we will not likely satisfy the millions of varying beliefs, but we can always choose to be kind.

Kindness is something I didn’t have to teach my disabled son. He cares nothing about the differences everyone else is fighting about and he most likely will never fully understand the complex moral debates that have been going on for decades, he’s just nice. He knows how to make friends even though he can’t communicate like a typical child. He calls everyone he knows his friend. Here is a story about my little boy making a new friend.

Last week my aunt came in from Arizona. It has been a long time since she has returned home for a visit and this time she didn’t come home alone. My aunt is gay and she came with her wife. It is the first time we met the woman she has devoted her life to. I hope they enjoyed their time with family. We played games, sat around a campfire, and ate lots of food. My aunt’s wife also made a friend, my seven year old disabled son. She didn’t flinch when he brought her his iPad and wanted her to play. He was rather insistent but she didn’t seem to mind. She sat and played, talked, and made funny videos with him as long as he wanted. He didn’t care that she was new to the family, he could care less about how she dressed or who she married, he liked her for who she was and she liked him the same. She may have noticed that he was different but she didn’t withdrawal from him any of the numerous times he wanted her attention.

To understand this mother’s joy over this event is to know that I understand that it can be hard for some people to interact with my son. He doesn’t always ask to play and he often uses in your face tactics to engage playtime. I understand he can make someone who doesn’t know him very well uncomfortable. But what I saw was a new friendship between two strangers that could have been mistaken for one of life long friends. These two friends really liked each other and no amount of difference between them mattered.

The day after my son met his new friend, he sat with his iPad and watched the videos they made together numerous times. He even remembered her name. After he had his fill of videos, he stood at the door and asked to go to grandma’s house because that is where his new friend was staying.

Those two saw each other as each one of us should see each other, potential life long friends. Their friendship is blind, as it should be. Too bad too many people miss out on a great friendship because of differences. It’s a shame many can’t stand by their own personal beliefs while still embracing those who oppose them. The debate isn’t about beliefs, it about the condition of the heart. My little boy calls those who treat him with kindness friends, it’s that simple. Maybe this friendship has more to teach us than we know.

*d*

Living in the Gray

It’s warm today and she’s resting on her beach chair. The sun warms her face as she quietly hums the song coming from her headphones. The beach is noisy today but she’s trying hard on focus on this relaxing moment. She concentrates on the cool air that wisps across her toes and despite the noise, she drifts slowly off to sleep.

“We’re done,” cuts in a voice that interrupts her music and startles her awake.

“Thank goodness,” she sighs as she begins to move forward and out of the M.R.I. machine. Her daydream was over. She felt fortunate to have drawn her focus away from that confined and noisy space. But a feeling of disappointment came over her. She wished her moment away wasn’t just a dream. In fact, the last few months for her have been like living in a nightmare.

A few months ago she began to feel sick. She was tired, her body ached, and she felt like she was coming down with the flu. She took a couple days off work and when it was time to return, she still didn’t feel better. The weekend passed and she still couldn’t shake what she thought was the flu or some sort of virus. She returned to work and held strong, hoping her symptoms would improve, but they never did. The symptoms and the addition of widespread pain was beginning to disrupt her life. She couldn’t concentrate at work and by the time she got home, the extreme fatigue and pain kept her from keeping up with her normal responsibilities at home. Deep in her heart she knew something wasn’t right.

It began to slide into every aspect of her life and she knew she needed answers. She was disappointed to learn that when she went looking for answers, she’d only end up with more questions.

“So, what’s wrong with you?” she would be asked.

“I don’t know.”

“What do you mean you don’t know? Didn’t you just have an M.R.I.?”

“I did but they couldn’t find anything,” she said feeling defeated.

“All that money spent for nothing?” Her heart sank hearing those words. She had hoped others would see her quality of life would be worth the investment.

The time and money she invested in searching for an answer was only feeding her increasing guilt, but she kept reminding herself of why she was searching. She often had to keep going even when she felt like the doctors had also given up.

“The doctor gave up on me when I didn’t fit the diagnosis he had in mind, please don’t give up on me too.”

No one wants a diagnosis, but everyone deserves a chance for treatment and hope for a better quality of life. Those living in the gray area between health and a diagnosis are lost. They are always searching, researching, and asking questions. They are often submitting themselves to tests and seeing various specialist when they know the financial strain and time consumption involved. They are not crazy, their symptoms are not in their head, and yes, they are suffering. They are like Erin in my story. She is an intellegent, loving mother of two who works for a living. She is active in the lives of her children, but she also knows something with her health isn’t right.

The woman in the story could be my own mom who searched for 55 years before receiving a diagnosis. She could have been me. I knew something wasn’t right with my own health for over ten years. After various doctor’s appointments and all of the same tests and questions, I found my own diagnosis after plenty of research. My diagnosis finally came after I asked my physician, “Could you please test my blood for Rheumatoid Arthritis?”

People seaching for a diagnosis want you to know:

I am suffering.

I do need answers.

I need support and understanding.

I need help.

Do not judge me.

Don’t ask me questions about my search and then cut me down.

Please don’t offer alternative healing until I have a diagnosis.

Don’t tell me it’s all in my head.

Listen to me.

As for Erin, she is going to keep searching because she needs answers so she can have hope for a better future, for herself and for her children. She desperatly desires the chance to experience life without the disruptive symptoms attached to an unknown diagnosis. She deserves to get up each day and know what she’s facing. She deserves a chance for a fair fight. She and all people living in the gray zone of the undiagnosed want and deserve the same.

*d*

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