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All That You Can’t Leave Behind

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.

Her Diagnosis

Thirteen years ago this past July our lives changed forever.

We had already suspected that something was not quite right with Anna.  She had stopped nursing after a few days.  I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding.  She did well with that for a few days, then it seemed like a challenge just to get her to drink an ounce.  We called the nurses on the maternity floor where she was born, and we were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.

I was still worried, but we had our first post-natal pediatrician appointment the next day (July 25), so I knew we would get answers then.

In the mean time, I received a phone call from someone from the state of Michigan.  I’m not sure, my memories of that are vague.  I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn, to confirm it. I was concerned, but was still focused on our doctor’s visit.

When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors. I guess she wasn’t sure how I would react to what she would tell me next.  When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD*), it was very serious, and she was very sick. The only specialist in the state who saw patients was located at University of Michigan, and we were expected down there, and we need to leave as soon as possible.  I remember that her southern accent was soothing, and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog.  I didn’t understand…. Anna was born healthy.  Both of her Apgar scores were 9.  That meant we were supposed to live happily ever after.

Right?

Right???

At the time Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch.  And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.  After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.

On the drive to U of M I poured over my “What to Expect” book.

MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.

When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell.  He then took a swab of her earwax for them to smell.  We were completely flabbergasted… what did he think he was doing?

We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.

You see, there were signs that Anna has MSUD, but we never picked up on them.  She had a very high pitched shrill cry, but we joked that she’d sing opera someday.  By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over.  We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.  We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good. And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.

By the time we were in PICU, she had an IV in her scalp, because she was so dehydrated that that’s the only blood vessel they could use.  She had an NG tube giving her nutrition.  She was hooked up to heart monitors and pulse-ox monitors.  She looked so tiny and helpless there in the bed. We had never felt so helpless as parents as we did then.  That day is one of the few times I’ve seen my husband break down and sob.

What information we were given about MSUD over the past few days was overwhelming.  Most of the official definitions included two very frightening likely outcomes: mental retardation and death.  The prospect of having a child with a restricted low protein diet was daunting too.  Would we need to become vegetarians, too?  If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? 

Those fears seem so trivial now, but they were so real to us then.

Over the next two weeks, Anna got stronger.

After she got out of the PICU, she was moved to a regular room.  After she regained some weight and was able to take feedings by bottle we were able to come home.  She was sent home with the NG tube, as she was still taking about a quarter of her formula that way.  Shortly after we got home from the hospital she grabbed the NG tube and pulled it out, flinging stomach acid all over me.  I should have known then that it would serve as foreshadowing for how the next thirteen years would go!

Thankfully, we were able to remove the tube after a week.

As I think back to those days, I also look ahead to what faces us.  When it comes time for her [liver] transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers.  The big difference will be that this time, we will be filled with hope.

Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past thirteen years.

*Maple syrup urine disease is an inborn error of metabolism.

Medical Mystery Tour

Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.

This is her story:

Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.

Any other time I go to the doctor? Well… That’s an entirely different story all together.

Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain.  I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.

Imagine my dismay to realize that it was going to start all over again.

I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. :-P ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.

The day before Valentine’s Day, I decided to add passing out to the mix.

After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.

I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)

Oh! But wait! It seems my body decided to throw another curve ball into the mix!

During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.

To me, it was easier to deal with the judgment of  being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.

Except in June, I found out that I managed to get myself knocked up.

I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.

I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.

And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)

I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.

So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.

I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part.  While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?

Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told  be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that. :-P

Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?

Or am I really alone in this?

My Lyme Disease Story Part II

Click here for Part I

Everyday I feel like I am going to die.

It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.

I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.

And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.

This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.

Self-Depreciation

Prankster, my heart goes out to you. I wish that I could wrap you up in a big hug so that you knew that you were loved. Because you are so loved. You are worth everything. I know that telling you that you need to stop won’t help and will further reinforce all that you do to yourself, so I won’t, but I am reading what you don’t say here, and it breaks my heart. You are worth saving. You can fight your dragon and you can win. Someday you will win.

We will be here waiting to celebrate when you do.

Much, much love,

Aunt Becky

I’m a sucker for it. And I could speculate about all the things that have caused it. My childhood wasn’t great. I’ve dealt with depression and all the shit it brings. I’m impulsive… but I have this feeling, deep down inside, that it’s just the way I’m wired.

The first time it happened I was 14, angry and frustrated and it just made sense. The scissors were right there… and just like that, an addiction was born. I was a cutter. I self-injured.

Of course, 14 year-olds aren’t the most logical thinkers, so I got ‘caught’. We did the whole therapy deal with a crappy counselor and I was expected to stop immediately, so I did.

But I wasn’t stupid. Since the age of 15, I’ve been dealing with an eating disorder. I’ve seen 2 shrinks since the first, and neither know about my eating disorder.

As with all addictions, I’ll never be cured. I never truly stopped, but my parents like to think I did, so I let them. I just got better at hiding it.

While I don’t cut nearly as often as I use to, I picked up a nice little friend, named trichotillomania (self-pulling of hair). It’s so great [sarcasm].

This would be one reason I think it’s instilled in me, I don’t want to give it up. It’s mine, all mine, and I don’t have to share it with anyone, which feels great.

So, maybe the day will come and I’ll be ready to give up the ghost. And if it does, I’ll come back, and I’ll let all of you know.

My Lyme Disease Story – Part I

I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).

And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.

I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.

Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.

It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.

The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:

“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)

Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).

That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.

I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.

At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.

Click here for Part II.