Monthly Archives: July 2012

Checked Baggage

by SuperDebby, Everybody’s Boy

At some point in recent history I decided to take my life back.

I can’t pinpoint when it was.  It wasn’t some epiphanial moment that I will regale young whippersnappers with in my old age.  In fact, it wasn’t a moment at all.  It was the culmination of thousands of moments, and born out of an innate desire for self-preservation.  What’s more is that I’m not “all better.”   I just am.

You have to understand that for some time now I have teetered on the precipice of  shear disaster.

It doesn’t do anyone any good for me to recount publicly the transgressions I’ve encountered in my 34 years.  I imagine I have lived a lot more than some, yet a lot less than others.  What’s important is my reality and how I’ve coped.  Which, depending on where you would rate such encountered transgressions on the “horrible, terrible” scale, is either amazingly horrible or absolutely terrible.   I’d like to believe that experience brought me growth for the most part, with a side of baggage.

Baggage like an eating disorder, an anxiety disorder, post traumatic stress disorder…and possibly some other “disorders” remaining to be unearthed.

Experience also brought me to understand my fragility, and appreciate my strengths.

It’s true that I jump every time I hear an unexpected loud noise.  Or that after 8 years my husband cannot approach me from behind without warning (and even then I still scream bloody murder at least 70 percent of the time).   Yes, I have foods that are “safe” and foods that are “forbidden”, even though the scale said I passed “recovery” about 60 pounds ago.  I chronically apologize for my very existence, always assume that I am wrong in any situation, and have spent much of my life harming myself physically and emotionally.  My anxiety keeps me awake a night, worrying about how I might have failed any number of people, and what egregious acts I might commit in the future.  I need medication to function in this world. Sometimes I cannot find the emotional energy to keep a dinner date with an old friend or put away the laundry that my husband washed and folded and instead find myself taking long afternoon naps seeking respite in a few hours without worry.  Even then, the memories, the anxiety, the fear sneak into my dreams forcing me to reconcile whatever it might be that I’ve fought so hard to cleanly compartmentalize.

It is incredibly lonely and miserable when your mind and body revolt against you.  Especially when you can’t reconcile a purpose.  I believe, at least in part, that I must experience these things because otherwise how could I possibly understand and champion my son?

No one is without gifts, however.  In fact, our weaknesses are often the very same things that help us towards greatness.

This is the realization that I had, when I decided to take my life back.

Without those encountered transgressions I doubt I would hold this passion to save my little piece of the world.

I don’t think I’d have the empathy to embrace another’s story without judgement, the patience to raise a child with Autism in a nurturing environment, the resilience to take continuous hard knocks and keep going, or the resourcefulness to make a path for myself and others.

So there it is, I guess.  There is my non-epiphany.  There is no black and white.  There is no sick or well.  There is only me taking responsibility and control for my very own journey.

There is beauty in dysfunction.  There is dysfunction in beauty.

Whatever it is today or turns out to be;  it is mine.

I took it back.

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Debby is a freelance writer living with her husband and only child (Everybody’s Boy) in North Carolina.  She is active in her community as an advocate for individuals who have Autism or who are otherwise “differently-abled.”  Debby works in the nonprofit sector, providing supports to maximize inclusion for individuals and their family members with developmental disabilities.  She aspires to practice the principles of yoga, but still finds it impossible to stifle a giggle when confronted with the term “downward facing dog”.  Debby is fluent in English, Frenglish, Spanglish and International Sarcasm and her special talents include the ability to eat practically any food with chopsticks, talking her way out of overdraft charges and telling pretentious stories about when she used to live “abroad”.

This post was originally published HERE and used with permission.

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Filed under Remembering to Breathe, Taking the next step

Stress and The Special Needs Mama

by Momma Kate, Created BEAUTIFULLY Special

Have you ever had one of those moments where your mouth falls open and you have to pick your jaw up off the floor? I had that very thing happen today. While I was having a rare ‘spa moment’…let me clarify…I was at the chiropractor to have my neck put back in to place, my doctor, who I’ve seen for 15 years, says to me, ‘You have stress in your life, don’t you?’. I replied, ‘Maybe a little…..’. He was pulling my chain. He knows what my life as a special needs parent consists of. Apparently, the areas in my body that were showing the most signs of needing attention were my neck, shoulders and head. Cue the tension headache. That leads me to address this area of ‘stress’ in our lives. Every single person has it. Let me make myself loud and clear. I know that the entire human race, special needs parent or typical parent, carries quite a load. Here, I want to focus on us special needs parents. To cover all the areas, lets break it down into sections.
First stop, Physical Stress. There are so many different ways that we have to care for our kiddos. Everything from lifting, changing diapers, dressing, bathing, feedings, giving meds, fighting sensory meltdowns, learning new medical treatments, daily therapy regimens, extra laundry, countless appointments, hospital stays, the average 2-4 hours of sleep every night for years on end….and the list goes on. Our bodies show the wear and tear of this schedule being repeated day in and day out. It’s inevitable! However, the duties that incur stress don’t stop here.

Let’s move on to the Mental Stress. Please tell me I am not the only one whose brain NEVER stops. The thoughts at 1am…. ‘I need to call Neurology in the morning to make sure that the Physical Medicine doc knows what the Developmental Pediatrician said yesterday.’, ‘I need to get that script moving for the Occupational Therapy.’, ‘Oh dear God, another surgery? Guess I should start taking care of….’. The ‘To Do’ list go on and on and on. We live and breathe the medical terms, diagnosis, meds, reactions, new docs, etc. We do things we don’t even know we do! We are subconsciously watching every single move, breath, swallow, and diaper, because at any given moment, we will be thrown for another loop, be in the Emergency Room, and the doctor will want to know the minute by minute detail of the last 24 hours. That includes what our child does while sleeping…..

How about the Emotional Stress? Yes, I will admit, I do cry in the shower. I try very hard to contain it there, because I don’t want Boo to think I’m upset about her. Sometimes though, Momma needs a good cry. Let’s face it, we are talking about life-threatening situations not just every now and then, but daily. Whether it’s a serious medical crisis or a sensory meltdown that propels your child to run from you in the parking lot, your emotions and body are always on guard. Add in what other people think about what you are doing…. you might as well call it a day!

Anyone have Marital Stress? First off, let me say that I absolutely adore my husband. I married the man because I not only love him, but I like the person he is. Yet, I am so drained by the time I get alone with him, that I come across grumpy and short because the only thing running through my mind is, ‘Get me to my pillow so I can get just a little sleep’. In our 6 years of being parents, we have been alone maybe 4 nights. Usually, once we are completely alone, we zonk out! We are both so drained from the day in and day out of special needs caregiving, that we snuggle down in and saw logs! There are some areas that we try to do daily, weekly, monthly…  We try to laugh a little and tell each other, ‘I Love You’ every day. To know that even in the midst of this craziness, we are still important to the other. At night, when all is quiet… at 10p or 12a, we sit on the couch and snuggle to a comedic tv show. Something that takes our brains to a lighter level. We are working very hard at trying to get one meal a month, just the 2 of us. No kids, just the 2 of us on a ummmm….what is that? A DATE! Yes! Sorry, I still get butterflies.
If you are like me, you also have other children who need a Momma too! They are just as important and need to be held, listened to, and encouraged. When the heck to you have time to clean, do laundry, grocery shop, weed the flower beds……my time is usually between 9:30p and 2a. When I want to be with my hubby or sleeping. See, you are not alone!!!!! It is a seemingly impossible situation that we live in!

I want to take a second to chat with those of you who are on the outside looking in. Maybe you are a grandparent or a friend to someone who has a special little kiddo. I hear often that people don’t know how to help or what to do. Listen to me loud and clear. It’s little things that mean the world to us. Drop off a meal, but be sure to know if there are adjusted diets. Offer to come and clean the toilet, mop the floor, make the beds, fold some laundry, any little quick job that helps us ‘feel’ better. Give an hour of your time for whatever we may need. Send a card of encouragement. Call and see if there are some grocery items that need picked up. Run thru Starbucks and get Momma her favorite drink…odds are, we haven’t had one in ages. Realize that we may not be able to talk on the phone due to our daily routine, but we thrive on adult conversations. Stop by, and just chat about something besides medical terms. We are still people on the inside that are getting buried by this life we live. In stopping by, please don’t judge our house, appearance, or expect us to wait on you hand and foot. Our world never stops, so those around us need to be willing to hop on the ‘treadmill’ and walk a mile in our shoes. Most of us have no life outside of Special Needs. That is the truth. We are not ignoring you. We are simply immersed into giving our child(ren) the most normal life possible. Things that  the world takes for granted. Please, be understanding and for a moment, learn what it’s like and put yourself in our position. We need you like you need us.
Mommas, my doctor reminded me today, what we have all heard a million times. You can’t give to those around you unless you have given to yourself. He encouraged me to take 5 minutes a day to recharge. Close your eyes and breathe. Read a chapter in a book. Pray. Paint your nails. Listen to a song. You have read those articles that talk about our stress levels being comparable to combat soldiers, right? Shaving somewhere between 5-15 years off of our life expectancy. You are worth this. Your family needs you. Start right now. Give yourself some air and remember, that you have been Created BEAUTIFULLY Special.

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I am an almost 30 year old SAHM with 3 kiddos and am married to my prince charming. I quickly learned that life would not go according as planned when our first child was born with Cerebral Palsy. Now, at the age of 6, our little girl has almost 20 separate diagnosis and is our miracle baby. The doctors didn’t expect her to live past her first birthday, but she has proven them all wrong. ‘Created BEAUTIFULLY Special‘ was born in my heart to show what the special needs journey is really about and to showcase individual kiddos beating the odds.

This post was originally published HERE and used with permission.

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Taking Care of Me

by tenaciouscee

It’s been a really long time since I’ve felt like writing. There has been so much going on, too many emotions, ridiculous amounts of stress that I finally realized I’ve been completely neglectful when it comes to taking care of myself.
Today, I decided that needed to change. Immediately.

The summer has been challenging to say the least. Between my son’s sensory dysregulation, my daughter graduating grade school, and miserable back to back heat waves, my whole family has been feeling the pressure.

This morning after returning home from camp drop off I made a conscious decision to abort any productive plans I had in lieu of spending quality time with myself. I deserved it, I thought.

It started with some puppy love. Just sitting on the sofa and snuggling the two furry, loyal critters in this house who don’t talk back.

Then I decided to make breakfast. Not an eatoverthesinkoutofthepoticookedwith kind of breakfast, but a real meal eaten on real china at the dining table. You know, like a civilized human being.

Something remarkable happened… I enjoyed a meal in peace. I turned on some music before I sat down and spent Ten! Whole! Minutes! to eat my food while it was still hot. I even put the fork down between bites! I know that’s something that I haven’t done in years. I’m always rushing through my meal in a desperate attempt to finish it before the next kid related crisis occurs. It was a wonderful experience. I actually tasted what I was eating for the first time in ages.

When I had finished my breakfast I not only felt like I had nourished my body, but my soul as well.

In the tiny amount of time I spent taking care of me, I discovered that I don’t always have to feel like a cranky, stressed out mom. I deserve to feel important in my own life. I needed this time to just…breathe.

When it was time to pick my children up from camp, I felt like I had taken a mini vacation. I actually felt…calm. The frazzled woman at drop off had been replaced by a happy and rejuvenated mama.

We ALL deserve a little “me” time. Find just ten minutes a week if that’s all you can spare and take care of YOU. Its so easy to forget yourself in the daily shuffle of a busy life but if mama is broken, so is every single thing around her.

What are you waiting for? Go find your ten minutes and take care of YOU!

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This post was originally published HERE and used with permission.

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Filed under Remembering to Breathe, Taking the next step