Friday, January 4, 2019

Lessons Learned

Oh hey, here I am!  The most inconsistent blogger you have ever met.  It's a new year and a new me!  Just kidding.  Not a chance.  Same girl over here and I will not promise to get more consistent at blogging because, well- that would be a lie.  I come here when my mind has lots whirling around in it and I leave it all here hoping someone says that their mind is thinking the same stuff and I'm not quite as crazy as I feel.  I read something and it really hit me as it seems like what I am constantly trying to explain to my husband as to what my life feels like. 

First of all, I must say that I am probably the furthest person from perfect and have zero desire to even be close BUT I am kind.  And, I do have boundaries.  And, I do have empathy.  I've put my struggles out into the universe because I absolutely have no shame in my story. I have no shame in the steps it takes me each and every year to fall and rise and learn how to be a better human.  With sharing your story, it opens you up to a lot of responsibility.  You have to be ready  to help, ready to hear pain and ready to develop action plans.  Part of sharing my struggles has given me the gift to help, actually TRULY help, so many people.  So many unexpected people.  I say it is a gift because the fact that people trust me, respect me and need me, is not something that money can buy.  I never knew that sharing so much would bring this to me but its been an opportunity to add more purpose to my life.  The  moment I receive a message, because that's how it always starts, my heart completely opens and I have the ability to turn everything else off and listen.  I'm not a therapist, I'm not a doctor, I'm sometimes not even a friend but I am a person who has walked through fire time and time again and always rises out.  I promise you that I'll continue to stumble and fall but I also promise that you'll always see me on the other side of it.  

Here is the flip side.  There are people that will come and unload their baggage on your plate and leave it there.  They will take your time, take your advice, and disappear.  They will never ask how you are.  They will never do nice things for you.  They wont even say thank you.  They will take what they need and leave.  Maybe doesn't sound like a huge deal.  To some it may not be.  To me, it is.  Here is why- If you give me your sadness, your pain, your suffering, I am OK with that,  I'll receive it because when I'm suffering, I dont have the ability to give it to anyone because I shut down completely and its horrifying.  Understand, if you've given it to me, I cant just set it down and walk away.  I feel it, I hurt for you and I will carry it day and night until we can make a better plan because that's just who I am.  

The question becomes in this crazy world is how to sort out the good people from the bad people.  And, maybe they aren't even bad people but people that are bad for you.  I'm learning this very slowly.  I'm learning that not everybody who wants in your life should be allowed in your life.  I'm learning that some people you met yesterday might be the next best person in your life or might be the absolute wrong person to enter.  Relationships and friendships have to be mutual.  The effort and empathy towards each other must be parallel.  Its even OK for friendships to end if you change and grow.  We are certainly not the same people we were 20 years ago.  Thank God!
It seems like people are so distracted or overscheduled lately that they put everything in the whole worlds importance over actual people.  They are "SOOOO BUSY" yet I have to wonder, what the hell are you doing that you cant dial the phone while you are driving to ask how your friend is?  How are you so busy that you can't make it to the gym to be a better you yet you have a ton of time to complain about being unhealthy and enough time to post and scroll Instagram for hours each day. How are you too busy to go to dinner, yet you eat dinner every single day of the week so that's 7 opportunities to see a friend.   Check out your screentime per day people and then decide how "busy" you are!  Again, I'm not innocent here, I'm just saying this world is becoming very impersonal and its sad.

I have found myself so disappointed in so many people this year and it really was difficult for me.  I had a lot of hurt feelings and felt a ton disappointment.  I dont believe in resolutions but I do believe in growth and change.  My current goal is to really figure out my circle.  I want to surround myself with people that give what I give.  I want to learn to ask others for help when I need it and I also want to help those that need help.  However, I need to eliminate some of the "takers" from my life and that is not always an easy task.  I've got some soul searching to do and once I can create a more positive environment for myself, I hope my children can learn to do the same.  We don't have to be everyones friend.  We have the right to choose who we surround ourselves with.  However, we do not have the right to create harm or to be hurtful to others.  Its a delicate balance that I'm going to lead for myself and for my family.

I hope you all find your people and I look forward to what this world brings to me this year!

A little update on my family:
Everyone is doing great!  Matthew started a new job in a completely different field and is loving it.  We are excited for the opportunities it may bring to our family and are so happy he is enjoying work again.  Carter is in middle school...lord help us all.  He is a straight A student, an excellent athlete, absolutely gorgeous and has found this super awesome new personality of talking back and actually thinking he will EVER have the last word with me.  Now come on, that's actually funny!  Never, child.  Never.  Paige is doing ok too.  She had a rough start to the year with some mean girls but we are teaching her how to weed them out and she is feeling good again.  She got a new bunny named Storm and I love him as much as my children.  Just kidding.  Kinda.  Paige really loves him and carries him everywhere she goes.  She takes care of him completely on her own and is doing a great job.  She is still dancing her heart out and also joined a travel softball team.  Easy is still Easy!  He is in 2nd grade.  Loves Math and Recess and Gym.  His lungs have turned back to complete garbage and the poor kid has more asthma attacks than you would even think possible.  He continues to be a super good sport about it and doesn't really let it slow him down from anything.  His teeth are falling out like crazy and he for sure eats more than any other member of this family.  He makes us all laugh a little harder each day:)As for me, I earned my PRO Card last year and will compete as a PRO in Washington DC in October.  I'm nervous and so excited all at once.  My goal is to win.  I'm pretty sure top 10 or even 5 would be a great goal but I am going to do EVERYTHING in my power to bring the absolute best package possible.  I love a plan and a goal and I've got my mind wrapped around that.  I also want to get involved in some other organizations and do some more volunteering in other places as well as my beloved HURLEY!

Clark Babes 2018 Christmas

We still LOVE Florida

Thursday, April 12, 2018

It isn't in my blood.

My husband sent me a song the other day that reminds him of me.  In My Blood by Shawn Mendes.  The chorus:
Help me, it's like the walls are caving in
Sometimes I feel like giving up
No medicine is strong enough
Someone help me, I'm crawling in my skin
Sometimes I feel like giving up
But I just can't, it isn't in my blood
It isn't in my blood.

It isn't in my blood.  He is so right about that.  I don't know what I'm made of but its a whole lotta fight mixed with will power and determination.  I lose sight of that.  Often.  But, when push comes to shove, I continue to rise.  Claw myself out of the hole, doggy paddle to stay afloat, barely surviving- it's not pretty, surely not glamorous but its still rising, dammit,

I had another ebb.  I always prefer to flow and I had a good run.  Six months or so of flowing is epic around here.  I was doing well.  Feeling good, accomplishing life's tasks, not getting too overwhelmed, sleeping at night, you know- flow like things.  And, then it happened.  It almost feels like overnight but when I become clear (after) I can see exactly what took me straight to a hard ebb.  

You see, life is hard.  For everyone.  If you tell me that your life is perfect and easy- then that's awesome but I don't believe you or your instagram life so you can just keep living the dream and kindly leave me alone.  We do not need pretenders in this world.  We need Allies. Partners.  Friends.  Don't get me wrong, I'm not saying life isn't wonderful- I'm saying it isn't easy.  People forget to post that stuff.

I started realizing things were slipping with me a couple months ago.  I started laying in bed during the day.  I started NOT making plans.  I was tired 24/7 yet couldn't sleep.  Nothing was fun.  Everything was a chore.  Everyone bothered me.  I talked to very few people.  Then the dreaded horrific feeling of wanting out of my skin came.  And wouldn't leave.  I had a constant pressure in my chest.  I always felt like I couldn't breathe.  The actual attacks started.  Then the tears.  Then the panic.  I had allowed myself to fall further than ever since I went to Arizona.  I was mad.  I wasn't sure why or how I let it happen.  I'm supposed to be tougher than that.  I'm supposed to be an example.  I'm supposed to be grateful.  I'm supposed to be Lindsay…whatever that means to people.  Except, I'm human.  And, I fall.

I started spreading myself too thin.  I started taking care of too many people.  I started not putting my needs first ever.  I started not doing things that fill my cup.  I started only giving and never refilling.  I felt unappreciated and unimportant.  Nothing was OK.  Not one thing.  

What happened next took me by surprise.  My friend lost her daughter.  The empathy I felt was overwhelming.  This isn't someone I have known forever.  This isn't someone I hang out with everyday.  This isn't someone who is in my every single day life.  But, I felt broken.  For her.  My children are the same ages as hers.  I've been to hell with my son but I got to come back.  It was horrific and intense but I didn't lose him.  Why did she lose her daughter?  Survivors guilt is real and I cannot minimize that and Im sure that is not what I had but its some kind of a version of what I felt.  I'm going to do my best to explain this carefully and properly.  I didn't want to change places with her.  However, I wanted to walk through the pain for her.  I've walked through lots of fire and I just didn't understand why she had to walk through the absolute forest fire of them all.  It consumed me.  Her pain.  Seeing her at the funeral home and funeral was so incredibly physically painful and she was a beautiful pillar of Strength and Dignity.  It wasn't that- I just didn't understand why her and not me.  I know I am not God and I know I don't get to decide but the entire devastation of all of it was beyond overwhelming and took a very personal toll on me that was unexpected.  I still don't understand and I never will. But, I do know this- I'm so proud to have this woman in my life. 

After that experience, I was going to get my ass up and handle all the things.  I was going to just be grateful and the best wife and best mother and best friend.  Rigghtttt.  As if, that is how it works.  Like you can just tell the anxiety and imbalances you are feeling to take a hike and then everything is better.  Not a chance.   I knew what needed to be done.  I knew I needed to call my therapist.  I knew I needed to take extra meds to relax.  I KNOW the drill.  But, I didn't.  I got paralyzed.  I couldn't do ANYTHING.  I went to the gym and then I went home.  End of story.  

I only share this because I am not the only one suffering and I KNOW that no matter how open I am- people never, ever picture me in this state.  My poker face is stellar.  This is where it gets ugly:

I got the headache.  The god damn headache where I can't see out of my left eye.  I do not know why or how my body does this but it is the last straw.  Its the final warning.  Its the fire alarm.  It's my body saying "Game over."  It happened 12 days before I went to Arizona and didn't leave.  I knew I was in huge trouble when it hit.  I was in bed for most of the next couple days.  This always leads to tears.  Tears of failure for accomplishing absolutely nothing.  Tears of sadness for missing my kids.  Tears of fear of scaring my husband.  Tears of of disappointment for not taking care of my friends.  Tears for all of it.  The sobbing came one night and couldn't stop.  I was sitting on the edge of my bed and my husband came in with the look of absolute devastation.  He had a pill in his hand and he so sweetly gave me all the reasons why I needed to take it to rest.  To lose the headache.  To give my brain and body a break.  He went over all the reasons why I needed my therapist and I wasn't a failure.  Bless this man.  Bless  him!  It was a bit longer of a conversation than that but I took the pill and gave my body a rest.  I woke up, called my therapist and my Matthew changed my plane ticket for the families Spring Break to four days earlier so I could have peace and solitude to collect myself, think, make plans and start digging out.  I felt like I couldn't leave my family and go early because of course I would be selfish to take time alone but he and my therapist convinced me to do so and it was 150% exactly what I needed.  To be removed.  From People.  From Responsibilities.  From Life.  

I spent those days sitting in my church (aka the beach) and listening to the water and really evaluating my life.  Priorities. Everything.  Being alone is hard for a lot of people.  Actually sitting with yourself can be tricky.  I wasn't always sure I loved it but I've now found a peace and healing with doing just that… actually sitting with myself.  I did the work.  I didn't just go to the beach. I didn't just run.  I talked to my therapist.  I talked about all the things I don't want to talk about.  I thought hard about the actual changes I was going to make.  We all know the definition of Insanity and therefore change does not come without change.  I made decisions.  I had conversations.  I set goals.  I DID THE WORK.  I FILLED THE CUP.  Thats the thing, nobody wants to go to the painful spots.  The uncomfortable feelings.  The hard stuff.  You have to walk through the fire baby, if you want to get through the other side.  I put on my bravest face and stormed through...

And, I'm back!  I had the best time with my family.  I still hate the weather here but I'm flowing my way through the days.  I think each time I hit the Ebb, I learn more about myself and I come back not only stronger but swingin'!  I'm grateful for this life.  This wonderful, terribly difficult, awesome journey with my chosen people.

Giving up… it just isn't in my blood.  Thank God!

In my favorite place with my favorite people.

Thursday, November 2, 2017

Often times I run into people who randomly say to me, "Hey, I read your blog!"  It always astonishes me, each and every time, not only that people read it but that they genuinely seem to care about what I have going on.  I just looked and its been SIX months since my last post… thats just shameful!  I have no idea how time passes so quickly in this busy life but it does and today I had a rocky start to my day so it seemed like the perfect day to sit down and reflect.

I haven't been sleeping well.  At all.  Most of you know that I am the worlds worst sleeper when I do not have medication to help.  The crazy part is this- if I am doing just fine, this medication knocks me out unconscious like I may not know if the house burned down around me.  BUT, if my body is feeling anxiety- doesn't work at all.  Its mind boggling to me how intelligent and intuitive the body really is.  So, this morning I rolled out of bed feeling all sorts of grumpy and tired and my kids said "Mom" at least 4,634,902 times.  I have no idea why.  Its like they know.  I actually didn't lose my shit on them which I was proud of but I knew I had to lay right back down after I got them on the bus and push my gym time back. And, then it came.  Ugh.  As I laid there and tried to rest I got that terrible, overwhelming feeling of hotness and the feeling where I need to climb out of my skin.  I laid on one side of the bed.  Then the other.  Then, as crazy as I know this is- I tried laying at the opposite end of the bed where it might have less of my body heat and I could be cooler.  Then my hands felt like needles, then I felt like I couldn't breathe, then I wanted everything to shut down.  Its legit the worst feeling.  I actually did the right thing for once in my life and managed to get to my purse and swallow a xanax.  I spent the next 15 minutes just praying and wishing the tightness in my body would release and that my head would stop and thats all I remember.  I woke up at 12:10 in the afternoon.  My body felt sore.  Groggy.  Tired.  All the lovely after maths of a good old fashion anxiety attack but I was OK.  Mainly pissed I lost half my day.

Here is what I want to say about that.  I really am doing well.  I'm happy.  I've found a rhythm to life that works and I'm learning to TRY to take care of myself on days that don't feel right.  But, this STILL happens.  It can be unprecedented.  It can be random.  It can be come before the realization of something that is bothering me or it can come after.  Its a disorder.  I do take medication.  It still comes and goes when it wants.  Here is the difference.  Today- it came, it went and then I decided to rise.  This is where I differ from years before.  Once my head became clear, I still went to get my eyebrows done (super important), went to get my son a new pair of pants and hit the grocery store.  I still have to get to the gym, organize my kids so they are ready for the next few days as I leave on a little "getaway" and I need to pack my bags.  Usually- I'd have chosen to give up today and today I choose to reclaim what is left of the day.  Life is not perfect, nor am I.  I will say this, I  am giving it every ounce of what I have.  Everyone has some challenge, I just hope and pray that they can find a way to live with it and not let it steal their life as it did mine for many years.  Thats the biggest victory of all time:  knowing your shortcomings and accepting and acknowledging them instead of allowing defeat.

On to better things!  So….. I did the thing.  I did the fitness show.  I still cannot believe for one second that I actually did that.  TWICE!  Here is the thing.  I like to do hard things.  I like to challenge what I am made of.  So here I am, a horrible anorexic in recovery that will not even get on a scale at the doctors office- standing in a skimpy bikini on stage in stripper heels being JUDGED on her body.  I mean, what in God's name could have been more of a personal challenge?!

The first show I got 1st Place in Masters and 1st Place True Novice.  I was 2nd Place in Novice and Open.  The second show I was 1st Place in Masters and 1st Place in Open.   Mission Accomplished.  I couldn't be more proud of myself not for the body I have created- but for the courage I had. 

Im sort of in an in-between stage with my fitness obsession right now.  I'm all set with shows.  I came, I won, I'm moving on.  I'm still killing it at the gym on a daily basis.  A new gym, that is.

Something happened to me  that I've debated talking about.  I'm going to say very little but I am going to bring it up because its important and it affected me greatly.  One week before my second show which is an extremely mentally and physically challenging time- I was assaulted in my gym by a woman in her mid-40's.  The cops were called and I went back and forth with pressing charges.  In the end, I did not because I truly feel sorry for the woman that did this to me.  Who, at that age, that is a mother would actually do this to another woman?  This woman needs more help than an assault charge will bring her.  Sadly, I had to fight very hard to get my membership terminated at the gym as they saw nothing wrong with this happening inside their doors. I was treated with complete disrespect and am grateful I had a backbone and was willing to stand up for myself.   I've heard this woman who hurt me wanted me gone for whatever reason… and my friends,  I walked out that door and never ever looked back.  Her victory has been achieved and I can only hope she rests well at night and that she feels accomplished.

However, its worth noting that I still got my ass on stage 7 days later and kicked some royal ass with TWO first place wins.  Having someone actually put their hands on you is devastating and violating and very hurtful and I'm not talking physically.  Bruises fade but memories remain.  My guard is up and I'm a little gun shy of new people but I got right back out there and I am still doing my thing.  My way.

My family is doing great.   We had an incredibly busy fall.  Paige played soccer and danced twice a week.  Carter continues to play soccer for the Celtics and absolutely crushed the season of Flag Football.  Easy is not wheezy (yay!)…AND he played soccer and flag football.  We (Matt and I) ran our booties off getting these kids to everything and we are finally on a small hiatus until mid-November with the exception of dance.  I begged Matt for a small getaway for us before more chaos and he is whisking me away tomorrow to my favorite place on earth.  

Thanksgiving, my absolute least favorite day of the year is coming up and we are planning to spend it with the Babes in my favorite place AGAIN!  Cold weather came and in my usual fashion- I hit the keyboard in booking trips to get me away from the cold.  Its so bad for my personality.

There you have it.  Life at is rawest.  The good, the bad and the ugly.  At the end of the day, I'm still full of gratitude for the life I do get to live.   Keep rising, friends.  Its the only way!

I'll leave you with a few pictures of my life.

Thursday, May 18, 2017

A letter to my son.

Today is your 6th birthday!  That means that I have now had the pleasure of being your Mom for five whole years.  I wanted to sit down and write you a letter on this day because although you have heard your story a million times throughout your life, I don’t think I have ever told it directly to you.  I never want to forget what these last five years have been like for me and I want you to know exactly how special and what a miracle you are.  I know you wont read this letter today and possibly not even for a few years but this letter is from me to you and will be given to you as soon as you can read it for yourself and when I’m sure you will understand the content.   Your story is only five years old so far, but it is extraordinary.  Easy E, here is your story.

Every single detail to your story is a little different than all the rest.  For beginners, I was surprised when I found out I was pregnant for you.  I was always planning to have more children but just not so soon!  When I did find out I was pregnant for you, I took seven tests.  Why so many?  Every other test I took had a different result, four were negative and three were positive.  I had no idea what was happening and if this was real or not!  Little did I know this was only the first of the “Adventures with Easy!”  When we finally got the blood test results that did show you were in fact on your way, we were not just surprised- we were ecstatic!  Our little family was growing.  When I was just 19 weeks pregnant for you, Mom and Dad went to a Kid Rock concert that you must not have enjoyed because it put me right into labor.  I didn’t go to the doctor right away but the next morning I had a bad feeling that the contractions I was feeling were real.  Sadly, I was right.  At less than half way through your pregnancy I was ordered to strict bedrest, weekly progesterone shots and stress tests and steroid shots for your lungs on four different occasions.  I was admitted to the hospital in early labor at least five times and even spent my 30th Birthday in Hurley trying to keep you safe.  This was a really hard time for us because Carter and Paige were only one and three years old and I wasn’t able to care for them at all from my bed or the hospital.  I knew in my heart that you needed me to follow doctors orders and I did everything in my power to keep you safe inside of me for as long as possible.  While you were growing inside me, we spent a lot of time alone as Daddy took care of your siblings.  I talked to you all the time and I feel like we made some “deals” about you doing your part and me doing mine.  I was bonded and connected to you well before I ever saw your face.  I knew you and my instinct that you knew me was confirmed later (and I’ll tell you how later in this letter.)

Before the storm...
There were so many trips to Hurley with contractions and labor but we were so fortunate that by the Grace of God we made it to 36 weeks.  At this point, you were so low and ready to come out that I was in excruciating pain that couldn’t be tolerated without medication and your heart rate was starting to show some signs of decelerations during the ever present contractions.  The decision was made that I could get out of bed and deliver you.  The morning you were to be born was full of gratitude and relief that you had “made it.”  You were supposed to be a decent size, we were out of the major danger zones where we didn’t think you would need support to breathe.  Your sister was also born at 36 weeks with no complications so in our hearts and minds- we knew you were good to go!  Oh , Easton, how I wish that could have been true for you.  The labor for you was so quick and the delivery even quicker.  It was only a few hours from start to finish.   As soon as you were born, all the weight of the world was lifted.  I was so happy you had arrived safely after months of fear.  I loved you so much.  When you are first born, the nurses give you scores on how healthy you are.  Yours were perfect.  It was one magic moment after the next.  All of our family was there and after I held you, I let them all pass you around and see for themselves what a perfect miracle you were.  After only about 30 minutes, I heard you making this little noise.  Everyone in the room thought it sounded like you were cooing and was talking about how sweet it was.  I instantly knew that you were not OK.  I knew right then and there in that moment with your little sounds that my world was about to rock.  I begged the nurses to come in and look at you.  They thought you were OK.  I told them you weren’t.  The NICU doctors were present for your birth and cleared you but I made them come back.  Easton, I knew you were sick.  I knew you needed help.  I was never more sure about anything in my life even though nobody really believed me.  I wasn’t able to leave the room to go with you but I made Daddy follow you.  He called me from the NICU and said that you were doing OK and that you were just born too fast.  Everyone was so relieved.  Except me.  I didn’t believe them.  There was something in my gut that told me you were not even close to OK and they just didn’t know it yet.  I knew you.  Nobody else did.  As the night  went on everyone told me to rest.  I couldn’t.  I kept walking from my room to the NICU even when they told me not to.  Everytime I walked in the NICU- you were worse.  You went from breathing fast, to a nasal canula to bipap, to a Ventilator in less than 12 hours.  Easton, this is where things get hard for Mommy to tell you about.  I did not know what a ventilator was for.  I didn’t know that it can be a temporary relief for you. I thought that when a human being went on a ventilator- they didn’t come off unless they died.  When they told me they were putting you on a ventilator- I thought that you were not going to survive.  A name you have heard many times and will continue to hear for the rest of your life is Roberta.  Roberta was your nurse that day.  When she realized what I thought, she came and pulled Mommy up off the bathroom floor and put you in my arms for the first time since you were born.  She knew you were not stable but she also knew that I needed you and I think you needed me at that moment.  I think I was able to hold you for about one minute- but in that moment, I gave you all the support and will and fight I had to give and I begged you to FIGHT!  Buddy, that was the last time I held you for almost three weeks.  You were so sick.  They had to move all the other babies to another room and they put up these privacy walls so that there was no extra stimulation.  I couldn’t even speak around you.  You could sometimes tolerate the nurses and doctors speaking softly around you but every time I spoke or attempted to touch you- your little body went crazy.  This is when I knew for sure that you knew me.  You knew your Mommy even in a drug induced coma.  You knew my touch was different from anyone elses and the very sound of my voice was enough to break you through all those heavy meds.  As painful and devastating as it was to not hold you or touch you or speak to you- I feel like my silent presence a few feet away gave you courage and fight.  Everytime I left the room which was rare, I did whisper to you “fight the good fight, buddy.” 
Bi Pap
Nasal Canula

            There were so many scary days but I want to tell you about the scariest day of our life.  The day I witnessed

a miracle- YOU.  Easton, you were three days old.  You were on a ventilator and then they moved you to a high frequency ventilator which shook your little body as it breathed for you.  The settings were maxed out and they were pumping every drug they could into you.  It wasn’t enough.  Nothing was working.  Your little body was giving up.  You were gray.  You were limp and there were probably 15 people working in perfect unison around your tiny body.  They were fighting so hard for you.  They called a helicopter to come take you to another hospital because they thought you would need  something called ECMO- a heart/lung bypass machine.  I stood watching you and praying so hard.  I begged God to save you and I begged you to not leave me.  One doctor turned around and told me that you were leaving this hospital but that you would not survive the flight to the next one.  They told me you weren’t going to survive, Easy.  I don’t have the words to tell you what that meant or felt like.  There aren’t any words that can do that justice.  I made a couple phone calls and your whole family showed up in the waiting room within minutes to be there when you left us.  Then it happened.  The limp baby whose SAT’s kept dropping despite all the drugs and being bagged for so long, the one who was awaiting transport- became stable.  Not super stable by any means.  Your o2 popped up into the 70’s again and you sort of stabilized.  So much so that they didn’t want to transport you because they knew you couldn’t handle the stress.  They wanted to put you back on the conventional vent, fill you up with maximum steroids and basically sit still and wait.  I was staring at everyone in that rooms face.  I could see the shock.  Nobody had many words for us.  They had hugs for me and a lot of tears in their eyes.  I knew what just happened.  I knew you had just fought the fight of your life. 
Too many drugs.
Willing my strength into you
Paralyzed baby:(
            The rest of your stay in that NICU was more of the same.  You had so many terrible days and very few good ones for so long.  They did not give up on you and neither did I.  I sat and stared at you all day, every day.  Rooting you on from afar because Lord knows I couldn’t touch you.  I know you knew I was there.  I know you knew I wasn’t giving up.  Day after day it was a roller coaster.  You were never really OK but you weren’t as bad as that dreaded day 3.  After about 3 weeks of that, you slowly started to turn the corner.  You opened your brown eyes.  You let me touch you and eventually, you were placed in my arms again.  We made all kinds of deals again on that day.  I thanked you for fighting and I told you all the things we were going to do with this life you fought to have.  All you had to do was keep fighting and I would carry you through.  Me and you, baby.
That poor chest!
Getting closer to home.
            Exactly one month later, on your due date- you came home!  This was dramatic of course as well.  Your airway was floppy from being intubated so many times and you only failed your car seat test FOUR times!  We finally got the OK and I had to ride in the back and try to keep your head straight so your airway was open.  So stressful you were!  We had home health care come a couple times a week and every single time you were right on the line for needing supplemental oxygen at home.  Have no fear, you prevailed as always and we skipped that!  Thankfully.  Soon we got another surprise.  You screamed all day.  Literally 23 hours a day.  You see, when you were in the hospital you had some narcotics running in your IV’s all day long.  These were to keep you calm, still and not in pain.  Your poor little body started to really like them and then you had withdraw symptoms once you were home and without.  Here is the good news.  I told you I had made a lot of deals with you when you were in the hospital.  One of them was to not ever wish you to be silent.  On a ventilator, you could cry but it was silent and I swear it’s the worst thing to watch, a silent cry.  I wanted so badly to hear you scream.  And, scream you did.  For months on end.  All the time.  I’ve never been very patient but I will tell you that I never lost my patience.  God knew I needed them and gifted my endless patience and gratitude.  My son, you screamed in my face for months and I did nothing but love you harder!
FINALLY meeting!
            There were many other complications such as failure to thrive, muscle weakness on the left side and pneumonia 5 times and RSV 3 times all in the first 9 months.  We did occupational therapy, physical t

herapy and saw the Neurologist regularly.  You were admitted into the hospital for respiratory support three times during those first nine months but guess what- you were on track and walked before your first birthday!  You are the biggest inspiration of fight I’ve ever witnessed.  I’m so proud of you.
            We started a charity called Team Easton Gives Back and held the first event around your first birthday.  We knew that you were with us to make a difference and we weren’t about to let your fight go without serving a purpose.  To date, we have raised over $100,000 for Hurley NICU and Pediatrics in your name.  You are leaving a legacy, young man and I cannot imagine where this world will take you.  This year you were selected to be the Speedway Sponsor for the Children’s Miracle Network and you will continue to raise awareness.    Six years old and already a role model.
            Before I close this letter, I want to tell you about you as a little boy.  You are exuberant.  You are literally full of life.  Every day at school is “great!”  Every gift you receive is “The best one ever!”  Every time you are sick or in the hospital, you find the bright side.  “At least I’m only here 5 days instead of 6!”  You are tolerant of your crappy lungs.  You push them by being an active young boy but you recognize when they need a break and you give them one.  You are not held back by them.  If you find something you cant keep up with, you simply find something new.  You are full of stories and always surprising us when “Jesus sits on your shoulder.”  We take our cues from you and we know you are here with purpose.  You are a breath of fresh air and you teach me so many lessons in this world.  I truly believe you are happy to be alive and you know somewhere deep inside your soul- that you were given an extra shot.  Easton Edward, you changed everything and I love you more than anything in this world.  Keep fighting that good fight, baby.


Wednesday, March 29, 2017

The Good Stuff

My mind is so busy. It's like a highway with a car driving the wrong way coming straight at you, and I'm that car. The crazy one going the wrong way. Don't get me wrong, it's been a lot busier in past years but that's about how it feels today. The medicated me is still the car coming straight at you- the wrong way. You know what? I'm borderline to partially OK with it. Here's why: it means it's still me. I'm not overmedicated roaming around life in a fog or high with my head in the clouds and not a care in the world. I'm still basically a wrecking ball but with the ability to think and take control of my feelings and decide what to do with them versus them deciding what to do with me. It's basically a win. Sorta. Well, for me- huge win.
Life is constantly changing around me. The people I interact with, the places I go, the activities I engage in. It's almost like an adventure- God only knows what I'm up to next. I feel like lately I'm figuring some stuff out. Let's not get carried away- there's about a lifetime times 12 left of the things I'll never come close to figuring out but that being said- here's some of what I'm noticing. Lets hope I can explain it....
Allow me to start by saying that I feel like
Money is imperative. I like it. I want a lot of it. It's necessary for living and let's be honest here- I want a lot of things. I do. I like to have a lot and I want a lot. I'm a tad spoiled and sadly (I think) I don't really know any other way. Here's where it gets interesting: I'm finding that all the things that are feeding my soul and filling my cup are .... wait for it....FREE!. They cost me nothing and I make nothing. They are FREE in every sense of the word. Here's what I mean:
Team Easton Gives Back. This is about raising money to give back. An act of gratitude and attempting to do the right thing. I make not one single cent. I actually donate a lot of my time and money to make it happen. It's stressful to pull off, more work than you can imagine and yet, when it's all over and that total comes in- there is no better feeling. My heart wants to explode. I'm honored, proud and so incredibly grateful to see a community and friends come together to help give back. It makes me feel good.
Volunteering in the NICU. It's 16 hours a month. I make not a cent. I hold, love, connect and bond with newborn babies that would be sitting alone in an isolette or crib if I wasn't there at that moment. I have no idea why their own Mom isn't present and it's not my business- but I will be that substitute Mom and love as hard as I can for the time I have to give. It fills me up. It makes me feel good.
Serving on Hurley Foundation Board. I do not make a single penny. I believe in Hurley Medical Center. I believe in what they stand for, their standard of care, their mission and all those humans that work inside that establishment. I believe in them. Serving on the Board allows me to be involved in that Team. It allows me to be a part of decision making and brainstorming and executing. It makes me feel like I have a voice. It involves me with people I respect and guess what? It makes me feel good.
Kids activities. Showing up to watch my sons and daughter play sports isn't exactly like a trip to Somerset. It's better. Sure, it's annoying being a chauffeur day in and day out running to practices and having no time for much else. But, man. To sit in the stands and watch your kids put themselves out there for everyone to see is so exciting. When they score a goal and look in the stands to make sure you are proud, or when they nail their dance at the competition and your the only face in the crowd they see, or when they even have a rough game and they look at you to make sure they are ok... this is where it's at. Those feelings I get from just being their person out in the crowd- it fills me up. It reminds me of my purpose. And, it makes me feel good.
Fitness. This one is a little iffy on costing anything because I do pay a trainer. However, what I get from it is not about that. When I have that hour a day of pushing myself to my absolute physical limit, when I don't think I can do one more rep or increase the weight and I look directly into (one of the 50,000) mirrors and into my own eyes- the determination and fire I see in myself... is priceless. And, take a guess? It makes me feel so good.
I want to make sure you all know that I really own like to carry a Louis Vuitton purse. I only shop in boutique stores or lululemon. I've got an addiction to No Bull shoes and my finger nails must have fresh shellac. Often. Here's what I'm trying to say. I like all those "things" but I promise you with all my heart that none of those "things" actually fill me up. They make me feel good in the moment but you better believe they aren't what I think about when my head hits the pillow. And that's where all the truths live- with your head on your pillow at night. We can all try to be things we aren't or fill ourselves up in the wrong ways- but when your head hits the pillow- truth lives. Always.
Try it out. I don't think I'm insane, I know it. However, I think I'm on to something. What if we all tried to be better people? What if we all worked on filling our own cups instead of emptying them on life? I challenge you to sign up for one thing today- that serves one purpose: to make you feel good and that you get no monetary reimbursement for.
Let's just all try.
Fill 'em up!

Sunday, March 19, 2017

Back to the NICU...

Hi friends.  I know I always say I am going to get better about coming to this computer and writing my guts out, but then I get distracted and busy and living this crazy life- so lets just drop that expectation and leave it as I'll show up when I do.  You know, on my own time-like with everything else.

Lots has been happening.  Some good.  Some sad.  Big changes and small changes.  Some I am ready to share, others I'm still holding on to.  There is one thing in particular that I need to talk about:

Many of you saw my posts about my NICU volunteering last week and were so gracious and kind and loving with support.  It always amazes me to see how many people are on my team in life.  I need to write about this whole experience because I am forcing everyone I come in contact with to hear about it so clearly it needs to come out.   Let me start from the top with this because many don't know the extent of the WHY behind my volunteering.  If you know me or have read this blog in the last five years, you know that Hurley Medical Center's NICU team, along with the Man upstairs, saved my son.  They didn't just save him one time.  They saved him over and over and over again, day after day, until he didn't need saving anymore.  As a Mother, who never left that baby's side, watching in horror- I know that it is a Miracle that Easton Clark is alive today.  By "Miracle" I mean that all the right hands, and all the right decisions, and all the right brains and all of the refusal to give up on the staff's end and the Will to live on Eastons's end along with all the answered prayers brought that baby back from the brink of death time and time again.  I could not just take that baby home and not forever leave a piece of my heart inside that Intensive Care Unit.  The lowest of lows and the highest of highs took place behind those doors.  "Thank you" was not even close to appropriate for what they had done.  As I cared for my little miracle baby, I couldn't look at him without seeing the faces of the people that helped him survive.  I had to do something.  I had to give back.  Creating and executing "Team Easton Gives Back" has been an amazing experience.  We've raised over $100,000 and we are not done yet.  Handing over the checks to help keep the Unit up to date and provide education for the staff is wonderful but something still was missing for me.  You see, I hadn't healed from my trauma behind those doors.  I LOVE everybody that works inside that NICU but I couldn't even walk through the doors.  The air was too thick, the walls were caving in, the doors that were locked didn't seem like they would open and I simply couldn't get past those feelings.  Sure, I could go the rest of my life and never go back to that place again since I'm done having kids but thats not who I am.  I don't want fear to hold me back or to win in my life.  I like to challenge the hard things but this was one that I just couldn't do.  When the NICU Cuddler program was announced- I decided that day that it was my opportunity.  It was my chance to give back in a non-monetary way.  It was a chance at healing myself and helping others- all in the same moments.  I told my girlfriend who works there that I was signing up.  She said to me, "That's great but if you can't even walk through the doors, how are you going to do this?" You know what my autopilot answer was?  "I'm don't know but I'm gonna rise up and walk right in there."  And, I did.  

The first part that happened in training was the tour.  I was scared to death the whole drive there.  Once I got there, I was greeted by a familiar face and immediately thought I might be OK.  The doors opened and (thank you, God) there were so many more familiar faces.  Lots of hugs and I genuinely felt myself becoming OK in those first few moments.  There are a couple spots that I am going to tell you that I will NOT EVER visit.  First, the X-ray room.  Allow me to give you a visual.  This room is an interior room.  No windows.  Shaped like a rectangle.  Insanely small.  Zero ventilation and Im not 100% sure but I really feel as though they turn off all vents and suck all the air out of that space- I could be wrong but I don't think so.  There are two computers.  They use these two screens to pull up images of your baby.  In my case, they were used to show me Easton's horrific lungs.  In this room I was told that I should pray.  Thats about it.  Thats about as much hope as they had.  Prayers.  Inside this room, I learned just how sick my boy was and I learned that they didn't really think he would make it.  I wish it ended there.  Day in and day out, I was taken into this room to be shown just how much my son was NOT improving.  It was dreadful.  So, needless to say- I see no reason to revisit that space.  The second spot is the parent overnight room.  This is where we stayed for many, many nights.  This is where I was supposed to "rest."   It has a shower, a refrigerator, a TV, a couch that turns into a bed.  The deepest sobs and the scariest conversations happened inside that room.  I know where the cracks in the walls are.  I know where all the outlets are.  I know exactly what every part of that room looks like.  I was very grateful for that space, however I know my heart isn't ready to see it again.  Every space in the NICU has a memory attached to it.  I'm working through that but let me tell you about my first day!

We must remember that the NICU has to be a judgement free zone.  We all know I'm judging but we are going to pretend I'm not.  Its a tough place.  I think its one of the most important places in the world.  Here's why:  If you don't make it out of the NICU- then you don't even get a shot at life.  This place is only for newborns.  These babies are fresh out of the womb and they have never seen the light of day.  These babies are full of opportunity- just waiting.  So, my first day.  As I walked in and scanned the area looking for a baby that was alone and to be held- my mind was getting carried away with my own memories.  I had to refocus and remember why I was there.  I held a few babies but there is one in particular I'm going to tell you about.  It was a little girl with the sweetest name.  She was all alone in her crib.  She was four days old.  Every time I walked by her she was awake but she wasn't crying.  After passing her twice, I decided I had to hold her.  This is where the no judging comes in.  When I had my two older kids that were healthy- I was so selfish with them.  Family and friends all wanted to hold them at four days old and I just wanted to hold them myself.  I often used the excuse that I had to feed them just to steal them away.  I felt they were growing and changing every second and I didn't want to miss it. Here I was, holding someone else baby at four days old.  I don't know a thing about this baby other than the fact that she was in a crib alone at four days old.  I feel it should be like a law of life that you are being held and loved at four days.  As I held her I found myself wondering where in the hell her Mother was and if she had a Dad.  I wondered what was going to happen to her after she was discharged.  I wondered if she was even going home to a family.  And then I stopped.  I turned it off.  I just loved her.  I don't know this baby and I sat with her for almost an hour and poured as much love as I could into her.  I decided in those moments of my brain wandering and judging that I wasn't focusing on her.  I have no idea what a baby can feel or realize at that age but I do know that I loved her as hard as I could for as long as I could.  Her little body was so relaxed in my arms and I hated to put her down to go get my own kids off the school bus.  I don't know if she will be there next week.  I will probably never see her again in my life but I won't ever forget her.  I can't wait to go back.  I learned my biggest lesson on day one.  I'm only there to love.  And, thats exactly what I intend to do.  My heart is back inside the NICU, this time - on the other side.  I'm so grateful for the opportunity.  Truly so grateful.

I have some other cool news…  
Children's Miracle Networks #1 National sponsor is Speedway.  Each year they have a child represent the CMN.  This year, Easton was asked to be it!  Sometime this summer you will begin to see his cute little face wherever you go!  He is over the moon excited to start seeing his face plastered around town and we are so excited for the opportunity to represent the Children's Miracle Network.  Such an honor!

Thanks for listening!