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Dr. Potato – Cold as Ice.

19 Nov

I find it quite remarkable that I don’t have a specific memory of learning I was pregnant with Oli. Such a life altering moment should bring forth some special moment in time. When I think of learning about my son I instantly think of a small bathroom with light blue walls, a blue flecked tiled floor and a gleaming porcelain sink. I remember standing at the sink in my faded blue scrubs and peering down at two faint pink lines on the pregnancy test.  I was overcome with giddiness and an unabashed excitement bubbled up within me as I ran to grab my phone to call my mom. Too elated to abide by the societal norms of not disclosing a pregnancy until the third month; I couldn’t wait to tell everyone, and I wanted to tell them now!

When I think of that moment with Oli, there is nothing.

On Oli’s second day of life, I again awake to a nurse gently shaking me, instructing me that it’s time to feed my baby.  In contrast to the dark circled, glassy eyed, middle-aged woman from the night before, this nurse’s eyes are clear and focused. She is young, sporting a short bob that frames her heart-shaped face. She smiles warmly at me as I attempt to rub sleep from my tired eyes. I do not recommend having a baby so late at night.

Worry immediately intercepted my thoughts. Still half asleep, I’m not entirely sure why because I feel reassured that although Oli was born over a month early, she is breathing fine and nursing okay. Because she is so small, she did have a little trouble latching the first time I nursed her.  I asked the nurse for a bottle of formula, paranoid that she wouldn’t get enough milk and end up dehydrated. I was also worried about her weight. Newborns usually lose some weight in the first week, but I didn’t want to take any chances or give the doctors any reason to keep her.  I wanted to do everything I could to make sure she came home with me and didn’t have to go to the NICU.

My thoughts instantly returned to what the nursery nurse said the night before and my daughter’s continued insistence on keeping her eyelids squeezed tight.

I couldn’t get her eyes open.

I’m anxious for the pediatrician to come in today.

Several hours later, I sit alone in my hospital room eating slightly cold chicken fried steak, lumpy mashed potatoes and enjoying some kind of orange flavored, jello-y, marshmello-y, foamy dessert that can only truly be enjoyed when confined to a hospital bed.

Seth left an hour before to go and pick up my son from his grandma’s house. I’m excited for him to meet his new baby sister. We practiced for weeks, buying him his own baby doll, so he could work on holding and gentle touches.

“Bee-bee” he said, as he looked up at me with his enormous aqua blue eyes and smiled as he proudly cradled the doll in his arms.

“Yes, baby. That’s right! I see you’re being so careful and loving with your baby. You’re going to be the best big brother.” I would pull him into my lap, squishing my nine-month pregnant belly between us, trying to soak up the last few weeks of solo time with my boy.

I’m finishing my delicious dessert when a short, dark-haired man in his 50’s knocks on my door, barging through before I have a chance to say, “come in”.

“Hi. I’m Dr. Wagner. I’m here to look at your baby.” His demeanor is serious and cold, emphasized by his inability to make eye contact with me as he speaks.

He’s wearing a blue checkered button up shirt covered by a crisp white lab coat that looks as if it’s been freshly pressed. His brown hair is short and combed to the side and his wire rim glasses continuously slide down his nose, needing to be adjusted every few minutes.

I’m so nervous now that he’s here to look at her and I’m even more nervous because he’s so serious and stoic. He walks across the room and begins unwrapping Oli, who is soundly sleeping in the clear hospital bassinet next to me.

“Nice to meet you. I’m glad you’re here. The nurse last night told my husband that she is worried about the baby’s eyes. I haven’t seen her open them yet, but I’m sure it’s nothing. I’m sure her face is just swollen. I was in labor off and on for a few weeks you know. That could cause some swelling. I took ready good care of myself during my pregnancy and always remembered to take my vitamins. I’m not on any medications and all my ultrasounds were normal. I’m sure they would have noticed if there was something wrong. I’m sure there’s nothing wrong. I just need you to look at her and make sure.”

Oh my god.  I can’t get the steady stream of word vomit coming from my face to stop.

 Shut. Up. Stop talking Shannon.

I don’t stop. I continue. “I’m a NICU nurse and I’ve taken care of a lot of babies, and I know that there is no way her eyes can be fused at 35 weeks and like I said, I was in premature labor for a while and maybe that has something to do with it. I’m really glad you’re here. Did I say that already?”

I can feel my face flush red hot, still unable to stop the verbal diarrhea spewing from my lips.

I could be speaking Chinese, German, or Swahili for all the attention he is paying me. He isn’t listening to me at all.

“Mmmm..hmmm.” Is his only response to my diatribe of nonsense.

He is inspecting her tiny form. Unwrapping and unzipping, lifting, turning, listening, palpating, looking at every inch of her little body…that is located below her neck. He has yet to look at her eyes.

Deep down in that moment, watching his hesitation and unwillingness to look at the part of her body that he had been summoned to inspect, I knew in that moment that my fears were about to be realized.

There is something wrong with her.

Suddenly he stops his prodding. He has finished the exam. He hastily tries to rewrap her tiny form in the most half assed, “I don’t have time for this” kind of doctor way and finally raises his eyes to meet mine. He remains cold and stoic.

“I think she either has really small eyes or no eyes at all. Microphthalmia is what it’s called, and she’ll probably be blind.” The words are hurled out of his mouth at me like hurricane propelled rain drops blasted against glass, shattering me to pieces. Each syllable strikes with the power of gale force winds, relentless and unforgiving, as if intent on breaking through the fragile barrier of my composure. In that moment, I am nothing more than glass under the assault of a storm, fragile and vulnerable to the onslaught.

I do the only thing I can do. I freeze.

As soon as he was finished with his initial word assault his eyes again fell to the floor. Now he raises his gaze to meet mine again and with all the emotion of a potato asks, “Do you have any questions?”

I am a statue. Unmoving. Unbreathing. Unthinking. Maybe if I just don’t blink, don’t speak, maybe if I can hold this stillness forever, I won’t have to acknowledge his life changing words.

“Oh, we should check her kidneys too. She may not have any kidneys. I knew one other kid, about 15 years ago, that kid was born with no eyes. He didn’t have any kidneys either. I’ll order an ultrasound, and we’ll make sure.” This cold, unfeeling, unemotional man then has the audacity to smile at me. Even as I sit with my mouth ajar, tears filling my eyes, still not able to speak, he smiles at me as if he’s just told me about the weather.

“It’s going to be 85 degrees and sunny today!” (warm smile) “Do you have any questions?!”

I stare blankly at him as he mistakes my stunned silence as understanding and acceptance and turns towards the door.

“Well, it was nice to meet you. I’ll put in orders for a CT of her head and face and an ultrasound of her kidneys.” Once again, his eyes fail to meet mine as he ducks his head and turns toward the door. It quickly shuts behind him and then he’s gone. He’s gone and I look around my drab hospital room and no longer recognize my environment. The tan curtains look the same, the bedside table looks the same, my half-eaten lunch looks the same. I lift my hands up in front of my face. I look the same. Why do I feel so different now?

I look over to the peaceful baby soundly asleep in her bassinet, barely bundled back into her blanket. She doesn’t look the same. She doesn’t look the same at all. She’s different. She’s someone that I housed inside of my body for nine long months and now I don’t recognize her. She is a stranger.  Two sentences. 10 minutes, and my entire life has changed.

How am I going to tell my husband? How in the hell am I going to utter the words, blind…no kidneys. Why did this burden fall on my shoulders? Desperate not to be the one to shatter my husband, I also don’t want that doctor to come back in here with his emotionless tone and his slightly bored attitude. I don’t want that guy telling him that all his wonderful dreams of showing his daughter the beauties of desert mountains and Hawaiian sunsets are never going to happen.

I know in that moment what I must do. I must be strong for him.

Stuff. Stuff. Stuff.

I have to pretend that I know we are going to get through this.

Stuff. Stuff. Stuff.

I have to put on my big girl panties and my brave face, and I have to tell him that it is going to be fine. That she is going to be fine.

Stuff. Stuff. Stuff.

Just stuff those feelings down.

Be strong. Be perfect. Be fine.

At that moment my husband walks through the hospital room door. He walks in holding my beautiful blond haired, blue eyed, baby boy. A baby that I do recognize. A baby that I do know.

I am young. I am unprepared. I’m alone. It’s Mother’s Day weekend.

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Open your eyes.

23 Sep

4.

Oliana entered this world at 11:49 pm on May 10, 2007, with her pale, almost translucent eyelids closed.

Gazing into the dark depths of my newborn’s eyes was something that I had imagined as my belly grew heavier with pregnancy. I visualized forming a deeper connection with my tiny new daughter as the nurse wrapped her in a warm blanket, placed her in my arms and I peered into her eyes for the first time.

The pictures that I had seen in my mind’s eye of this moment were unceremoniously ripped from me by a destiny that I couldn’t yet understand.

The delivery was so quick (and painful) and the moment that she came into the world, pink, wet and screaming, I was unaware that my world was about to shatter to pieces.

The neonatologist, who had assisted with her delivery at my request, carefully examined her on the warmer. At 35 weeks, there’s always a slight concern about the baby’s lung development. Thankfully, Oli’s lungs appeared to be in perfect condition as she lay there, pink and crying. After a thorough check-up, the doctor reassured me, “She looks perfect. Good job, Shannon. Let me know if you need anything else,” he was eager to leave the delivery room.

Although he was certainly willing to come to the delivery, my labor was not necessarily something that we wanted to share as coworkers. II completely understood his urgency to make a quick exit and, unable to stop myself from blushing, softly uttered my gratitude as my legs remained splayed apart, now inconveniently numb and confined to the stirrups.

That morning, I had debated even asking him to come to her birth, not wanting to experience this exact situation. Ultimately, the health and welfare of my infant outweighed my vanity and dignity. Even if that meant never looking this doctor in the eye again. If she needed help, I wanted a well-respected neonatal physician in the room, ready to act. Now that everything turned out okay and she was fine, I was second guessing my decision. There certainly were aspects of my body I had never intended to share with a colleague.

Once he departed, the nurse placed Oli on my chest, and at first, everything seemed normal. However, after a few minutes, I couldn’t help but notice that she wasn’t opening her eyes. This struck me as odd, as my son had opened his eyes immediately after birth. Oli seemed to be keeping hers tightly shut. I tried to dismiss the growing unease in my chest, but the feeling persisted, a gnawing tightness whispering again…something is wrong.

The nursery nurse eventually came in to whisk her away from the warmth of my chest. She took her back to the nursery to gently clean her up, administer her vaccines, and apply medication to her eyes, which are standard procedures for all newborns at the hospital.

“Go with her” I instructed my husband, not wanting to leave her alone for a second within the sterile white walls of the hospital. This protectiveness would persist for decades, and Oli would never spend a minute alone without one of us while hospitalized.

Seth accompanied the nurse to watch over our new daughter. When he returned, he shared with me that she was slightly cold, so they placed her under a warmer to raise her temperature. Then he delivered news that heightened my sense of unease.

“The nurse couldn’t open her eyes to administer the eye drops. She expressed concern that her eyes may still be fused shut,” he told me, his eyes betraying a significant amount of fear.

“What? That doesn’t make sense. Babies’ eyes typically stop being fused shut after about 23-24 weeks. She’s 35! No, they’re not fused. They’re just swollen. I’m sure they’ll be fine in the morning,” I responded, trying to reassure both of us.

“Well, maybe” he responds nervously. “But the nurse intends to call her pediatrician first thing in the morning to come and examine her. I’m sure you’re right. They’re probably just swollen,” he appears slightly more at ease, relying on my medical knowledge of newborns.

Despite my efforts to dismiss my concerns, deep down, I knew something was not right with her eyes. She should have been able to open them, or at the very least, the nurse should have been able to.

However, at that moment in time, I forced myself to believe that she was fine. I was exhausted and didn’t have the compacity to explore what that could possibly mean. Even if I had, the result was something I couldn’t have possibly imagined.

The nurse brought Oli back to the room and I tried to sleep. By then it was nearly 4:00 am.

Before I did, I whispered a heartfelt prayer to heaven, the first of many for my sweet girl, which went unanswered.

 “Please open your eyes, baby girl. Please open them and look at me.”

5.

I awoke a few hours later to a nurse gently shaking my shoulder. “Mama, it’s time to feed your baby.”  

Already? It felt like I had just closed my eyes. I looked over into the clear, plastic bassinet that held my sleeping daughter and then at the clock; 5:30am.  

“Will you hand her to me please?” I ask as she lifts the scratchy hospital blanket to palpate my deflating and squishy abdomen. We were transferred to the postpartum floor a few hours after delivery. Unlike the hive of activity on the labor and delivery floor with the sounds of monitors beeping incessantly and the hushed and urgent voices of the doctors and nurses, this unit was quiet and calm. Except for the periodic kitten-like mews emitting from babies still unhappily protesting being ripped from the safety of their muffled, dark and warm environments, this floor is silent. The babies, still unaccustomed to the cacophony of unfamiliar sounds and the cold chill that assaults their once tightly curled limbs, cry out as they flail in the open air.

My infant, cradled in her soft blanket, sleeps peacefully and I watch as the nurse leans into the bassinet.

She hands me my tiny baby burrito swaddled in a light pink and blue striped blanket.  Oli has a fine covering of light blonde peach fuzz on her head. I smile, remembering how focused my attention was on her hair, prior to her delivery. She is bigger than I had expected her to be but still so tiny, weighing only 6lb 0oz and 18 inches long.  Her little fists clenched tight; she pulls her knees to her chest to object the sudden temperature change as I unzip her onesie.

I unfasten the sticky tabs on each side of the reusable diaper to change her and run my hands along her soft new skin. She’s perfect in every way. She has a perfectly round head, ten tiny fingers, ten tiny toes and sleeps so peacefully, all curled up not realizing she now has the entire universe to stretch out in.

I peer into her serene face and will her to look at me. Taking my finger, I run it along her face and tickled under her almost nonexistent chin, trying to wake her. She stirs and slowly turns her head from side to side, attempting to shake this annoying intruder trying to rip her from her slumber. She doesn’t open her eyes. “Oli. Oli. Open your eyes Oli. Please? Please open them for me.” I beg her as she continues to keep them tightly closed.

I glanced over at the snoring lump draped across the couch along the far wall and considered waking my husband, not wanting to obsess and worry alone.

It was probably nothing. A swollen face… nothing more. Nothing to be concerned about. Despite my self-assurances it was becoming increasingly challenging to maintain the illusion that everything was okay.

I couldn’t imagine what would keep a baby from opening their eyes. This was new territory and something I had never encountered while working.

Stuffing the uncomfortable feelings being stirred within my mama heart back down, I put my delicate little flower to my breast and began to nurse.  I would continue to stuff all of my disquieted feelings, until eventually, like a beach ball being held beneath the water, the constant effort led to overwhelming exhaustion, and they exploded to the surface.

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Chapter 1. The dance.

17 Sep

The alarm goes off and I’m reluctant to open my tired eyes. It’s 6am, my feet haven’t even hit the floor and already, I’m exhausted.

“Again? Is it morning again? Seriously?” Those are usually my first thoughts of the day.

I glance over at the bedside table at the video monitor whose black and white screen brightens my darkened room. I squint intently at the tiny screen listening and watching for any kind of movement from the mound of blankets that the camera points to. I’m also holding my breath, hoping all is still quiet. “Please. Please. Please. Just one cup of coffee.” I think. “I need just one cup before we start.”

All quiet. No movement. All good. For now. I slip quietly down the stairs and head to the kitchen where I make my first of many cups of coffee. I have about 45 minutes to sip coffee and enjoy the quiet before I start my day, getting my other two kids off to school first. It really is quiet, and I should be relaxing, but rather than do that, my brain is already going a million miles a minute with anticipation of the day. Who am I kidding? I never relax.

I think most of my exhaustion comes from my emotional exertion. The constant fear and worry that has plagued my brain for months now. Will today be better? Will it be worse? I never know how good or bad the day will be until I wake up the girl lying beneath the pile of blankets. When she opens her eyes, how she opens her eyes, how she moves, how she stretches, her facial grimaces, how much she shakes…these movements all have their very own file in my brain and each one of them gets logged in as they are performed. I then do a quick calculation to determine what will be possible for that day. How bad will she be?

As I uncover her, I do a quick physical assessment. As a trained nurse this is second nature. I’m looking at her coloring, her breathing, feeling her forehead for a temperature. How is her stomach? Does it look bigger this morning? How much is in her ileostomy pouch? What color is it? I lift her shirt to look at her gastrostomy tube. Is there drainage under the bandage that protects her skin from the plastic disc that sits atop it? I lift her shirt a little more to look at her chest and the dressing that covers her central IV line. Is it red? Is the dressing intact? Does it look the same as yesterday? All these things are done in less than a minute.

On days when she opens her eyes quickly, or is already awake, I know she’s probably feeling pretty good. Especially when she flashes me a smile when I say her name. ” Good morning, Oli!”

On days when she struggles to wake up and doesn’t want to move, when she grimaces instead of smiles, I know it’s going to be a tough one. These are the days that require the most emotional (and physical) exertion. These are the days when I can barely keep my tears at bay and the fear stays lodged tightly in my throat.

This morning it took me almost 30 minutes to get her up. My heart sinks with the realization of what that means. “Shit. I should have had two cups.”

I do everything that I can for her while she is still lying in bed, mentally checking off items as I complete them. I go cleanest task to dirtiest. The IV pump has just sounded three short beeps which indicates that her TPN infusion is complete. I cross the room to a long table that sits under her wall mounted TV. It is heaped with plastic bins containing hundreds of medical supplies. I chose one saline and one heparin flush that are wrapped in plastic, a Prevantics device swab, and a green cap from the top shelf. Reaching over the still sleeping form I grab the black bag containing the now empty bag of TPN and the pump. Lifting a flap, I turn the pump off and lift her shirt so I can disconnect the line from the IV. Once disconnected I start swabbing the hub of the IV with the disinfecting square and begin counting in my head.1…2…3…4…5. Then I let it dry…1…2…3…4…5. Next, I attach the saline flush and depress the plunger in quick stop and go motions. Then the process is repeated all over again before I attach the heparin flush. Finally, after the line has been sufficiently disinfected, flushed and heparin locked, I clamp the line and reach for the green cap that will cover the hub of the IV and will prevent bacteria from getting in. The IV is finished. Check. On to the next.

I slowly stand and straighten as pain runs down my spine after intently hunching over the bed. A quick glance at her face and lack of movement tells me that she’s going to need her medication before getting into the shower. If I can get her into the shower. Some days that’s a really big if. This will be one of them.

I walk into the kitchen over to a counter that used to be empty except for a Keurig machine. It is now home to a Keurig machine, a drying towel covered with syringes and 3 clear, plastic storage containers filled with numerous medications and the supplies to deliver them. So many meds and supplies. I have literally brought work home with me.

There are pills, tablets, liquids, syringes, syringe caps, connectors, pill crushers, small medicine cups, tubing, and sterile water. I quickly crush, mix, and pull up her morning meds. I glance at a printout taped to one of the top cupboards, confirming that I haven’t missed anything. Although, in all honesty, her med list changes so frequently I would have to print out a new list weekly to keep up. The big ones are on there, so it’s something to reference. I remember to add in the new ones, gather up all the supplies and walk back to her room.

On my way back to her room my phone buzzed silently in my pocket. A quick glance at my watch and I recognize the number instantly.

Hospital.

With butterflies in my stomach, I pulled out my phone. I have weird, juxtaposed feelings when seeing this number. On one hand I dread it. It could mean devastating test results or scheduling painful procedures. On the other hand, it could mean a new idea for treatment. Or a test result revealing some long-obscured answers that have eluded us for almost a year. It could be the answers to the questions that I’ve been asking for months and months.

What’s wrong with her?

Unfortunately, this morning, fate is not on our side. I answer the phone and hear a chipper, warm, female voice on the other line “Hi! Is this the parent of Oliana?”

“Yes.” I reply cautiously. This is not a doctor. This is office staff. This is someone calling to schedule something.

“Hi! I’m calling to schedule a procedure. Do you have a few minutes?”

Oh great. I mean…” Great! Yes! This is a good time to talk.” I say, putting her on speaker phone so I can pull up my calendar.

In the last 9 months we have repeated the same two procedures numerous times.

We’ve never gotten any new results. These procedures have never resulted in any answers. It’s the same thing over and over and over….

What’s the definition of insanity again?

But maybe this time will be different. That thought causes me to chuckle to myself as the voice on the other end of the phone rattles off a date and time.  She goes through the pre procedure instructions, which I’ve heard a dozen times before. Oli is at the hospital about every other week for some kind of surgery or procedure. Before she gets to the “don’t let her have anything to eat or drink after midnight” part, I stop her.

“I’ll save you a little time. Oli doesn’t eat or drink or take anything at all by mouth.”

There’s a brief silence on the other end. I can hear her thoughts as though she has spoken them aloud.

Doesn’t eat or drink? Like, ever?  

But what she says is “Ok. Don’t put anything in her Gtube…” I stop her again before she can go on.

“No. I mean she doesn’t have any kind of food or liquid going into her stomach by any route, ever.”

Another long silence.

I get it. It’s not possible to not eat or drink. Ever.

As the silence continues, I go on “She has an IV and gets all her nutrition through her IV. She is on TPN.” I never know how much to say or what language to use when giving the office staff information. Does she know what TPN is?

“IV nutrition.” I quickly followed up with that. Just in case.

“Oh okay. Okay. So, nothing by mouth?”

“Nope. Nothing by mouth.”

“Okay well I’ll skip that part then. To get to the procedure check-in you’re going to…”

“Park in the garage. Walk into the building take a right and walk all the way down, crossing into the hospital and check in at the desk on the right.” I finished for her. This isn’t our first rodeo.

“Right. Some people don’t know so I like to give very explicit directions.”  I can hear just a hint of annoyance in her previously chipper voice.

Well lady, sorry. I have things to do and meds to give and we have done this dance every other week for at least the last 8 weeks. . I don’t have time for the repetitive dance steps on this particular morning. I have a sick girl in the other room that I need to get back to.

“I appreciate that. Thank you for your time.” I repeat the date and time again and she confirms ending the call with a curt “goodbye”.

So, how did we start this whirling, twirling never-ending dance at this god forsaken rodeo?

That’s a whole story. Let me take you back 17 years to Las Vegas, Nevada and a beautiful May afternoon in 2007.

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Organ Transplant Discrimination and Disability: The Shocking Reality

10 Jul

In a mere instant, again, life will never be the same.

I was completely blindsided in a GI appointment with Oli today. We have always known that Oli’s injury to her intestines in West Texas was catastrophic. The probability of nerve damage caused by lack of blood flow was high. The GI doctor likened it to a victim of drowning. He said “you know when you have a drowning victim, afterwards in the ICU they do an MRI and the brain looks normal? It looks normal but their brain does not work anymore.  The person suffers from severe damage. That is probably what has happened to Oli’s gut. The nerves in there have all been damaged. I don’t want to be negative, but in my heart, I don’t think this is something that will get better or can be fixed.”

When I mentioned the topic of next steps and how we can go about getting her listed for an organ transplant there was a look on his face that stopped my world in an instant. That look conveyed something that I had honestly never even considered.

Oh, how naïve I am about the way of things.

The doctor didn’t say it in so many words, more of a fumbling around about way saying something like “she’ll have to go to Houston, and they will have to evaluate her to see if she even could be listed”.

Could even be listed? Why couldn’t she be listed?

I know that sounds benign but there was a look on his face and a look in his eye and a failure to meet my bewildered gaze that told me all that I needed to know. Something that I had never even considered. There was an incredibly good possibility that my sweet girl was never going to be listed because she had the unfortunate disadvantage of being born with a disability.  

He walked out of the room and I sat in silence for a moment stunned, as the tears began pouring down my face. How could they just NOT help her? How could they let this beautiful girl, with the most incredible smile and disposition, just die?

I immediately jumped online to prove to myself that this was not a thing. There was no way that this could be true. People with disabilities are people. First and foremost. They have a right to medical treatment just like everyone else. I must have misunderstood.

I did not.

I read article after article titled:

“Push is on for states to ban organ transplant discrimination”- CBS news

“Organ transplant discrimination against people with disabilities”- National council on Disability

“Equal access to organ transplant for people with disabilities”-National Institutes of Health

“They say their children are being denied transplants because of their disabilities”- CBS news

“People with autism, intellectual disabilities fight bias in transplants”- The Washington Post

And on and on…

There are so many out there. That was just a simple Google search. There are so many families out there with stories about how their child died because the transplant center refused to list them. Stories about how families had the law changed in their state so they could not refuse to transplant the child due to a disability.

Did you know that a study in 2008 found that 85% of transplant hospitals considered a child’s nerurodevelopmental delay when considering their eligibility to be listed on an organ transplant list? I would like to say that in the 10+ years this has changed but sadly, for the most part, it has not. A research paper by the National Council on Disability from 2019 titled “Organ transplants and Discrimination against People with Disabilities” states:
“People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. These denials are frequently based on discriminatory assumptions that the lives of
people with disabilities are of poorer quality than those of people without disabilities, and on
misperceptions about the ability of people with disabilities to comply with postoperative care.”

And then I googled “Do special needs people get denied organ transplants in Texas”.

That is when I saw a glimmer of light. I found House Bill (HB) 119 that was passed in September 2021 during the 87th Legislature that prohibits organ transplant recipient discrimination based on certain disabilities. It states “When determining whether an individual’s disability is medically significant to the organ transplant, a health care provider may not consider the individual’s inability to independently comply with post-transplant medical requirements when the individual has a known disability and the necessary support system to assist them in reasonably complying with the requirements.”  

House bill or not I am prepared to have to fight for her to have this opportunity.

Even though under the Americans with Disabilities Act and the Rehabilitation Act the practice of denying people organs because of their disability is illegal, it is up to the transplant physicians to evaluate these patients. I promise you, there are ways around that and reasons they can list why they would not be good candidates.

Coincidentally, (if you believe in coincidences) I am in the business of organ donation. I currently work for an Organ Procurement Organization (OPO) and have for 4 1/2 years now. I completely understand the states concern for maximizing these gifts and making sure that the person receiving them can comply with all treatment and make sure that these donors’ gifts do not go to waste. I’ve watched families of donors rejoice at the thought of their loved one’s organs going to save someone else’s life. I have seen the peace that it can bring. I’ve also seen families agonize over the thought of someone taking an organ out of their loved one’s body after they have passed and placing it into someone else. These families are caught off guard when they realize that they signed up to be an organ donor. I have also seen about 90% of those families walk away with their minds completely changed and hope and peace in their hearts when they realize what a heroic and selfless decision their loved ones made. Organ donation seems to be a hot topic and not everyone agrees. And not everyone has to. It is an individual decision and I am not here to tell you what is right for you or your family. What I am here to tell you is that my daughter has every right to have an opportunity to receive one of these precious gifts because she is a person.

According to the Texas House bill she must have “the necessary support system to assist them in reasonably complying with the requirements.”  And she does. Because Oli has me. Forever. Oli has me to keep up with her appointments and her meds and all the things that I have done for her entire life. And I am committed to continue doing these things until there is no more breath left in my lungs or blood flowing through my veins. The day that she was born I looked into her sightless eyes, and I made a promise to do everything that I can to help her. I promised to be her eyes and her voice and her legs and anything else that I can do and give her if she needs it. I will not stop now. I will not take no for an answer because she is worth something and her life is worth something and she matters.

My Oli matters.

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Parenting a Medically Complex Child: Coping with Life Before and After November 2023

19 Jun

I had been on a journey as a special needs mom for 16 years when that journey took a left-hand turn and fell off the rails. Throughout Oli’s life I have learned so many things, but nothing I learned could have prepared me for what would happen to her in November 2023.

Being a mom to a child with extra needs, or at least the kind of extra needs that Oli had “before”, is nothing like being a mom to a child who is medically fragile or a child with a chronic illness. There is no comparison. Basically, I knew that Oli was different and needed extra help, but I would always describe her as having extra needs but being 100% healthy. I always included that last statement and felt true gratitude for that fact. I knew that she/we were lucky that she had no medical issues. But that was “before”.

   Now life is defined as “before” and “after”. Life with Oli has kind of always been defined as “before” or “after” ever since she was born. There was my life before Oli, and my life after Oli. Now there is life before November 2023 and life after November 2023. Although life before and after Oli was certainly difficult at first and we faced many, many challenges, I feel like almost all those challenges lead to beautiful growth and development for me personally. I changed so much after Oli and although not all of it was positive in the moment, it always turned into something positive. I find this experience to be similar.

Our first journey, after she was born but before Nov 2023, was a road paved with uncertainty and the unknown and a small measure of fear. I didn’t know anything at all about blindness and I didn’t know then that she would have developmental delays. I learned though and we grew together, me leading the way and stumbling but always remaining upright and able to carry Oli through difficult patches. The fear turned to confidence, and I became more and more secure in my abilities to help and care for her as the years passed.

“Before” I never worried about losing her.

 The small measure of fear that I felt before now has grown into a magnificent, all-consuming giant monster who is crushing my body and sucking the air from my lungs.  The terms chronic illness, medically complex, and medically fragile now pepper my language when describing my girl in her current state. She is no longer healthy. She is sick and she is in pain, and she is suffering.  That is my truth, no matter how much I don’t want it to be. However positive I try to be, however I try to spin what is happening to her, the truth is, she is suffering. There is no denying that anymore.

She is in and out of the hospital so frequently now that it feels like the hospital is her primary residence. It’s much rarer to have her at home. And every time she comes in, she leaves a little bit worse for wear. She comes in and gets examined, poked, prodded, x rayed, Cat scanned, turned, rolled, lifted, and leaves with new battle scars, a new diagnosis, a new symptom, a new medication, a new medical device… and new trauma. 

Now a touch on her forearm and the feel of a rubber band elicits an immediate increase in heart rate and a quick intake of breath as she has learned exactly what this means.

Pain.

The sound of the portable Xray machine rumbling down the hall causes her to visibly shake.

 Rubber gloves pushing on her abdomen immediately brings her knees to her chest. She tries her very best to protect herself in the only way she knows how because in some cruel twist of fate she was not given verbal words of protest to speak into existence.  However, in that cold, sterile room those unspoken words are heard by me in a way that only a mother can hear. I feel them in my soul, and it rips me to pieces as I grip the side rail of the bed lest I physically push away the offender.

Stop hurting her!

Another silent protest and unspoken words that never leave my lips because what I know, and I’m not certain that she does, is that they are trying to help her.

Unfortunately, we know in the medical field that most “help” comes with a measure of pain. For Oli most, if not all, of her help has included a lot of pain.

I thought this last hospital stay was going to be it for a while. She was so happy and comfortable when we got to leave here the last time. She was smiling. She was smiling a lot.  A week later those smiles gave way to tears. And those tears became more and more frequent. Eventually all she wanted to do was lay down almost completely flat in the bed. She would no longer even sit in her reclining chair.

I thought that when we came in here again they would try to find the source of her discomfort. One Xray and one Cat scan later and the mission was abandoned, and her pain was dismissed. A partial bowel obstruction that was found this time no longer elicited the same measure of urgency or attention. New lesions on her liver that were never there before, were first brushed off as “incidental findings” until I pointed out that they were not seen on the previous 7 CT scans. Not able to do an MRI because of her spinal fusion rods, the search for answers for that too was just abandoned. Now I guess we’re just supposed to accept that not only can Oli no longer eat or drink but now her new normal also consists of the inability to sit up without pain.  

Why is this ok? If Oli could speak or look them in the eye, do you think this would be the case?

I hate the thought, but I have this feeling in my heart that she may be thought of as less than a person because she cannot voice her complaints, cuss someone out or get up and leave.

I’ve had this feeling ever since she got sick. It’s like, yes, she’s sick, but she’s a special needs child so there’s a feeling of complacency and missing a sense of urgency and importance. Sometimes I get that feeling with other people too. Non-medical people. It’s almost like special needs=illness or medical complexity. I’m here to tell you that it doesn’t.

I was in no way prepared for Oli to become ill. I don’t think any parent could prepare themselves for something like this. My kids weren’t prepared either. Keely, who is 7, has continued to ask me if Oli is going to be okay or if she is going to die. I’ve always reassured her that Oli is going to be fine but as time passes and she continues to decline I’m no longer comfortable saying that. The new conversations may have to include the fact that I just don’t know. I don’t know if Oli is going to be okay. I can’t even type those words without tears streaming down my face. How am I ever going to look my children in the eye and say those words?

Urgency from the medical team or not, I will continue to fight for my girl. I will advocate and be loud and pushy and questioning. I will also be a team player and despite numerous medical errors, one of which she is dealing with right now, I will continue to try and have faith in a medical system that I am severely disillusioned with.  I understand that I must watch everything, I must question everything. I must double check and verify.  And when something goes wrong, I will take the blame for it because I should have been paying better attention. I should have known. I now take on this responsibility and I take it on willingly because despite my lack of faith in the overall healthcare system, I have the utmost faith in myself. I have that faith because I’ve seen how the last 6 months has changed me. I never knew how strong I could be until I stepped into these new shoes that were way too big 6 months ago but now are beginning to fit just fine.

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Something is wrong with Oli. Part 2: What was happening?

11 Feb

I got a text from Oli’s dad a few hours later around 10am saying “She’s getting the full work up- Covid and flu test, CT scan because her tummy is super swollen and hard. Blood work and even a catheter.” I continued working that day and then took a break, heading into my front yard to begin putting up my outdoor Christmas decorations. I began putting up my Christmas decorations. I can’t believe I was so oblivious. As my little girl was lying on the uncomfortable, hard surface of an ER cot, fighting for her life, I was prancing around my front yard putting together Rudolf and blowing up a 9ft gingerbread man. If I could, I’d go back and punch that girl in the throat and tell her to get her ass in the car immediately! I was an ignorant, naïve person who thought nothing bad would ever happen to me or my family.

I was wrong.

The first few calls that I got from Oli’s dad made it sound like the hospital didn’t seem too sure about what was going on, but it didn’t seem like anything was too bad. I continued to go about my day. He said they had decided that they were probably going to admit her to the medical floor there at the Midland hospital. They were worried that there was something going on with her stomach. A little while after that I got a call from him saying that they didn’t think they could treat her in Midland and would be sending her to a children’s hospital in Lubbock. About 30 min after that update I spoke to a nurse who was taking care of Oli in the ER. Her dad had told the nurse that she usually goes to Dell Children’s hospital in Austin and wondered if they could transfer her there so she’d be closer to home.

The RN got on the phone and very candidly said to me “Look, she’s really, really sick. I’m not sure she would make it all the way to Austin.”

Not make it to Austin? As in she may not survive long enough to travel to Austin?

No, no, no, no, no. That can’t be what she meant. No way.

Did I ask her that question? What do you mean “she may not make it?”

No. No I did not ask that question. Why did I not ask that question? Why did I not hold her hostage on that phone and demand that she tell me exactly what was wrong with my daughter? Clearly I was not getting the full story. I don’t think her dad understood what was going on with Oli and he definitely could not relay and kind of useful medical information to me. It was like I was stuck in a dark room fumbling around, unable to find the light switch, but unwilling to ask the person with a flashlight for help.

I’m sure deep down I knew what she meant, but clearly at this point I was so far into my denial I just said “Ok. Get her to where she needs to be NOW!”

I also tried to rationalize that statement by telling myself that the nurse was just over reacting. I thought they were probably just freaking out because she was a kid, plus she has special needs so they’re just super uncomfortable with her and wanted to get her out of there and somewhere else close, fast.”

I still had no clear idea what was wrong with my daughter. No one was giving me any ideas other than her stomach was distended and hard and she was “really, really sick”. I think it was at this point in time that I began thinking it was a bowel obstruction and sepsis. I felt my own heart rate and blood pressure raise as I text her dad “Did they mention anything about a bowel perforation?” A bowel perforation is a life threatening emergency and is where the contents of the intestine spill out into the abdominal cavity causing massive infection and requiring immediate surgery. A bowel obstruction can ultimately cause a bowel perforation if not treated. He replied “no bowel perforation”. That was good. My heart rate slowed a little and I felt relieved that at least she didn’t have that. At the time I was thinking a perforation would be the worst case scenario. I replied “Then what made them decide to transfer her out rather than just admit her there?” He responded “They didn’t feel like they had the expertise to handle her.”

Yep. I was right. They were just uncomfortable and trying to get her out of their ER. It’s not that bad. My heart rate and blood pressure immediately went back to normal and I continued stringing lights around my trees and blowing up inflatable snowmen and Santa Clauses.

And off they went. They wanted to fly her from Midland to Lubbock but there was no flight transport available. I didn’t know that until later. There are so many things that I didn’t know until later.

My very, very sick little girl then had to ride 2 hours in the back of an ambulance. By the time they got to the ER her heart rate was 200 and her blood pressure was 170/110. Her dad called me when they got to Lubbock and said that nothing was really happening, they were still waiting in a room. I kept thinking that I was missing something. How could the staff see her vital signs and not do anything? I was still so confused. I think that confusion kept me from panicking. Surely if she were that sick and if those numbers were correct the ER staff would be responding to her, not making her sit in an ER room alone with her dad. That can’t be right. What was happening? Maybe I should wrap up outside. I began lugging the rest of the boxes of Christmas decorations back into my garage and traded them for a suitcase.

Finally at 4:53pm I got a text from him saying “Dr. Relves (a pediatric ICU doctor) is handling the business. I’ve got 15 people in here and her heart rate has dropped 50 points. We are having to intubate her to treat.”

Intubate her? Wait, what? We went from a possible virus, a swollen tummy, maybe a hospital admission and then an overreactive nurse all the way to “intubate her”. The room went fuzzy. What was happening?

After I read that last text my brain went into overdrive and I literally just started throwing my toiletries and clothing into a suitcase. I had to get there NOW.

I quickly sent him a response. “If you get to a place where I can be updated by a doctor I’d really appreciate that. I don’t have a clear clinical picture of what is happening.”

What was happening to my sweet girl?

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“Something is wrong with Oli.” Part 1: The beginning

10 Feb

It’s been such a long time since I’ve taken the time to sit down and tried to get my thoughts down on a page. So much has changed in the last nine years since I’ve focused on this blog (which, my teenager tells me “Mom, nobody blogs anymore”). And it has certainly changed drastically in the last three months. Three months ago I was living in a world where, although it was chaotic, was very comfortable and predictable. For the most part, I knew where each day would begin and where it would end. On November 22, 2023 that comfortable, predictable life changed forever.

My kids were in Midland, TX visiting their dad for Thanksgiving break. This was a Wednesday, the day before Thanksgiving, and they had been gone since the previous Friday. At 8:30am that morning I got a phone call from Oli’s dad. “Something is wrong with Oli.” were the first words out of his mouth.

I had just sat down at my computer to start working. Back in 2020 I began working for an Organ Procurement Organization called Texas Organ Sharing Alliance. I was hired as an Organ Recovery Coordinator (ORC) and took care of people and family members of people, who made the incredibly selfless decision to become organ donors. I worked with the donors from the time they were declared brain dead and their organ donation registry went into effect or when families decided to withdraw care on their loved ones and made the decision to give the gift of donation, until we finished in the operating room and the procured organs were on their way to the transplant hospitals and the recipients. Working as an ORC changed my life. The world of organ donation is such a different world and completely different from the type of nursing that I was used to doing. Although we take great care of our donors and they are our main focus as our patients’, we also have other people to think about as we make some difficult decisions on how to manage their care. We also have to think about the potentially eight other people who may receive this person’s organs. It’s also a different side of healthcare. Even though I was working as a nurse in an ICU, I was not an employee of the hospital. I was a member of the hospital’s healthcare team for this person, I was also not, because I was a third party. I got to speak extensively with the families of these patients and really got to know about their experience during this extremely tragic time. I also spoke extensively with the hospital care team and heard a lot about their interpretations of the family dynamics. I say “interpretations” because that’s really all they are. They are viewing that situation through their doctor and nurse lenses, not as a friend or family or confidant, but strictly though the eyes of a professional. I did not know how cloudy those lenses can be. Working as an ORC I got to see the vast discrepancies in these family members experiences and how they are viewed by the healthcare team. What a doctor or nurse may view as controlling, bossy and unreasonable, can really just be a family member who is just trying to manage the situation and juggle all of the healthcare balls that are up in the air of a person lying in an ICU. Trust me, I learned that there are many, many balls to juggle. (I will explain more in detail later.) Although I had all of these past experiences from working as an ORC, on that day, November 22, 2023, I still was not fully prepared to juggle them with the grace and confidence that would be required.

So on that morning I was sitting at my computer on a Teams meeting. I had transitioned out of being an organ recovery coordinator and began working remotely in the quality department about 2 years ago when my mom fell and broke her hip. The fact that I was not working onsite, in the hospital as a nurse full time, was such a blessing. Two years ago when I had to leave the ORC role, I was so disappointed and sad. I loved working as a coordinator. It was fun and so rewarding and I worked with such a great group of people. Little did I know then, this role change would save me. I believe that God puts us in the exact spot that we need to be in and when we need to be there. If I had not had a remote job, if I had not had that job for the length of time that I did, if I did not have the experience that I did, I would not have been able to do what needed to be done for the following months after that Thanksgiving morning.

This was my last picture of Oli before Thanksgiving. Pictured from left to right: Ginger (Oli’s little, not so little anymore, sister), Oli, and Me.

“Something is wrong with Oli”. Although looking back at it now with the luxury of 20/20 hindsight, I want to tell you that my stomach immediately dropped and I just instinctively knew that it was something very, very wrong. That’s not what happened.

“Does she have a sore throat? Ginger and Keely just got over a virus where their throats were really sore.” was my initial response.

He said he didn’t know but he thought it might be serious. Her dad told me that she had not been eating the last two days and had been making strange movements with her mouth. She also had not slept at all the night before and had lain awake, periodically yelling in her bed. He also felt like she was breathing really fast and her heart rate and blood pressure were high. He wanted to know if I thought he should take her to the ER. The ER? I was still confused and didn’t grasp the seriousness of the situation. I still just thought we were dealing with some kind of virus and sore throat. Why would her blood pressure and heart rate be high? Was their machine broken? Alarm bells still were not going off. I think it’s probably a reaction that a lot of people would have with a 16 year old child who never had any serious health problems. However, I still feel shame when I think of that moment.

I should have known.

Oli and I have such an incredible connection. I wake up in the middle of the night sometimes, even when I can’t audibly hear her on the baby monitor, and go downstairs to find her lying awake. It’s like I just know when she needs something. This connection would serve us well in the following months, but I did not seem to be able to tap into this super power on that particular morning.

She’s breathing fast?

“Facetime me so I can look at her breathing” I told him.

We started the video and finally the alarm bells began to ring. She looked horrible. Her color was off and she looked like she was barely conscious.

“Lift up her shirt. I want to see her breathing” I demanded.

When he lifted up her shirt those alarm bells turned into blaring, deafening sirens. Her stomach was absolutely huge. It was way bigger than I’ve ever seen it. Oli does suffer from constipation so I thought maybe she was just having a bad case of constipation. Although it shouldn’t cause the color change. And why did she look so bad, like she couldn’t stay awake? Maybe she was just finally drifting off after being awake for 24hrs. The questions were spinning through my mind followed up swiftly by logical explanations. This couldn’t be serious. Oli’s so healthy. I’m sure there is an easy, non emergency explanation for what is happening here. Serious stuff doesn’t happen to my girl. She’s invincible. I was not panicking. She was going to be fine.

“Yes. I think you should go to the ER. Just to be safe.” 

He hurriedly ended the call, telling me that he would call me as soon as he had any news. He had a way more clear and serious grasp of the situation in that moment.

This is the next picture I would see of my indestructible girl.

To be continued….

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10 Jun

Silently planning a future

I am currently listening to a webinar about planning for the future for Oli. PERSON CENTERED future planning, with an emphasis on person centered, meaning that I am supposed to include my child and her voice and her choice about what she wants to do in the future.  I am supposed to encourage and support her to figure out what she wants to do in life and empower her to fulfill her dreams.

What?

Ummmm…. I am supposed to include my child in planning for her future when this same child cannot even tell me when she needs to use the bathroom.

This may not be the webinar for me. Did I sign up for the wrong one? Did the advocate that suggested this webinar, the same woman who has known us since Oli was 2, not realize that she literally has no voice? She is fantastic and this is not a dig about her, but more about the system itself. Where is the webinar for kids like Oli? The answer is that I don’t think they exist. Not like they have them for kids who can in some capacity participate in the decisions surrounding their life. What kind of choice can I give my silent child?  A child who is no longer a child but a 14-year-old young woman who still relies on her mother for every single need.

I absolutely need to plan for her future but planning for her is so very different than when I think about the future of my other children. There is no her without me. There is no future for her that does not include me. No matter where she goes or what she does I will go, and I will do as well. As I sit here and listen to this lecture telling me that it is not my choice as her parent to make these decisions but her choice as the person with the disability, I can only laugh.  And cry a little bit too.

I started this blog 7 years ago. 7 years. Half a lifetime ago for Oli and I wish I was sitting here telling you that so much has changed. I wish I could tell you that together we were sitting here planning this fantastic future for her and I was pushing her to dream hard and dream big, that the sky was the limit for my beautiful girl.  Right now, I can only tell you that the world, her body, and her mind have placed so many limits on her that I don’t even have the faintest idea on how to navigate them.

I know that I need to plan. I will blink and she will be 18. I will need to stand before a judge and hope that he grants me guardianship. A single tear will fall, and she will be 22. I will need to find a place to fill her days because she will no longer be allowed to attend school. A rose will be thrown on a casket, and I will be gone. She will be alone. Who will take care of her then? I think that is the most unfair thing about Oli’s disability. The world moves on and I grow older, and it seems that she just never does. She remains the same.

It’s so unfair. I see glimpses of her in the way her whole face lights up when she laughs. The quiet intensity of her jaw as she listens closely to her surroundings. I see rays of sunshine glow on her skin and I think about how different our life could have been.

I use that word a lot.

Our.

We.

Us.

 I almost can’t even think about her as a singular person, she is so entwined in the very fabric of my being that I honestly don’t even know who I would be without her. When I think about planning for her future, I must also think about mine. What will we do? Where will we go?

In a few years it will only be Oli and I. Living out our lives as one. I always imagined that we would move to a beach in Florida and live out our lives like a couple of Golden Girls. Maybe we can meet another mother daughter duo and all live in a fabulous wicker filled house.

I don’t know what the future holds. I know that our life in no way, shape, or form, has turned out the way that I thought it would have 7 years ago when I started this. So much has changed. Some for the worst but mostly for the best.

Oli is happy.

I am happy.

I look forward to dreaming big dreams for my girl until the day that she can share her own dreams with me.

 Maybe she will one day.

Maybe.

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A feelings box

30 Dec

I stopped writing and my world fell apart.

It sounds dramatic.

It’s really not too far from the truth.

How can the non existence of one action cause such destruction?

I’m only beginning to grasp an understanding of how this happened.

When Oli was born I taught myself to ignore my feelings. I learned to stuff them down, deep inside a box and I never looked at them. I never experienced them. I just left them there in the box to rot. They were left rotting there until their foul, putrid contents bubbled up and out and spilled all over me and everyone around me. That box was filled my pain and once escaped, it became its own living being. A pain body. It completely consumed me. It wasn’t until I recogized it for what it was and looked at the foulness that had splattered all over my world, that I began to cope and accept those ignored feelings. I took that mess and laid it all out onto paper. I didn’t heal until the pain and fear and anger and sadness were turned into words.

Now I find myself back in the same boat. I’ve stuffed four years of hurt and fear and anger and sadness into a damn box again. As I sit here it actually feels like 15 stuffed feeling boxes that are just sitting and festering.

I stopped doing all of the things that I know to do and let a relationship control me. I stopped being me and became someone else. I lost myself in the chaos that I created when that feelings monster, that pain body, erupted from it’s crypt once more.

I really want to tell the story of the last four years, and I will eventually, but right now I don’t even know where to start. I know it partially began when I tried to become this perfect “fine” me that I just am not. For some reason I couldn’t let my husband know that I didn’t have my shit together.

Why? Why do I pretend to be fine?

When I started to become hurt and scared in our relationship I do what I do every time I feel things I don’t want to feel. I simply stopped feeling.

I’m sure this behavior was learned way before Oli came into the world, but I know I wasn’t aware of it until then.

So now I’m back at the beginning. Well… maybe not the beginning. I believe everything that happens in life happens as it is supposed to.

How do we know that this is where we are supposed to be in life? Because this is where we are.

I don’t know what will happen with my husband or our future.

I do know that in order to find “myself” again I must unbox the last 1,840 days worth of feelings that I am just now trying to look at and trying to experience.

It’s painful. It hurts. But it’s better than feeling nothing.

In order to get through it I have to write.

I do find it slightly ironic that my very last blog entry in Aug of 2015 was about how I run to cope with my feelings.

I pretty much stopped doing that too.

I seem to learn a lot about myself through this blog.

So today, in order to start putting my world back together, I am running and I am writing.

Thanks for reading.

 

 

So I run

5 Aug

It’s been 6 months since I’ve written.

Probably even longer since I’ve written anything with 100% honesty in my heart and left it all out here on the page.

It’s been 8 months since I got divorced.

It’s been 1 hour since I decided to not let the fear of who might read what I’ve written stop me from being true to myself and writing what I need to, to cleanse my soul.

Running and writing do that for me.

I get a lot of flack from people for running and working out as much as I do. I run almost every day. Lift a couple of times a week and compete in triathlons.

“Why do you run? Why would you do triathlons? That’s so much work! You must like pain and suffering.”

Maybe I do.

I swim until the muscles in my shoulders and back ache. I ride my bike until my legs and butt burn so bad that I can’t crank the pedals one more turn. I run until the sweat drips from every inch of my skin.  I run until the pain in my heart becomes as numb as my legs.

I run because I don’t know what else to do with my feelings.

I run so that I can drown those feelings with sweat and let the unspoken words loop endlessly around in my brain until I’m too exhausted to speak them.

There are days when I feel like I’ve come so far in the past 8 years since Oli was born. I’ve come miles and miles from where I was 3 years ago.

But sometimes I just have a moment.

Or a day.

Or a week.

Or a month.

Sometimes it feels just like yesterday when I looked at the tiny baby sleeping in the cradle beside me and wondered if I could ever love her enough. If I would ever be enough for her.

I don’t have a problem looking at her now.

I don’t have an issue feeling for her. For accepting her and pushing her and dreaming for her and advocating for her and being her legs and her eyes and her voice and the interpreter between her and the rest of the world. I don’t mind teaching people about her and answering questions and embracing the differences and cherishing the moments.

I run into to trouble when I try to do all of these things while looking at me.

I run into to trouble when my mind merges with my heart and I’m left feeling less than and inadequately equipped to deal with all that comes with being a special needs mother.

So I run.

I run for her, with her, towards her.

And sometimes I run away from her.

I run away from the pain.

I run away from the fear of the future and the unknown.

I run away from the therapists and the doctors and the never-ending appointments.

I run away from the ARD meetings and IEP’s, missed goals, reports of plateaued progress, regression and missed milestones.

I run away from myself.

When I talk about her, when I talk about us, I still feel the need to justify everything. To throw my FINE’s at the world and scream from the top of my lungs WE ARE FINE! DON’T YOU KNOW HOW FINE WE ARE! NO! THOSE ARE NOT TEARS! I HAVE SOMETHING IN MY EYE!

Why do I do that?

What’s so wrong with being not fine?

I still haven’t figured that part out yet. I don’t know what’s wrong with talking about how I feel.

I still haven’t really figured out how to feel how I feel. If that makes any sense at all.

When Oli was born and the pain and despair simply became too much for me to bare, I turned all of my feelings off. It was so much easier to be numb than it was to face another day literally drowning in my fear.

Now 8 years later I’m trying to turn them back on.

It’s harder than you’d think.

So I run.

I run and I run and I run.

The tears melt into sweat and neither can be distinguished once they drip from my nose.

I’ve pounded miles and miles of trail with my little wet feelings littered behind me.

One day, I hope to be able to talk as much as I run.

Until that day…

I’ll run.

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