Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*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*

Wait, Wait, Wait…..

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I’m waiting in the doctor’s office. It’s apparently my thing now. Some people go out to eat, some go to bars, while others go shopping, I get to wait on doctors. I should have been forewarned about my present course of lifestyle long ago. But, unfortunately, there are many things you won’t hear once you or someone you love is diagnosed with a chronic illness.

For instance, I spend a lot of time rearranging my schedule or finding someone to help me take care of my children while I wait. I wait at the doctor’s office, hospitals, pharmacies, and if I’m really lucky, I get to wait with my ear glued to the phone while on hold with the insurance company, clinics, and my personal favorite, social security (eye roll). The most frustrating part, besides all the waiting, is knowing I will be doing it all again for follow up appointments, emergencies, or fighting with insurance and social security. It’s a guarantee. Hours of my life are spent with my butt glued to a chair dealing with something associated with my illness or that of my son.

Getting my son one of his medications got bad a couple years ago. It was so bad that I was on the verge of a breakdown. My son has a severe form of eplispsy and the best medication used to treat it was offered solely through a specialty pharmacy. This pharmacy needs a disclaimer, “Warning: dealing with our business is bad for your health”. In reality, that’s a problem with a lot of businesses and people who are supposed to help those with chronic illness, they really don’t.  All the extra appointments, phone calls, and paperwork just add to the already mounting stress of chronic illness.

So people like me wait. We wait for a break in hopes that something easier will come along. We wait for improvement in health so we can wait at the doctor’s office less often, we wait for the right medication so we don’t have to deal with pharmacies, insuance, and new medication schedules. We wait, wait, wait…..

When there is little in terms of health that we can control, it’s nice when we get a helping hand, a word of encouragement, or we are at the receiving end of a kind deed. And thank goodness those nice things don’t come with a wait…. they come into our lives and remind us we are not forgotten while we spend a good part of our days doing things we’d rather not.

If I have to wait for something, I’d love for it to be a vacation, a home improvement,  an evening, or better still, a weekend away but these things are usually physically and/or financially out of reach so that’s when the company of a good friend, a laughter filled conversation, or any time we can get to enjoy the things we love are invaluable. Chronic illness changed how I look at life and what’s important. When my mom takes time out of her day to wait with me at my appointments, my husband volunteers to be the one to fight with the insurance company, or my friend drives her shoulder to my house for me to cry on, it’s a big deal. When I feel like so much has been taken away, the little things become the big things that matter.

I know how hard it can be to find the right words when someone is struggling. In truth, there are no right words, what matters are those well intended actions. Even if you don’t know what to say, pick of the phone and try something like, “I wanted to see how you were doing today,” send a text, mail a card of encouragement, offer a smile, or volunteer a few minutes out of your day to wait along with someone like me or my son who spend a lot of time doing it alone. Don’t be discouraged if you don’t know what to say or do, being in the company of a friend is always worth the wait.

*d*

If a Photo Tells a Story

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Here we are, my youngest son and me. It was as uneventful as it looks. We were waiting in the van for Daddy to come out of the grocery store. My buddy said he didn’t want to go in so he sat with Mommy. He did get anxious while we waited so I decided to distract him with one of his favorite activities, taking his picture. “Cheeeeese!!!” he said while sporting his best cheesy grin. Of course I didn’t like how I look in any of the photos. My hair has been falling out at breakneck speed lately. I also noticed his hair was getting a little long. I am glad his medication hasn’t been doing to his hair what my medication has done to mine. Anyway, he was overdue for his haircut. Although, he’s been doing better at getting a haircut, I thought I’d let him go a little longer before we’d give him one. Autism and haircuts don’t mix well at our house.

That’s how life is for us, things like a haircut that seem simple usually have a story behind it, like this photograph. What you don’t see in this photograph is how swollen and painful my knees were that day and how bad my shoulder hurt. My Rheumatoid Arthritis was causing me a lot of grief. The only other time I had left the house that week was to pick up my oldest son from school. By this time, I was anxious to find any reason to leave the house.

Leaving the house wasn’t what it used to be and I was wondering if I should apply for a handicap placard. You see my cutie in this photo has had a rough life. Here he is at the end of a very rough summer. He has been weaker than usual because his seizures had been increasing. He didn’t want to go in because he had a few seizures that day and he was weak and a bit tired. I wondered if I should get a placard for the times he may want to go in and a long walk to the store would be too hard for him. What about me? Some days I can barely make it down my hall to the bathroom but I worry because neither of us “look” handicap. I had a crazy vision where someone deciding to do their own sort of “justice” was yelling at me for parking in a handicap spot as I unload my kids since I may not give the world some sort of visual confirmation of our need for a placard. There is no membership card for a chronic illness club. I guess it’s best I wait. We’d be okay a while longer, I guess.  I try not to take the kids out alone, it’s too hard on my body. So I thought about another topic; how sad this summer was and how we really didn’t do anything fun. I apparently wasn’t being very positive on this day.

My thoughts were interrupted by my son spitting. Yes, he has a bad habit. I’m not surprised. He has autism and epilepsy, and I have Tuberous Sclerosis to thank for all of that. He does things to make his Mom squirm, like most kids do, it’s just a bit harder to convince him to give up a bad habit. I try to be as patient as I can because I know he has a lot going on. I am not the master of patience yet, but I was getting a lot of practice in the parking lot this day.

He wasn’t interested in much that evening, including his iPad. When we are waiting for a long stretch I usually play a movie for the kids. We got this van specifically for the DVD players. Unfortunately they stopped working. Not great news for me. It’s helpful for times like these when I am at the receiving end of spit. There would be no way we’d be able to fix the DVD system so I tried not to think about it. It would just make me mad. I pulled out the next best thing to the DVD players, my phone. Technology can sometimes be grand and seeing himself on my phone is always grand for him. We took our picture together. We are two peas in a pod, he and I….

The course of my disease is eerily mirroring the one he has already taken. He took a medication that required eye exams every three months to check for vision loss. I am supposed to do the same but we don’t have vision insurance, so I am hoping for the best. He moved on to another medication after that one failed. It is used to treat cancer. He has to have labs done every three months to make sure the rest of his body is okay with the medication. I’m right behind him with Methotrexate and looking to see if I can start, and most importantly afford, to continue to take it after the first of the year. With all of the gloomy thoughts, I’m thankful his smile can put a smile on my face.

I flipped through the photos we took and wondered if my face looked a bit more round than usual. I had been on predisone for a while and I’d rather blame the medication for any noticeable fullness in my face instead of my late night snacking. I noticed how tiny my son looks in the picture. We were at the store so his Daddy could go in to buy him his breakfast shakes. It’s the only thing he will consume consistently. We buy them to supplement his diet. It isn’t cheap but it helps him maintain his weight.

That reminded me to check our bank account. “I hope there is enough in there to buy what he needs,” I thought. I sighed and took a long look at the summer sun. It will be sad to see it go. I wished we both felt good enough to enjoy it. We did miss a lot but we do have this picture together. We can certainly look the part but rarely does anyone really know what’s behind a photo.

There is usually a story behind our photos, as there are stories behind many things in our life that no one knows about. I’m smiling but I am always thinking about our health, money, the future, and sometimes regret. I try not to be negative but it’s hard not to be on occasion. The great thing is that he can always find a way to remind me how to be happy despite the flurry of thoughts that often bring my spirits down. It’s as simple for him as taking a photo with his very best smile. Although it won’t be that easy for me, I am certainly going to give it a try. Someday we may look back at this photograph among others, and I want him to know there was a genuine smile on my face, and he was one of the reasons why. I am blessed for every last moment, even uneventful ones like this time when he and I can take a moment, forget our troubles, and smile. “Cheeeeese!!!”

*d*

Sweet, Sour, and Everything Between

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My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.

Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”

This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.

On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.

He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.

I hug him. “Stop!”

I tell him, “I love you.”

“Quit it!”

One of the other kids sit next to him. “Knock it off, okay?!”

The baby cries. “Stop it, baby!”

He is learning what they are teaching very well. I just wish I could interact with him with less yelling.

My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.

Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill  behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,”  as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.

*d*