Last Wish

 

    

    My best friend in the whole entire world walked away from me and never looked back.  Yes, I check in on her on social media every now and then because I still miss her. 

    I left a narcissist with having had the last word, because leaving them with nothing was better than anything else. To this day, that was still the right decision because I deserved more than that fake apology in which they turned it all on me in the end.  

    I have been victim shamed and gaslighted by people who should have been protecting me. 

   I lived a childhood that most people never experience their whole life. Images still hunt me to this day. 

     I learned the darkest darks that happen when life starts to shut down. I witnessed loss, and I experienced loss. I learned what true heartache was before I was old enough to drive. I learned really fast how lonely and empty life can be for some people, and it's a really big dark hole.

    I fought to escape a twisted spider web of delusion which mixed what is with what isn’t. But I made it out. 

     I was determined to leave this life with something big and beautiful behind. I have all these big huge feelings inside and sometimes nowhere to put them. Where is everyone?

    Everyone is struggling. Everyone has something. And I don’t say this to dismiss my own struggles. But I say that with the empathy I learned as a child. Everyone is circling the drain. 

 
  There is reality and then there is the reality that people think is.  It’s the reality of “everything is okay” but the actual dimension we live in is not “okay”. I see you though- and I’m over here. I’m hurting too, but maybe we can hurt together?  

        When I die it's my last wish that I was good to you. Not just good to you, but that leaving you will leave you with a loss. I want to die with guilt, knowing that leaving you will leave you with a big gaping hole cause that means I filled someone’s life with love, hope, and meaning. At least I would die knowing I tried as hard as I could not to hurt others how I have been hurt. To be the one who heals someone. To be the one who fills someone with love and joy. To be someone's anti-venom to the toxins we're drowning in.

    That's my wish, that is what I hope to leave behind. 

                            A legacy of love. 

The first test.

So here I sit, waiting for my first COVID-19 test.  Less than a year ago I wouldn’t have even known what a COVID-19 test was. 

I remember it was the middle of December, December 2019 like it was actually a month ago. 

On Good Morning America, they were talking about some new virus in China that was going around. 

It all seemed like a movie, or something that would blow over, or just stay over there. 

But here we are January 2021 and the entire world was taken over by a sweeping virus that abruptly took over the lives of nearly every human on earth. 

As a chronically ill individual, a global pandemic has so many repercussions. 

It’s not JUST wear a mask, sanitize and wash your hands, keep your hands off your face, but it IS so much more. 

It’s a sudden halt to necessary medical infusions at the hospital.

It’s postponing the MRI’S your doctors wanted but decided it wasn’t worth the current risk. 

It’s learning how to self infuse yourself at home without the safety of trained medical professionals around. 

It’s not being able to go into the grocery store to buy your own groceries.

It’s having pain and heaviness in your chest but trying to decide with hospitals at nearly full capacity with COVID-19 patients what the greater risk is, going to the hospital or staying home. 

It is so much more than a virus that people are either asymptomatic with or dying from it.

It means that now I am waiting in line at a drive through test site to ensure I don’t have COVID-19 before I head into a cardiac stress test next week.  But I’ve been isolating and my doctor has not, so this COVID-19 test seems so unfair.  

I feel so exposed and helpless. My doctor has deemed this medical test necessary and I know it is. 

But this time last year, I wouldn’t have been here. Come January 7th I would have just driven up to Syracuse, did my test and that would be that. But not now. Not in 2020, and not even in 2021. Life has changed. And when things settle down, or if they do, it will still be different. I won’t take for granted the ability to just drop into the doctor when I am feeling unwell, or have a necessary test completed and have the only issue be a scheduling conflict.

So I guess what I am saying is despite all the fear, the heaviness and the stress, 2020 taught me to be grateful.

Grateful for the quiet moments at home.

Grateful for the ability to feed my family even if I am not personally picking out my groceries. 

Grateful for modern medicine, despite its failings. 

Grateful for my husband who has been my rock through all this.

Grateful for modern technology and the capability to keep friends and family connected despite the physical distance between us all. Being chronically ill means there is often a lot of distance between me and friends or family, but the world turned upside down when the pandemic took over and now I miss out on less because of technology.

So despite having a stick shoved in my throat or nose today, I will be grateful for something, for anything, for everything; because a stick in my nose, or a test in 4 days, or surgery in 8 days means I am fighting for all I have and for all that I am.  

24 days ago.

Here I sit with smudged makeup that's not for show. Smudged makeup cause no matter how hard I tried, I couldn't stop the tears. I couldn't shut my head up long enough to turn off the faucet to my eyes. 

Fair warning: I am presently weaning off a medication due to the risk it may cause my heart- but weaning off the medication will cause me to be ridiculously real in my writing. So if you’re looking for unicorns and rainbows- you probably won’t find it here. But you will find me being authentically honest. 

I say I'm an open book. So here it is, the newest chapter. 

It's been 24 days. 24 days since the cardiologist was honest with me. But even at that, he still didn't tell me enough. He left me with a diagnosis and explained what it meant, leaving me with an animated visual in my mind of how my heart is functioning.

But attending a medical appointment in a pandemic meant being alone and stressed about being there in the first place. And being alone, I failed to ask all the right questions, or any questions for that matter, despite him giving me plenty of opportunities. But now I have questions, questions like: Can this be reversed? What is causing this? Will it shorten my life?

I hear his words echoing in my mind, “Your heart is strong. But you have diastolic dysfunction.” And at first I simply thought, “Yes, I know that”- because I read my own echo report weeks before. And I had seen “Diastolic Dysfunction, grade two” but for some reason I focused on the "Left Ventricle Hypertrophy" when researching the results. 

But he broke it down and explained what it meant. To be honest, I was at first happy he finally told me instead of skirting around discussing the report.   

Now as the days have passed, my heart has found itself in an emotional state of shock. 

So I thought,  "I have two Hopkins appointments coming up. They'll explain it better and I'll ask for stronger treatments and that will make it better." 

But what I got was an answer I didn't want.  

I'm still an enigma. 

"Enigma." 

Sidenote: I kind of hate that word now. 

They believe I'm already on possibly the best treatment for this autoimmune disease that is hopefully helping to slow the disease down.  But at this point, that statement is simply theoretical. 

However, Hopkins now wants to do an entire genome sequencing on my entire family because whatever this rare disease is, is ultimately causing all the problems. 

They told me it seems to parallel scleroderma, yet it's not scleroderma.  

And for my heart,  there's two meds. One I can't take because having POTS as well means regulating my fluids carefully, I need fluids for POTS. I need less fluids for diastolic dysfunction. 

The suggestion of a cardiac second opinion was considered, but again, there's this thing called a pandemic sort of halting everything. 

The lack of answers and lack of patience on my part has me progressing through multiple stages of grief. And currently, I’m stuck on guilt. 

Here I am sick, at no fault of my own. In fact, I’ve been pushing for answers, for treatment, for acknowledgement, direction for the last 13 years. I’ve pushed past the collection of doctors who insisted there was nothing seriously wrong with me. 

But my gut told me otherwise. My gut told me to not stop until I had my answers, until I was happy. And finally, after 13 years of the chase I am on a treatment and have a panel of doctors who believe me, which trust me means a lot.

Except now this is one more thing and it’s kind of a big thing and I am kind of too young for this-- which along with "enigma" I hear a lot. 

So here I sit at 1 am because despite benadryl and melatonin, I can’t sleep cause my body is exploring these stages of grief, and it’s currently overflowing with guilt. The guilt then shifts to anger because WHY? Why, one more thing? And freeness to speak please?Here comes the statement/question that maybe we've all felt at some point in our life,  "why me?"

I truly hate thinking it, let alone saying it outloud because it doesn't feel like me to say it, but-  "WHY do I have to be the sick mom?"

I’ve already lost so many opportunities with my girls. However, I had finally come to terms with that and was enjoying and thriving in the quiet moments at home with them.

I have not just accepted but embraced the fact that it’s not about the things we do, it’s about the love we have. And I have so much love for them. If love alone could keep my physical heart going I could live forever. 

But in this life the human heart cannot survive on simply love alone (though it certainly helps). So now it feels like my body has moved up my expiration date. And I’m not ready, not even close. 

So this is the storm. Storms come and go in life and that's never going to stop. But after a storm, comes that beautiful smell of cleansing. And sometimes, the storm leaves behind a little gift, a rainbow. And that rainbow helps you to forget about that storm, at least for a moment. 

Hopefully when (if?) the thick of this pandemic lifts we'll move forward towards a better answer than what I have right now. I can’t stay stuck. I won’t stay stuck. There's still more rainbows to see.

Lessons learned....

2017 taught me a lot.

As each year passes and one December comes to an end and another January begins those subtle thoughts begging for this year to be a bit calmer and better were wildly alive in my head.

2016 seemed so completely overwhelming in ways most people had utterly no idea. There was the obvious job loss, health and financial struggles, but there was much much more that not many knew about. So the internal pleading for 2017 to be better was loud and clear.

There was hope for a physical turn around, for treatments that were promising.

There was hope that things would settle down and be calm for a half a second.

There was hope that there would be a greater understanding of what was going on or that empathy would be as available as judgment was.

But what really happened is 2017 taught me that when I thought I couldn't take anymore, that I actually could.

2017 taught me that when my heart felt its heaviest that it could actually be heavier.

It taught me that it is in fact okay to cry. And near the end of the year, cry I did.  I'm still waiting for those flood waters to recede. 

2017 taught me that no matter how incredibly hard you try to be accepted that not everyone will approve of nor accept you. But sometimes those disapproval's are only in your mind and not in reality. I am still learning how to identify the difference. 

It taught me that whether you are a fellow human being or a feathered friend, if you've touched my life somehow I'll never ever forget you. 

It taught me that no one is replaceable.

It taught me that the broken parts of our hearts may never actually heal, we have to just keep infusing it with joy after it seeps out through those broken cracks.

It taught me that while I may be an x-ray for people's emotions, they are not for mine. So faking the smile that I do so well cause I can't let people see the hardest experience of our lives helped no one. I can't be angry at anyone except myself because they had no idea what was going on.

So with all that came the hard learned lesson that you can't help everyone, and sometimes, you can't actually help anyone and that becomes a real emotional drain.

But then amidst all this 2017 taught me that love is a motivating force. 

Love conquers the pain in my heart, even if only for a moment.

Love wraps my injuries in a protective bandage.

Love quiets the crazy when I finally let it.

Love makes the beautiful and gentle magnified for me.

Love places itself on a platter and serves it to me on my darkest and sickest days.

It is always there,

In the form of two little girls.

In the form of one amazing husband.

In the family that never gives up trying, hoping, and growing. 
In the form of our furbabies that become family.

In the friends who support and not judge, who ask the questions no one else did, who acknowledge what is going on who undoubtedly have my back. 

So 2017 taught me so much. It showed me what matters.

It showed me when you think you can't go on that you actually can and you actually will.

Now,  as it nears fall of 2018 and I reflect on the past nine months, I'm fully aware that 2018 hasn't settled down like I begged it to. It is still loud and overwhelming and refusing to shut up....... And I kind of think that is simply life. 

So it's one step in front of the other, have a cry, wipe the tears, see the stars through the darkness and  "just keep swimming."

Insecurities.

I've had a lot of time to think lately. The few days that I've been totally down and out has left me thinking deeper and feeling harder.

To pass the time I often listen to songs of love and deep emotions. They share feelings of being totally protected and guided in life by someone. In secret as tears fall from my eyes as I imagine their feelings.

I am left with one solid thought that doesn't shift or go away, it is always there.

I want to be that for someone.
I want that so bad.

I want to be the mom that makes their babies feel like ten million dollars. That makes them feel safe and supported, warm and protected in my arms. At the same time I want them to be strong faithful girls that realize life is not going to be easy or in any way a fairy tale. And I want them to be okay with that, to take the story by the pages and don't be afraid to keep reading and keep moving forward. I want them to know there will be good days along with the bad and that they just have to keep pushing on cause eventually the rain will stop. I think I am doing okay. I feel their happiness in their lives. They know things aren't perfect and despite that they are so happy to just breathe, to laugh, to exist. And that makes me feel like I have done something right.

But then my thoughts shift to the area's in life that I seem to be failing at. To the area's that I can't seem to get right and I seem stuck at an endless red light. I wonder what do I do now, do I risk moving ahead?
But all the "what ifs" take over in my head instead.
What if they can't love you? What if you aren't enough? What if your failings are too much? What if they cannot handle who you are, so they walk?
Why do the "what ifs" of insecurities cripple us? Why do the doubts have to be so heavy and hard to bear?

I have so much love inside and yet cannot get it out or cannot show it well enough to the ones that deserve it the most. Or the ones I want to show it to seem satisfied without it.
And that's okay- but how do I become okay with it? How do I not let the insecurities of myself not take over? I feel the endless need to figure this out so I can teach my girls. I want them to be okay with rejection, to be okay with not being wanted, to know how to share the love they themselves are filled with -- without the fear of being hurt. And when they open up and feel the bitterness of hurt in return how can I teach them they'll be okay if I am still reeling from my past?  I have already seen my girl give her whole heart and had it returned back battered up. You see, not everyone shares the same commitment to people as we ourselves may.  I have a hard time understanding this. How could a fellow breathing human being be so heartless at times, how can they be so disconnected from the feeling of others, how could they be so dismissive, so okay with hurting someone else? A question I can't find an answer to and leads me to the big huge thorn covered wall that currently guards my heart. I have installed a secret door with multiple locks that I have occasionally opened up to get a taste for what's out there.

But eventually I find my way back behind my guarded wall and put up the locks.

This causes what you see today, a grown woman still crippled by her insecurities only wanting to help others, in search of giving and receiving love, just wanting to be someone's person who they want to fight for. Anyone can be someone's person, but being someone's person worth fighting for is something amazing, something beautiful.

So there it is. All my insecurities in one little blog. But what I am slowly learning is that it is OKAY to have insecurities. Hiding them and pretending they don't exist is not okay, cause how will I ever grow if I am not prepared to address them? How will I ever teach my girls how to deal with their insecurities if I am left hiding behind mine?

So if you don't like what you see, if you don't like when I show you the real me, all the raw and real emotions associated with who I am - then that's okay. Cause I am learning to love me and if you don't like who I am flaws and all then keep moving on. If you prefer a squeaky clean non-battered person than I am not your person. I am real and have felt and seen things many people have not. So if I am too much for you, that's okay.

But it's your loss.

So if you're reading this and facing similar insecurities remember this:
You are enough. You can do this. You will get there. And finally if they don't want to wait for you, it's their loss.

When motherhood meets doubts.

(Photo by Gidde Yup Images)

There are visions in my head of how life should be.
I think we all have them, the thoughts are endless really.
When we wake up we have them, before we go to bed we have them.
How is life going? Is it all I hoped it would be? What do my children think of me as their mother, as their parent? Am I all they could hope for? Am I letting them down somehow, somewhere? Is my illness ruining their life?
"I need to give them more. I need to expose them to more, show them more, let them experience more."

Is it never enough?

I know I have many shortcomings. Whether physical, or emotional, there are so many.
When my babies tell me of their endless love for me and that they would never ask for another mommy, I have at times thought to myself : "Really, but why?"

What is it that makes them so content to be with me? And then I think, how long will they feel this way? The doubts of myself are endless and ever evolving.

But I know I am not alone. 

I know there are so many other mothers out there doubting themselves too. I know they think the same thoughts. They feel the same endless worries.

So here's a letter to all the moms, including myself, who are stuck in this cycle of self-doubt and criticism.

Dear Beautiful Mothers:

I know you are so tired. You are overwhelmed with everything life has thrown at you. Life has thrown some hard balls you never saw coming. In those moments it was as if the ball hit you in the chest and you did all you could to simply keep breathing. But you did, you kept breathing, for them. You pushed on, for them. You didn't stop, for them.  

They may not understand how hard you tried for them in that moment but maybe they do. They see more than we realize. They take in every single moment, action and word. They see when you are hurting, they see when you are pushing through it pretending like everything is okay. They see it, trust me. And when you think you have been a monster for simply reacting to life, perhaps you aren't the monster you thought. Trust your children when they tell you what they think of you.

Instead of questioning their love or your abilities, for once simply listen to them. Take the kisses and promises of forever in this moment. Stop doubting everything you are and feel the love they are radiating. 

Someone taught them that love,  someone showered them with those kisses that they now return. Someone helped them feel so full inside that their little hearts are overflowing with love now. That someone was you.

There are reasons why no one else will do when they are sick, but mommy. 
Why they want you there for special moments, even if its as simple as a first swimming lesson. 
You are their comfort, you make everything better, even if you can't, they see you try.
Despite in our grown-up world everything seems to be falling apart, you are keeping their world together.
They simply cannot imagine life without you, they don't imagine it on purpose cause it stirs up within them emotions they cannot handle. 

So when they say they love you, trust it.
When they say there is no other mommy in the world they would ever want, believe it, allow yourself to feel it deep in your heart cause they mean it. 

Even if you have additional struggles like an endless health or mental condition, that will only make them soft in a world that is so incredibly hard. 

It will teach them to be kind to others cause you never know what a person is going through under their seemingly fine appearance.

It will help them to be aware of the bullies and make them strong against them, cause they've seen what you go through.  

It will make them a strong little person who will grow into a strong comforting adult. 

(Photo by Gidde Yup Images)

They won't be perfect either,

but their empathy and kindness towards others will be something beautiful to see. 

So give yourself a break. Stop doubting yourself so much. 
When your babies exclaim their love for you, take a moment to see the reasons why. 

You'll see them if you try, if you let yourself. 

Sincerely,

Simply another loved mom

The day I became a zebra.

"When you hear hoof beats, think of horses, not zebras."

I remember it like it was yesterday. I was at yet another rheumatologist appointment hoping for some sort of answer and direction.  Like usual, I begin to hear that all my labs for the specific antibodies they are searching for all came back negative.

Normally, people think this is a good thing. But when you've been sick as long as I have, you are craving answers. Hearing 'negative' just means that you start to question to yourself- if you are really sick.  I mean, are you? Yeah there's definite abnormalities to your bloodwork which is why your rheumatologist is so determined to figure you out.

But maybe you start to think to yourself, that maybe everyone has some abnormalities and you are just overthinking how you feel. Just suck it up. Everyone is as exhausted, everyone hurts this much.

As she listened to my lungs and I focused on taking deep breaths and fighting to keep a super brave face on, she suddenly stops and quickly returns to her computer. I sat there, with my heart in my foot and my insides feeling the feeling of defeat that I had become so use to feeling, she pulls up one of the test results. "Well there was something actually."
One of the labs that had to be sent away to a research facility did not find what it was sent there to find.

"They found several unknown antibodies" related to connective tissue disease.
I felt myself wane sarcastic as I replied "You mean, like an 'Ashley' disease?"
"Yeah, pretty much" was the response from my rheumatologist.

I felt slightly irritated as it was not the first time I had heard this from friends. And here my doctor has just told me I have something that present day technology and medicine does not know what it is.
I became a zebra in that very moment.
What does that even mean?

"When you hear hoof beats, think of horses, not zebras" is an old medical saying meaning, usually it is not a rare unknown diagnosis so don't jump to that conclusion. Its usually a horse- not a zebra walking in. I was the zebra. Doctor after doctor would look at me, look at my labs and shake their heads in complete confusion.

Finally the day came when I got to be seen by a real life Doctor House and his panel of doctors and assistants. They took notes, looked at my labs and talked back and forth to each other of their ideas.
"She definitely has autoimmune disease."
"Yeah, a crazy autoimmune disease."
My husband dared to ask the question that has been on my mind for 9 years.
"Do you know the name of it?"
A little bit of silence, and a little bit of laughter swept through the room.
The doctor replied- "You want a name for it, do you really?"
He smiled compassionately and said "The Ashley."
After my husband and I laughed he got serious and said,
"We would call it systemic auto-immune disease because I believe its affecting multiple organs." This one doesn't have a known idenity just yet.

Then one of the other head doctors chimed in said "Look, lyme disease existed long before they knew about it. It is real and was real to all the patients who had it. Just because they hadn't discovered it didn't mean they weren't very sick, all while people and doctors had labeled them as crazy."

But I am not crazy. I'm not being told I am overthinking it, have had too many tests done, or that I should not be worrying about that stuff and to go live my life.

I was told there are treatments and they want me to feel better. It won't be easy but doing nothing is not helping me and we can't continue on that road.
There was suddenly hope. Hope that while my kids are still kids full of life, love and energy in this present life that I might be able to keep up with them. Or hope that my body wouldn't hurt so bad.

They've identified the source of the problem (my immune system), they are determined to try to fix it, not just put a band-aid on it, not just throw drugs at me and call it a day.
This will be a process, this will take time, adjustments, and many more discussions.
But this something is a lot more than the nothing I was facing.

The journey continues............


Here's a little video of our journey to Hopkins:

If you know in your gut that what your doctors has told you is wrong or not making sense, do not stop trying to get answers. They are not perfect, they are not always right. But eventually you will find one willing to search a little bit deeper and try a little bit harder. Don't give up!

Reasons.

On days with pain, fatigue or other illnesses, life can feel so daunting, so dark. 

Imagining growing old when you already feel 20 years older is a thought you 

try to not even think about.

Some days you are left with nothing but a broken heart held together

by pain pills and heating pads.

On those days it’s hard to not feel like a burden on society.

It’s hard to even feel human.

It’s as if you are a living the life of a decomposing corpse.

“I just want to be normal” is on repeat in your head. 

You anticipate the next Dr appointment with such hope. 

But so often your hopes are cut up with the razor sharp edges of disappointment.

It’s always a wait. 

Wait for this flare too pass, wait to see the doctor, wait to try the only treatment they think will work

but insurance will fight it until you give up. So you keep waiting.

It’s hard to keep holding on.

I won’t lie, I’ve had those dark moments of despair.

The feeling that it’s never going to go away, not in this life anyways.

The feeling that my world is unraveling before my eyes and I simply can’t stop it.

I have felt like a burden to my family.

I have felt hopeless despite my efforts to hold onto hope so tightly.

Let me tell you how much that all hurts.

It is so easy to lose sight of the beauty that still surrounds you or the fact that hope still remains for the future.

It’s easy to forget the reasons for your fight.

Yet in those moments its imperative that you remember your reasons to keep pushing on.

My reasons never fail to tell me how much they love me as I am.

My reasons remind me that there is no other love for him. 

My reasons provide me with butterfly kisses and hand drawn pictures of how they see me. 

My reasons tell me they would never ever want a different mommy.

They tell me how much they miss me when they are gone for just a couple of nights.

They are my reasons to keep fighting and I cannot give up now.

Those reasons remind me that there is a light at the end of the tunnel after all,

 even if another tunnel is right around the corner.

Those reasons help me laugh again and for a moment they help me forget the pain. 

For a moment those reasons warm my heart that had become chilled from the bitter cold of never feeling good enough.

They help me get through the thorn bushes of life.

They remind me that I simply have to get through it cause when I get to the other side,

I might have some wounds from the thorns tearing up my skin but I’ll be stronger from it and maybe I might be able to help others if I don’t give up now.

I might be able to help my very own reasons in the future.

If I keep fighting for answers and treatment maybe I’ll save them from walking the same exhausting path I am walking. 

So please remember even in your darkest hour you have reasons to keep going, to keep fighting, to keep breathing.

Nope it’s not easy and there will straight up be days that you forget your reasons to keep fighting.

But when a new day begins try to remind yourself of the reasons why you are fighting so darn hard. 

We all have them, sometimes we just need to remind ourselves what they are.

Make a list of what they are so that on bad days you don’t have to work so hard to see them.

Whatever your reasons are – hold onto them, don’t let go and keep fighting.

The dark side of guilt with chronic illness.

Being a mother brings with it the most amazing feelings. It has an almost out of body like feel to it. Thoughts of how this little person could amazingly be yours. 

A real live little human who is breathing,  growing and simply stunning in every way. 

Being a mother means you’ve begged time to stand still. You’ve watched the clock only for time to seem to fast forward in a way that cannot be controlled. You’ve spent hours breathing in the smells of your babies, hours gazing on their little faces,  memorizing their each and every detail. Knowing every freckle, every dimple and even the very length of their long eye lashes that you secretly envy. How could they be so perfect?

I felt all these feels. I owned them. Embraced them. Breathed each and every emotion in. 

Time argued fiercely with me, time demanded to go on. It demanded to take my newborn into the next stages of life. It demanded they grow faster than I thought possible,  that they go from helpless to crawling, from crawling to walking and to eventually becoming their own little person full of their own unique personality making decisions for themselves. 

Time refused to stop. 

When I worked and the workday came to an end I would immediately rush to pick my babies up. Another minute could not pass without seeing them, to once again breathe them in and feel their arms tight around my neck. 

Then something happened. 

Time caught up with me. Time demanded that I know now that all the years as an exhausted and fatigued teenager had been there for a reason. 

Time now nearly stopped. Time stood still as pain took up a permanent residence in my body.  Days turned into weeks,  weeks into months,  and months into years as I struggled to understand what was happening. Why was my focus on my babies being so blurred with pain? Why did I go from begging time to stand still to now begging it to hurry up? Hurry up to get answers. Hurry up to feel better. Just hurry up. 

Pain is a tricky thing. It shifts your focus to just getting past that moment. You wait impatiently for it to pass. But while you are waiting for the endless and chronic pain to pass in what seems like a frozen moment in time,  life keeps going for everyone else, including the babies you begged to slow down. 

But suddenly with life wearing you down with the exhaustion of an endless flu you find yourself almost wanting your babies to grow up just a little bit more. To not cry so much. To be able to express themselves with words and not just a display of emotions. To be able to soothe themselves just a little bit, as you don’t have much left in you to soothe them. 

Yet, you do anyways because they want you. So in pain and in exhaustion you give your babies what very little you had left.  And what you had wasn’t what a typical parent has left. You were already empty, but you poured the last few drops out for your babies. 

Making the greatest joy you once had of parenting now the biggest struggle you could never have imagined. 

Your thoughts shift to a time when they maybe won’t hang on you quite so much. When they won’t cry so much. You wish them older and yet while you are doing that you wonder what has become of you -because you know deep down inside that time already moves way too fast. Way-too-fast.

Now their childhood is becoming a blur. Memories are mixed with thoughts of pain. Though there may be many wonderful times and good memories are still being made for which I am beyond grateful for,  it’s so often tainted with a flu like feeling. 

So with all this being said, I realize there is a great sadness behind these words. There is a bitterness that lingers in the air.

Bitter that one of the greatest joys I have ever known had been so abruptly altered for me. Bitter that I couldn’t completely enjoy my babies without the heaviness of guilt hanging over my head. Bitter that there are days I need to rest and my babies need to be away from me. Bitter that their mom can’t be just like their friends mothers. 

Yes, I put on a good show when I have to,  I can usually pretend this chronic condition doesn’t exist when it calls for it but not without a cost. Pretending to be normal will almost always result in a need to beg my body to forgive me. 

But I’ll beg my body to forgive me for the rest of my life if it means making memories with my babies. 

However, I can’t help but wonder what life is like as a mother without endless chronic pain and exhaustion. 

I can’t help but think what life would have been like if this illness just held off until my children were grown. Would I feel less guilty? Or less bitter about missing out on too many moments?  Less torn between my bodies demands for rest and the insanely strong motherly instinct to be there with my babies? 

Or will that feeling regardless of their age never go away?

So if you are a mother with chronic illness fighting the same guilt I am, please know you are not alone as I am not alone. When we are feeling heavy with feelings that only a mother with chronic illness could understand, reach out to others that understand. 

In the end, we simply have to remind ourselves that 

love is what matters. 

To take the moments we can and soak it up like a dry sponge. 

Let love fill the gaps of guilt.

Love is after-all, what the heart remembers the most.

Starting life over with your new normal.

They talk of people starting their lives over. They need a fresh start. Maybe something tragic has happened and they have to pick up the pieces around them and carry on.
But how exactly do they accomplish that? What does it take to look around you, realize some things are simply never going to change and to be okay with that and simply carry on?

I’ve been stuck in a place of wanting to move forward but not knowing how. I am fully aware that my life is not going to be what I planned it to be. I had my goals and I achieved many of them. But then my circumstances changed, my health shattered and since then I’ve been stuck surrounded by those pieces of glass too afraid that if I moved forward I would get hurt. Too afraid that the tiny pieces of glass would get stuck forever if I tried to escape them. What does that even mean? I was stagnant. Totally and completely frozen. Stuck in frustration over the wife that I couldn’t be, the mommy that I struggled to be and the constant longing to be the friend to someone I knew I could be, even if that meant crashing their house just to lay on their couch, but to be there nonetheless.

One day I realized my surroundings, the home I worked so hard to make a peaceful and healing haven, yes those very four walls were closing in on me. I was stuck behind the curtains. It was a wake up, do your best, struggle through the day, rinse and repeat cycle of surviving. Because of the chronic and endless illness I put all my energies into surviving, not living. And just surviving was getting draining, it was getting old.  So how do you start over when you are not sure where you are starting from? How do you start life over, with your new normal, finally accepting that as so? This is something that has been heavy on my mind. As my dark days turned into dark nights, simply surviving was becoming difficult. I had to find a way out of the shattered glass I was surrounded by.

I know I’m not alone. I know you’re out there reading this feeling exactly the same way. 
So what now? Where do we go from here?

Make a plan. Think about what you want in life. I mean really think about it.  You might not be able to do what you did before, so think about what you can do now. Stop living in the past of what you planned, wanted, or thought you should be doing. Start living in the now- taking in what you can do in this moment. Can you get out of your four walls and do even a little bit of what you’ve wanted to? Cause a little bit is better than none and that is something I am trying to come to terms with right now. I thought if I couldn’t engage in my volunteer work on a full time level then the little bit I could do was simply not enough. But the only person it wasn’t enough for was me. The only person in the way of me doing a little bit of what I loved, was me. There will always be laundry, chores, errands, bills, and unfortunately it appears there will always be this chronic illness in this present life. So how can I live a life I love within those circumstances? 

Instead of always comparing my healthy life and my healthy goals to what life is now, I needed to make new goals and plans within my present circumstances. Maybe I can’t be the play-date-every-hour-is-planned-out-with-activities-mom, the full-time volunteer, the shop till you drop girlfriend or the wife that never has to bail on plans for a date with her husband cause she is just too exhausted to function. I had to let those thoughts go once and for all.

Suddenly I realized instead of trying to find a way out of the shattered glass I needed to clean it up. Get out the broom and risk a few pieces getting stuck in my feet cause that is better than being forever stuck. But it wouldn’t be easy, it would be a slow steady process. But one step forward was better than no steps at all.

So with that being said, when you are too tired to even function how do you live a life that is not just surviving? Stop just surviving then. Just do it. Find a way out of the survival mode you’ve created for yourself. 
Yeah, there will still be plenty of days that surviving is all we can do. Days the pain is going to hurt so bad we will still look back to the past and long for what was before. That can’t be avoided and that is okay. Sometimes our body will trump our mind, it will demand we go back into survival mode to just get to the next day.

But on the days that life is lighter, enjoy it however possible. Live it, breathe it, take it all in. A cup of coffee, a quick trip to your favorite store, find a way to make friends that will accept you for you and won’t be wanting more than you can give. It might take time for this to happen. It might take a lot of strength on your part. To put yourself out there again, to figure out who you are again, to realize that your maybe not-so-new circumstances may not be going away (for now) so try to grow within them.

Stop hiding your sparkle behind the curtains. 

Let it shine. Let it out.