Love for Today

image

Tonight the phrase “live for today” has been ringing in my ears. I’m in significant pain. I have rheumatoid arthritis and it has been destroying my joints quickly over the last year and a half. I suspect I have had it longer than the year and a half since I was diagnosed but the symptoms that led to the diagnosis were too much to ignore after I stopped nursing my fourth and last child. It’s been quite a ride since. My rheumatologist thought I had a pretty mild case until last summer when my symptoms became severe. The disease has made it it’s business to deform my hands, destroy my shoulders and knees, and cause me daily pain.

Tonight I am once again in my bed watching a movie, writing, resting and desperately doing anything to keep my mind off of the pain. While my family plays downstairs, I am up here in pain, wishing the disease would go into remission. I know I am not alone. There are many people just like me who are wrestling with disease, desperately wishing the pain would stop. Each day I’m in pain reminds me of the damage the disease is doing because the deformity of my joints doesn’t happen without pain.

Pain is all I think about these days. How much pain will I wake up in today? Will I be able to get my housework done? Will I be able to handle one of my son’s serious seizures? Can I get through the day? There have been numerous days when my little girls played a game on my bed, danced around my room, and seemed more than understanding when their mommy has been unable to get out of bed. Now that summer is here and all four are at home, how will all of us handle one of those inevitable days?

Today a picture did me in. It was a photo a mom snapped and posted on social media of her daughter jumping into the pool. She captioned it something like this, “my daughter is getting braver during her swim lessons”. It broke my heart because none of my children have had swim lessons. Not one of my children from nine years old to two knows how to swim. The excuses for which have amounted to one or all of the following; too many kids for the pain, the added stress of taking a special needs child, and financial stress. My kids miss out on a lot and I know I am to blame. Now that I have rheumatoid arthritis, I’m not sure if my son will ever have the opportunity to hit a home run during summer t-ball or if I will be able to see my daughters in a dance recital. Disease has not only robbed me, but each one of my kids. On the other hand, I get to spend a lot of time with my children. I get to enjoy every last minute of their childhood and I wouldn’t trade that privilege for anything in the world. I know I can’t give them all the opportunities I think they deserve, but my husband and I have tried to give them mommy. I have been here as much as possible since our oldest was born. I had a part time job for five years but quit to take care of our medically complex child three years ago. Mommy may not be able to take them to all the places they want to go, but they know I will always be here for them.

These thoughts brought me to “live for today” and was finished with the thought “because tomorrow is never guaranteed”. Nothing drives this point home quite like chronic illness. I never forget that my disease could be damaging my organs at a speed equal to the damage it has done to my joints or epilepsy could take my little boy as he sleeps at night. It’s hard to take the advice of others who think I should “keep smiling” or say, “hang in there!”. It’s hard because no one can fill in for me and take the non-stop mental or physical pain. One compounds on the other until I finally break. About once a month my husband can expect me to cry through a box of tissues. Every last worry comes spilling out and I blame myself for all these thoughts and more. Maybe it’s then when the reality of our life becomes abundantly clear; so much has changed in very little time.

It wasn’t that long ago when I held my newborn son and he was seemingly healthy. I looked at him and saw a lifetime of memories in his little eyes. I could envision a future filled with all of those things a mom expects. It took a ten second seizure to change all of that. Our little boy had an incurable disease and the future didn’t look as certain. Two years ago I could hold each of my children and not think twice about how I was going to get through the day. Now my children crawl on my lap to be held and they know they have to be careful around their now fragile mother. I wake up wondering how hard it will be to get through the day. Did I really appreciate everything I had before it changed? Do I appreciate what I have now? I hope so but since I know how fast things can change, I try to thank God for today. Today is all I have and each second beyond that is a gift. I’m still struggling with each second but I’m glad I have another.

Disease can change the future we may have anticipated for our son, my physical appearance, and the way we look at life but it can’t take away the love in this family. Disease didn’t anticipate unconditional love. We don’t have to guess if love will prevail in sickness and in health, it already has. There is no doubt if my husband will love me even if I don’t look like the woman he married because I already don’t. Our children will never wonder if something they will do will alter our love because they have witnessed it prevail through it all. I think I should change “live for today” to “love for today”.  Disease can take what it will but it can’t take our love, nothing can take that, and for that, I am truly thankful.

*d*

Where is Your Worth?

image

Today my oldest son was sent home sick from school. I knew it was going to happen. I had seen other moms post photos of their kids next to trash cans or their status updates would warn others to stay away from the plague upon their homes. All I could do was wait for those germs to make their way through the school halls and come through my front door. Today the plague arrived.

Illnesses are treated much differently in our home. We are careful to separate sick children from the well ones and clean thoroughly, but we also try our best to keep them from coming in our home in the first place. With a chronically ill child on a chemotherapy drug and a mom who has an auto-immune disease, every illness has to be treated as if it has the potential to send us to the hospital. My ritual of telling the germs they are not welcome comes via a seasonal social media update, it reads something like this, “With cold and flu season upon us, we ask that you stay away from our family if you have been sick or have been around anyone who has been sick. Please make sure you are completely free of illness before visiting our home.” It’s simple and to the point but there is always more I could add like, “We ask you refrain from our home during flu season. We are more susceptible to getting the flu, but your small flu could send those in this home with chronic illness(s) and/or autoimmune disorders to the hosptial. Your flu could be devistating to our health.” I don’t want to come off as too pessimistic but illnesses pose a higher risk for those who are already chronically ill. I take quite a bit of medication to try to build up whatever immune system I have so I can care for sick kids when the plague does arrive, but it doesn’t always work. I sometimes succumb to illnesses and I need help.

These days asking for help is increasingly hard. I was scrolling through Facebook and someone had posted a quote that read something like this, “My greatest accomplishment in life is knowing I never depended on or was a burden to anyone else…..” I read it, made a face, read it again, and mumbled something under my breath. This quote may indicate that the author is a go-getter, someone who is independent and self-reliant. Those observations could very well be true, but the statement tells the world that there should be some great pride in not being a burden to others; so much so that this quote was paired with a beautiful photo, nice enough to hang on a wall if someone so desired. What I mumbled under my breath was this, “So what if something happened to this author and he had no choice but to rely on someone else? What about those who have no choice but to rely on someone else??…..” What did this “inspirational” quote say about those who need the daily help of others? Reliance = burden?

This quote could very well be an excellent life goal for an independent person but to someone like me who increasingly relies on the help of others, it makes me feel a bit…….worthless. I can no longer proudly proclaim how I care for myself and my family with complete independence. Until my disease is better controlled, I frequently need the assistance of loved ones. I can’t even walk long distances without the assistance of a rollator! (Yes, I am the one behind the pink and sparkly rollator.) So I have felt like my life has been on hold since my diagnoses, but does that mean I’m worthless?

I have spent many evenings cuddling a tissue box because I was crying over my feelings of worthlessness. I can’t escape the fact that I have times when I need extensive help from my husband because my RA is so severe. I still look for “good days” when my pain is minimal and I am able to leave the house or do a little of what I was able to do with ease not that long ago. It’s hard to live in a society of people who value what you can do more than who you are. Sometimes it is hard to find meaning when it’s hard to fulfill a purpose my body physically couldn’t possibly fulfill.

Then one morning after reading our morning devotional, many things came into focus. My faith teaches that we are created to be loved by a God, a God who finds pleasure in our love for Him. That same morning I looked at my special needs son after our reading and said, “Your purpose in life is to love and be loved! And we love you so much!” It was then when my light bulb went off. My purpose and meaning really isn’t measured by what I can do or how I can do it, in fact, it’s not meant to be measurable at all.

My little boy may never be able to fully understand many things in life. He has limited expressive communication skills but that doesn’t mean he can fulfill the purpose we were are created to fill, to be loved. If the only thing my son ever accomplishes in his life is to be loved, it’s a pretty sweet accomplishment. No one knows the course of our lives and those who are the goal oriented, go-getters may someday find themselves relying on others to accomplish those tasks that were simple for them not that long ago. That does not mean those people have lost their worth because of it. No, their value was and will always be the same. They are valued and loved for who they are.

Don’t get me wrong, working hard and accomplishing dreams are great but there are those who are struggling to find value because we live in a society hung up on what we do more than who we are. All the valuables in the world mean nothing to someone with an empty heart. You are meant to be loved. You are loved and made for a purpose, and that purpose isn’t measurable by things of this Earth. We may not all have equal valuables but we are all of equal value. Once I realized this, I have spent less time cozy-ing up to the box of tissues. I realized that my life can be spent in love and service to others and to a God who delights in my life.

*d*

Help Super Aiden Soar!

*d* and her family need our help. She’d be the last person to ask for anything if she felt like it was a burden to someone else. Well, I’ve been watching her carry the load for far too long. We all know her little boy and the struggles her family has faced. I can’t imagine the emotional drain *d* and her husband deal with every day. I want to help but there’s only so much I can do to help take away the mental pain, the heartbreak.

And now. Now her little guy is facing brain surgery. The cost will be devastating. So, thanks to the internet and GoFundMe, I’ve started a campaign to help and to let others that love and support her little family to help.

CLICK HERE TO HELP AIDEN SOAR!

If you’ve been touched by something you’ve read here and can spare the funds, every bit helps and is profoundly appreciated. Thank you for reading about us CrossRoadTrippers. Keep *d* and her family in your thoughts and prayers as they stumble through this rough crossroad.

~L~

This is the process they will use to find and possibly remove the tuber(s) responsible for his epilepsy and this is the neurosurgeon her son will see this spring.

Watch “Tuberous Sclerosis Surgery on ‘The Doctors'” on YouTube

An Invitation

I want to invite you in to my life. This will be extremely difficult for me. I am a private and sometimes quiet person but what I have to show you is important. It is a glimpse into the life of someone who is living with Rheumatoid Arthritis and Fibromyalgia. I also have four children and one of them has a disease called Tuberous Sclerosis Complex. He is multi-disabled. Among several secondary diagnoses, he has epilepsy and autism.

I want to capture my life in pictures to put a face to invisible disease. I want to give a voice to others who also struggle silently. Many people, like my family, face difficult daily challenges so I hope my story will serve as a reminder to be kind to others. You never know what challenges someone else is facing.

This is how you might see me in public on a typical day.

image

(I say might because with four kids, I don’t always have a lot of time to apply make-up and fix my hair before I leave the house.) Yes, I “look normal” yet I am very different. Here is life from my perspective:

image

On this day I had another rheumatologist appointment. I was brought back to the exam room and four needles were arranged neatly on a tray. I have never been too excited about needles and this had me nervously thinking about the five injections I had already received since the beginning of the year. I suspected these syringes had something to do with the problem of pain in my shoulders the Dr. and I discussed at my last appointment. I tried to prepare myself mentally for what was to come. Waiting thirty minutes gave me time to doubt accepting these additional injections, but I reluctantly elected to take them in hopes of increased mobility. Unfortunately, it landed me in an ambulance with a suspected allergic reaction. It also altered how I could be treated in the future.

A few short weeks later the only positive side effects of my shots had worn off. The anti-inflammatory properties were gone and my RA took over. I was experiencing my first RA flare. I could describe it simply by saying, “it hurt to move” but I was unprepared for this kind of pain. I was shocked, reeling in pain from the smallest movements. Fibromyalgia gave me a secondary blow as it pained the area around the joint effected by RA. In a matter of weeks, I went from a 34 year-old mother of four who was keeping up with her children, to a woman unrecognizable to even myself. I revisited the rheumatologist and began physical therapy in hopes of any relief. At the advice of my physical therapist, I purchased a rollator. It would help with my mobility when the pain made it too difficult. My hands hurt so bad that I could hardly grasp the handles. My body retaliated against me and it hurt to stand up straight.

image

At the peak of my flare, the morning hours gave me the most pain and I had difficulty getting out of bed so my husband began to help me….

image

He helped lift me to my rollator….

image

And had to help me on and off the toilet.

My knee was so full of fluid that I couldn’t get my leg over the bathtub. My hands hurt so bad that I couldn’t wash my hair, let alone squeeze my shampoo container without assistance. He waited outside the shower to help me wash my body and hair and help me in and out of the tub.

Each day would carry on and each night I would cry out and wonder, “Where is my life?!”

image

Even my hands swelled to the point of making everyday tasks difficult, so I started a small dose of oral prednisone. I eventually had to take two a day. It has it’s own unpleasant side effects, like sweating and mood-swings, but it helped me function. It was enough to reduce some of the problematic swelling but I was still in constant pain.

image

It wasn’t the only medication I was taking to help me through my flare…. and there were more side-effects…. My legs were bruised from taking Naproxen. I was also getting headaches from my pain medication.

image

My son’s epilepsy didn’t wait for me to feel better. Sometimes he falls at the onset of a seizure. After, his limbs are immobilized and he is frequently exhausted. His seizures are physically demanding for both of us. I often have to lift, hold, or carry him to a safe place before and/or after a seizure. On this day he had a two minute seizure that took over his body. He could not move so he begged me to lay him in bed. It was hard for me to carry his worn body to his bed. We were both exhausted. It was all too much and I sobbed as he lay there.

image

It was no surprise that the physical demands of motherhood and my special needs son began to take a toll. The pain became intense in my shoulder so the doctor ordered an MRI. I found out that RA has torn my shoulder to shreds. The six paragraph explanation made for interesting reading. I have refused surgery as 12 weeks of recovery and therapy isn’t realistic for a mother like me.

image
(I couldn’t even get the full summary in this screen shot.)

Another doctor appointment. Here I am waiting to see a pain management doctor. Nothing seems to be as cruel as living with chronic pain. It’s a daily struggle that I am desperately trying to conquer.

image

Another bad day for my son’s seizures. On this day he fell to the floor before I could reach him. My leg had been so full of fluid that I could not get to him before the seizure knocked him to the ground. Although I was thankful he was inside and on carpet, the guilt of being unable to reach him before he fell ate away at me. He is pictured here after he finally stopped shaking. He once again had no control over his arms or legs so I had to lift him to the chair and sit with him until he could move.

image

I pray for days when we cuddle just for the sake of cuddling, not because a seizure has prevented him from moving his own body.

image
I may not be strong but I am determined to hold my baby when he needs me…

Between my special needs child and I, we spend a lot of time at doctors’ offices and in hospitals. What’s startling still is the realization that we will never get a financial break from the burden of disease and disability. It’s disheartening when my medicine cabinet is fuller than our pantry.

image

In the evenings the kids often find me elevating my leg. Since my scare with steroid shots, I have been trying to allow my body to absorb the excess fluid naturally. It hasn’t been easy and I often need to elevate it to find relief. I also have a cyst on the back of my knee that may never go away, or so I have been told. On this night, my daughter found me, and I’m glad she did.

image

Most of the time I look like a normal mom. I snuggle with my babies.

image

That’s my family posing for lots of pictures during a rare trip away from home.

image

I can also be found at the bowling alley with my family although you won’t see me bowl. My hands hurt too bad to pick up a bowling ball and my body hurts too bad to roll one down the lane.

image

….but I am still much different. I know, it can be hard to see. And although I am allowing a glimpse into my life in hopes of changing the way others perceive it, there are still those remaining invisible facets to my life that are the most important.

In the early morning hours during my RA flare, my husband got out of bed and helped me do things he never would have imagined when we wed a short ten years ago. The jokes we made about caring for each other in old age have abruptly ended–just like my once healthy youth. And I realize in my worst moments, love and the affectionate care of my spouse intertwine much like his arms embracing my weak frame. In our darkest and hidden moments, we find love. It triumphs over every minute I wake in pain and he comes to my side, over every seizure that crushes the delicate body of our little boy, and any doubt that we will make it through every last setback together. So when I am asked, “How do you do it?” I may not always have the best answer but I do know I will make it because I don’t have to do it alone. I know I am loved unconditionally. And that is the most important thing you should know about my story…true love is not conditional…true love sees past differences, disability, fear, sadness, and disease. Love is my husband looking past my suffering and weakness and still seeing the woman he loves. Love is the confidence I have in his fulfillment of the promise to love me “in sickness and in health.”

Today, I am getting better and working with my specialists to find the right plan to manage my disease. This will not be the last flare I will see but the goal is to reduce the number of them, manage my pain, and slow the progression of my disease. The most important goal for my health is to be a productive wife and mother. I most likely have a lifetime of care with my special needs son and I want to have that privilege as long as my health allows. We also continue to work on improving his life despite his disease. It has been hard but I look forward to every moment I am given, good and bad. The good times give me hope and the bad times allow me an appreciation of them. And love sees me through it all.

*d*

Insurance Rant

I want to discuss a growing problem for many who care of or live with chronic illness. This is a growing issue that poses a particular problem with those who require on-going medical care, but it is effecting a large number of people.

I have Rheumatoid Arthritis. I was diagnosed in December of 2014. I began treatment after my initial appointment with a rheumatologist in April of 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment and the severity of my disease had already destroyed multiple joints to the point of needing multiple surgeries. Disheartening still is realizing at the end of 2015, I would no longer be able to afford my healthcare, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared about how upset she was about the $800 bill she received from one test to a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have a disabled child and I have a chronic illness. Thankfully our state offers assistance to children with medical handicaps that helps assure my son doesn’t go without the medication he needs, but the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with special needs children who have had to fight with insurance only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the necessary doctor’s appointments and medication I require. Now we have to see if my doctor’s will work out payment plans, see me less often, and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry, how can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because insurance is using every last tactic to stop shipment on the only medication keeping their child seizure free. How is any of this okay? Is anyone else ready to speak out about this? I hope so because no one should ever have to compromise their health care but sadly this is happening every day.

*d*

Critics Will Be Critics

Have you ever felt like no matter what you say or how you say it, there is that one person that will always find fault with you? Have you ever tried to please this person by asking how and why they are offended and try to change it? I have. The only thing I manage to do is make things worse. That one person usually ends up getting upset even further because the additional effort is viewed as offensive or I then looked like I was trying too hard. The truth is, there are people we can never do right by because they just don’t like us. Another truth, the more people we open up to means we are more vulnerable to these type of critics. If you want to test this, go to any article online and read the comment section. Find the most feel good story the Internet has to offer, scroll down to the comment section, and read feedback. Even the heart felt story about a little puppy who wandered away and was brought back home by the kind-hearted neighbors will be torn down by the critic who wanted to know how the irresponsible owners didn’t keep better track of their pet or why it took so long for the neighbors to bring back the puppy. There are people in this world that simply can’t be pleased.

When my friend and I decided to venture out into the blogging world, this was a natural concern of mine. In recent months, I have had to reconsider what and how I write, who I submit my work to, and what it is I want to accomplish with my writing. My primary focus recently has been the stories I have shared with The Mighty. There has been a flurry of negative feedback surrounding The Mighty in recent weeks. I submitted my first story to The Mighty in June of last year and since then I have had 14 stories published. I was shocked and proud to have my work shared on a bigger platform. Prior to these publications, I wrote only for myself. I didn’t write for an audience and I didn’t write to accomplish certain goals. After my first story was picked up, I continued to write as I had before; I thought could make a difference to others who could relate to my personal journey with disability or my journey as a special needs parent. I did begin to write more about my experiences as a special needs mom or an individual living with chronic illness because more of my stories were being picked up because I felt like I was making a difference.

In the last few weeks, some critics of The Mighty have used some poor tactics to drive their point home including plucking out and tearing down stories published by The Mighty by people like me. I have personally steered clear of these pages and care not to know of any attack of my own stories. I think the tactic is a poor way of demanding change. Change in my opinion is best served by open and honest dialog about concerns that effect numerous people. Change happens when disagreement comes and those from opposing parties can fight, but do so honorably. This is especially important when both or all sides are supposed to be working on the same goal: in this case tearing down the stigma of disability and disease. This current attack seems to separate members of the same team, further, attack people who are obviously already suffering.

I will make my statement clear, I write what I want because I believe in sharing my life, and yes, sometimes my life with my special needs child in an effort to help others. I read comments from people who think that parents like me share our lives with our special needs children to somehow promote ableism or write to make the masses feel better about themselves through our work through a tactic called “inspiration porn”. I can only speak for myself and I don’t know if my work falls into any of these examples, but I am simply writing about my own experiences and how they make me feel. I have no ulterior motives but the feeling that I am unwelcome to write as a special needs parent is hard to ignore.

Picking apart one article of one writer is a poor way to get to know that person and understand their experiences. I have a blog for this very reason. I have it because my life is full of unique experiences. They are spelled out throughout many posts that are sometimes written in a flurry of emotion or written calmly at the end of a day filled with inspiration. Yes, some stories are sad, exciting and sometimes just laughable. The bottom line is clear, they are my experiences and this is my life. I don’t write to please the masses, I can’t. It would be impossible for me to make everyone happy. At times, I’m not happy with even my own work but when I came across The Mighty a few months ago, I felt like my personal journeys could have a place in the bigger world. I felt like I could share even the messy, and nearly impossible parts of my life, and they could mean something. Maybe my struggles could serve a bigger purpose. Maybe the story I wrote about how I broke down while picking the kids up from school after a day of setbacks could help the mom browsing the internet with eyes swollen and red from tears feel like she isn’t the only one having a bad day. Maybe the person who just got back from the doctor’s office after hearing the severe pain they have been experiencing is caused by Rheumatoid Arthritis came across my personal journey with the same disease after typing Rheumatoid Arthritis into a search engine. Maybe most of my stories will sit on my blog and never get picked up by another website and never get read by another soul. It’s the most likely possibility and that’s okay with me.

I started a blog hoping it would help me deal with all that was going on in my life, and if someone happened to stumble across it and it helped them too, it would be an added bonus. I didn’t think any of my pieces were good enough to be shared by a bigger community but my first published piece has been shared over one hundred thousand times. That’s pretty amazing! It’s an honest piece about the feelings I have had as a special needs parent. Some may want to say I am complaining about being a parent to a child with numerous challenges and maybe they are right, but I also know how very blessed I am to have the opportunity to raise him. Reading more of my journey would make this point very clear.

It’s through our unique journey that I learn more about the type of person I need to be and how my son’s life has impacted mine in so many different ways. People may disagree when I write about how my son inspires my life, or they may say I shouldn’t use his life to inspire others. I write about his life, he just happens to be an amazing young man that deals with extraordinary circumstances. Someday I will read him every last word. He may not understand it and he may never be able to articulate his own journey, but I will continue. Why? Like any parent, I want to give my child all I think he deserves. If I write about my son’s journey and how it has effected him, maybe I can draw awareness to his disease, Tuberous Sclerosis Complex. No one will know of the disease or how it effects someone in real life if no one talks about it. I’m talking about it!!! I am sharing how it effects a real little boy who has real feelings, who experiences real hardships at the hands of his disease, and needs a real cure!

So, critics will be critics. I have read some honest feedback from the critics of The Mighty and I have made some decisions about my writing based on those who are like my son and grew up with disabilities. I appreciate helpful feedback, but not feedback that hurts the entire community. Not everyone is going to like me or like my work, that’s okay, I don’t like everything I read either. The Mighty may not be for everyone but I have no doubt the founder has good intentions. I hope those who have legitimate concerns continue to voice those concerns in a constructive manner and will stop trying to take down the entire mission of the site. The Mighty is on new territory and it can be a great place to connect with people who will help us all feel like we are not alone when dealing with the difficulty of this life. I guarantee every contributor already has difficulty and putting their stories out there for further scrutiny is hard. I barely have time to write, I have a full plate but you can be sure that my intentions are good. If all I leave in this world are a few stories about my life with my own illnesses and the life of my little boy struggling with his, it’s well worth it when I read that one comment that says, “Thank you!” In that one moment when that reader no longer felt lost, it became worth it. I know what it’s like to feel lost and afraid, several times over. I had never heard of Tuberous Sclerosis Complex and I would have done anything to connect with someone who understood our pain the moment we heard our little boy had that disease. I am still fighting to understand Rheumatoid Arthritis and how debilitating the disease really is. It helps me to connect with another person who found treatment when they too were feeling as hopeless as I do because they too were watching their body waste away at the hands of the disease. I am leaving what I am searching for, giving what I take…. and I won’t stop… I have a voice, I am going to continue to use it, and yes, I feel mighty!

*d*

Finding the Right Umbrella for the Rain

It has been months and my son and I have been standing out in the pouring rain. The intensity of the storm brought on by chronic illness and disease increased quickly and unexpectedly as we found ourselves gathered under an umbrella barely big enough to shelter us from a light sprinkle. I was praying for sunlight and more ominous clouds were on the horizon. I felt hopeless.

In it all, I was focused. I was focused on living my life as if I were dying. My health has been on the decline, as also the health of my son. Any opportunity to wake and enjoy another day is a reason to be thankful, even on a stormy day. So, I would wake and my thoughts would focus on things like if I’d be healthy enough to throw a holiday party or if he would be strong enough to participate in the next school activity. I’d try to remind myself to make the most of of today because I know tomorrow isn’t guaranteed. And what about next year? What could be assured to us 365 days from now? I thought through our circumstances. I was given this gift to appreciate the moment and live for today, but I wasn’t happy. I wasn’t meeting my life with the satisfaction I thought would be a product of this new way of thinking. How could this be? The answer didn’t emerge until recently. Out of fear, I was living like I was dying but I wasn’t focusing on the living. It had become so easy to focus on the worst case scenario. Here we were battered by a storm and I expected he and I would be swept away.

My son and I both live with life altering diseases. Both of us have weathered our fair share of storms, my little boy more so than myself. We now stood together and wondered if we’d see the sun again. He lives with epilepsy caused by Tuberous Sclerosis Complex, a genetic disorder that causes tumors (tubers) to form in various organs. Many of his organs are effected but the thirty-five plus in his brain cause him to have a severe form of epilepsy that has been becoming increasingly difficult to control. In the last few months the seizures have caused developmental regression and physically weakened his body. He often looses all bodily control post-seizure. He is now in need of a wheelchair to help us transport him when incidents like these occur. I have Rheumatoid Arthritis so I have difficulty physically helping him when he has these seizures that revoke his ability to move. I am having trouble keeping my own body healthy as my RA has destroyed enough of my joints to warrant three surgeries in my future; shoulder and double knee replacement. I am awaiting M.R.I. results on my other shoulder. I am hoping the list of needed surgeries does not increase to four. My son is waiting for an evaluation of just one surgery, neurosurgery.

We know what is coming within the next 365 days and it doesn’t look good. I know I will hold off any treatments I may need until we take care of him. We never wanted to come to the conclusion of neurosurgery. We have tried all other methods to control the epilepsy and all have failed. Neurosurgery is now his best chance for him to be seizure free and hopefully gain back what progress epilepsy has taken. There is hope but I am also scared. It’s this fear that drove me to take on the motto, “Live like you are dying.”

It was a bad feeling; letting our health issues dictate how I approached each day. Each time my son had a seizure and it left him unable to move, I’d nervously anticipate him regaining movement and I’d pray it wouldn’t be the one seizure to send him to the hospital. As I lay him in bed, I thought of those seizures I may not hear as we sleep. Moreover, I feared my own disease would leave me unable to care for my children, especially special needs son as he requires a great deal of care. I was determined to fully live out each day but when that didn’t go as planned, I worried, stressed or got overwhelmed. At the end of the day, I’d then be wrestling with regret. I was frozen with fear of the unknown and fear of what I couldn’t control. My emotions were dictating my actions and I’d allowed my emotions to end my days in regret. I’d finally had enough. It was time to live without the fear, live without fear of dying.

How could I accomplish this? I began with a smile. When I felt like giving up or giving into my negative emotions, I’d smile. When I felt like throwing my hands up, I’d throw them around someone. When awful things happen, like when my son is paralyzed by a seizure, I’d smile to comfort him. I’d wake in the morning and focus on the endless possibilities for joy and if I felt that regret at the end of the day, I’d remind myself how hard he and I fought through the day….. together…. I told myself I can’t regret our best effort.

Fear and regret gave us no shelter from the storm but smiles invited sunshine no matter how bad the storm. I didn’t need a motto to bring happiness, I just needed to try to bring happiness.

*d*

Letters to My Son

This begins a series as we prepare for the next step in the care of our special needs son. He is being referred for brain surgery in the next few months. To follow our journey, I have decided to express my thoughts about the process through letters I will write to my son. This is the first of hopefully many over the course of this scary and hopeful journey.

image

Letter 2:

image

Dear Little Buddy,

We are still waiting for the call to schedule your visit to the neurosurgeon. The longer we wait, the more I ponder the impossibility of this trip. There are so many things to consider; the expense, the logistics, the care of your siblings, and the possibility of being away from home for a considerable amount of time. I am very saddened that your declining health has made it necessary to go to this extreme but it’s not your fault and I don’t want you to feel bad. It can be easy to carry guilt when you need help due to your disease. I know because I also have a disease that has made it necessary for me to ask for help on occasion. I have a disease called Rheumatoid Arthritis and it has changed my life in many ways that mirror how your life has been effected because of your disease, Tuberous Sclerosis.

Since I found out that I have this disease, I have needed to take different medications, some very similar to medications you are or have already taken. One of my medications could effect my vision and I have to it checked every three months. It wasn’t that long ago when we were taking you to the optometrist for the same reason. Although our specific medications are different, I also take an anti-epileptic and a medication that is used to treat cancer in high doses. I look in the mirror and see how the appearance of my own face has changed just like yours did as an infant when you took a medication that I am taking now. The physical changes we both have experienced doesn’t end there, we are both weaker than we were a year ago. I have benefited from a rollator and we will be meeting to fit you for a wheelchair next month. It could all be a coincidence but I think it’s more. Through my struggles, I get a rare chance to understand you more.

It is also through these similarities that I can sympathize with the side effects of your medication, the frustrations when your body feels the effects of failed medications and therapy, and the never-ending rotation of doctor appointments. Unfortunately it also means all of these things double for our family. We spend twice as much time waiting at appointments, twice as much money on medications, therapy, and surgery, and double the worry over getting through each day. Those are big issues for us, but we care about you above all.

We are always thinking about how to make your life a bit easier. It is in these thoughts where I have struggled to help, and sometimes, understand you. You have done things that seem irrational; sometimes you scream, hit your face, beat your head on the wall, or you will hit me or someone else in the family. It wasn’t until I too started to feel quite irrational that I began to understand you. In the last few months I have had to start numerous medications and I didn’t anticipate the variety of side-effects I began to experience. Unlike you, I have a full understanding of what is happening to me and yet I still cried and wanted to shut down. Since you don’t understand your situation as I, it must feel like your life and/or your body is out of control. How can I expect anything but an occasional meltdown or outburst from you? I have nights where I can’t verbalize my own emotions, yet I have expected that from you. I have expected you to do more than I have been able to do myself, and for that my little buddy, I’m sorry.

I am sorry for all the times I haven’t been patient and understanding. I am sorry when I haven’t searched beyond your anxiety and outbursts. I am sorry when I haven’t been a safe place for you to fall. I know I have needed a safe place where I can have no fear rejection or judgement. You deserve the same. It has been hard for me when you have had terrible days and have taken it out on me. It’s hard to be hit or kicked by someone you love. It hurts my heart because I want to spend my time enjoying you, not fighting with you.

Don’t forget that little buddy! You are amazing. I may wish we could enjoy our time together without the some of the bad things that come our way, but I will take you and our situations just as they are as long as we can be together. I am also thankful for my own struggles that bring me a closer understanding of you. It makes me a better person and a better mommy. You have taught me a greater compassion for others and the value of patience. I also promise I will do my best to remember you are doing the best you can despite the mountains that stand before you. You have prepared me for all the difficulty I personally face because you have been an example of bravery. Yes, you are brave. You don’t have to know you are brave to be brave.

Thanks for being my companion in a journey two people rarely get to have together. I look forward to climbing the next mountain……together……because bravery doesn’t mean you have to do it alone.

*d*
(Mommy)

☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆

Dear Little Buddy,

It was about eight years ago when we found out that you were going to come into our family. You weren’t planned, but most miracles aren’t planned. You were born on a beautiful July morning. You were perfect. We brought you home and I imagined a bright future for you but some of those dreams quickly became lost. You were three months old when you had your first seizure and the words Tuberous Sclerosis Complex came into our lives. A few short weeks later and we learned you had also developed a rare and catastrophic form of epilepsy called Infantile Spams. These innocent looking seizures made it a very real possibility that you would experience developmental and physical delays. It was hard to imagine the same bright future as we did the day you were born. We were so very sad and the future looked as gray and solemn as our broken hearts. We had never heard of this disease and here it had changed the way we looked at you.

Yes our hearts were changed. We loved you even more and we were more determined than ever to help give you a wonderful life despite this new knowledge. Your disease was now a part of our family because it was a part of you. You weren’t the same kind of perfect we once thought you were, you were a unique and special kind of perfection. You see, sometimes the world can have a different definition of what perfect should be but that isn’t how we define it. We want to love perfectly with all our imperfections because none of us are perfect. Because you are loved so very much, this letter is now going to be even harder to write.

After seven years, we have been unable to control the seizures that are a biproduct of your disease. Daddy and I have tried very hard to get you every resource possible to help you in your fight. We made big changes when we decided to take you to a clinic that specializes in Tuberous Sclerosis. We did this so you could be in the care of neurologists that are the best at treating others just like you. We have spent the last seven years exhausting every avenue and turning over every stone to control your epilepsy and help you make the most developmental progress possible. You have worked very hard too. You have been in numerous therapies since you were a baby. You have fought hard after every seizure increase and every regression that happened as a result of those increases. We have all fought so hard together for a very long time. I am so sorry that we couldn’t make it all better. This reality makes me sad when I see the look in your eyes during a seizure. You want Mommy and Daddy to make it all better and we can’t. All we can do is be strong and comfort you.

Because of all of this, a big decision had to be made. We know the last few months have been hard for you. Your epilepsy has been making you weak. On school mornings, I see how hard it is for you to walk down the steps and up into the bus. I see how hard it is for you to do so many things that were simple to you just a year ago. I cry at night because I know it’s been harder for you to understand and communicate with me. I see all the terrible things epilepsy has done to my wonderful boy. But I know there is still fight left in you, I can see it. I see your fight every time you get angry and scream in frustration or have an outburst of anger. I cannot imagine how difficult it is to have so many things going with you and to you while having no control over what happens. I try to remind myself of this every time you get angry with me. I try to remember that you need me to be strong because you are still so little and you really have no way of understanding what has been happening to you. I will continue to be strong with you because we have one more fight we need to face together.

We are going to see another doctor in another hospital that may be able to give you another chance at living a life free of the seizures that done so much to you. He is a neurosurgeon. He may be able to get to the root of the problem and remove what is causing your epilepsy. It is a long trip and we may be gone a long time but there is hope. This is just the beginning of a long process and we have no idea how we are even going to make this happen. The wheels are in motion and it began with a referral to this hosptial. There are still a lot more details to work out and a lot of people want to help you little buddy. Many, many people would like to see you seizure free and making developmental progress.

image

Remember when I said you were a miracle? Well, you are for many reasons. At one time I thought a lot of good was gone from this world. I had lost a lot of faith in myself and in others. Then you came along. In the middle of all the tears, worry, and sadness surrounding your life, many people came to help. Friends and strangers alike reached out to give us hope. When we needed hope and love, someone was always there to show us that there was indeed good still left in this world. You taught us many wonderful things too. You changed the person I am and who I want to become. You make me see that every single day is a gift. Through you, I have a daily reminder that I can only appreciate those things that are here today. I wanted so badly to live in a future made up of my dreams. When you were diagnosed, I could no longer do that. At first I was sad that I could no longer clearly envision your future, but now I see the true blessing of living for today. Your life is a miracle because of how you have changed lives just by being here. You may be small, you may deal with more than most do in a lifetime, but you are capable of doing even more. We may be in charge of seeking the best help possible and doing it in a big way, but in the end, you will have the victory because you will win this fight.

I know I may never read this letter to you. I really don’t know if you would understand. I’d like to think that despite your developmental delays, you do hear and understand more than I know. So we will talk about the next battle we will face together. I will remind you of how strong you are and how much we love you. Your daddy and I would give all that we have to help you. It seems like an impossible journey but we will get there one way or another because you are worth it. Don’t ever forget that. Even when you have had the most terrible day and you take it out on one of us by hitting, screaming, or spitting, or even when you have a terrible meltdown because life is overwhelming, we still love you. We see the hurt under it all and we want to help. No matter what happens, you will always be our little buddy and you will always be loved. Remember this when the next leg of our journey becomes difficult. Sometimes we must decide to take the most difficult of roads because they lead to the most hope. I pray we get there and the best is waiting for you at the end.

Love,
Mommy
(*d*)

Help from a Song

It took one day in mid-October to change my life. My infant son was admitted to the hosptial after having two seizures at home. After three days of scans, questions, and crying, we were given a diagnosis, Tuberous Sclerosis Complex. We left the hospital in shock. We had never heard of this disease and now it threatened our son’s life.

Nothing made sense as we drove home from the hosptial that night. As I sat next to him, I held his tiny hand and studied his perfect face. It was only three months ago when we brought this precious life into the world and we had so many dreams for him. No one could tell us how this would effect his life and we were told he could be disabled. I was heartbroken as I realized the future was uncertain at best. There was no more dreaming of tomorrow as we were uncertain of today.

As time progressed, so did his disease. He developed a catastrophic form of epilepsy, he began to exhibit behavioral issues, and efforts to control the effects of the disease kept failing. I became more depressed despite my deep faith that teaches purpose in suffering. The feeling of helplessness was overwhelming. I yearned for the days with my baby when I could still imagine him free of his disease and I could hope that he would fulfill a normal life.

We reached our emotional bottom after five years of sleepless nights and uncontrolled epilepsy. His medical team wanted to discuss the next step in gaining control over his seizure activity. It was in that room amongst the discussion of neurosurgery that helped change my perspective. I didn’t see the young boy who was hitting, screaming and injuring himself out of frustration or pain, I saw my baby. I saw him as small and innocent as the day I held his hand on the way back to the hospital and my heart broke all over again. How could this be happening? I tried to sort out the last six years of ups and downs and continual failures. Fortunately we were given the option of starting a new medication and avoiding neurosurgery. We once again left the hosptial with mounting uncertainty.

Shortly after that visit, the song, “Can We Start Again Please” from Jesus Christ Superstar popped into my head. It persistently played in my head so I scrambled to find the song online. When I heard it, I wept. I recounted six years of failures. I recounted everything from medication to my own failure as his mother. It knew this song was God’s way of telling me that it’s okay to start again. It was okay to fail because the question could always be asked, “Can we start again please?” Shortly after, I rocked him in my arms while listening to that song and I softly sang it in his ear. I then asked for his forgiveness for my own failures. I knew the frustration with his disease had also gotten the best of me. When the difficult days get the best of me, I ask to start again. Sometimes several times a day if necessary. I just keep trying. A simple song reminded me that there is always a time to start again.

*d*

Faith Not Fear

image

After a summer sprinkled with fear and anxiety, I wanted to discuss fear in hopes that maybe I could encourage someone else from giving into fear as I did. I gave into it months after I was diagnosed with Rheumatoid Arthritis and the disease began to progress quicker than I anticipated. Instead of trusting that God was in control, I decided I was better off fixing the problem myself and I began trying to negotiate a different outcome. I began working like mad to show God how serious I was about changing everything in my life if he would just spare me this disease. When things did not change in the way I wanted them to, I became fearful and I began to shut down. I spent more time crying and less time enjoying my kids. I worried about myself so much that I neglected to see those who were suffering around me. I was crippled by fear and blinded by my illness. It all came to a head while folding my laundry on a Thursday afternoon. My anxiety suddenly boiled over and I became an emotional disaster. I began pleading with God, tears landing on the laundry piled up on my lap. “Why Lord?” I asked, “How will I ever be happy again? Don’t you know my struggles and you choose to give me something else?! IT ISN’T FAIR!!” Did He forget that I have four children and one is disabled? He has a health issues, including epilepsy, and the addition of my illness seemed like a cruel slap in the face. I cried so hard that I felt like a piece of my soul could have been torn out with my tears.

I was supposed to attend my first Women of Faith Conference in a day and something was trying to convince me not to go. If I hadn’t, I wouldn’t be writing this today. It took one weekend to change my perspective. It took a few hours to remind me of all the things I somehow forgot. It took only a few minutes for me to realize I was not a woman of fear, I was a woman of faith.

I want to start by running down a short list of the benefits to beginning a relationship with one of women’s favorite bachelors, fear. Fear is a seductive and mysterious partner. Many women enter into an often secret relationship with fear while juggling relationships with a spouse, children and/or their friends. It’s a relationship familiar to most women. One thing is for certain, it’s hard to hide this secret affair women have with this sly beau because there are signs that she is indeed cozying up to fear. Women will make time to meet regularly with this companion; in the middle of the night instead of sleeping, nervously inviting it along to appointments, hiding it in a drawer while it dictates her at work, or she can be seen fighting with it while she anxiously watches her kids at the park. The question is, what is so great about fear that makes women want to wedge it, if necessary, into their life? And once there, stubbonrly hold on to it?

Lets expose fear for what it is by illustration. If fear were on a dating website, I will guarantee the profile would read something like this:

Name: Fear (a.k.a. Anxiety, Distress, Doubt, Panic, Unease, and Worry) ~Sounds great thus far, right?~

Age: Timeless

Physical Attributes: Heavy. Intimidating. Strong.

Best quotes from fear:

“I want to change every last bit of you. For example, I can help rid you of that haircut one handful of hair at a time. I can also help you lose weight by reconditioning your digestive system one stomach ache at a time.”

“I will occupy every last of your thoughts. You will no longer have to crowd your mind with nuisance pleasantries.”

“Eventually it will just be you, me, and our blossoming relationship. You won’t have time for anyone else.”

“I want every moment with you and it’s okay if you want to stop doing those annoying daily responsibilities.”

Wow! Doesn’t every girl dream of a controlling relationship with something or someone who wants to change every last bit of the person you are or want to become? If your answer is “no” then you need to reconsider what kind of relationship you are seeking when you allow fear into your life.
Why do we keep choosing fear from the list of available companions? Why do we fool ourselves into thinking that choosing to partner with a controlling emotion is normal and acceptable. We deserve better!

If it were up to me, fear like all emotions, would be defined like a drug rather than an emotion. Emotions would be required to list all potential side effects, then we would know the long term effects of every emotion. It’s no wonder women have such difficulty navigating through life being the emotional creatures we are. I know I can be a ball of numerous different emotions at the same time which means I am also experiencing a great deal of side effects. So instead of choosing to look at the dating profile of another emotion, let’s look at this profile.

Name: Jesus (a.k a. Savior, Son of God, Hosanna, Friend)

Age: Eternal

Physical Attributes: Scarred while making the ultimate sacrifice.

Best quotes to describe Jesus:

“….He will not grow tired or weary and His understanding no one can fathom.”

“For his anger is but for a moment, and his favor is for a lifetime….”

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you….”

“The Lord is slow to anger and abounding in steadfast love, forgiving iniquity and transgression….”

“….I have loved you with an everlasting love….”

Which of the two profiles would you choose? Would you choose the one that will take over and control your life or the one that loved you before he met you? Do you choose the one that will build upon the ashes of the broken person it makes you or builds you up and loves you unconditionally? One cannot coexist with the other. The Bible is full of versus telling us not to fear. Here are a few more examples.

“Do not be anxious about anything, but in everything by prayer and with thanksgiving let your requests be known to God, which surpasses all understanding, will guard your hearts and minds in Jesus Christ.”

“Humble yourselves, therefore, under the mighty hand of God so that at the proper time He might exalt, casting all of your anxieties on him, because He cares for you.”

“There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.”

“I say to those who have an anxious heart, ‘Be strong, fear not! Behold, your God will come with vengence, with the recompense of God. He will come save you.”

God knows the profile of fear. He knows how it destroys lives. He knows how it will destroy your heart. He understands how crippling fear can be. He is concerned over the power fear can have over you. You could read a verse where God encourages us not to fear at least once a day for over a year. Choosing a relationship with God means that you no longer need a relationship with fear. A relationship with fear is a destructive affair. Fear wants you to doubt God. Fear wants to you think there is no joy left when times are difficult. God says that the most joy is found in times of deep dispair. God wants us to know he cares deeply for us and he will show you victory in all circumstances. He wants us to know that the true love of God is free from fear. His love is confident and sure, and He loves you exactly the way you are. When you choose Christ over fear, when you give God control, no matter what happens, there is victory in Him. We can have the confidence to call ourselves women of faith when we obey His words and put our trust where it belongs, with Him.

I came back from the conference that weekend with a changed heart. I let go of fear and grabbed onto my faith. I have confidence that my life has purpose and meaning, especially with the difficulty that ultimately builds my faith. Each day I remind myself to lift my thoughts to Heaven and see the one who loves me enough to allow suffering that brings me to joy.

*d*