Life
Beautiful as a Flower
I love my flowerbed. Around March, I get excited about the endless planting possibilities. My favorite color is pink so I usually find a variety of shades and flowers in my favorite color. As much as I adore the color pink, I also know I can improve upon my flowerbed master piece if I added a few complimentary colors. With creativity fueling my spring time thoughts I forget one thing, I don’t live alone. I have five other people who may interject their opinions and since I want to teach my children to share, I must also share. “Darn it!”
This year when I went to the store where I wanted to purchase the perfect pieces to my creation, the kids also came along. If you have ever been shopping with a kid, you know they either want to buy or help pick something out. On this trip, they wanted to put their favorite picks in the flowerbed and plant them themselves. My oldest daughter won over my heart as she asked to plant additional pink flowers. My oldest son decided he wanted orange marigolds. I don’t like marigolds. It isn’t that I don’t like seeing them, I just don’t like seeing them in my flowerbeds. He wanted the dark orange, as to exclaim, “These are mine!”.
“Darn those orange flowers,” I thought. “Why wasn’t his favorite color green like it once was?” I knew how important this was to all of them so I needed to let go and find a way to make us all happy. Then I remembered something about myself.
While planning my wedding ten years ago my husband and I went to a department store to add items to our registry. The woman helping us was probably old enough to be a grandmother. She was sweet like one until she asked us if we wanted to register towels. I was reluctant as we had already purchased towels for the apartment we would share after the wedding. After some pushing, she won over the approval of my husband to register towels. She then inquired of us what colors we were using in our wedding decor. When I answered, “none,” she got annoyed. I explained that I had seven bridesmaids with seven different colored dresses and I used several different shades of pink for the bouquets. She made me feel like a criminal for not conforming to tradition. I wasn’t going to change because she disapproved. And with that, I registered every variety of color towel I could find.
My son was like his mother, different and not bending to conformity. I planted his flowers next to the walkway leading to our house, they look beautiful. I see how they pop out and exclaim, “Different is beautiful!”
Think about the sky. On most occasions it’s blue or maybe gray, but at sunset, it is sometimes painted in brilliant colors. Hills and roadways can be lined with vivid wildflowers. These are most picturesque, and yet, they are naturally occurring in nature. My favorite is seeing tiny infants grow into unique individuals with distinct personalities. Nature is beautiful because it is different, and so are we. Whose standard are we comparing ourselves to anyway? Do we really all want the same hair, skin, and shape? That would be like me missing out on the surprising beauty in contrast I found in my little flowerbed and it only took a simple change of heart for me to truly enjoy it.
*d*
P.S. After my grandfather passed away, I framed a picture of he and my grandmother’s wedding. She had four bridesmaids in four different colors. I guess I take after someone too.
A Very Happy Birthday Little Buddy
It’s a quarter till eight in the evening and three of my children surround my husband in our living room. Each are taking turns blowing out a birthday candle and singing the Birthday Song. My special needs son is singing his very best version of the song and inserting various family member’s names into the chorus. No one is celebrating a birthday today, no one is celebrating a birthday this week but we are celebrating.
My son has struggled with autism for the last five years. For the first two years after his primary diagnosis, he was not diagnosed with autism despite his self-injurous behavior. As he grew, additional autistic behaviors became more evident. It was clear he was having a hard time dealing with the world around him. From a terrible experience at Disney World to family gatherings, he was unable to tolerate loud noises and crowds. Birthday parties were the worst, even his own. He didn’t like singing or clapping and the appearance of a birthday cake sent his anxiety skyrocketing. We decided after many attempts to encourage him to participate, we would leave the room with him during the singing and blowing out of the candles. It was hard for some family members to understand this when we celebrated his birthdays but we found other ways to acknowledge his special day.
Since the addition of a new medication to treat his disease, we have slowly seen developmental progress. He has been on it for over two years and his language has improved, he has gained some understanding of the world around him, and he has been able to tolerate noise and crowds much better. We will never be able to redo our vacation…. but we can help him enjoy those experiences he once missed out on.
Last Christmas my son was six and it was the most amazing Christmas with him yet. He was interested in opening gifts where he hadn’t been before, he was excited about the Christmas lights, and he was able to sing us numerous songs he learned at school. It was a holiday of many celebrations. We also noticed he began to enjoy birthday parties and we were stunned when he refused to leave the room for the birthday song. We expected tension and got excitement. So on his seventh birthday, one he shares with one of his little sisters, we made up for the previous years. He was very excited to open gifts on his own, socialize with family, and blow out the birthday candles after singing the Birthday Song. We sung and blew out the candle six times. He was excited each time.
Disability can take these kind of moments away, little moments most people may take for granted. Experiencing these once seemingly unobtainable moments is where I find joy. I cried when I watched him independently write his name, watched in amazement as he sat peacefully playing with toys he has never touched, felt my heart jump in excitement as he ran upstairs to get the Barbie car out of his sisters’ room so he could play with them. It’s those moments when I can let go of the worry and see the little boy under the disease. It’s the little boy who likes the color purple, who loves trucks (he was recently able to verbalize this to me), enjoys watching and playing bowling, loves everything Barbie, and is wonderful just the way he is. It’s time for the world to stop pointing out the same mundane differences. Experiencing deep joy with someone usually happens when we accept and celebrate one another just the way we are, even if it means celebrating the little things that give us that joy together. Happy birthday little buddy!
*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.
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~
The Road of Suffering and Honesty
There have been plenty of times when I have wished I could be someone else. This usually happens when the “envy monster” whispers in my ear, “Look who has it better than you,” or “They have it all!” and I get the feeling in the pit of my stomach that groans about how life has been unfair to me. It’s hard when I hear when these same people have purchased a new car or won the lottery and the only “lottery” I feel we have won is that of incurable and obscure diseases. While other parents think about vacations, taking kids to practice, and play dates, we may never afford future vacations, I am often debilitated due to my Rheumatoid Arthritis, and I have to consider my son’s medical and behavioral issues if the rare opportunity for a play date arises. I think about illnesses every day. It is consuming and it eats away at my me. Bit by bit, the worry, guilt, and fatigue has at times compiled into depression. It would seem happiness is far fetched on the uphill battle we often face, but it isn’t. I can affirm that I have experienced envy, guilt, anxiety, depression, and sadness at the hands of multiple diseases. They have robbed me of sleep, peace of mind, and the luxury of quick decisions. Everything in our life has to be carefully thought out and planned. Life is lived one day at a time and we are sometimes barely getting through the day. So why am I so happy?
For one, I live by faith and believe my life has a greater purpose. I believe I have learned to be a better person through all of my suffering. Suffering is inevitable and to many, suffering is pointless but I dare you to consider the contrary. I have had a better look at the lives of others who have suffered around me by experiencing the same. I was ignorant and there was so much I didn’t understand until I also had to experience my life at it’s lowest. It was from the bottom where I could appreciate the strength of people who were experiencing great difficulty. It was also there where I became more aware of my weaknesses and failures and desired to be a better person. I learned how to find strength and happiness in the face of adversity.
It sounds simple but I no longer hold myself to an unrealistic standard. I allow myself to feel envy, sadness, and heartache and it doesn’t make me a bad person. Too often, I feel like I have to live up to some ridiculous, unspoken standard that says I have to be happy, or at least pretend to be happy all the time. I don’t. Life has been unfair, other people do seem have it better, and there are numerous health issues in my family. The pain is real so shouldn’t the acknowledgement of my own feelings also be real? Once I decided this, I also stopped sugar-coating my response to the question, “How are you?” I give an honest answer and if someone didn’t really want to know, they will not likely ask again. When did it become necessary to omit difficulty out of normal conversation? Difficulty is a part of life. Why should I feel guilty about talking honestly about my life?
I have also put unnecessary guilt to rest. I have spent too much time feeling guilty about things I could not prevent or did not cause. Guilt by its own definition should only be felt when one purposefully does something in contrary to what he or she knows is right. Trying my best is not something I should feel guilty about. Life should not be based on hypothetical scenarios that can’t changed. What’s the point? I also stopped feeling guilty about what I could not do. If life demands that I leave the laundry pile up and the house remain dirty, so be it. My house and my laundry will wait for another day.
On that note, I stopped telling myself that I had to maintain the perfect image. I made myself crazy cleaning house, painting walls, and making everything around me look perfect when I was falling apart on the inside. Yes, sometimes having other areas of my life in order helps me feel better but it should never take priority over my own or the children’s needs.
Lastly, I remind myself that everyone is struggling with something, even those people I envy and people like me who try to maintain that perfect appearance on the outside. Honesty can be very freeing. I appreciate those who are also honest when I ask, “How are you doing?” It helps to know I’m not walking the difficult road alone.
*d*
That Different Spark
It was dark at my parent’s rural home. My children were watching the sky and waiting to spy fireworks lighting up the sky in multiple directions. “What little town or home would the fireworks come from next,” they’d wonder. The discovery was made simultaneously with excitement. While they watched in anticipation, I watched them. Each child responded in a different way. One would stand at the edge of the cornfield and wait, another was snuggled quietly next to my mom, yet another would yell out in excitement while the last sat close to daddy.
It was hard for all my children to wait. While we waited for the sun to fade, two of my children were brave enough to play with sparklers. It took time for both to grab one, one being more enthusiastic about the bravery than the other. Both amazed by what they held in their hand. When the sun finally faded, all the children got chilly. My mom brought out blankets and jackets and all but one could sit still long enough to get warm. This same child is notorious for an endless amount of energy, especially at bedtime. I can count on putting this little ball of energy back in bed numerous times and expect some fatigue induced mood swings and behavioral issues in the morning.
My husband and I know two of our four children are predispositioned to be an early bird like him. My other early bird was sitting on my lap. All was quiet until another round of fireworks went off and then an, “Ooooohhhh,” would be followed by a dart out of my lap while pointing to the sky. This was followed by, “Try again!” when sky darkened again. This was such an exciting night that we knew this little early bird would be asking for fireworks the rest of the weekend. Maybe the allure of more fireworks would be enough to convince this enthusiast not to pick on the other three siblings while riding in the van the rest of the weekend.
From the other side of my mom came a monolog of all the colors that were filling up the sky, an emphasis on favorites. This little one stayed in the chair once the fireworks began as not miss a single one. This was a nice change of pace from a week speckled with tantrums and struggles to share mommy’s attention with others.
The last of my four was taking a break from an overzealous curiosity that often finds trouble. Nothing is too big or too small for this one, but tonight, the quiet air was surprisingly soothing and not a sound was heard. Those curious eyes were busy watching.
To an onlooker, we would have been the picture of the perfect family. I could have snapped a photo and posted it on social media proudly boasting of my perfect family. Those who may not know our family well enough just might believe it. A picture doesn’t always speak a thousand words, most of the time they can be deceiving. One my four children has an incurable disease called Tuberous Sclerosis Complex. He is severely effected by this disease and because of this, he also has epilepsy, autism, and intermittent explosive disorder. Could you tell which of my four children this is by my story? If you were an onlooker, I bet you wouldn’t have been able to tell. Differences are a matter of perspective. We can look perfect from the outside or in a photograph, but hiding our differences on the inside. Our beauty can also be overlooked because of superficial differences on the outside. Exclusion based on either denies one the opportunity to realize beauty isn’t defined by conformity.
Imagine this scene at the grocery store; a mother is there with her four children. One of the children begins to cry and becomes emotionally distressed. Do you give a disapproving glance? Or do you give her grace? That mom could be me and your answer says more about you than my job as a mother. How do you know if it’s my autistic child struggling with neurological issues? Or one of my other three over tired and too young to understand their emotions? You don’t know and I won’t tell you.
Like those many fireworks that filled up the sky, each are different and made of different colors, shapes, and designs. We enjoyed the ones that silently appeared before us and those that made “boom” at their arrival. How mundane would life be without our differences? We knew nothing about the inner-workings of fireworks, but we are smart enough to see them for what they are, just as we should see everyone, beautiful and bright. We are all meant to fill up the darkness of life with different colors, noises, and design. Think of that the next time you lift your face to the dark sky.
*d*
Replace Guilt With Determination
Confessions of a Special Needs Mom
When my children were born, I wish I was also handed a guidebook to each one. “It’s a boy and here is the complete guide to (insert child’s name here).” The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child. No doubt my special needs child would need at least three manuals. One for his primary diagnosis, one for autism, and one for epilepsy. I would also need some additional emergency booklets labeled, “What Kind of Seizure is This?”, “Why He Won’t Eat,” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist. Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my special needs child. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard to for me to be honest about the mistakes I have made as a parent.
I have made assumptions on the behalf of my child. There have been times that I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist that he does something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.
I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know that I am strong enough to handle whatever might happen.
I have underestimated his abilities. Sadly, I had already determined that he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations and he can independently write his name.
I have played out his worst case scenario. Instead of thinking that he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can but again, I should not set limits on his potential.
I have distanced myself from him. I know this is normal but I have taken his outbursts toward me personally. I frequently forget that he is at the mercy of his disease and the side-effects of multiple medications.
I don’t always let him fight his own battles. I am guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.
I talk about him as if he isn’t in the room. This is something that I promised myself I’d never do. I can’t assume to know that he does not understand what I am saying. I have to be careful not to make him feel like we are not including him in conversations.
I have not always been patient with him. Patience comes with practice and I have had plenty of opportunities to practice it.
I also have failed to be consistent with the way I handle things. I have not always stood my ground when he demands something in an inappropriate manner.
He needs structure and I have not always provided it. Sticking to a routine is hard for me. I have three other children and my special needs son sometimes feels like two kids rather than one. It is easy to get overwhelmed.
I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what is necessary.
I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.
I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.
I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase or we do a medicine change and he regresses. It is hard to keep trying when we have to keep going back to square one.
I have failed to see the bond our difficulty has formed. Adversity really does strengthen a bond. We have been through a lot together and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.
I have been a “helicopter” mom. There are times that I would sit on his shoulder if I could.
I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t raise a special needs child. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.
I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.
I have to keep reminding myself that his age on the outside does not match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.
I am overly emotional. I know it is hard for other people to understand why it is a big deal when he independently wrote his name or put together a complete sentence but it is for us. Learning is often an uphill battle for him and we celebrate his victories.
My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly, that may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means that I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder, and give him the best of me.
*d*
The Rose Colored Glasses
This is one of my favorite posts….
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…
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I Can No Longer Deny It…….
Getting older is inevitable, maturity is not. It seems a bit sad when maturity catches up with age and there is no longer denying the fact that……. I’m getting older. In fact, I can remember my parents being my age. What happened?
I remember when I started watching the news instead of cartoons in the morning. I stubbornly held on to my childhood routine well into my twenties. It was when I took a new job that I began watching the news for the weather report. My commute one way to and from work went from five minutes to forty-five and I wanted to be prepared. What happened to living by the seat of my pants? What happened to rash decision making? Why did I agree to take a job with such a long commute? I wanted the experience but I mostly wanted more money. No twenty-something can resist the allure of more money.
My list of items I buy with money has certainly changed in fifteen years. When I was a twenty-something, I bought a video game system with some extra money (yeah, what’s that, right?) I had acquired. More recently, I had a conversation with my husband before our ten year anniversary. We were talking about what we would like to do to celebrate our anniversary. I said, “If I had a choice between spending a night away and replacing the kitchen carpet with flooring I can actually clean, give me the flooring!!” I wondered if I had hit my head. That’s what I said and I meant it. Yes, we have been dreaming of a night away from home forever…… one good night’s sleep, a quiet room…… and it sounded dreamy but being able to actually clean my kitchen floor sounded even more exciting. Our anniversary was almost three months ago and we haven’t been out to celebrate. And no, I don’t have a new floor. It seems as if that newly acquired money hasn’t made its arrival. Instead we gave each other a card and winked as we passed each other in the bathroom. That’s real excitement and I have been having plenty of it. I was excited to get my mail and find coupons from the local grocery store, I got 20% more of my favorite cereal in this last box, my mom gave me some clothes she could no longer wear, and (drum-roll, please) I found another box of panty liners in my cupboard that I forgot I had. “Oh yeah!”
Despite the obvious change in the things I get excited about, I still feel like I have recently graduated from high school. Over fifteen years span between my imagination and reality. I don’t feel old enough to have four kids and it scares me to think that I am shaping their childhood when I feel like I am not that far away from my own. My parents and every other “old” person was right when they told me that life moves too fast. Now I am that “old” person saying the same to my kids. Guess what? They are giving me same look I gave my parents when they offered advice. It’s that face that says, “Ummmmm, okay Mom….”
So I have resigned to the fact that I’m now “old.” The only comfort I have in the fact that I will be forty in five short years is knowing my husband will be fifty in six (sorry babe). I like the news for more than just the weather, I get nervous thinking about those roller coasters I once loved, I don’t like it when my kids climb too high in a tree, I’d rather watch a movie at home, I have a hard time recovering from a night where I was awake past midnight, and many more truths I can’t quite admit…… just yet……. Life definitely gets better with age, it’s too bad those “darn kids” don’t realize it.
*d*
PS – My favorite cereal is Lucky Charms and I still insist on putting chocolate syrup in my white milk. I’m stubbornly sticking to those habits, for now…..
Reply by ~L~
*d*, I can’t even tell you how often I think about this same Twilight Zone feeling. I don’t feel like I’m an adult. I wonder sometimes when or if I ever will. Maybe that’s another reason, on my long list, why I don’t have kids. For the same reason as you state above! I’m not in any shape to be teaching someone else how to live! Eeek! Frightening.
CrossRoadTrippers 