Nobody told me....

Eight years into this life with my sweet Peanugga.. aka.. the Sasshole... I think if I had a penny for every time I think "nobody ever told me" money wouldn't ever be an issue in our life.

Nobody told me that the sweet baby I called "Grandma's gift from God" before she was ever born would make me question my faith and if there really is a God more than anything in my life ever has.

Nobody told me that there is no such thing as stable.. because every single time you think you are in a good place something always happens.

Nobody told me I'd have PTSD and stress anxiety related to all things Madilyn and medical.

Nobody told me I'd be filling out Advance Directives (DNR) "just in case" my child codes during anesthesia or something happens with her Adrenal Insufficiency.  Her quality of life, not quantity, has always been top priority.

Nobody told me how exhausted we would be.

Nobody told me just how much we'd actually have to give up.

Nobody told me how hard we would have to fight for absolutely everything.

Nobody told me how many aspects of our life we would come to hate.

Nobody told me that even on the worst of days when I go to bed thinking and sometimes even saying "I can't do this anymore"... that I would get up and do it all over again without even batting an eye.

Nobody told me that it was humanly possible to actually have such a love/hate relationship with your life.

Nobody told me that the phrase "we just don't know" would become the norm yet so unbelievably unacceptable yet accepted at the same time.

Nobody told me that the what if's would so acceptably just become the when's.

Nobody told me that there is no way to prepare yourself for the child that your fear is greater that they will outlive you than if they don't.

Nobody told me that when I really have to go toe to toe with doctor's it's because of my gut instinct because with a one of a kind child like Madilyn there is no precedence to base things on.

Nobody told me that someday I would completely understand how some parents walk away.  It is still not something I would ever choose to do, but, I completely understand it.

Nobody told me how much I would learn from her.

Nobody told me how much I would love her.

Nobody told me that no matter how frustrated I get... I still don't know where she ends and I begin...

Nobody told me that who I am would be completely intertwined with who she is.

Nobody told me how much the things I crave the most in life... sleep and silence... would also be my biggest fears.

Nobody told me just how hard I'd be willing to fight for what I believe is best for her.

Nobody told me all the people that would walk out of our life.

Nobody told me how much we would hurt or just how huge our capacity to love is.

Nobody told me that there would be days that I hate those pink fucking shoes....

Nobody told me so many things... this list could go on and on and on...

The one thing I will tell you is that no matter how hard it is, how much we hurt, how frustrated we get, how alone we feel or how much we love/hate our life in any given moment is that we would do it all over again in a moment with her.  We learn to live in the moment and try not to get lost in the dark ones.  We prepare for the what if's and the when's hoping that they are not right around the corner... and we continue to focus on those little pink shoes...

Real talk

It's nap time again and I'm taking full advantage of the amount of silence.. I've done my daily gratitude practice, workout, food journal and podcast.. now I'm enjoying my therapy light while the house is quiet.  All of these things are the pieces that keep me centered when I'm really feeling like I'm about to lose my shit.

I remember my dad telling me when I was around 19 (ish) "you are the most negative person I've ever met.. is anything ever right in your life?"  That stung but it was oh so true... it set me on a path that I didn't even realize I was on for quite a while.. but I was still on it.  A path to be a more positive person.  To live a happier life and to leave the negativity behind.  Some days with our crazy chaotic life it's super hard not to get trapped in the negative aspects.

I practice gratitude daily.. I also ALWAYS go to bed thinking about something positive that happened during the day or something I am looking forward to the next day.  It affects my sleep if I don't.. if you don't leave the worries of the day behind they'll haunt your dreams.  When I was early on in the practice of gratitude I remember hearing that it's impossible to be angry, mad, sad etc when feeling gratitude and I thought "who's the f'n idiot that came up with that?"  BUT... it's true.. yes, I have more than my fair share of moments of those other feelings but one simple little thought adjustment and it's all the gratitude...  for example this morning when the Sasshole was throwing the little Christmas tree all over the place.. I was like wtf... then I realized I'm so thankful it's that stupid tree and not my lamps.  That damn tree can stay in my living room all year round and we'll make decorations appropriate for each coming holiday or season if it means she'll leave my lamps alone.. win..win...

I'm thankful for the GIANT ass playpen purchased off of Amazon so I can get my workouts done and occasionally pee without a little person dictating what I am supposed to be doing in that moment.  I am thankful for my therapy light and vitamin D3 supplements when there is no sunshine.  I am thankful for my husband, daughter, Favre and Jenny for all the help with the Sasshole because without them I would be even crazier than I already am... I am thankful for the relationship I have with my adult children.. they are amazing people and I'm so blessed to be their momma... I am thankful for date nights because they are vital to keeping our marriage healthy and alive and I'm thankful that I have a husband that I can pour my heart out to even when it makes me feel like a monster and he still loves me and doesn't judge... I'm thankful that he randomly scrubs the toilet or does the dishes and I don't have to ask.  I'm thankful for a hot cup of coffee every single morning and for going to sleep with my head on my husband's shoulder listening to his heartbeat every single night...

Do you see what I'm getting at?  There are a million things in this world that every single one of us has going on that is negative and exhausting but dwelling on them doesn't change a single thing other than letting it entirely consume us.  Start small... I always tell people "no matter how bad things are there's always something good in every single day.. pick one little thing and focus on it.. hang on for dear life if necessary"...

From the time the Sasshole first came into this world I couldn't wait to buy her little pink shoes.. she was about 18 months old before she finally could wear a size 1 because she was soooooo small.. I still have those little pink shoes packed away.. no matter what goes on in our life it always comes down to the little pink shoes so when my hubby and I were shopping the other day for the damn tree and shatterproof ornaments for the Sasshole it made my day when he found the perfect ornament that will never be packed away... it was always be in sight.. a constant reminder that no matter how things are going at the end of the day it's all about the pink fucking shoes...

Me

It's nap-time right now and I just realized that when I heard and saw her wiggling on the video monitor I physically held my breath hoping she wouldn't wake up yet...hahaha!  I'm sure every mom has done that at some point in time.  When my typical kiddos were little I NEVER kept anything quiet while they slept.  I'd clean, vacuum, crank the stereo... when Madilyn naps everything is on shutdown...but not for the reasons you may suspect.  She can sleep through noise and normal stuff going on but I crave silence.  When she's awake it's nonstop noise.. chattering, giggling, yelling... and I just need silence sometimes.  I used to use nap time to get all the stuff done and I'd never accomplish everything I wanted to and realized that I was driving myself nuts, plus I never got any downtime.

Now, nap-time is my time.  Monday through Friday when the Sasshole goes down it's my time to do whatever I am feeling that day.  Sometimes I clean, sometimes I read or listen to motivational podcasts, sometimes I do responsible things and other times I take a fucking nap.  It's all about what I need in that moment.  Sometimes the moment last 10 minutes and some days it's 3 hours... it's never the same and there's no way to tell in advance how it will go.  Regardless of how long it is, it's mine and my mental health depends on it.

I used to feel guilty for it... but not anymore... because I matter, my mental health matters...

 

My funk has a name....

I've been in a funk for months... not being able to put a finger on exactly what it is... is it sleep deprivation?  Is it depression rearing it's ugly head? what is it?  It finally has a name.. My husband and I were having a conversation Saturday night and it came out... all the things that were stuck in my head that I didn't want to give a voice to.  I didn't want to give the thoughts a voice because then they become reality.  But Saturday night it just flowed... we had the best date day.. nothing special, just quiet and easy.. no rushing, no chaos.. great conversation... and out it flowed... with no fear of judgement, no fear of how awful it sounded... just relief.... I gave a voice to ALL of the feelings, good and bad, and it just clicked... I am experiencing grief... I said it... I am grieving..

When we got together and combined our families it was rough.. 6 kids from 17-4 is a lot to deal with and a lot of opinions, needs and wants.  Add in the exes and it was quite honestly hell a lot of the time and we got through it by always focusing on our dream of traveling when the youngest graduated and moved out.  Well, she's graduated and has her plan rolling to move out... we should be planning what country is the first we are going to explore while my husband teaches abroad.  A different country every year or two was the plan.  We were going to see the world.  Instead we bought a house in Sheboygan, Wisconsin. 

We were supposed to buy a house last year and I couldn't do it... the anxiety and stress it caused me was overwhelming.  I kept blaming it on the big number involved in a home purchase here but that was just an excuse.  I had a dream last year, the kind of dream that is so real you just can't shake the feeling it leaves you with.  In my dream we were moving into our beautiful new home and I was so angry and sad because we were moving into a home that I hated, a home that we bought for a child that we no longer had and it terrified me.  I honestly don't know what terrified me more.. that Madilyn was no longer with us or that we were living in a home that was a constant reminder.  It left me devastated and pretty much unable to breathe, and the home search was put off another year because of it.

This year we bought the house... and it's beautiful and I absolutely love it... I couldn't figure out why I have been struggling so much.. and Saturday night in that safe moment it just flowed...I had no control over the words no matter how horrible they sounded... I would not trade Madilyn for the world.. I love her more than anyone could ever understand and at the very same time it's sooooo hard because every dream I (we) have ever had is gone.... and up until this point we have never acknowledged that.

When we got custody of Madilyn over 7 years ago we had an emergency GI appointment because she was so sick.. her doctor looked at us and said "you are doing everything you can and IF she is still alive in 3 months call and schedule another appointment but I'm sorry.. I don't think I'll see you again".... we didn't share that with anyone for years... We spent at least 6 of those years constantly being reminded at damn near every appointment that they don't know how she's alive much less how long she will live.  They don't understand how her body even functions because her genetic abnormalities are not compatible with life.... yet here she is.  We live our life with her focusing on the moment because we never knew (or know) if we would/will get another one.  We are so sleep deprived it's ridiculous and there's no signs of that ever changing... yet when we have the occasional random night that she does sleep you wake up in a panic wondering if she's even alive or if today will be the day that we try not to ever think about.  It's a double edged sword and it's devastating and sometimes debilitating.

I honestly don't know what scares me more... the thought of her not being here or the thought of living this way for an indefinite amount of years.... I don't expect people to understand that statement at all... if you don't live a life like ours you would never begin to fathom what our life is like.  Yes, we give you glimpses of it via facebook or this blog BUT we get to control what glimpses you get... we control what you see and what you know.  I have some very conflicting superstitions about the way certain things get said and about giving our thoughts a voice... I am a firm believer that if you give your fears a voice and release them to the wind they no longer have control over you... and at the same time I had a friends mom once tell me when I said "I love her to death" (years prior to Madilyn)... "from your lips to God's ears... be careful what you say... I quite honestly don't even know if I believe in God but that statement has stuck with me for 15 years... and it bothers me.. so I'm cautious about how I say things...  it made me terrified to give my feelings a voice.... but at the same time I feel I have to in order to move forward....

Moving forward in our home means learning to do things we've never been able to... like disciplining the Sasshole... the health ramifications of causing her stress in the past have always dictated that basically she get her way for miles of medical repercussions that I really don't feel like explaining... but we are in an okay spot that we have to delve into the timeout world and hope for the best....  can you imaging living with the never ending three-nager without the possibility of time out?  It's like we're stuck in a super horrific episode of Ground Hog's Day..... so away we go... hoping for the best...

Hoping for the best... praying to a God I'm not sure I believe in..... and contemplating buying myself some pink fucking shoes......... because when it comes to the Sasshole life is all about the little pink shoes...

That f*&king hill....

I was listening to a Rachel Hollis podcast the other day and she said something that really resonated with me... how you approach the hill is how you approach life.  Think about that.. when you get to the hill what do you do?  When you get to a tough choice what do you do? 

When I lived on Saw St there was a GIANT hill right outside my door if I went left... if I went right it was all level ground... If I was walking downtown it was all level but if I wanted to go the short route home there was a GIANT hill but I almost always chose to go way out of my way to avoid it and to take the easy but much longer way home.  I never really thought about it until now, I just didn't want to deal with the hill.  I actually did everything I could to avoid it.  Same was true with every other aspect of my life at that time.  I went out of my way to avoid confrontation and change.  I was also stuck in a very negative thought pattern.  It was the "oh poor me" phase of life.  The "why does this shit keep happening to me" phase of life.  I let other peoples opinions and ideas guide what I based my decisions on.  Oh my goodness, what will other people think if I do this or that?  Many things fed into that negative attitude.. I lived in a super small, gossipy little town where everyone was an expert on everyone else's life.  It drove me crazy...... but at that time rather than take steps to change it, I just avoided the hill... one detour after another.  Avoidance, avoidance, avoidance.... and that led to nothing but repeated cycles of negativity.

When we moved from that town to another one about 10 miles away I was a little braver about the hill... but I still didn't want to be there...life with Madilyn in the tiny yoop was such a struggle.  I felt like I was drowning, secluded and alone.  I had wanted to leave there my entire adult life and just let one thing after another dictate how long we stayed.  Yes, it's beautiful there... yes, our community was awesome and supportive with all the Madilyn stuff when she was born and when we got custody.  There was also a lot of negativity, opinions, advice and misunderstanding that just hurt and left me struggling and alone.

My husband came home one day and expressed some displeasure with his job and I pounced... let's sell the house and move to Wisconsin.. closer to Children's Hospital for Madilyn's doctors... don't overthink it.. don't analyze it.. just fly by the seat of our pants regardless of what other's thought and go.  Flee, run while you can, and don't ever look back was all I could think at that time.  I was drowning in depression, getting fatter by the minute because I ate every emotion I had rather than attempt to deal with it.  Medicated and miserable I knew we had to get out.... to make a better life for ourselves, for our children still at home, to save our marriage and our sanity.  It was the first time in I can't remember how long that I looked at that giant hill and decided I was going to conquer it and not go around anymore. 

It was not easy... true change never is... the first 4ish months in Wisconsin were brutal BUT it was the first time in years that I was able to find a positive in every single day.  I quit the meds and decided to finally deal with the feelings no matter how hard it was and I started the journey of taking care of myself first.  It's amazing when you do that how many people in your circle are not supportive of that. It bothered me for quite a while and now I realize and acknowledge that the ones who aren't supportive don't belong in your circle to start with.  People project their own insecurities on you when you are growing and they are not.  It truly has nothing to do with you and everything to do with them and being able to acknowledge and accept that at face value is very freeing.   Your circle should be cheering the loudest for you, if they aren't, you need a new circle.

Here's a question for you... if something/someone isn't filling your cup or making you feel fulfilled in some way why do you keep doing it? keep seeing them?  Habit? Obligation?  Here's another thought... what you allow will continue.  Only you can change it....nobody gets to dictate that for you... your life, your choice... facing that hill head on is not easy at all but it's so worth it..

Practice gratitude
Be positive
Move you body even when you don't want to
Eat the salad
and most importantly.... CLIMB THE FUCKING HILL!!

and there it is....

I finally did it... I accepted the fact that I am incapable of keeping my blogs separate.  I have accepted the fact that life with Madilyn and my journey to find me are so intertwined that I cannot (and will not) separate them any longer.  I love blogging, it's total therapy for my soul.. trying to keep two key parts of my life separate doesn't work with this... it leaves me silent and drives me nuts.. so here goes..

To those that followed www.mylifewithmadilyn.blogspot.com... I tell it like it is here, I hope you stick around.  It'll be worth it.  So here goes...

Today started out the Mondayest (I know that's not really a word but it should be) of Monday's... Monday's suck ass when there's only a few hours of sleep at a time and then the Sasshole (a.k.a...Peanugga) wakes up like someone lit her ass on fire and she's pissed.  She may be tiny but damn she's a bossy little dictator more often than not!  Put that attitude with my "I'm not a morning person" attitude and it can be toxic... like trying to mix oil and water... doesn't happen...and it's usually quite loud.  Two outfit changes, one broken lamp shade (all her) and lots of yelling on both our parts to be out the door by 9 am for physical therapy and I went without even brushing my hair.... it was one of those days that I was lucky I put sweats on and didn't go in my pj's...  after we got home and my teenager said she heard the whole thing I realized I used to think.. I really need to work on my patience, I'm a horrible person sometimes, what is wrong with me?  Today my only thought was "Why didn't you intervene for twenty seconds?"

I NEVER used to ask for help.  I do now... I've learned that I don't have to do it by myself when I have a bunch of people willing to help... I don't hesitate now to yell "I NEED AN INTERVENTION" (I actually yell it so loud sometimes that I'm waiting for the day a neighbor responds to help) and as soon as someone steps in I simply walk away to collect my ridiculous, angry, stressed out self.  When it's been a long day I don't hesitate to tell my husband that I'm out... I need to walk away for a while.  Sometimes it's just to sleep, sometimes it's to cry and sometimes it's just to put some earbuds in a drown out the noise.

I don't hesitate almost every single day to put her in the playpen and turn on my workout.  It's taken sooooooo long to make it a normal routine for us.  No matter what the mood is going on the workout adjusts it for both of us.  It totally chills me out and her.  If  I'm slacking she'll pull me over to the playpen and grunt at me... she keeps me accountable, she reminds me multiple times per day why I chose to change my life and get healthy.  I have to be able to keep up to her... I practice gratitude daily and work on being a positive person.  With a life like ours it would be super easy to get sucked into the deepest depression... I did, been there done that... I have the badge.  I was on meds for it and was borderline morbidly obese from trying to eat the things that were overwhelming me..  now I workout, eat (mostly) healthy and give my trials and frustrations a voice... I don't try to hide them because people won't understand anymore... I speak them out loud and release them into the universe so they no longer have power over me... I am a constant work in progress.

I also don't hesitate to own the fact that my sweet, loving, one of a kind, medical miracle child is an asshole 75% of the time... hahaha... a.k.a... the sasshole.. the more she learns, the more progress we make the bossier she gets.  She thrives on routines and I know this... yet life happens and heaven forbid I mess up the routine... hell hath no fury like a pissed off sasshole... imagine living your life with the never ending three-nager... now let me say welcome to my world.  We have some really great moments, every single day, and some really hard ones... every single day. 

I'm going to be putting it all here... fitness, health, mental health, marriage, life and all the Sasshole shenanigans you can possible handle, and of course.... little pink shoes...