Imagine this...

 Imagine this... you are walking outside and see a woman in her car in a parking lot frantically tying her hair back while stripping off her sweatshirt and continually reaching to the floor for something.... she's sitting there in her bra in broad daylight with not a single care who's around while awkwardly pulling a shirt over her head while constantly turning around talking to the child that you can't see.  The reaching down is her frantically trying to get her shoes and socks off... she's crying, she's suffocating, she's overheating, she feels like her heart is going to pound out of her chest... she's doing all of this while trying to just breathe and calm the child in the backseat.... I'm sure you were laughing in the beginning of reading this... I'm pretty positive at one point in my life I probably would've shook my head and thought "nut job" or "WTF" if I had witnessed this.  Now I think I would walk over and offer help.

The woman is me... before naptime on a Monday... after what was supposed to be a quick and easy appointment... in the handicap parking lot in front of the Children's Hospital clinics building... this is what CTSD looks like... it looks like me talking to my sister on the phone later that evening and intermittently crying uncontrollably because I'm lost in the trauma of the morning and can't control it.  If you were in my head it's a million and one thoughts about what else could've gone wrong... what will the repercussions be with M... what will the repercussions be for me.... did it undo all of the progress I've made in therapy and with practicing mindfulness?  Will I go back to bursting into tears randomly 30 fucking times per day?  It's the "I should have.... I could have... this could have... this should have..." over and over and over.  

It's the shocking realization half way home on the Interstate that I should have done Madilyn's emergency injection for her adrenal insufficiency.. it's the tug of war between do I turn around and go back to the ER, do I stop and do her injection, do I just continue driving like a nut and hope when I get home it won't be too late for her stress dose of steroids?  It's berating myself for all of the chaos in an unexpected urgent situation that we were not prepared for.  It's what panic and anxiety look like for me because of all of the medical trauma we have been through.

It's me on the phone to our medical team as soon as I have Madilyn situated at home and have regained some composure.  It's me calling patient relations to ensure this doesn't happen to someone else.  It's me meeting virtually with Madilyn's Endocrine doctor to discuss what happened and what should've been done differently.  What will be done differently next time.... because there's always a next time.

It's going to run some simple errands on Tuesday while respite is with Madilyn and realizing as I'm going through the store that it was not my greatest idea... all the masks everywhere make me hyperventilate.. it's literally 2 trips to the bathroom while in the store so I can just focus on breathing in order to make it through the store.  It's literally wanting to slap the person who dares to say anything to me about not wearing a mask.  It's gratitude for the man in the store that started a conversation with me. I could focus on his smile and just breath for a minute.  It's gratitude that I could see an actual face in a sea of masks.

My wish for this world is kindness... you don't know what someone else is going through... you don't know what they live with... you know the old saying "you can't judge a book by it's cover"... it's so very true........ so you do you........and do it with some pink fucking shoes

F*cking Reality

 I'm a big believer in if you give your thoughts a voice they will lose their control over you....  and the reality of things is that I'm drowning in thoughts... they are suffocating me to the point that I'm in therapy and taking a Mindfulness class trying to learn how to slow my brain down and truly live in the moment.  My demons are making that exceptionally difficult right now.  It's not my first round with therapy.  I'm a huge advocate for seeing a counselor, therapist... whatever it takes.  For me this time it's working with a therapist who specializes in trauma... it's learning to "give myself some grace" when logically I don't even know what that looks like or means because I'm so critical of myself...

My therapist told me on Wednesday towards the end of our session that there are a million things when it comes to emotions and feelings but realistically it comes down to either you live in love or you live in fear.  They cannot coexist.  I have slowly over the past 5 years gone from living in love to the fear has taken over.  I have CTSD (Continuous Traumatic Stress Disorder) and Situational Anxiety (meaning all things related to Madilyn and her medical "issues").  She told me that there's a very fine, blurred line between avoidance and acceptance... I believe I actually live on the avoidance side of that line while verbally boasting acceptance...  "It is what it is" is one of my favorite things to say when it comes to Madilyn and her health.  When the truth is I'm not okay with being told "we don't know".. I'm honestly so fucking sick of hearing that phrase.. that and "we've never seen this before"... our last inpatient stay has pushed me right over the edge...

I've always known that Madilyn may not wake up tomorrow.. we've heard it soooooo many times but hearing it and living in the reality of it are two different things.  We've never had to make that life or death split second decision we've always been warned about.  Until now... it puts a whole different spin on our reality.  I use that fucking pulse ox machine to check her oxygen levels when I see her struggling... when she's sitting with her mouth open and her tongue hanging out, hunched because it's too much work to sit up straight and I can hear her breathing from across the room and it tells me 98% or sometimes 100%.... and I want to throw it across the room because something isn't right... her little body is working so hard for that and I can see it and I can hear it... I can't truly explain how it makes me feel.

I have so many emotions, demons, feelings, thoughts and guilt that are swimming around in my head so much that it's overwhelming and I often put earbuds in and turn music on just to drown them out.  I have so much guilt over all the times in the past 2 years that I have broken down after an episode with M that I have told my husband that I can't imagine doing this for a lifetime.... all the times I've told him at 2 am when she's screaming or we haven't slept that I hate our life and don't want to do it anymore.  I've voiced that fine line of devil's advocate when I say I understand how some parents just walk away... I could never do that but trust me... sometimes when I'm driving home from work I've thought about what would happen if I simply turned my phone off and kept driving with the music really loud... not indefinitely... not forever.. just for hours or maybe a day or two.... and then I come to my senses when I see my exit sign and come home..... 

When we were in that hospital room and she couldn't breathe... when she was visibly struggling... when they told us she was blue.... all that kept going through my head was "from your lips to God's ears... choose your words wisely" a friend's mom told me that over 15 years ago when I used the phrase "I love them to death".... she said that's a phrase that God could interpret as a wish..... I don't ever use those words anymore.. I haven't since that day.  But in that moment it made me question if God took my rants as wishes.... I don't even know if I believe in God and these are the things that go through my mind repeatedly...

We added to our list of "I've never seen that before" in multiple ways when they did Madilyn's surgery that day... it took over twice as long because when they went in laparoscopically to place the new feeding tube they found a thick web of scar tissue encasing all of her organs and they don't know where it came from or why.... then when they got through that they found all of her organs stuck together and they had to separate some of them without damaging or "tearing" them in order to place the tube, and then they told us that typical anatomy has markers so you know you are looking at the appendix, the stomach, the intestines etc and Madilyn's anatomy has none of those markers... if she didn't already have a G-tube placed they would of not had guides to tell them where they were at...... and then she almost died from her lung collapsing,....  the doctors don't know what to do with it or about it, they've never seen it before.... as of now it's just another thing for them to be aware of when she's having an issue because now they'll need to check to the scar tissue to see if it's growing and causing blockage to her organs... our Pulmonary doctor is talking to our Hematology doctor because she is questioning if this is why Madilyn's blood is the way it is....is this why lab work shows that her blood is struggling to circulate enough oxygen to her organs?  If it is wtf do they even do about it?  Nobody knows... our life is all one big fucking medical experiment... 

That experiment, our life, specifically her life and this past year has left me all sorts of struggling.. I did what I needed to do for my physical health and totally ignored the deep down mental health part of it.. now I'm stuck in the trenches of all of it...  I gained 20 pounds over the past year because I get caught in stretches of not mentally being able to physically make myself do something... even though I know that's what I need to do, I mentally know it's the best choice and yet I just can't.  I've never been where I am right now.  I've never spent this extended period of time where I cry every fucking day... and the most random thing will set it off.  Sometimes it comes out of nowhere.  I'm at the point that I get to work and I have massive anxiety going on... someone asks me a simple question when I first get there and I'm in tears and struggling to breathe.  I have to go hide for a minute, compose myself and then I just scurry around busying myself with everything but nothing reminding myself to breathe and that I can truly leave if  something happens with Madilyn... eventually it passes... but it's hell... I feel like I have no control.

In the past I've been on antidepressants... I refuse to go that route... I need to learn how to cope with all the feelings and emotions and where they are coming from.  I know the source, I know the reason and numbing won't fix it... so I have to feel it, all of it.... the good, bad and the ugly... and figure out how to live with it.  I have to figure out how to be in 20 seconds of complete silence, with nothing but my breath, and not end up in a puddle.  The Mindfulness instructor and my therapist both say "give yourself some grace".......... hahahaha...I am my own worst critic.. I truly don't even know what the fuck that means.  But I am attempting to learn.  That is the important part.  That and those pink fucking shoes...

Nine years.. truths and trauma

 Who ever would've thought we'd be celebrating her 9th birthday?  Not the million specialists we see...honestly, not even me.  We've been through so much in the past nine years it's crazy to even think about.  We've surpassed every hurdle the powers that be have thrown at us and come out smiling. Until recently..

We were told repeatedly before she was born that we will have to make some quick life/death decisions... it never happened... we were told when we first got custody at 11 months old "if she's still alive in 3 months call and schedule another appointment"... she has somehow always come through without us having to make any snap decisions... until September 19th... I will never forget when they gave her bedtime meds on the 18th, the day of her surgery, watching the pulse ox go down and down and down and sitting steadily around 85... alarming like crazy... I kept buzzing the nurse... she called respiratory therapy.. he sat with us for endless hours.  Doing treatments, stimulating her to breathe more, suctioning her because she couldn't cough.. listening to her lungs... he'd leave to care for another patient and come back.. for hours on end.  I held her hand, mindlessly talked and constantly questioned what was going on... in my heart I knew what was going on.  By about 5:30 am I was texting my husband.  She had thrown up blood and they were taking her for a chest x-ray.  We couldn't keep her oxygen levels in a safe range and she wouldn't keep an oxygen mask on.

By 9:30 am our NP from our Complex Care team showed up and usually it's a relatively quick visit but she stayed.. constantly checking Madilyn, talking to the respiratory therapist, going to find doctors and trying to keep me calm.  She had me checking how close my husband was to the hospital.  When I told her he was parking the car she backed me up against the wall and told me that in 30 seconds there was going to be a mass amount of people in the room.... reality set in.. Madilyn was dying... she couldn't breathe.  Her oxygen levels were down to 70 and nothing was working to bring them up.  Daddy and Goose arrived to swarms of people in blue jumpsuits, stretchers, portable lab and x-ray machines and a little girl desperately trying to breathe.... I'll never forget the moment that the Rapid Response Critical Care team member turned around and said "she's advanced directives... how far are you willing to go? You have 2 seconds..... she's blue"........ it was moments of autopilot... no intubation, no CPR,  no cardiac meds.. sedation with CPAP was the final decision.... and suddenly someone said PEP... that PEP treatment saved her life.... those repeated PEP treatments multiple times per day for the next 48 hours and high flow oxygen at 15 for hours upon hours... slowly weaning down for her to be able to maintain for a few hours on her own.  I didn't find out until later that those treatments can potentially explode their lungs... 

Honestly the 48 hours in the PICU is mostly a blur for me.  It was traumatic... our nurses were amazing and our night nurse, Art, was perfect for us... especially when Scott was gone home and her levels dropped and respiratory therapy was back for what felt like the millionth time and machines were beeping like crazy and I completely lost it.... like nervous breakdown kind of lost it... I was a sobbing puddle on the floor telling him that I didn't know if I could do this... he promised me I wouldn't do it alone... he would make sure of that...they upped her sleep meds so she would stop fighting everything and slowly she was able to maintain for longer and longer... Our day nurse Amy was equally great.. fighting with the doctors the first time they wanted to transfer her back to the other floor... she stood in the hallway very professional yet adamant when she told them "she's not ready, you'll lose her in between floors when she crashes".... not 15 minutes later it happened again.... I'm so thankful she fought for us....

I never want to relive that... but our reality says I will have to... I don't know how, so I've chosen to see a trauma therapist.  It was highly recommended by our medical team.  We are also going to see our Pulmonary doctor and find out how much more damage was done to her left lung.  They think it collapsed because she was under anesthesia way longer than she ever had been.. they think maybe she aspirated... I've always talked about how thick Madilyn's secretions/vomit are but she completely dumbfounded the respiratory therapy staff and the PICU staff... they were trying to suction her and all it would do it clog the suction machine.  They had to get it started and use the probe to make her vomit instead... it was terrifying...

It makes me question how tired her little body is getting... it makes my heart hurt....

It's got me going on autopilot 99% of the time because otherwise the flashbacks of things I blocked out keep coming back and it makes it difficult to function.  It has me over analyzing everything she does.

I am returning to work today... I don't know if I'm ready... one foot in front of the other and breathe is all I keep telling myself.....

I'll just keep praying to a God I'm not sure I believe in and keep wearing the pink fucking shoes...

Sass and sleep

 Go figure...it's bright and early on Saturday morning, the Sasshole is sleeping and I'm wide awake and have been for hours already.  We woke to her feeding pump beeping away at 5:3.0 am and once it was turned off, meds given, diaper changed and Doc McStuffin playing on the TV she went right back to sleep and momma's wide awake now.  I tried to go back to sleep but the smell of fresh brewed coffee and a million thoughts rolling around in my brain kept the sleep at bay.  It's weird to have a quiet morning... mornings where we/I are awake before Madilyn.  Thankfully they are becoming more normal than not.

We finally consented in June to have bone marrow testing done after much soul searching and  hours upon hours of conversations.  So many pros and cons... so many questions..... so much hope for answers and fear of none.  When the results came in after weeks of waiting our Hematology Doctor called me and said "I have great news! Madilyn's bone marrow testing came back normal! But wait, I also have really bad news.  Madilyn's bone marrow testing came back normal!"  Great news considering she fully expected to find Multiple Myeloma cancer and really bad news because we have blood issues and zero source.  Now we are left to possibly try treatments for symptoms and it's nothing but a guessing game....as always.

We've had massive issues that started last October after Madilyn was sick and they've just escalated since.  They landed us inpatient in early March because Madilyn was so escalated that I couldn't bring her down.  We've added Palliative care, Neurology and Pain Managment to our already extensive list of care providers just trying to make life more livable.  We've tried Reiki and have added to our extensive list of medications trying to bring a little calm to our crazy life.  We've done blood test after blood test and scan after scan trying to figure out what was going on.  We've had our physical therapist note increased shakiness and muscle weakness, OT and Speech have both noted her increasing lack of ability to visually track and we've seen a definite decrease in her ability to focus on anything.  The child that could sit for 30 minutes or more watching silly YouTube videos couldn't even focus long enough to get the foot rest up on the chair much less accomplish any task.  She was on the never ending path of destruction, sleeplessness and so angry that I didn't even know what to do anymore.  My mental health was hanging on by a thread.  She's been caught in vicious migraine cycles, they diagnosed seizure like activity, Polycythemia, Disruptive Behavior Disorder, Anxiety, Insomnia and Anxiety to her already mile long list of diagnosis since March.  Oh and don't forget the vomiting... it's ridiculous to say the least.  

Through all of this I have said over and over and over... You are missing something.. I've said it to all of our new docs and old.  I've said it to our Care Team a million times over.. I've cried, yelled and very calmly said.. you are missing something.  Some of the roads it has taken us down have left me absolutely terrified that she was going to die... when my sister came in March she saw a very quickly declining child.  My heart was so broken and my nerves completely fried.  I was honestly afraid to be alone with Madilyn because she has to strength of a full grown man in her little tiny body and doesn't hesitate to let me know how angry she is.  My friends have all been on-call to come running to the rescue.  

Several weeks ago I was at my breaking point thinking about my husband getting ready to go back to work (he's a teacher) and I had this nagging gut feeling that I have given voice to multiple times.  I reached out directly to our Endocrine doctor and asked the question... again..... could it be Madilyn's steroids causing the problem?  I've experienced the rage that comes with high dose steroids multiple times when dealing with my Degenerative Disc Disease and what we were seeing from her always brought roid rage to mind.  I've questioned it on numerous occasions and there has always been a million other things that had to be dealt with.  A million other reasons that "could be the source of her issues".  With a child like Madilyn providers more often than not have overlooked the simplest things due to her complexity.  It's not the first time we've seen it and I'm sure it won't be the last.  In the end we discovered that Madilyn's very necessary daily steroids were almost double the amount they should/could be.   

As soon as our Endocrine doctor told me that I immediately started to wean her doses.  It can/has to be a very slow process.  Her adrenal glands do not produce much needed cortisol and the steroids replace that and keep her alive.  Adrenal crisis can be fatal.  Sometimes symptoms can mimic the symptoms that led to needing the high doses to start with.  It's a tricky, complicated line we are walking and once again I am left to trusting my gut.  I'm happy to say we saw immediate results.  She's sleeping way better than momma is... she's no longer going in a million angry circles around the house slamming doors, drawers and anything else she can slam.  Her focus is coming back and our PT noted zero.... yes, ZERO shakiness or muscle weakness this past week and the absolute best for me was the day my friend was over for an afternoon in the pool and she actually heard Madilyn giggling.  We are seeing increasing glimpses of the happy, giggly little girl that we missed so incredibly much.  Don't get me wrong, she's still an opinionated Sasshole and definitely wants her way BUT it's in a "typical child" sass kind of way instead of an angry, abusive old person kind of way.....I'm sure that analogy will offend someone but oh well, it is what it is...  We are just over half way to our goal and we are very excited to see what life will be like once we get there! 

Even with all of the continuing medical stuff with the Sasshole we have had the best summer ever.  Thanks to some friends giving us a swimming pool and M receiving a HUGE playset from Make-a-Wish Wisconsin our back yard is turning into the oasis I wished for when we bought this house.  All that's missing is the hot tub.  We've had lots of pool days and lots of time with friends.  It's all been much needed therapy for my soul.  We may be playing in a blow up kiddie pool in the basement in January though because Madilyn thinks the pool should be part of every day life and it brings much needed calm to crazy days.  My original plan was to put a hot tub in the basement but when you look at what the reality is of doing that it's definitely not in our budget... I have however already figured out where one will go in the backyard and I'm saving my pennies to pay for it... someday.....

In the middle of everything else we added a new GI doctor.... I was so sad to have to switch doctor's in the beginning but have quickly learned that sometimes fresh eyes are what we needed.  We are super happy with M's weight and feed tolerance.... the GI doctor is happy with those too BUT she feels we shouldn't have to live with the volume of vomiting that has become our norm over the years.  Uncontrolled, behavioral, stress induced... all of the above...  We are going inpatient in mid-September to get a new feeding tube.  She currently had a combined G/J tube.  Part of it accesses her stomach and then there's a really long tube that goes through her stomach, into her intestines and down to her jejunum where she is fed.  Our GI doc feels we'd see great improvement without that long tube.  She feels that the majority of our vomiting is because that tube keep her pylorus (the opening from the stomach into her intestines) open and mostly blocked.  The tube going through her stomach causes constant irritation so her body is constantly producing vomit and trying to reject the tube.  So we are going in for a separate J-tube.  She'll have 2 buttons on her stomach instead of one and after the initial hell of the surgery hopefully we'll see some much needed relief.  I'd be a liar if I didn't say how hopeful and scared I am at the same time.  Hopeful for relief and terrified of not getting any.   Hopeful that the reward is bigger than the risk... only time will tell.  We are also attempting to schedule the EEG to check for seizures that they wanted to us to attempt at home for while we are inpatient instead.  I've gotten pretty good at the two procedures at once thing over the years so hopefully it works out and seizures are able to be ruled out. 

In the meantime we are just living life and going shopping for the Sasshole... because every girl needs a million pairs of pink fucking shoes...🩰  

Our new reality

Everywhere you look or listen right now is Covid 19.. corona virus.. social distancing.. wash your hands wash your hands wash your hands... stay home if you're sick...just stay home...

It's really nothing new for us.. it's been taken to drastic measures but it's how we live our life.  Everyone at our doctor's offices and Children's hospital love Madilyn's "bubble" when we go there.  For several years now we have used her weather cover for her stroller as her germ bubble when we are in places like that to protect her.  It's now her comfort zone... it's our reality.

Since New Year's we've been inpatient twice and to more doctor's and lab appointments than I can count at the moment.  We've had scans and more lab tests than ever searching for answers...  Hematology recently did 2 genetic tests searching for an answer to her blood problems.  The JAK2 Gene Mutation and the JAK2 Exon 12 Gene Mutation.... the nurse called me yesterday and said that both are negative... the next step they want to do is bone marrow testing.  We don't want to put Madilyn through bone marrow testing... at this point it's irrelevant because with all of the virus stuff going on our hospital is basically shut down other than emergencies.  None of our clinics are seeing patients like Madilyn because it's not an emergency.  Even if it was an emergency Madilyn would probably not be seen because we have Advanced Directives in place already.  They are doing everything they can to help us manage symptoms remotely and are in constant contact with us so that's a plus.

We've made some recent med changes and it's helping with sleep for now and we're working our way through a list of options to deal with her headaches until we can finally see Pain Management in June (hopefully).  We were referred to Neurology and with the current situation I'm not sure when that will happen.  We've also started using CBD ointment to help with the pain in her feet, back and legs and it's helping.   The good news is that with these things in place and with all the help home with us the abuse is greatly reduced and I always have someone here for immediate intervention so it's very livable right now.  The Sasshole is super excited to have everyone home too... constant entertainment for her... and relief for me.  Now if it would just be warm enough to get out in the stroller or on the deck that would be amazing!

Regardless of other people's opinions of the virus and steps being taken... it's how we would be living either way so I just scroll right on by... we need to remember to be kind to one another.. reach out to our loved ones and practice social distancing and great personal hygiene.. I went to the grocery store yesterday and as I was spraying my cart with my hand sanitizer I noticed a woman that was trying to figure out what to do because they were out of the wipes so I kept my distance from her but sprayed her cart too.. it's the little things....  I was not so kind to the woman in the produce department shopping that was visibly sick and not covering her mouth to cough though.. or the guy that was with her that wasn't any nicer.(I won't even get into the conversation they were very loudly having) complete disregard for anyone else..I told them how ignorant I thought they were (from a safe distance) and that she could at least use some common sense and cough into her elbow and cover her fucking mouth... she didn't care.. she thought it was funny... people like her are why shit like this goes on...  use some common sense people... please....

Life for most people is drastically changing right now and we have very little control over it... my only suggestion is to learn to live peacefully... pick one project per day and tackle it... move your body, there's tons of free videos out there and I shared some on my Facebook page).. drink your water...eat healthy (grocery stores are NOT closing)... don't hoard toilet paper or food.... and breathe... play a game with your family.. read a book... life will be back to chaos quicker than shit so just live in the moment.

I had an appointment scheduled for almost 2 months prior to all the virus stuff and contemplated not keeping it but I'm happy I did... I was one of his last appointments before the state shut them down for social distancing... I'm so thankful I kept it... it's Madilyn's very first pair of pink fucking shoes......

The Ugly Truth

We have been through so many tough times with Madilyn.... so many things we thought we'd never make it through but we have.  I've shared so much and at the same time so very little of what our life is really like at times.  Since Madilyn got sick in early October we've been on a super fast downhill slide.  It's going so fast that we often feel like we're going crazy and question our own perspective on what's really happening.
As the sleep issues escalated so do the behaviors.  It made us all feel incredibly insane.... and broken.  Dealing with all of the new health issues combined with all of the behavior issues just became too much for me.  First I need to state that we have some super amazing and supportive people in our lives.  We have a tribe of some of the best people we've ever had in our lives.... but there was an aspect of our lives that I did not let them in on.  I would make comments sometimes and try to make light of the situation at home... but I was never truly honest with them.  There's a fear that comes with that kind of honesty... a fear that people with think badly of you, or judge you... the biggest fear of all is that it will be too much for them and they will walk away. 
This past Friday after 2 months of never sleeping more than 3 or 4 hours max at a time... months of broken sleep and heartbreaking medical issues.. I snapped.. and so did Madilyn.  There's an abuse problem.  It made me feel just as ashamed and broken as the abuse in my first marriage did.  I desperately tried to hide it.  I wear long sleeves to cover bruises and scratches and I don't really talk about it.  There are very few people who ever get to actually witness it. 
Madilyn was so escalated by Friday morning... days and days of not sleeping at all... her aggression was through the roof.  Her screams make you wish you were deaf and her unbelievable strength when she's that escalated makes me feel like I'm being beaten by a full grown man instead of the tiny little being that she is.  There's no stopping her, there's no ability to reason with her.  All she knows is she's hurting and I'm her person and I'm not fixing it.
After about 5 hours of repeated beating and screaming I called our care team sobbing and begged for help.  She could hear Madilyn in the background and said we needed to come to the ER to be admitted.  She made me promise I would call someone for help as soon as I hung up.... I've never done that... my people were not here.. I had no other choice.
I called my friend to get my work shifts covered and to tell her what was going on.. Madilyn was screaming and I fell apart... I could not stop sobbing.. she immediately sent another friend over and she got my shifts covered at work... My friend came in and simply ran interference between Madilyn and me.  She let me cry.. she let me walk away and did everything she could to distract her.  Madilyn came at me and was kicking the shit out of me and hitting me and she told me that if I needed to go in the garage and smoke a cigarette she was fine with it.... I think I apologized a million times for how awkward she must feel in the middle of this situation.... she simply reassured me it was fine.  Another friend showed up and just held me while I cried and together we put a plan in place for when these things happen.  Like it or not, this is our life.
All 3 of my friends have repeatedly checked on me and reassured me how much they love me and that they are right there for anything we need. 
Friday was the first time I've ever put Madilyn in the playpen begging her to stop because I was afraid I would hurt her.  I walked away with her blood curling screaming and took a shower... and sobbed my heart out and prayed like crazy to a God I'm not sure I believe in.... right after that is when I called for help.
People read in the media about a special needs parent that snapped and hurt their child and they judge them.  They find out about a parent that walked away and they judge them and say nasty shit about them.... on Friday... I completely understood both.  I reached out.. not everyone has that option.  The life we live is very isolating.  People walk out of our life on a regular basis.. or tell us they'll be there and they're not.  We hear all the time... just ask, we'll help.... not understanding how hard it is for us to ask.
My husband has heard more times in the past two months that I can't do this anymore... he has heard a million times while I'm sobbing that I feel so broken it hurts... what a failure I feel like because I wasn't able to help her... nothing can take away that feeling.. all the reassurance in the world doesn't take away the pain...
We spent 3 nights in the hospital... by Saturday at noon time after only sleeping 2 of the last 24 plus hours Madilyn stopped.. it was like someone flipped a switch and she became pretty non responsive and just had a glassed over look and was vomiting.. just opening her mouth and letting it pour out... she stayed that way for about 30 hours.. it scared the hell out of me.  We ended up determining that we thought Madilyn was caught in a migraine cycle.  One that finally shut her right down.
We've always questioned if she lived with daily pain.  Our care team always said they didn't think so.  With all of the new blood issues coming to light they now say that she definitely does.  We've been referred to the Pain Management team at Children's to determine the base level of daily pain she lives with and to determine if it is migraines she is dealing with. 
We had extensive talks about bone marrow testing vs pet scans..... we had an honest and open conversation about what Hematology is looking for... they think she has cancer that is not yet showing in her blood.... we had conversations about the Advance Directives that were put into place prior to her lung procedure last month... we've been having incredible hard conversations that no parent should ever have to have.
We also had a very honest conversation that our team does not think Madilyn's health situation will improve... it will continue to decline... BUT we are taking steps to make it more livable and to bring her more comfort.  We are hopeful to have more happy times and to hear more giggles than screaming and crying.
We are grateful that the new med has brought some sleep even if it's only for a short time.  We are grateful for the happy giggles that started our morning today.  We are going to remind ourselves to live in each moment.... find the positive in every situation... and remind ourselves to breathe...
I'm no longer looking at Friday as the worst moment of my life.... I'm looking at the positive that came from it.... I'm thankful and so beyond grateful for our tribe... I'm thankful our "secrets" are out... and I'm hopeful that being honest about it can maybe help one other person that is living a life that involves any type of abuse....
We have a big meeting with Madilyn's team on Thursday to discuss the next steps on our road.... until then I'll focus on finding some new pink fucking shoes...

Rollercoaster Ride

Dad post time here.... (I hacked mom's account) I don't usually say to much when it comes to our personal life and life with little miss, but I think I just need to vent.

We get all this news on what's happening with Madilyn and we try to wrap our heads around it the best we can, but that isn't always easy. At times, it isn't always possible. I try desperately to stay positive and not to dwell too much on the dreaded "what ifs", but every once in a while it sneaks in and takes hold. Now is one of those times.

We knew full well going into this that we were living on borrowed time with Madilyn and one day she won't be with us. We knew this... doesn't help. The thought of not having her around scares the hell out of me. We've watched her grow when we were told she wouldn't. We watched her learn when we were told she couldn't. She proved them all wrong and beat the odds. I need her to defy those odds again. One. More. Time.

I see the toll all of this takes on Kathy. The sleepless nights, the balls to the walls days. That woman is a saint. She is by far the strongest woman I know. I do know, however, that strong doesn't last forever. You can go full throttle or you can go for longevity... not both. At least not for long. "Slow and steady wins the race" doesn't seem reachable. She's tired. She hurts. She cries. Yet she gets up every single day and does it again and she perseveres. I worry about the breaking point... for both of them. When is it all too much? They both amaze me every single day. I'm not sure if this is someone's way of telling her she needed work on her patience or not, but she has honed that skill to a fine edge. Her mommy gut has been spot on even when the specialist thought she was cracked. Her mission has been very clear. She pressed the issues when the doctors wouldn't listen to the point that we thought they would call CPS or the authorities on her. Thankfully they listened to her before it came to that.

I'm not really sure where I was going with this, so it kinda rambled. Sorry about that... I do know that I love that little girl more than I every thought humanly possible. We always hear, "Oh... she is so lucky to have you both in her life", when in reality,  we are the lucky ones. We have learned more from her than she will ever know. She has taught us to appreciate the things we all too often take for granted. When it's good, it's a good like no other. The giggles, squeals, and squeezes. Oh, the squeezes! Man, I love the squeezes.  On the flip side of that, when it goes downhill, it goes quickly. It's all one big rollercoaster ride. So we hang on through the twists and turns and highs and lows and go where it takes us.

If you've read this far, thank you. Thank you for listening. I don't own any pink fucking shoes, but I will. That's a promise. I'm thinking that's my next tattoo... If you have pink shoes, wear them once in a while and smile... because you know it's all about them.

Our broken hearts

I'm not even sure how to really say where we are on our road right now..  our hearts are hurting, we are trying desperately to process everything.
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors.  The whole experience was terrifying.  We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it.  A, she couldn't breathe and covered in rash and hives, kind of reaction to it.  When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down.  Her heart rate at this point was around 200, which even for her is crazy high.....  in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing.  They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning.  Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it. 
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test.  Since there are no tumors emitting the high hormone levels there's one of two things driving it...  it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option.  The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through.  We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments. 
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process.  We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails.  We may get several more years, the truth is we don't know.  What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....

Choices

It's bright and early Monday morning and I'm laying here thinking and drinking coffee.
This is a lifestyle, not a diet or a fad.
It's not a moment in time and it's not about being perfect all of the time.
It's about being able to do the things I want to do without feeling like shit all of the time.
It's about my knees and my back not hurting and having the energy to keep up with the Sasshole and all that life with her entails.
It's about not wanting to explode over the top of my jeans and about feeling good in a swimsuit.
It's about taking the time to put my mental and physical health FIRST!
It's about learning to make better choices.
It's about learning what fuels my body and what doesn't.
It's about wading through your own bullshit and excuses to get to where you want to be.

It's about choosing to deal with the feeling no matter how hard.

It's about choosing what's going to fuel my body rather than what's going to taste good in the moment.

It's about choosing to move my body daily.

It's about choosing to eat the fucking salad.

It's about choosing to drink the fucking water.

Anyone who knows me knows that my first choice to avoid feelings was alcohol.  I kept all the things locked inside and I drank instead.  I was the life of the party.  I was also so emotionally broken I didn't know what else to do.  Dealing with the actual feelings was "too hard" so I drank instead.  When the time came around that I couldn't use the alcohol to make me feel better I turned to food.

I would literally eat until I was so stuffed I thought I would vomit if I had to burp.  I couldn't have sex with my husband because I was so stuffed I would puke.  I loved my husband and children beyond measure but hated my life so much I didn't even know what to do with it... so I ate.

I think I'm so obsessed with My 600 lb Life because that's the path I was on.  I was watching it the other night and Dr. Now was talking to a patient that blamed everything on food addiction, they claimed to have no control (I've been there) and he said "Food addiction is just like any other addiction, it's a choice.. it may get out of control but ultimately it's a choice and now you can choose to accept responsibility and walk the hard path of getting healthy or you can choose to die".

I'm a firm believer in that every single thing you do from the moment you wake up in the morning is a choice.  You can blame whatever you want, have any excuse you want, but it's a choice.  

You can choose to spend your life being a victim and crying oh poor me or you can step up and do the work and feel the super hard feelings and be a survivor... a warrior.  Life is not easy for anyone.. we all have baggage..

I have lived through rape, domestic violence, verbal abuse, depression, anxiety, physically debilitating illness.... I have also survived, sought counseling and learned to deal with the really hard things rather than eating or drinking them.  

I am not perfect by any measure.  I have learned to love my flaws... I look in the mirror every day and say something positive about myself rather than beating myself up and letting my inner mean girl out.  

We all go through different seasons in life.. sometimes it's great, other times it's good and sometimes it just sucks... I'm in a season of suck right now.. I started going back down the wrong path with some food choices and lack of consistency with working out... I feel it.  I feel like crap, I'm more tired than normal, my back hurts.... and so does my heart.  I'm scared of the path we are going down with Madilyn... but neglecting myself won't help that in any way..

I woke up this morning and this blog started as a post to my Fitfam girls to get them motivated and as it kept growing I realized it was just something that I needed to share for everyone to see... some things just need to be given life.  

I want you to know that you are worth it.

The impossible can be done.

You are beautiful.

Your life can be amazing.

You can do hard things.

You can overcome.

You can be happy.

You are worth loving.

You are a survivor.

You are a warrior.

Most importantly.... You are not alone.

Now pick yourself up and go buy some pink fucking shoes and move your ass!

those shoes.

We are ready for Tuesday and wherever the road may take us!!

The Road

The most memorable thing a doctor ever said to me when my degenerative disc disease was at it's worst was "emotional pain can manifest itself in physical ways".  This has played over and over in my head a million times over the past 4 days as I struggle to get up. 

Madilyn's vomiting got to the point on Monday that I couldn't take it anymore and I messaged our care team to request a placement check on her feeding tube.  That message escalated super quick into phone calls from them and 3 of our 17 specialists being involved... and off to the ER we went.  Can you imagine what it's like walking into a Children's Hospital emergency room with 40+ patients in the waiting room and multiple in line to check in and when they ask for her name and hear it you are immediately jumped in front of every single person there??  We heard "it's her.. get her stats and get her into a room..now"...  perks..yes... reality.. she's too fragile to have her exposed to all of that and she escalates so quickly it can be dangerous.  Their main concern was her shunt, it was never ours.  They did a quick brain MRI and shunt series x-rays and it looked fine.  The neuro doc came in and talked to us and it went from "we don't see an issue with the shunt"  to "I'm going to check something" to a nurse telling us they were admitting us under the hospitalist so all bases could be covered....  5 hours into this ER visit, Scott had just left and we were waiting for our escort to our room and it happened.... Madilyn coughed and started vomiting blood all over the place... everything stops at that moment.  I buzzed the nurse, she came in and went running out to get the doctor... they tested her vomit and it was definitely blood.  The transport upstairs was canceled and they had to figure out a new plan asap.  Come to find out we had weaned off of her omeprazole for reflux last summer and it was back with a vengeance.   Meds were started and we were admitted for IV fluids because she was dehydrated from all of the vomiting and her heartrate and blood pressure were through the roof. 

It was 1:30 am before we were brought to our room on W11... they had given her sleep meds at midnight in the ER but there's no sleeping when she's constantly being poked and checked.  Once we were in our room it starts all over again with the team on the floor.  Our inpatient stay did not start on a good note when the first thing the floor doc said was "it's probably just a mystery virus"... set this stressed out momma right off.  I told him that their years of "mystery viruses" were never that.. they were a formula allergy and nobody would listen to me and then it was Secondary Adrenal Insufficiency ... both of which almost killed her and nobody listened until I screamed and shouted and went toe to toe with doctors.  I told him that there is nothing wrong with her shunt and she does NOT have any fucking virus and that something has been escalating since early October and they needed to figure it out and that I didn't think that would happen inpatient.

We slept for only 2 hours that first night and then they came and woke her up again.... by the time the hospitalist team came for rounds and said it's probably just a virus I couldn't keep quiet... 6 doctors and 2 nurses in the room plus our Special Needs team NP and I piped up with "I call bullshit"...literally... talk about stunned heads turning... I told them exactly how I felt and why I felt that way and that I didn't think they'd solve anything there and that we have an upcoming appointment with Hematology on Tuesday because of some labs that were off (and have been trending more and more off for 3 years).  I've questioned some of those labs multiple times and always get told "It's not far out of the normal range" or "It's just Madilyn being Madilyn".... I'm so frustrated at this point that by 9 pm on night two I told the nurse to get the stupid GI doc and get us discharged because we were at the point that we'd be up for 40+ hours and her behaviors were escalating quickly which would just land us in more trouble.  By the time the doc came I had Madilyn sleeping in her stroller, which is a HUGE safety no-no there.  He couldn't and wouldn't discharge us because she was having some issues urinating and they couldn't figure out what was going on so in true sleep deprived mommy fashion I threatened to hurt anyone who touched or disturbed her or anyone who tried to make me put her in the bed.  Definitely not my best moment but he complied.  They only time they could do anything was if I hit the call button.  I did but only once at 1:10 am to tell them they had 10 minutes to check her vitals and get her another round of sleep meds (she was already connected to a continual pulse ox monitor so if anything bad happened we would know)... we were not bothered until 7:30 am when the Hospitalist woke me up.

I apologized immediately for my tirade the evening before and he immediately told me that he understood.  He said they saw how quickly she went from miserable to stable to going in the wrong direction because as soon as she was stable her anxiety and stress levels escalate quickly.  He said they had a lot of things to check on but knew they needed to get us out the door as quickly as possible. 

A few hours later when the docs were in the room the on-call Endocrine doc piped up that she had questions for me... after talking for a few minutes she said she had serious concerns about Madilyn's parathyroid and thyroid function.  Her body is consistently making too much calcium... and that is caused by the parathyroid malfunctioning.. she ordered tons of labs.  She also clearly stated that Madilyn's would be a genetic cause because she does NOT have the cancerous tumor that parathyroid problems typically start with.  Phew.... someone finally said it.... for over a month now we've had in the back of our brains that problem may be cancer of some type...

When you are referred to Hematology the way we were in November and see and appointment show up with the Oncology lab it makes your heart stop.  A typical child has a 1 in 4 chance of a cancer diagnosis... a child with a genetic abnormality has 4 times that risk and Madilyn has multiple genetic abnormalities.... for us it's never really been a case of "if" that most parents don't even think about.. it's always been a "when"....  for the moment we're breathing a little easier.  We'll find out more at our appointment on Tuesday and after all of her labs are done.

The road we are potentially on, if labs confirm it's her parathyroid, is not going to be easy at all... we already struggle with weight (and she's losing again), it causes issues with bone health, muscle weakness, vomiting, nausea, fatigue, kidney problems.... ugh ugh ugh... and there isn't much in the line of treatment and all of these things are escalated because of her adrenal insufficiency... it's going to be a rough road.. but it's a road and not another I don't know...

Now I have to stop the stress path I was on and lose the 10 pounds I've gained and take care of myself again.  I have to be at  my best in order to be what she needs.  I spent the majority of our 3 days at the hospital crying and yelling at someone... the yelling was necessary and the tears were pure frustration because nobody was listening... I'm learning to nap when she does.. the dishes and laundry can wait.. our sleep is very very erratic and has been for months.  I got my work shifts covered for a few days and am putting her and myself first.

I put this out there because I am physically hurting and I need to give my emotional pain life so my physical pain can go the fuck away.....  I don't really ask for prayers but we could really use some so maybe this path won't be quite as hard as it has the potential to be....

oh, and my very own pink fucking shoes should be delivered tomorrow...