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*

More Than the Ground Beneath My Feet

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The color of the sky was a pale gray saturated with a cold mist of rain. The wind was getting colder and the moisture was starting to freeze. It looked and felt just like my mood. Deceptively bright. Bright enough to fill a room with light but incapable of being the only source of it.  A gray day with mounting fog that felt like an oppressive shroud. There was no escape from the way it made me feel. The dingy light slunk its way in and I allowed it to spew its way out of my mouth. I waited for the sun, an indication of the end to this dismal blockade but that would have to wait until morning. Then again, mornings have beaten me down.

I have grown tired of these days. Every morning my eyes burn, my body groans, and I can barely walk to the end of the hall. When did the middle of life feel like the beginning of the end? Where was my body and how did it get replaced with one hardly recognizable? I feel like I am drowning. I am in a sea of gray, pulled down by the weight of this disease. I am gasping for a fresh breath of life and only find that stale, foggy air. It has become more of the same…… endless days pleading to feel normal……wondering if I will ever feel like I can do all the things that glimmer still left in my heart desires. It is fading and the light is growing more opaque. Yet, I still breathe. I refuse to hand over my life to whatever may be hiding under the shroud. I don’t run. No, I cannot do that any longer. I fly. I close my eyes and free myself. My heart burns and the heat courses down my neck. My pulse and heart are at the same frantic rhythm. I must rise above the gray. Atop what encircles the atmosphere that is my life lives hope. To find it I must push against what is bearing down on me and lift my face to the sky. I must look up. I have to stop watching where my feet are placed and look to where they need to go.

The internal struggle is real. I feel the tug of greed, envy, and idleness slide in beside self-pity. I fight the urge to fold my tired body inward and collapse to the spot on the ground where my eyes have wandered. I don’t have to fight there, I can just rest. I don’t want to get up. Pity says, “Stay.” Hope demands I get up. Faith lifts my head and moves me forward. My faith is one rooted in self-sacrificing love. My feet have not been placed on this Earth to serve my own needs but to give whatever may be left of my tattered body to serve those who need me. But it is hard and I am tired. I am worn down by too many variables out of my control. I keep trying to move forward, hoping, and fixing my eyes upward. I remind myself to pull my eyes away from the haze and to the place where the sun never sets. There is beauty beyond what I can see and more that I will never understand. Here is where my toil has meaning and my unrest has purpose. Faith is trusting in something not fully understood. It asks our feet to move forward even when beaten down with the disparities of life. It gives hope and promises more. Faith is the source of the everlasting light.

I never wanted the obstacles placed at my feet. I move cautiously but I still stumble when I fail to look up to see where I am going. True faith is walking along a path despite the barriers that undeniably make the journey more difficult.  Each day I must choose. I can choose to allow the bitter sting of unfairness to swallow me up in a lightless expanse that troubles my soul and steals my hope or I can choose to walk by faith. I can look heavenward and hasten forward in confidence. I can be assured my path is clear and travels are never taken alone. I can live a life exemplified by faith and grounded in love.

*d*

More Than Just Coffee

Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.

So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.

I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.

This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.

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I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.

My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.

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And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?

I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.

*d*

A Matter of Perspective

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

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

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

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

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

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

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

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

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

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

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

*d*

The Dogged Question

Let me preface this by saying that I love animals and have grown up with a variety of furry friends from pet mice all the way up to my beloved late Appaloosa horse. Children are also acceptable but I am more likely to hang out with your kid if he’s well-behaved. I don’t think that’s an unreasonable request. I’m not an expert on all these creatures, but time and experience has given me a well-rounded knowledge.

That being said, last week I was dog-sitting for a friend. She’s a tiny black Pomeranian—the dog, not my friend—with a summer haircut the neighborhood kids would definitely make fun of if she were people. The dog has always been overjoyed and clingy with me when I visit my friend so we thought she’d be fine coming to spend a few days with her Aunt ~L~. And she was. I mean, sure she missed her mom, but she mellowed out pretty quickly and was a joy to have. Except for that pesky being-a-dog part.

Does this haircut make my head look huge?
Does this haircut make my head look huge?

Dogs are needy and very reliant on their people. I know this, and yet, I’m still amazed by the level of dependence. Don’t misunderstand me! Dogs are great! They’re fiercely loyal and forgiving and make great friends. But I’m just not the kind of person who likes adding more time consumption to my day. That’s why I have cats. They’re easy because most of the time, they could care less if I exist or not. I could be on fire and they wouldn’t look away from the sliding glass door to the patio.

Having basically a furry, adorable toddler in the house made me think about something that often bothers me, sometimes to an eye roll, sometimes to a teeth grinding anger.
Though I’m not a dog person, that doesn’t mean I haven’t had years of experience with family pets and the pets of friends. The same goes with kids. In fact, I find myself equating having a dog with having a small child, especially if it’s a puppy. And this brings me to my point. Dogs and kids are great, but they’re most likely NOT for me.

I’ll be 34 in August. I married Husband a little over two years ago. When we got together, the obnoxious question on everyone’s lips was: “When are you gonna get married?” Once we were engaged, it evolved into: “Have you picked a date yet?” And once I marched down that aisle and Flashmobbed my reception hall (seriously, we did, and it was AWEsome), the question became down right personal: “When are you going to have kids?”

Since I was probably 11 or 12, I’ve felt like I never wanted to have kids. Until I got married, I was only slightly aware that all of humanity was expecting me to want to. That seems a little messed up to me. First, I find everyone’s preoccupation with both my vagina’s business and my uterus’s functionality kind of disgusting. And it takes a lot to gross me out. Ask *d*. But if you think about someone asking you when you plan to have children, you realize what they’re really asking is: “When will you and your husband be having sex in order to make a baby?” See? I could get far more descriptive, as I’ve thought about this quite a bit, but I won’t. Second, it makes me angry when someone hears my answer: “I don’t want kids,” and insists that I do, in fact want them. That it’ll be different when it’s your own kid. I am under no delusions that it won’t be different. Of course it will. I’m not a mother but I’m also not an IDIOT. What really makes my jaw clench (and causes heavy use of italics in my blogs) is the idea that other people feel like they know what I want and insinuate that they also know my body, mentality, and personal preferences better than I do. STOP. IT.

I know myself very well. That’s the beauty of waiting to get married until after I turned 30. I’ve had those 30 + years to get to know just what I can and can’t stand, what I like to do, and where I want to go. The decision to remain child-free is not something I take lightly. In fact, I still mull it over at least weekly. It’s like I’m checking my stats and seeing if this is the week I will change my mind (SPOILER ALERT: IT ISN’T). But I do think about it. I don’t think about it because I’m hounded by so many people (even those close to me who should know better), but because there is part of me that would like to have someone to teach all the things I’ve learned on this speed-bump riddled road of life. I don’t doubt my capabilities to love unconditionally and sacrifice as a mother should. But I also understand that I like the way my life is and that I am selfish and wish to stay that way. At least when it comes to devoting time to a kid. Hell, I don’t even want a dog. I’m not going to do what everyone expects when I know it’s not right for me.

If my plan changes in the near future (‘cause let’s face it, it would have to happen soon since I ain’t getting’ any younger), it will have nothing to do with the harping and nagging of others who harp and nag even though it’s not their bodies or lives that will be altered.

How offended would you be if you had children and I told you shouldn’t?

Yeah. That’s what I thought.

Perspective could save us all…

~L~

Unfinished

It has been nearly six months since my maternal grandfather passed away. It has taken this long for me to process the shock of his death. The grieving process is long for me because it takes me a long time to grasp the reality of a death. In the past six years I have adapted to my son’s diagnosis by detaching myself from emotions when terrible events occur, including death. I guess it is a type of defense mechanism for me. I put my head down, push forward and deal with the emotional consequences later. When my emotions finally catch up with me, it takes me a while to recoup. Several events this month have me thinking about death.

People don’t like to talk about death. It’s scary. Death is a good reason I cling so hard to my faith. I believe in something that gives purpose to all things, even something as deviating as death but it’s still difficult to handle. As much as I believe it to be a natural part of life, there is no perfect way to grieve. It took two years after my uncle’s death for the reality of it to set in and I am now feeling it six months after my grandfather’s passing. It usually takes something to set off the chain reaction of grief in me. This time it was taking my grandmother to run errands. I drove her van (something my grandfather only did) and upon pulling out of the garage, I noticed my grandfather’s neatly organized garage. He had just started to put all of his nuts and bolts in little jars. He had hung several items on the wall for easy access and neatly arranged all of his tools on the shelf. He and my grandmother sold their home in Florida and moved everything back here last spring. My grandfather was in the process of merging his dual collection of items when he passed away. My grandfather was meticulous, a trait in which I can relate. I love seeing how he took pride in what little he had by caring about how it was placed. As I sat in their van, I realized he would not be able to finish organizing his garage. It would remain unfinished. His life was finished but now he had unfinished work. My grandfather didn’t leave work unfinished. That is what death is good at, leaving life unfinished.

With everyone so readily connected to one another, death is something  we can’t sweep under the rug and ignore.  I checked in on a woman who has been posting updates about a friend of hers who had recently been diagnosed with a rare form of cancer. Her friend had been sedated and clinging to life. She ended up passing away. She is in her early fifties and has two grown children. She lost her fight with a sudden disease that robbed her of her life and possibly some meaningful final moments with her family. Recently I received a newsletter from the alliance associated with my son’s disease and it’s cover story was about a 17 year-old girl who just lost her fight with the same incurable disease. It is scary and humbling. Life surrounds us with death. If it isn’t before us, it is around us. Sometimes death is one of the strongest reminders to enjoy life.

Several weeks ago my son had a seizure that stopped his breathing. This is the first time this has happened. I became so worried that I began researching how to help finance a seizure monitor for his bed and I am trying to get him on a list to receive a new epilepsy wrist monitor coming out in the spring. The concern was there prior to this incident but this made me rehash all the fears I had when he was first diagnosed. I felt like I did before I learned how to build up a wall to guard my emotions. I once again feared that a seizure will take him from me while we slept or if he were to seize away from home, I wouldn’t be there if he were to cry for his mommy. These and many other fears could paralyze my life. Just like a preoccupation with death, it could control my living but these thoughts have done something profound. Facing the fear of death and the mortality of those I love has made me want to fulfill my life. Without having to look death in the face, I am certain I would not be so appreciative of life. At the end of the day, I don’t think about the housework I have to do or what I need to plan for supper the next day, I worry if I put my best effort into making today the best it can be for my family. I think about how I can try harder to better myself for my family with anticipation. I try to remind myself that no one is guaranteed a tomorrow so if I am fortunate enough to open my eyes in the morning, I need to make it count. If tomorrow didn’t come for me, what can I show for it besides a list of unfinished projects? My goal is to find a way to live with our hindrances and find a way to live beyond anticipation. Can I live in manner in which my kids will know I fought for happiness? Can I teach them to strive to do something everyday to make life count for something more? Or will I hand over my life and my son’s life to disease and hoist up the white flag until death? Despite what made-up fantasy has us believe, death is harsh and unbiased. It doesn’t care if my son hasn’t had a chance to experience life, if I have four children that need me, or if we need our best friend. In the end, life is a blur of memories. Choose to make those mirrors into the past count. Don’t wait until disease or death rattles you awake. Wake up and live now. Finish the projects that have meaning and appreciate the outcome. Unlike my grandfather’s unfinished garage, our lives don’t have invoke sadness. Those unfinished projects he left may never be finished since no one could finish them as he had planned but we can appreciate what he did accomplish. I can use what I have learned from him and put the finishing touches on my life, even if it is just for today. Everything is worth the meticulous work, even my unfinished self.

*d*

More Children After the Disabled Child: Is It a Good Choice?

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When my husband and I found out that we were expecting our third child, we were very excited. One of the joys of expecting a child is sharing the news with friends and family. Unfortunately, instead of hugs and congratulations, we received critism and half-hearted blessings. It was disheartening. By the time I shared the news with my co-workers, I was in tears. This baby was making his or her way into the world and we felt very alone in our joy. The scarce number of people who were sincerely happy for us was not enough to extinguish the guilt and sorrow we were beginning to feel. It was not what I wanted or expected when announcing a pregnancy. My husband and I may have took the hard road to find each other but we had a strong marriage, probably because of it.  We had problems concieving our first child but were eventually blessed with two boys. We also worked hard to care for our family. The doubt about our third pregnancy was surrounding our disabled son. We were met with questions and disappointment as if we never considered what it meant to bring another child into the world while navigating the issues related to raising our disabled son. We were treated like the pregnancy was completely unplanned and the decision to expand our family was rash. I will never forget how the reaction put a dark cloud over my excitement.

Our disabled son was two when we conceived our third child. I was told by my doctor that we should consider having another child if it was something we may want to do in the future. I had health issues that could possibly halt a chance to get pregnant again. When faced with this information, we considered all of our options. Yes, raising a disabled child had it’s difficulties but we had decided that we wanted him to be a big brother, even before his diagnosis. We also weighed the risks and benefits to having an infant in the home. We knew we had to be careful allowing him around a baby because he didn’t fully understand how to be gentle and boundaries were something he was struggling to understand. We knew his health issues took our time and resources. We also knew the mutual benefit of having another child in our home would be for our disabled son and another child. I realized with some sorrow that a new child would most likely surpass his cognitive abilities but with that would be a chance for him to have a playmate close to his cognitive level. After discussing and weighing these risks, benefits, and more, we carefully made our decisions based on what we desired for our family. Neither of us wanted to let his disease also take away the joy of expanding our family. It had already taken so much. We didn’t want him to grow up knowing he was the reason we never had more children. How did we know he would not enjoy the company of another sibling? We didn’t. We decided  another little person would join our sometimes crazy, chaotic family and we trusted in something bigger than ourselves to help us if it became difficult. We had to ignore the nay-sayers and be happy about the decision we had made because it was best for us. I wish we would have felt supported in our decision. Instead, we were explaining why we came to this conclusion to people who really had no true understanding of our family. We felt like we were two teenagers trying to explain our unexpected pregnancy instead of a married couple announcing a joyful pregnancy. In hindsight, no one would have got the lengthy explanation we were giving, we would have asked for the respect and support we needed. We would have to let time prove we were strong enough for the challenge.

It’s three years later and we have no doubt that we made the best decison. We were also surprised with a fourth child. We had decided to stop at three and elected to have  surgery to help with my health issues. It was a week before my scheduled surgery date when our youngest daughter snuck in under the radar. We were met with the same skepticism by the same people. Yet another announcement was shrouded in gloom due to the lack of understanding. Most people waited for our reaction because they knew another baby would take more time and resources. My husband and I were once again elated to have the opportunity to bring another life into the world.  I think some people would rather try to be a voice of reason than that of support and it’s sad. Sometimes it’s needed but not in a situation such as this. No good was going to come from criticism. No matter what, the baby would arrive in several months. Sharing doubt and disappointment would only make the critics feel better about themselves. It didn’t do anything but snuff the joy out of our announcement. I would hate for anyone else to feel the way we did.

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I wrote this post because the question of having more children after a disabled child comes up in support pages often. I wanted to offer my advice and share our experience. My husband and I knew we had a strong marriage and we supported one another. We knew if no one else supported us, we were okay with our choices. We did what was right for us. We knew our son’s weaknesses and we knew bringing another child into our family was within our capability and within his capability to learn how to interact with another sibling. Our oldest daughter is now his best friend, she tells us often. She sets up his play bowling set in the hallway over and over because she knows he can’t do it himself. Sometimes he yells at her or gets aggravated but she keeps helping. They are mutually learning something from each other. She is learning tolerance and he gets a chance to socialize. My disabled son has just as much to teach us as we have to teach him. He is teaching my typical children that friendship isn’t based on ability or disability. Friendship is time spent together and learning to love differences. They look forward to doing something they enjoy together, like playing pretend bowling. I can only hope his life with us will effect our typical children in a positive way. Maybe they will choose to play with the ignored child at school that reminds them of their brother or they will stand up for intolerance because they have already been taught to meet disability with understanding. I am sad no one else could see what my husband and I did three years ago. It is sad that I will always think of the disappointment others shared instead of joy when we found out my beautiful daughters were going to be a part of our family. I have forgiven but it isn’t easily forgotten (a subject of my next post). If we had decided to stop having children, that decision would have also been made with love. We would have appreciated the same support and understanding with either decision. Being blessed with a special needs child also means taking extra care with decisions for our future. We did consider both paths before making our decision and we respect anyone who faces the same.

If you are reading this and are on the outside watching a family with a disabled child decide whether or not to welcome a new family member, be supportive. Offer an opinion only if you know the situation is dire or if the family asks your opinion. If you are a family member or friend of a strong family who decides having a baby is a good choice for them, don’t be the gray cloud lingering over the parent’s joy. Chances are, that disabled boy or girl will be a pretty awesome big brother or sister and those babies you aren’t sure about will grow up to be tolerant and loving children because of those special circumstances. There is a lot of love in a big family, especially in a big, special needs family. If you have been told that having another child is not the best choice for a special needs family, offer the same amount of support and understanding. Be a comfort if needed. Sometimes deciding to stop having children is a difficult choice and if circumstances were different, the family would love to grow their family. These parents have plenty of variables that weighed in on a their choice. It may not be the choice they envisioned but it is the best choice for them and their special needs child.

In the end, there is no cookie cutter decision that suits every family. There will always be strong opinions on the subject but families have to decide what is best for them. Bringing a child into the world after a special needs child can have good and bad points but it is a choice parents need to consider carefully. Chances are, if another child is announced in joy or a decision has been made to stop having children, they have thought about all the possibilities and it’s best to share in the joy and/or offer your support and leave the criticism for another subject.

*d*

Reply by ~L~

I know I am guilty of the knee-jerk negative reaction and I know that you know that I apologized because after I thought about it,  knew I’d hurt your feelings with my thoughtlessness. Not all people are willing to see something from someone else’s perspective but I always try to make sure I at least give it a shot. I didn’t immediately realize that I wasn’t considering it from your angle.

And you couldn’t be more right about the benefits and I know you would never need a lecture about the hardships of adding another child to a special needs family. If everyone had a disabled sibling to grow up with, the world would probably be an exponentially better place instead of the judgmental, intolerant place it can often be.

Your kids are loved immensely, taught well, and being brought up in such a way that they will be good human beings. To me, that’s what really matters.

The Rose Colored Glasses

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Beautiful is the view from rose colored glasses. The dreamy spectacles enchant the lackluster world. Nothing can spoil the view when the world is tinted in the hue of rose. Storms roll in and candy colored drops fall from the sky. Just open your arms wide to receive the gifts imparted from a world radiating a floral glow. All have worn them and all have felt immune to the world. The newly in love, the couple having their first child, or maybe newly acquired wealth. While in this transient state, nothing else matters. No words or advice can penetrate the feeling. I was there many times. It felt glorious and no one could change me. All was right with the world and I had all the answers. I only wanted to do as I wished and no one could challenge my flawed beliefs.

Time still passes when in possession of new and pretty things. The dust from the journey starts to tarnish the pretty rose glass, a few stumbles toss and scratch them, and over time, they aren’t as nice as they once were. Some people rigorously try to replace the feeling with a number of different things. Yet, time wears down beauty and life refuses to stay roseate. So when it comes, maybe it’s best to celebrate and relish in the feeling. Everyone has their time when the sun shines a little brighter, the road traveled is smooth, and the air smells as fresh as a new spring day. At this time, some plead for time to crawl. Or even stop. These are the moments that make up the most perfect of memories.  Remembering can flood you with emotions and feelings just as fresh as when it happened. When things don’t seem as splendid, these are the best moments to remember. They act as a glimmer of light when it has been too long since life looked rosy. I often like to remember a time before diagnoses, the days my children were born, or when my husband and I fell in love.

Looking back can certainly swell my heart with joy but it can also remind me of my own ignorance. I don’t like parts of the person I once was. There was a time I was so high on this feeling that I thought I had it all. I had all the answers and I didn’t need anyone’s help. I was ignorant to the people closest to me and that had to change. The only unacceptable ignorance is the ignorance that refuses to be changed and I was full of it. I thought I knew more than people with a lifetime of experience, I had strong opinions of many things with no personal experience , and the only things that mattered were the ones that surrounded my life. I allowed myself to boast but was unable to look past the end of my nose. I had fallen from my perch many times and usually walked away unscathed. I had to take a few big falls before I finally broke. There were times I couldn’t get up. I spent a lot of time kneeling at my broken life, trying to put the pieces back together. Some parts of it are still not put together.

A lot of people pass along wisdom during times of tribulation. Many people quote the saying, “God doesn’t give you more than you can handle.” The more hardships I experience, the less I like this quote. I know I have been given more than I have been able to handle. This quote has made me feel inadequate. Where was this strength equal to the turmoil I was facing? Why was it so hard to pick up the pieces of my rose colored life? I was broken down until I was folded over with my face resting on my dusty hands. There was nothing left but to lay down my ignorance and plead for help. I think we will all be given more than we can handle alone. There are times we must silence ourselves, kneel down, and ask for help. I have replaced this saying with one of my own, “God will give you more than you can handle because breaking you down is the only way He can get you to kneel.”

In those most dismal moments you can choose to desperately hold on to the beauty that is slipping away or you can kneel. You can cling to the ignorance that refuses to change or give up your turn peering through the glass and find something deeper. The only way I was going to learn was to be broken.  I wasn’t changing any other way. Something terrible would occur, I would reflect and realize I needed to change. Time would pass and I began to forget. I would forget the gifts suffering allowed me and went back to my old ways. I was stubborn and it took a lot to change me. I only wanted to be happy when I was peering through the rose colored glasses. It was easier that way. These days, I try to find happiness even when I am broken and dirty from the journey. I admit, it can sometimes take effort searching for a reason to be happy. That’s when relying on those reaching out to help and something bigger than yourself is worth it.

The world can give us many reasons to lose hope. Several years ago I wanted to change everything in my life. I wanted to move, find another job, and start over. I had lost hope in other people. My plans changed when my son was diagnosed. Those same people I thought I lost hope in began to reach out to my family. I found the love and compassion I had feared was lost in this world and it took my own devastation to see it. Disparity is not the end of happiness but possibly the best way to find it in the most unlikely way.

*d*

Filling In The Blank

It feels like the harder I try to figure out what my next move should be, the more entrenched in confusion and frustration I become. Do I keep cleaning houses and writing, working to get published, or do I throw myself into a small business venture, expanding and promoting my cleaning services and give up some of my writing time, or do I get an unrelated job and put the writing on a back burner, or…

I have this vision of where I want to be, but it’s like I’m looking at it from across a bottomless chasm; I’m on one side and my dream life is on the other. The most frustrating part is that I could build a bridge but I don’t have the materials or tools, my education seemingly a hammer made of cardboard, a nail gun spitting marshmallows. So, I stand there, looking down, kicking pebbles over the edge and getting more and more pissed at myself.

I remember a particular crossroad of the past that was annoyingly similar to the one I stand at today. When I was growing up, I didn’t have a clue what I wanted to be. Looking back now, I don’t recall ever telling anyone “I want to be a _________ when I grow up.” It could be all that Candy Crush I’ve played, or the numerous drowse-inducing pills I take, but I seriously don’t remember aspiring to be anything. When I got to high school and it was expected that I figure out what I would make out my life and study at college, I scrambled to come up with something to placate my guidance counselor, my friends, my family. I’d always loved Science, particularly Biology and Anatomy as well as animals. I’d also always thought I might like a surplus of money, so I opted to study Biology and then move on to a veterinary program. It made sense to my logical side, to the bookish girl graduating sixth in her class, to my pushy guidance counselor. But when it came time to apply, I balked. I’ve always blamed the severe clinical depression I experienced my senior year, but maybe it was more than that keeping me from wanting to run off to college the fall after high school ended. Maybe I realized that wasn’t where my passion lay.

If I had been paying attention, my path was more obvious than dumping that ridiculous boy I dated when I was sixteen who wore his two inches of hair slicked and pulled back into a tiny ponytail and told me his uncle was in the Chicago Mafia. As long as I could, I’d been writing. As a child, I wrote stories on wide ruled loose leaf, tying the pages together with yarn and doing my own illustrations. I read the classics—and loved them. I memorized Robert Frost’s “Nothing Gold Can Stay” when I read it in The Outsiders. I’ve always been the person my friends ask to proofread their papers. I was asked to join the Quiz Bowl Team in eighth grade because of my affinity for literature. I spent the summer between seventh and eighth grade in my room writing a novel length piece I eventually reread and ended up scrapping. The signs were always there as to what was in my heart.

I went to college two years later than most of my classmates and I began a Bio degree, still refusing to acknowledge the obvious. I was about a year and a half into school and taking a Genetics class I was figuring on failing. That subject had been my weak spot in high school as well. I was thinking a lot about the choices I’d made. The same time I was starting college, I was moving out for the first time. I was working part time and studying some of the most difficult information I’d ever read. In lab, I had to mingle with my fellow Bio majors, Chemistry, Anatomy, and various other science majors.

We were doing a lab that involved fingerprinting and my lab partner couldn’t get her prints to be anything but smudges. I may have made a joke that insinuated that she’d rubbed her prints off with excessive biblical-ish knowledge of the male nether region. She may have given me the nastiest look anyone’s ever shot my direction.

At any rate, I realized I didn’t fit in with these doctors-in-the-making. It was that feeling coupled with my sinking grade in Genetics that pushed me to make a change.

After years of thinking that my writing was just for fun, I decided to make it my life. It wasn’t an easy decision. I knew I would be forfeiting my employability, mostly because I had no intentions of pursuing a career in teaching. That had to be the first question anyone would ask me after they learned that I was an English major. The. Same. Question. Every. Time.

“So, you’re going to be a teacher?” they’d ask.

“No. I’m going to write books. Maybe work for a publisher. You know?” I’d reply.

And no, they didn’t know. And apparently, neither did I. While I did write a book, the chance to work for a publisher sailed away when I decided to stay in my recession-battered state, in a county where opportunities go to die. I have stayed because my family needs me and I’ve always seen this as my home. Also, I used to think I could never leave because of the friendships I’d forged over a lifetime. Not anymore. Amidst the self-discovery involved in pursuing this fire burning in my core, I’ve also come to understand that support is hard to come by. Writing is a career of a different color in that you can’t excel at it on your own. Well, most of us can’t. We rely on the knowledge of others and their opinions to make us better. In the beginning stage it’s family and friends and later it becomes agents, publishers, and editors. It’s hard to get to that later stage when you’ve been let down in the beginning.

So, my current crossroad is not only whether I stay and clean or stay and write but whether I stay at all. The opportunity exists to go anywhere. My husband is in a high demand occupation and it wouldn’t be difficult for him to land something he loves virtually anywhere. The fear of leaving behind everything I know is fading with every frustrating day. I’m to the point where loading up my grandma and my mom like The Beverly Hillbillies is not completely beyond the realm of possibility. At least then I’d be making a choice. With that choice, I’d finally have the opportunity to construct my bridge and get over that canyon that lies between me and what fills my dreams.

~L~