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In Which I Tell Satan To Go To Hell

by | Sep 10, 2016 | Anxiety, Brain Injury, Compassion, Faith, Family, Fear, Feelings, Hope, How To Cope With Post-Traumatic Stress Disorder, Love, Post-Traumatic Stress Disorder | 4 comments

What a difference a year can make.

July 19, 2009 will always be an important date in our families personal history book.  To most this day passes without a second glance, but to us, today will always be the day God saved our son.

The emotional roller coaster of this day has not even come full-circle, the accident happened at 7PM.  And yet, before 9AM I have felt joy, peace, fear, sadness, anxiety, hope, reassurance and love.

And, I’ve told Satan to go to Hell.

Because today, friends, is about celebrating life & all that it has to offer.

The fear and anxiety that Satan is calling me to feel will not overpower the joy and celebration of this day. There are many forts to build and pools to swim, trees to climb, and playgrounds to discover. We do not have time to waste on worry.

There is too much life to be lived.

Last night, as Bubs slept, I crept into his room and I knelt down beside his bed. There, I gently stroked his chest and legs & I prayed and cried and thanked the Lord.

I thanked Him for:

  • his strong frame that held the heavy weight of that 800 pound golf cart
  • his wherewithal to hold that beautiful head up as the cart drug him along the concrete earth
  • his tiny bones that may have bent and broke but held it all together, somehow
  • for the neighbors who rushed to help my family in those moments before the paramedics arrived
  • for the paramedics who worked swiftly and kindly with my little fragile son
  • for the pilot that drove the helicopter carefully and without haste
  • the doctor’s that worked through the night to repair his tattered, broken body
  • for the nurses that healed my family as much as they healed Bubs during his time in Children’s Hospital
  • for the gift of medicine, that allowed our sleepless son to rest, and be relieved of pain, long enough to heal his bones and build up his energy to fight again the next day.

And then I thanked him for our gift of friendship. My, how we’ve been blessed.  The old saying is true, you really don’t know who your friends are, until you need them. And Lord, when we needed friends, you showed us in overwhelming numbers. You gave us an emergency room full of love and prayer. You filled the waiting room for countless hours while we waited for the doctors to tell us the surgery was complete. You sent visitors and toys and prayers and hugs.

You sent tiny angels Lord, and we have seen Your face.

I will never forget the faces as I entered that emergency room.  Their concern and worry wrinkled over their knitted brows. Most of them looked like they had been praying for hours, deep in communication with their Lord. Some of their eyes fell as they saw me wheeled through the room – they didn’t want me to see them crying. They are a force to be reckoned with – those prayer warriors.

I will never forget looking around as they rushed me back to my son.  I have relived those moments 365 times since then… The faces of friends who came from far and away – I saw you all. The faces of people who love my little family & the little boy behind the wounds.

I am forever indebted to them.

And I am fine with that.

In my hour of need, Lord, you gave me friendship. I am honored to say that I learned to give from the best. I am honored to call them friends.

There were times when my heavy heart and tired pregnant body didn’t think it had any more fight in it – and in those times I remember the people I love carrying me.  I remember friends calling and emailing & praying. I remember physically feeling those prayers working.

I have seen the face of God.

I call them friends.

And, I believe in prayer. And, I am blessed because of it.

Today, I will celebrate. I will go to a pizzeria and order a movie. I will buy “grey ice cream” (Oreo) and I will top it with chocolate sauce. I will watch him blow out candles and I will play with his hair until he falls asleep.

Today I celebrate life.

And tell Satan to go to Hell.

Lyme Disease Updates

by | Aug 1, 2016 | Bacterial Infectious Diseases, Happiness, Hope, Lyme Disease | 3 comments

This is her struggle with Lyme Disease and a happy update!

I’ve been on some version of antibiotics since late last fall, first killing Bartonella and then working with a combo of drugs to attack the Lyme bacteria.

A year ago, I had no idea why I was sick. Each month brought with it an unknown set of new symptoms. I would cycle through the month with a flare up every 35-ish days. I often predicted when I would get sick again because the cycles were so regular. No one wants a diagnosis like this, but at that point, I just wanted to know what the hell was wrong with me!

I have had several people question whether I was legitimately sick and then a few more question the Lyme diagnosis since it is far from fool-proof. But a year later, I have to say, I feel SO much better and am so thankful for the doctors who risk their licenses to treat this disease. I may not be 100%, and I certainly still have some neurologic deficits, but compared to a year ago, I am so much healthier.

The shooting electric shock pain is gone.

Where I used to be tired from doing nothing, I now am only tired from doing. I may still get more easily fatigued than I used to, but at least I can be somewhat productive. (And this week has been a record for energy I think since before I got pregnant TWO AND A HALF YEARS AGO!)

My joints feel much better and are only stiff momentarily in the morning.

The all-over body pain is gone.

I still get dizzy, but it’s becoming more and more related to over-stimulation and florescent lights, as opposed to just being dizzy because I’m awake.

I still forget how to spell words sometimes and can find myself lost in a conversation. My eyes still get tired. And the Bell’s Palsy isn’t fully resolved.

But I am better, and that’s a reason to be optimistic that I will make a full recovery!

A Night Of Turmoil

by | Jul 22, 2016 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Emotional Regulation, Feelings, Generalized Anxiety Disorder Resources, Happiness, Hope, Loneliness, Mental Health, Stress, Trust | 3 comments

Anxiety and panic can strike us out of nowhere.

This is his story:

As my work day began to wind down on Friday, I got antsy as I looked forward to Saturday’s big duck hunt with my son, Bryan. My excitement level was high as it’s always a great time getting my boy into the woods and watching him learn the ways of the wild. We also have the opportunity to put some tasty treats in the freezer.

I called Bryan into school on Friday and took him to work with me as we were hunting just a few miles from work. I work fifty miles from home and it’s senseless to make the the long drive home just to come right back Saturday. We decided to stay with my in-laws -the best a man could ask for- instead, which is only twenty miles away.

Around 10 PM, after a bit of good conversation and some TV at my in-laws, my father in-law hit the sack. My son and I figured it was probably a good idea too, as our 3:30 am wake up call would be upon us shortly. Bryan was out in no time, but no sooner had my head hit the pillow, my mind started reeling. I have no idea why, but it was going into overdrive at an alarming rate, even as I did my best to fight it.

I thought it was just the excitement of the next day’s events and would wear off soon, but wow, was I wrong.

In a matter of minutes I was up pacing through the house, my mouth dry, my breaths rapid. My mind could not concentrate on any one thing.

I was having a panic attack and my medications were 75 miles away. That’s right, I forgot them at home. I had been doing great lately, and it never really crossed my mind to bring them along just in case.

Well here I was in the midst of a full-blown panic and had no idea what to do. I picked up the phone and called my wife, knowing full well that she would be asleep because it was now approaching 11:30 and she never stays up that late.

She was so wonderful and gave me time to chat and tried to relieve my tensions a bit. I didn’t keep her on the phone long but was so appreciative of her willingness to even allow me to call that late without getting pissed off. Her talk and encouragement was a bit helpful, but I was still contemplating making the hour-plus drive home in the middle of the night just to get my medication.

Then it dawned on me. My friend Luke was probably going out somewhere for the evening since his wife was out of town, so maybe I could get in touch with him.

I called Luke’s cell phone but there was no answer. I left a brief message explaining my dilemma and asked him to call me back. About ten minutes later the phone rang. I figured it was my wife just checking up on me, but it was Luke.

He was almost back in town from a night out and would be more than happy to have me over for awhile, even though it was midnight and he had to work the next day. I was in such panicked state that it took me two tries to get into the car and drive the three miles to his house.

Every time I’d get into the car, I’d think: I will never make it over there and I couldn’t breathe. The world felt like it was going to collapse around me if I sat in that drivers seat too long, so I’d pull back into the in-law’s driveway. I would get out, walk back into the house, then turn right back around and get into the car.

Finally, I made it to Luke’s house, but he wasn’t there. I tried to get out of the car and wait for him but my head wouldn’t leave me alone. My throat was tightening and it seemed like my airway was going to close any minute if I didn’t do something drastic. I knew this was all in my mind at the time and yet I had no control.

That thought alone made it worse. I jumped back in my car to head back to the in-laws. Just as I got to the first stop at the end of Luke’s road, he pulled into the road and waved me back.

I followed him to his house and we sat outside for awhile before I worked up the nerve to go inside without feeling caged in. A few minutes was all I could handle indoors…the heat, the lack of oxygen, the walls…I had to get out.

Luke was more than willing to follow. I’m not much of a drinker, but a 22oz hard lemonade seemed like it might help slow me down a bit. I slammed that while Luke sipped on one himself. Usually one of those is enough to put me on the couch for the evening! But this was no ordinary evening and no ordinary panic attack.

I have only had an attack this severe a couple of times and I hated it. Before I knew it, I had Luke out waking down the dirt drive at 2:00 am, and he did it with no complaints. We wandered back to the house and went inside for a little more chit-chat.

It was now close to 3:00 am and I could see that Luke was fading fast. The good thing was that it would soon be time to wake my son for his duck hunt, and my mind was starting to shift into a lower gear in preparation for the day of hunting. I needed to keep myself in check for the safety of my son.

The fog in my head slowly began to lift as I pulled into my in-laws driveway at 3:10 am. I was actually able to chill long enough to take a shower. When I came out of the shower, I felt as if the world had been lifted from my shoulders. My wonderful son was sleeping peacefully on a futon mattress on Grandma’s floor, oblivious to the hell I’d been through over the past 4 hours. I was tired but rejuvenated with a clear mind.

I took my son on the hunt. It was a wonderful morning. Warm, calm, and the mosquitoes didn’t even bother me. Ducks were flying and my son was doing pretty good hitting them. I had a wonderful day, and I must say that it was due to the patience and understanding of my wonderful wife and my friend Luke.

Luke is the true definition of a friend. I have known Luke for the better part of thirty years and I would do anything for him. He is more like a brother to me than a friend. I would be hard pressed to find another person on this planet that would be willing to sacrifice a night of sleep just to help a guy through a hard time.

Luke is a true friend, and true friends are hard to come by. He helped me through a night of turmoil that could have led to tragedy if I had not had him to talk to and keep my mind off the senseless ramblings. He was there for me and I am eternally grateful.

I am always here for you if you need me, brother!

Sweeter Than Music

by | May 15, 2016 | Anxiety, Family, Fear, Happiness, Hope, How To Help A Friend Whose Child Is Seriously Ill, Love, Pediatric Caregiver, Speech Disorders | 0 comments

Last week, my daughter Anna was on the radio! She was invited by Angie Evans to do the Triple Play Takeover on WCFX. She was able to request three songs. She picked “Baby” by Justin Bieber (of course), “Fifteen” by Taylor Swift and “King of Anything” by Sara Bareilles. She also was able to describe a prize for a giveaway, answer the phones, and do the weather. She even got to talk with Angie on air, and tell everyone a little bit about herself.

Of course she was a little bit nervous beforehand, but I think I was even more nervous for her. I didn’t need to be, though. She was a natural! She joked around, and even shared some entertainment gossip she had just learned!

Years ago, I never would have imagined this would have happened. You see, Anna’s been receiving speech therapy since she was a little over a year old. When she was a preschooler, I was the only one who understood what she was saying. I was constantly having to act as an interpreter. Speaking clearly and slowly enough for others to understand has always been a challenge for her.

Yet there she was, on the radio, speaking clearly and totally coming out of her shell. Doing the Triple Play Takeover was so much more than having fun on the radio for 30 whole minutes.

Instead, it was a huge milestone that she was finally able to achieve

I Want To Thank You

by | Nov 24, 2015 | Cancer and Neoplasia, Compassion, Coping With Cancer, Faith, Fear, Happiness, Hope, Love | 0 comments

a woman i used to work with emailed me this week.  i read it yesterday and it absolutely made my day, which – i might add – was spectacularly craptastic until I got the email.

“i started working at magic kingdom back in 1997 and only partially knew who you were. you were always cool to me at town square and spectromagic and stuff, but we were only acquaintances. i happened upon your page through mikki and started reading your blog, “bits of myself,” and i cannot help being taken by how fucking amazing you are.  sorry for the language from someone you do not know, but i can’t think of any other words.  i don’t even remember where i started the “bits,” but i backed up to where you found out you had cancer.  by the time i got to your final breastfeeding with nugget, there were uncontrollable tears streaming down my face at how you kept apologizing to her, for something that you did not ask for.i don’t know how much all of this means coming from someone you don’t know, but i just had to get this out.  i was driving day parade floats when you were at magic kingdom with your baby girl, and i saw you two days in a row.  knowing how painful it must be, there you stood in the sun, in a tank top, bald… smiling and waving.

i hope i didn’t weird you out with all this, but know that you have touched one more individual’s life.  you are the strongest woman that i don’t know.”

i just needed to thank you for that and let you know that your kind words have touched my heart.

thank you for reading my blog.

and thank you to all of you who continue to do so.

i hope you’ll all stay tuned for the exciting conclusion to this chapter of my life.

All That You Can’t Leave Behind

by | Sep 24, 2015 | Anger, Birth Defects, Chronic Illness, Compassion, Encephalocele, Faith, Family, Fear, Feelings, Guilt, Hope, How To Help A Friend With Chronic Illness, Loneliness, Love, Medical Mystery Tour, Neural Tube Defects, Neurological, Nerve, and Spine Disorders, NICU, Stress, Trauma | 0 comments

It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.

—————

This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.