Super Z Update

Well unfortunately our site is not working as far as photos go which I’m so bummed about 🙁

Zayne is doing AMAZING!!!!  MRI was reviewed our surgeon in TX and he agrees that there is NO growth from the main tumor or the cyst!!!  So the surgery was a success!!!  There was one spot that showed up on the MRI that is a little more enhanced, so the docs will keep there eye on it.  But no matter what the MRI says we believe Zayne is doing great!! He is back in school and loving it!!!  He is working hard at learning Braille!! And is phenomenal at math!!  We are very excited to see him back and involved with his friends 🙂

We do have a little bad news though.  We have been going to therapy at ALIVE in Charlotte and have loved every minuet of it….but we have to move facilities for insurance reasons.  I don’t think we will find ANYONE like Jody Heisler 🙁  She made therapy so special for Zayne.  We were going there around Christmas time so she printed a letter from Santa to Zayne, postmarked the North Pole and all 🙂  She was always going above and beyond.  She took time to create a personal relationship with him and just made it fun!!  She has an amazing gift and we are beyond blessed to have been on the receiving end of it!!  So come next week we will start at Comprehensive in Jackson.  Fingers crossed we will fit right in.

He is still wearing a leg brace and will continue to until he is strong enough not to snap his knee.  He is working very hard at trying to move that left hand.  He can point his pointer finger out now (to bad I can’t show you a picture)  He is such a hard worker.  He gets frustrated easily but I think he knows he can do whatever he puts his mind to.  He has been asking a lot of questions lately.  “Why did I come out like this after this brain surgery?  Did they mess up?  How come I’m not normal?  How long before I am normal Mom?”  Crazy to hear that come out of my 6 Year olds mouth but we are doing our best to help him work through all the adjustments that are coming our way.  Ayden is incredible with him!!  We couldn’t be more pleased with how he has handled this whole thing.  Truly growing up!!

As always thankyou for your support!!!  We have been showed such kindness and always pay it forward when we can 🙂

To My Amazing School!!!

Yesterday I had the opportunity to stay in Ayden’s class while Jake took Zayne to therapy.  As I sat there I heard the hustle and bustle of all the kids coming in putting their coats and hats away and getting ready for a day of fun.  I looked to the front of the classroom and there Mrs. Halstead was, doing all the girls hair in crazy styles for Grinch day.  Out came the ribbon and by the time she was done she had a class full of smiling little Who-ville children!  Throughout the morning different teachers came in the class to do different fun “Games” with the kids.  I felt honored sitting there watching all this take place.  These teachers LOVE our kids!!  They LOVE what they do.

And today as I headed into the school to drop Ayden off for his last day before Christmas Break I found myself getting sappy and wishing I could bring a big Santa bag in full of goodies for all the teachers and staff that work so hard to make sure our kids are not only safe and educated but also feel special and encouraged.  As I walked by the office I see Jackie in there smiling to all who came through the door.  I head down the hallway and notice Mrs. Kidder’s room.  She is always smiling and has such a warmth about her.  I see Mrs. Chakowski’s and Mrs. Stoker’s room.  Both amazing teachers who care for our kids.  And Ayden’s teacher Mrs. Halstead is standing at her door in her pj’s greeting all the kids that come into her room with a big smile!!  It was PJ day today and Ayden wanted to bring his life-size Stich to class.  I asked Mrs. Halstead if it was ok, seeing how the stuffed animal was like having an extra kid in class.  She gave me a half grin and said “Of course it is!” I love how she gives the kids a chance to be a kid.  Ayden was beyond excited to bring his stuffed animal in and show the class. I kissed Ayden goodbye and headed toward the door.  I looked down to the kindergarten hallway.   I found myself thinking of Mrs. Wade, Mrs. Dickinson and my all time favorite Mrs. Smith.  What a rockin Kindergarten team!!  I wished I could get them something meaningful so they would know how much I, as a parent, appreciate EVERYTHING they do.  And as I walked out of the school this morning I prayed for God to bless each and every one of these amazing teachers and staff in a special way.  I truly appreciate how much they have done for me and my family!!  And that’s just my kids…..they have 20 more they take care of.  It just amazes me.  I hope they know they are the true super-heroes of today.  They spend their days teaching and growing our youngsters, making sure they get everything they need.  If they are behind in a subject they get them the help, they encourage them to be true to themselves and what they want to do and be.  They truly inspire and push our kids to succeed.  I just love this little town and the people that make it great!!!  Merry Christmas!!!

Super Z update

Super Z update

I’m so sorry it’s been so long since our last post.  I am sure everyone has been a little crazy with the holiday season approaching, or more like coming at mach 10 😀

Zayne has been doing amazing in PT!!   I feel like its been a rollercoaster with everything going on with him.  He has been quite happy these past few weeks though!!  It’s been great.  In fact, both my boys seem to be handling life pretty well at home.  Sometimes when the boys are playing I hear Aydens little voice say “Try with your left hand Zayne…you can do it.”  Or the other day when Ayden came up to me and said “Mom when we are wrestling I make sure I don’t use my left arm so it’s fair.”  My heart melts.  And then to watch Zayne in therapy!!  He really does a good job at pushing himself, don’t get me wrong he has his days where he doesn’t want to do it but when we get there his attitude stays pretty good.  I do have to give a shout to Jodi Heisler.

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She is a PTA at Alive and we have worked with her since day 1!!  Angie Bandy, a friend of mine and a physical therapist,  was amazing and met with me before we signed up at Alive.  She gave me Jodi’s name and told us she was great with kids, pushes them enough but also has fun and she was right!!

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Jodi has been phenomenal with him and how ironic that she is a Springportian at that!!  She knew all about super Z before we even got there.  She has scored in Zayne’s book and was even offered a ticket to Neverland with him J  She has heard a couple adventures of Neverland and was even told she wasn’t allowed to go on Sunday’s because they are closed. 😀

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His adorable imagination never ceases to amaze me!!  His leg is coming along nicely, we are dealing with pronation of the foot but I feel like that will bounce back quickly once we get the right foot brace.  His hand is making big improvements but is still very slow.  It’s funny because to get him to open his fingers is a good day, and there was a time I wouldn’t consider that progress but being in this situation now…that is PROGRESS!!!  It’s still very frustrating for him and to build legos takes a long time for him but he still does it.  His eye sight is not such good news.  Jake and I have noticed some major changes over these couple weeks and are trying to stay positive.

My emotions throughout it all have been up and down.  Everything is very overwhelming and yet I’m so thankful.  God is slowly speaking to me and I’m slowly allowing Him to thaw my heart.  It’s funny going through something like this.  Shakes you to your very core, and somedays you come out of it and you count your blessings and other days your curse the very faith that got you through the crisis.  I don’t know His mighty plan but I do know that my boys are loved.  And that is essentially all I want for them.  To KNOW they are loved!!  To know that Jake and I would walk with them through anything.

I am going to say things are very up and down right now in my mind, so I apologize now for the rollercoaster of blogs that may or may not be coming.  But once again thankyou to everyone who has given to the Go fund me….your support is overwhelming and so greatly appreciated.  A shout out to Chief Luce for making Zayne an honorary police officer.

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Zayne was GEEKED!!!  Has an official badge and everything 🙂  Ayden says “Um…can Zayne arrest people now?”  It was a lot of fun!!

Also a shout to Marks Place in Eaton Rapids for the fundraiser!!! It was wonderful seeing some of the faces that came in that day 🙂

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The support and love we have gotten from people is amazing and helps me know GOOD does win.  There may be a lot of evil in this world but GOOD will ALWAYS come out on top.

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Super Z update

“Mom….my head hurts.”  Zayne said as I kissed his forehead goodnight.  Fear gripped my heart so hard I had to mentally tell myself to breathe in.  “A headache? Again? Show me where buddy.”  He put his hand on the top of his head and said “All over here.”  Exactly where they were before brain surgery.  My brain hit mock 10.  I couldn’t help but let my mind go back to rehab.  I didn’t have to worry about anything there… cleaning, cooking, fixing lunches, catching up on bills.  I had one goal.  Get my kid walking.  So that’s what I focused on. Not saying it wasn’t hard but less plates in the air.  Now that we had been home for a small minute I found myself coming under the weight of all my responsibilities once again.  And this…the headaches…I wasn’t prepared for them on top of everything else.   Zayne’s anxiety level has been eye opening but I know with time and baby steps he will come out of it.  When he gets frustrated playing legos because his left hand doesn’t work at all I know with time he will get used to it and hopefully with a lot of time it will get better and better.  It’s all been an adjustment.  Good days of feeling blessed that I have my boy mentally, and days of feeling so bad for him not being able to do what he is used to doing.  UP and down…up and down.  I can handle these waves.  Headaches?  Not so much.   At first I just thought they were because he was fighting a cold.  Now, 3 weeks later,I have to realize they might be something more.   I gave him meds once again and put him to bed.   I wandered into the kitchen for a glass of water.  I started feeling the tension in my body.  My neck and shoulders felt as if they had been soldered together.   Life hit me full force the past few months.  I was just exhausted.  I was done.  I could feel myself getting bitter.   Bitter about how much my kid had to go through, wondering if we went through all this and are STILL going through all this for nothing.  Why go through surgery, in-patient rehab, out-patient rehab to STILL have headaches.  I found myself discussing this with God.  And I wasn’t very happy.  I find myself questioning what the point is.  Everyone has their beliefs and I also have mine, but I hear my own voice in my head dripping with anger…..Why?

A friend of mine told me a long time ago to demand God show up.  And I can’t help but wonder… does it help?  If He has this almighty plan all laid out what good does it do if I beg and plead?  So why do it?  I do know there is something that happens when I begin to plead with God.  My guard is let down.  I become vulnerable.  I become raw.  And like it or not there is a transforming that takes place in that raw state.  I cease to take control and by doing that I somehow accept.  Accept what is and the role I play in it all.  So there I was…trying to let go.  Pleading….asking Him to show me that I truly heard Him and I didn’t make a huge mistake of going to TX.  I’m tired of being here.  I’m tired of being exhausted.  I’m tired of trying to find a fix.  I’m tired.  I’m just tired.  Show me what I’m fighting for.  Show me there is a victory. 

The next morning we went to church for the first time since surgery.  It was wonderful getting all the hugs we did and just feeling all the people.  My church has got to be one of the warmest churches I’ve ever attended.  I found myself sitting in-between my boys listening to the worship and quietly singing these words  “You give life, You give hope, you bring light to darkness, You restore every heart that is broken.”  And the bitterness seeped into heart.  I could feel it.  And as quick as it comes I remind myself to focus on the joy and how blessed I am to simply KNOW and have a relationship with God.  How blessed I am to be surrounded by people who love me and are praying constantly for my family.  How blessed I am that my son is right next to me and I didn’t have to say goodbye that day of surgery.  I have NOTHING to complain about.  And yet I find myself wanting to be passive aggressive with God and give him the cold shoulder.  I feel if He would just communicate with me, be open with me I would feel better about our walk.  Deep down I know I will never walk away from God, I know I don’t want to .  But right now I feel hurt by Him.  I feel like He’s asked me to be this mom without FULLY equipping me for it.  And yet I almost don’t want to admit that I feel like this because my son is HERE.  He is still Zayne.  I can still LOVE him and HOLD him and WATCH him grow.  This war rages within me and Im ashamed to admit it, wanting to ask grace from people who really know what goes on in my head but maybe….I’m the one I need grace from.  God surely doesn’t care if I get mad at him and yell…it’s not like he didn’t make me this way….maybe it’s the fact that I’m letting myself down by having a weakness I don’t like.  A weakness of not appreciating what I have and wishing things were different.  I told my mom of the feelings I was having and how I felt like I was just throwing this pity party and if God would just answer my questions I might feel better and she simply said “Sweetie don’t forget that even when your kids are throwing a fit you have to wait for them to be DONE throwing the fit for them to HEAR you.”

I know I have asked alot throughout this journey and I am so thankful for all the support 🙂  We truly feel it, and I’m sorry if I sound selfish and ungrateful. We are truly blessed and we know that….please don’t misunderstand.

I will trust in You

“The days of the past few weeks have been nothing short of a roller coaster of emotions.  Days of peace soon followed by the plummet to distress.  We have been though war and it feels as though we are outnumbered.  We experience miracles of success only to be followed by, what seems ambush and defeat.  As my mind takes a moment to slow from the busy task oriented day, it leaves just enough space for the fear to rush in once again.  Tonight I truly fear God is not aware of my pain threshold and I begin to wonder just how far he will push me.  With the remnants of insanity still lurking in the doorway of my thoughts, I fear how easily they could return.  I don’t have this faith that God will protect me, I find myself more wrapped in the fear of what he will allow next, and the question of, will that be the moment that pushes me over the edge.”

 

I wrote this about 2 weeks ago, in a tough moment.  I am still riding the roller coaster, learning how to accept and combat a level of anxiety that is new to me.  I found myself questioning God more than I ever have.  This experience has made me wonder how I could even let the divorce of my parents send me into a depression years ago.   This challenge with Zayne makes THAT challenge seem like “Jamie why were you such a whiner.”  It’s similar to the eye-opener I experienced after I began chasing my fourth kid around. It was then I wondered how I ever thought ONE kid was a challenge.   I just look at parents with one toddler and I just have to grin when they look a little frazzled, and giggle to myself, “Oh just wait till you have a 4-year-old, a 2 year-old and a baby on the hip.”  And for those that don’t dive into the world of four kids, well maybe you can write a book on how nice sanity is and I can put that on my list of fictions to read. I digress… as most of you have noticed, humor, is something Jess and I both lean on to carry us though.  They say laughter is good medicine, and I would have to agree.

Anyway, this challenge, has brought me to my knees, made me feel the most broken and weak I have ever felt.  For most of my life I have found comfort in trusting God.  I have always felt his presence to be a protective feeling.   But I must admit, this past month I have been afraid of what else we will have to endure.  My thoughts bouncing back and forth between,  Jamie, get a grip, there are people who have been through so much worse than you and Oh please God, protect my family, I fear my heart can’t bear anymore pain.   I found myself literally so petrified of what might be around the bend it was debilitating.

As I have worked through the past few weeks, I find myself clinging to the song I have placed below.  I will trust in you.  I am still scared, and I would like to tell you that I cling to my faith because I love God that much, or I know he loves me, or because that’s how strong my faith is.  NOPE.  It’s because right now the alternative of not having faith, not having a God who does care, is actually scarier.  I hope my candor doesn’t offend anyone, I truly don’t mean to.  And if you have never had your faith diminish to such a level, then I am happy for you.  But please, give me grace and allow me the moment to reach out to those who have felt like a feel.   I want to say to those that have been in this same boat that It’s ok.  I truly believe it’s ok.  I will hang on to this song because that is what I CHOOSE.  Because that is what I WANT to hope.   I told God the other day that I don’t  feel guilty for questioning him, because I know it is in those moments of doubt that I challenge myself to see who He REALLY is.  It is in those moments of doubt that I push the envelope, think outside of the box and demand he show me his power.   It is in those moments I grow, because I am DESPARATE for it.  I may throw my fit like a two year old in the middle of the mall wondering why I can’t ride Charlies Choo Choo train around the mall hall way, but when I am done, I dig, and dig and dig for more.   So for those of you who have those moments of why have faith? I get it.   I just soooooo get it!!!   And to you, all I can say is, keep asking him, keep listening for him, and keep looking for those moments of evidence that he is there.   And most of all dig deep for the power he has placed within YOU!!!!  You may dig it out one speck of gold at a time, but there is more.

Super Z update

Well Super Z is home!!!!  🙂  It has been up and down for the passed 2 weeks.  We are having alot of trouble with his brace that helps his knee not hyper-extend.  We got home from another adventure at Mary Free Bed.

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We stayed the night in hopes to get it all tweeked before we came home.  I’m hoping this one will be amazing and work like a charm.  Other than that we are trying to adjust to life!  He’s doing amazing!!

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He knows he has a lot of work to do to get back to school and just being independent but if I say anything about my kid its that nothing usually stops him!!  He is dealing with some anxiety.  Jake and I have both noticed some changes in his vision.  Not sure what we are up against seeing how the ophthalmologist said everything looks the same on his end.  Mary Free Bed did tell us that it takes a good 18 months for a brain injury to heal so we are hoping things balance out after a bit.

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Other than that things are going pretty well here on the homefront.  Our plans to build a house have been placed on hold, but I am so thankful we live with my mom 🙂  Just easier having family around.  And having my sis and Michael across the way is amazing!!   I dove back into coaching cheerleading!!  My girls are simply amazing!!  I don’t think I could have asked for a more hard working, patient group of high school girls EVER!!!  Jake is diving back into work and Ayden….well Ayden is one of a kind.  That kid has grown up over night. I’m so thankful to his teacher Mrs. Halstead and the amazing staff of the elementary for taking him under their wing.  He is so incredible and has dealt with these huge life changes beautifully!! He is so protective of Zayne, its amazing to watch him take care of him!!

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The past month almost feels like a blurr…..So many emotions, so many ups, and so many downs.  I will do my best to get to blogging in-between being a mom and therapy!!  As always THANKYOU to all of you!!!!  Without your support we just WOULD NOT be who we are!!!  Your support has not only lifted us when we needed it most but it has helped Jake and I stay positive.  I know we aren’t ALWAYS positive people but having the support we have has made going through this journey a little easier!!

Big Z goes HOME!!!!!

My Boy has made such exceptional progress we are looking at getting out of here in 3-6 days!!!!  GAHHHHH!!!!!  You have no idea how excited our family is!! We thought is was gonna be longer but nope!!! Now don’t get me wrong things are how I want them to be but we have LOTS of outpatient therapy to cover that.  Still gonna be a long road but PRAISE GOD there is a light at the end of the tunnel!!!!

Brain surgery day 6 – Zayne

I woke up and looked at the clock.  A little after 8am.  Thank God I slept in.  My husband was amazing and spent the night at the hospital with Zayne so I could play catch up from sleeping on the couch and chair since the ICU.  I pushed start on the coffee pot I was able to get ready the night before and opened up the front door of the hotel.  I looked out over the pool and let the warm sun sink into my soul.  The hospital had drained me.  The news had drained me and watching my boy in pain drained me.  I started to feel the emotion, I was warring with myself.  I struggled going back up to the hospital and yet I struggled not having the energy to be there for my son.  I don’t wanna go back.  I’m not ready.  I wanna bring my boy back here and swim, let him enjoy the Texas sun.  I want to go to my in-laws and play at the park.  I want to go see my cousin’s new baby and watch the boys play in the yard with their cousins.  My plans had been changed so drastically.  And thinking of having to go back in to that hospital was almost more than I could handle at that moment.  I grabbed a cup of coffee and asked Reba if she could keep an eye on Ayden while I snuck down to the pool.  He was still sleeping and I just needed to turn off for a moment.  I headed down and found a cozy spot.  The sun was hot and I was thankful to feel the beads of sweat start forming on my skin.  I loved listening to the birds.  Everything I saw as normal became so big to me in this moment.  I called my dad.  “Dad?  I’m so overwhelmed.”  I began crying.  “I feel like it’s never gonna end.  I feel bad he can’t go home.  He just keeps crying to go home.  He’s so done.  And he’s gonna lose it when I tell him we are going to a different hospital.  I don’t wanna do this.”  It’s never easy for my dad to see or hear his girls cry.  As a dad he was built to fix things.  Beat up bad guys and make sure we married a man that would protect us the way he does.  So this for my dad was as much of a learning curve as it was for me.  “I know kiddo, but your almost there.”  I took in a big breath “I don’t feel almost there, I feel like we are just beginning and who knows how long we will be on this journey.  It seems endless.  If it were me that couldn’t walk I would understand what it would take to do the work.  He’s 6 Dad.  He just wants to play…to ride his new bike….to swim.  He doesn’t understand and I don’t know how to help him.”  I heard my dads shoulders sink a little.  “What can I do for you honey?”  I put my head in my hands, “Nothing….nobody can do anything.”  “You’ll be ok Jessie, you were made for this.  I think you’ll be surprised how hard he does work.  I think we all will.”  I knew it was killing him that he wasn’t there with me.  He had gone home the day before, and it has never been harder to watch my dad leave.  He kept asking “Do you want me to stay?”  But I knew he was tired, heck we are all tired. And there was nothing else he could do for me here.  After hanging up the phone with him, I went inside and called the lady at Mary Free Bed rehab center in Michigan and through talking to her realized we are not allowed to go stay one night with my in-laws before leaving Texas. Or a night at home…we have to go straight from the hospital here to the airport to the rehab center.  “Sweetie, if you don’t come straight here the insurance will say you are not an acute enough case for us to take you.”  I stood there on the phone.  “What if they discharge us Friday?” I asked knowing Mary Free Bed couldn’t get us in til Monday.  “Well then you would have to stay in the hospital anyway and then come here.  If you go anywhere else we will not be able to accept you. Do you understand?”  I had to take a second.  After talking with her a little more I hung up the phone and looked at Reba.  “When will my second wind kick in again?” I asked feeling defeated and in tears.  She looked at me completely understanding where I was at in that exact moment and said “It will Baby, I promise.”  After figuring out we had to find flights that would get us there before 4 in Grand Rapids I started to panic again.  I didn’t know how we were going to work everything out.  Zayne was still having headaches so I was worried about flying, and if we were to ever get them under control without the use of narcotics.   I just feel like I don’t know what to expect. It is beyond overwhelming and I see a lot of sleepless nights ahead….and I’m so tired.  I’m ready to punch out but then I can’t help but think, I can’t…I’m the mom.  I’m not on the outside of this one.  My sister got me something before she left.  It’s a beautiful decorated board that has the saying “With brave wings, she flies.”  I will post a picture later but I’m so happy she got that.  It reminds me how strong I am.  How strong my wings really are.  And how I am transforming everyday.  This is a new journey for us but this is the journey God obviously wanted us to take. I got to the hospital a little later and got a phone call from the case worker letting me know she pulled some strings and the rehab center was allowing us to spend the night at a hotel and fly out in the morning.  I was elated!!  That meant we were able to go back to my in-laws, have a home cooked meal, and sleep in a bed I was used to.  I got off the phone and told Reba, the whole feeling in the room changed.  We were granted one night of halfway normal before we dove into hard work at rehab.   The doctor came in a little bit after that.

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He looked over Zayne and said “When do you want to leave?”  I was a little taken off guard.  “He looks great and he needs to get into rehab.  What day would be best for you?”  I looked over at Reba…”Um…. Today?”  The surgeon grabbed his phone and said “Ok….I’ll make it happen.”  After that things started falling into place left and right.  My dad called me and said he was working on getting the private jet from his company to fly us home so we wouldn’t have to worry about the airports with Zayne in a wheelchair.  I quickly called Jake who was sleeping at the hotel and said “See if you can check out right now and get our money for tonight…they are discharging us today.”  I knew I had woken him up when I heard his voice.  “Wow…ok..I’ll see what I can do.”  I also told him of all the amazing news I had gotten so far.  He was as excited as I was.  Everything seemed to be running a little more smooth.  Then my dad called.  “Jessie, I got the jet.”  I almost jumped up and down.  Talk about a weight lifted from my shoulders!!!  For the first time in a while things looked up.  Even if it was for 1 day.  It was the calm in the storm I needed.  And if that wasn’t enough my dad called and said he talked to delta and they were so incredible, they refunded the tickets I bought for the way home AND the hotel let Jake quickly pack up the room so we wouldn’t have to pay for that night. I was beside myself.  God was giving me blessings left and right.  I called my mother-in-law and told her we were coming home for dinner!  Her voice on the other end made it all come together.  I could almost feel her through the phone.  Our relationship has become so special over the past couple years, and I felt our hearts connect mother to mother knowing how much this night meant to both of us.  We hugged the nurses goodbye and everyone was sad to see us go.  Zayne, while not in pain, was his entertaining self.  We got loaded up into the truck at 5:30pm.  Perfect time to sit in traffic for an hour bumper to bumper but I guess God wanted to cut us a break from that as well cause we sailed through and made it in time as if there wasn’t any traffic!!  We walked in to her cozy home to the smell of a homecooked meal! It was gonna be a good night.

We woke up early the next morning and I knew it was go time.  No more time to wish, hope or long for something different.  Time to get to work and for me that meant gearing up for the weeks ahead.  Not thinking about going home, not thinking about wishing life was normal.  Understanding the job before me.  To support my boy.  To push my boy.  To balance Ayden and regular life…And to give lots of snuggles when I can.  We had to be at the private airport at 8:30 that morning.  After a crazy morning of getting things around we loaded up and I looked back at the beautiful cozy house I had spent so much time at.  My in-laws were moving.  I probably wouldn’t come back to this house and I was gonna miss it. It had been a safe haven for so long.  The warmth I felt every time visiting.  I knew it wasn’t so much the house as it was looking at fingerprints of my in-laws and bumps in the road we moved passed together with every visit with news on Zayne.  So many memories.

Heading out I knew I had to pull it together.  Make the trip home and get to work.  It was weird not having as much family around me.  It was just Reba and my little family.  I was thankful Reba was coming.  I just needed extra support these days.  We pulled up to the airport and my chest squeezed tight… then I saw my dad round the corner.  He didn’t tell me he was coming and I felt myself breathe!   I chastised myself for thinking he wouldn’t fly down with them.  He’s my dad…of course he is gonna be here for me as much as he can.  He knew I needed him, and when he knows that…NOTHING stops him.  We walked out to the plane and my mother-in-law started passing out hugs.  She got to me and I squeezed her tight.  “Please keep everyone praying for us.  We need that.  Don’t let them forget us.”  I said through tears as I didn’t want to let her go,  “We will Jess, I promise we will keep praying.”  We both cried and I boarded the plane.  I saw her standing there while we flew away.  That was a hard moment.  On the flight home I got to watch my dad take care of Zayne.  Giving him snacks, making sure he was comfortable, putting a blanket on him.  It took me back to my childhood.  As I sat there knowing the task ahead of me I told myself to soak up this moment.  Watching Jake and Ayden laugh together, watching my dad sneak Zayne oreos, and sitting next to Reba, a woman who had walked the same moments I was now walking.  The support I felt from all of them without them even realizing was something I will forever cherish.

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Day 3 Brain surgery-super Z

I heard the nurse walk into our room.   It was a little past 3am.   I looked over and saw my sister sleeping on the couch.  The nurse was grabbing vitals.  I was in the bed with Zayne hoping he didn’t wake up.  The headaches continued and they were worse than 3 years ago.  They came on so quick and were so intense.  But if I could keep him sleeping I knew they would stay away for a bit.  I tried to get my focus and looked over at Zayne.  His eyes were open and he just stared straight ahead.  He had been doing this since surgery and I was just waiting for these spells to go away.  They are spooky and messed with my mind and my strength.   “Zayne.”  I rubbed his arm waiting for him to respond.  “Zayner..can you look at mom?”  He stared straight ahead blinking every so often.   “ZAYNE.”  I called his name louder.  “Buddy answer me.”  I held back the tears and told myself to believe he IS ok. I lightly shook his little shoulders,  “Zayne…talk to mom.”  I said as I snapped my fingers in front of his face.  My stomach yelled at me with acid pain.  I knew it was nerves.  Jamie and I discussed how we had both been living off tums and needed to get more.   The nurse was watching me.  “Is this not normal for him?”  I looked at her through tears that I REFUSED to let fall and shook my head no.  “Ok…I don’t feel comfortable about that.  I’m gonna call the neuro on call and get them to take a look.”  The on call doctor came in by the time it was over and gave him the green light.  In the ICU he was doing it and they ordered an emergency CT and EEG.  Everything came back normal.  I was glad it did but it left lots of questions in our minds.   In all the ruckus my sister woke up and was watching everything that happened.  I looked over at her and when our eyes met the fear was real.  And the fear was strong.  I tried to refocus. Tried to close my eyes and not think about anything.   We fell back asleep for a little while.  I woke up to the nurse again but this time it was light out.  I looked over and saw the couch empty.  “Do you know where my sister went?”  She looked at me and said “Yea she told me to let you know she was getting some tums from the pharmacy.”  I looked over at my sleeping boy and carefully tried to crawl out of bed without waking him.  It was a rough night.  To many scary thoughts to think about.  I could my mind on the verge of something I’d never felt before.  I was starting to relate with people who just lose it.  Lose their mind for a little bit.  It’s like you are watching your insanity walk away from you and darkness wraps around you making you think there is no hope in the peace you seek.   My stomach was shooting with pain.  The pain started the first night after surgery and my mom was staying the night with me making me drink lots of fluids and putting a cold cloth on my head.  I loved the way she was taking care of me and just wished I could take care of my boy the same.   Reba walked through the door with Jake.  It was so refreshing seeing family.  Fresh from rest, ready to battle with me.  However, Reba’s face told me different and I immediately thought of my sister.  “Where’s Jamie?” I asked her quietly.  She wasn’t supposed to say but knew I needed to know.  I saw her struggle.  “What is going on?  Tell me.”  She told me to go out in to the lobby and prepared me that she was in rough shape.  Jake and I walked out while Reba sat with our sleeping Zayne.  I felt as though with every step I took my anger became greater.  Jamie and I have a way of pulling each other out of the trenches and  if I would have gotten to her sooner she probably wouldn’t be as bad as they described.  We walked out the double doors and saw my mom.  I approached with a wave of anger.  “Where is she?  And don’t lie to me.”  My moms face was so strong, yet so sad.  She was amazing actually.  She has seen me in so many colors and has always loved me through all of them.  And this time was no different.   “Where is she?”  She put her hand on my arm and said “she doesn’t want you to see her like this.  So be sensitive.”  I pressed my lips together firmly while thinking of what I was going to DO to my sister when I saw her.  “I’ll be nice mom…don’t worry.  Just let me talk to her, I can fix her.”  Mom pointed to a hallway and Jake and I walked over to it.  Jamie was on the floor leaning her head back against the wall, almost trying to calm her breathing down.  She looked like hell.  I felt awful.  I ran over to her wrapped her in a hug.  “You’re not supposed to be here, you’re not supposed to see me like this.”  Hearing what she was saying let me know my sister was still in there and the anger came back.  I pulled away from her and said very abrasively “JAMIE, get up.  Get up now. GET UP.”  I said as I pulled her away from the wall.  “Listen to me, you better snap out of this, so help me…”  I could feel sisterly love coming out.  “I can’t, I’m sorry I’m not here for you, I’m sorry.”  I breathed quicker trying to get her up with Jakes help.  “You’re gonna be sorry.”  She was barley opening her eyes.  “Don’t be mad Jessie, You can’t be mad at me.”  She was like a pile of goo.  When I couldn’t get her up I pushed her shoulder against the wall and lack of control I had was fueling me anger.  Jake held one side of her and was talking so sweetly.  “She’s not mad at you, your ok Jamie.  Your ok.”  As he gave me a look that told me to get a hold of myself.  I ignored his warnings and looked straight at her.  “JAMIE…” I tried making her look at me and then I got the notion that maybe with one good pop across the face might bring her back to reality. I pulled my hand back as I said her name again.  “JESS!”  Jake looked at me and grabbed my hand.  “What?  She’ll live.”  My husband was rolling his eyes as he pulled her to her feet.  “Ugh…” I growled thinking if everyone just let me deal with her she would be fine.  We walked her down the hallway to a room with a bed for people needing to get good sleep at the hospital.  He sat her down gently on the bed and I, not so gently, took off her shoes.  I began stuffing her pillow into a fresh pillow case.  She sat there watching me as if she was drugged.  “You’re mad.”  I huffed “Of course I’m mad.  Now shut your trap and get in bed and DO NOT get out of bed until I tell you to.  Do you understand what I’m saying to you?”  She looked at me and then looked over at mom.  “Mom….she’s so mean.”  She whispered as if I couldn’t hear her.  I rolled my eyes, looked at mom and said “Do you have this?”  Mom so patiently looked at me and smiled to sweetly knowing the relationship Jamie and I have.  “Yes honey, I got this.  I won’t leave until she’s sleeping.”  She winked at me and I hugged her.  “Thanks Mom.”  I don’t know if she felt everything I meant in those 2 words but it felt good saying it.  Jake and I went down to the cafeteria.  He was so confused as to why Jamie was a mess and I began telling him of the spells Zayne had throughout the night.  His face showed lines of worry.  We saw Dad at the cafeteria as well.  I couldn’t really eat anything so I told Jake I was gonna go outside for some fresh air.  So he stayed with my dad.  As I walked out of the hospital doors into the hot Texas sunshine I felt everything from the night, everything from my sister, and everything …EVERYTHING I had to carry with my son, and I broke.  I hit the ground sobbing.  And began talking to God like I do.  You told me you would be here.  SHOW UP.  I can’t do this on my own.  I’m gonna lose it, I’m gonna lose it.  I feel like there aren’t enough of us, I need help, I need support.  Don’t take my son away.  We made a deal before surgery, if he wasn’t going to be Zayne inside there then just take, if this is who he is now….if things are just going to go downhill….Don’t take my son away.  Please.  Please…..I don’t know what to say….I don’t know how his story plays out but I’ll handle anything I have to as long as he is still my Zayne.  My fun, spirited, sweet, loving little boy.  Please….Please.  The song ‘Angel Armies’ Popped in my head.  And I immediately realized it was Sunday.  My whole church was gathered together.  My body got chills as I began calling all of my friends…no one picked up but Fran called me back within seconds.  I picked up my phone  “Fran….Fran…”  “Yes I’m here.”  I was crying so hard people walked by staring at me.  “Are you still at church?”  I held my breath hoping she would say what I wanted to hear.  “Yes”  My heart got a zing.  “Please, Please go to Pastor Shane, stop the service and pray for my son right now.  We need prayer right now, right now….Please Fran Please… “  I was sobbing at this point but still drawing so much strength from the fact that I got through to someone.  It was like in a movie that seemed hopeless and then a second, fresh army shows up for battle in the time that the good guys were about to lose.  And with that army comes a new wind of hope.  Hope that we will prevail.  “Yes….YES I WILL!”  If I know anything about Fran it’s that she is not afraid to make a scene and interrupt legalities when God moves.  I know my message was in good hands.  And I could almost feel my sanity come back.  I texted some other family members as well.  Some in Texas, Ohio, Tennessee and all over Michigan.  After about 5 min I received texts from my friends at my church with picture of the whole congregation up at the front for my boy.  I felt breath come into my lungs knowing he was so covered.  Toward the end of the hour I heard that over 15 churches stopped service and raised my boy up.  Tears fell from my face at that act of GOD.  I needed it and drew so much strength.  I could feel everyone standing in the gap for my family.  We were to tired to fight….but when we realized we didn’t fight alone…we got our second wind.  And that was the beginning of good days ahead.

And then I was weak…

(We have a couple more blogs of flashback to get caught up on. Zaynes Rehab updates and videos will be posted Saturday.  Hang tight, he is doing good, improving every day.  Keep the prayers coming. Thanks so much for all your support)

 

We left the ICU and as we headed to the other wing of the floor, I couldn’t help but feel my heart sink as we passed the room we were in just a year and a half ago, the very room my Jess and I wrote the magical blog of our great news!  That was when the doctor was surprised at how much of that tumor he removed.  I can still hear his words echo through the halls.  “I may not see you guys for many years if ever again, this is exciting.”  The memory, so vivid, had a sting to it as I rounded the corner to the room Zayne was in this time.

Take a breath Jamie. Stay present.  We will get through this too.  I shoved back the tears, lifted my chin, and went to see the boy.  I did not have time for disappointment or the exhaustion that kept knocking at my door.

That night, when Zayne fell asleep, my sister and I sat in our jammies, on the little couch in the room giggling with each other, grasping a moment that felt normal.  Sure we shoulda been sleeping.  But both our nerves were shot.   One of our giggles must have woke the kid, because his cute little troll voice, with a lisp, said, “Mom, I am so thirsty.”  Jess, grabbed the water and made small talk with Zayne.  And after about 15 minutes Zayne slipped into one of his Zone out moments.  He had been doing this since ICU and it was a bit concerning because no one could seem to explain it.  He would just stare at you.

“Zayne, Zayne.” Jess said with a snap of her fingers trying to get a response.  And then moments later he would come back.  His nurse couldn’t explain it, so she called for a neuro consult.  It was quite unnerving when no one could say…”Oh yeah, this happens after brain surgery, or yes this is a side effect of morphine.”  Time passed, neuro came in and said he looked good at the moment, but they would run further tests tomorrow.  He attributed it to Zayne’s lack of sleep.

Finally, Jess and I drifted off and gained a couple hours of rest, I awoke to the snap of Jess’ fingers. “Zayne, Zayne.  Honey why aren’t you answering me?”  I sat up, my stomach churned, there weren’t enough Tums in the hospital to settle my stomach these days.  I told jess I was headed to find more tums, and I left the room.  I could feel my walls caving in.  Stay strong Jamie.  I pleaded with myself.  Your sister doesn’t need to hold you up, you have to hold her up.  Over the years, my sister and I have taken turns holding the other up.  When I crumbled during my parents divorce, she was right by me. And  I had managed to be kick butt strong for the past 3 years with Zaynes health, so seriously, Jamie, get it together! I scolded myself once more.   As I walked by the nurses station with tears rolling down my face I could feel fear rush in like a gust of wind just came busting through the hall way doors.  It swirled like a tornado around my body.  I was sure the hallway was shrinking.  “Are you ok.” Said a voice seeming so in the distance.  “I’m not cut out for this, I’m not cut out for this.”  I muttered. My back it the wall and to the floor I slid.  In a heap I just cried.  The fear was so strong it took my breath away and insanity was seeping in through the crevasses of my weakness.  For a moment, I really thought they might take me to psych.  It wasn’t pretty.

The nurses escorted me to a little room with a couch.  “Please don’t tell my sister, I don’t want her to worry.  Just tell her I went downstairs for Tums.”  I pleaded with the nurse.  She assured me she wouldn’t tell, and that she just checked on her and both of them fell back to sleep.  I called Michael, never mind it was 4:30 in the morning.  I cried and I talked, and cried some more.  “I can feel the crazy coming babe.  I feel so weak this time.” He settled me down, like he always does, he is my rock, and after I hung up from him I pulled up my playlist and played a few songs.  It was in this moment, I asked my angel to show up,(in a previous blog).  Once I calmed I went back to the room to sleep.  I selected a song on my playlist, and  “Not over yet” by king and country began to play.  That’s weird I thought.  That wasn’t what I chose.  As I looked at my playlist to see if “not over yet” was above or below the song I chose, and it was nowhere near it, it wasn’t even on the screen, available for me to bump.  I smiled and knew God was sending me encouragement.

After just nodding off, I awoke to the sound of Jess snapping her fingers again.  “Zayne, Zayne.  Answer me honey.  Are you in pain?  Do you need a drink?  ZAYNE!  Answer me”.She said with volume and urgency.  And just like that, my calm had vanished, a CRAZY came with a VENGENCE.

I headed down the halls to the double doors, hoping my mom and Reba would be here soon.  As the double doors at the end of the hall opened I saw them checking in at the waiting room desk.  It was all I could do to make it the last 10 steps, and in the floor I went.  Reba just laid her whole body over me as I sobbed.  Her tight hold was calming, but I couldn’t stop uttering, I am so weak.  I am so weak.  I am just so weak.  I don’t know if I can carry this.  In that moment, my mustard seed was gone.  As a kid, I used to cry and hang my head over a trash can nauseous, because Jess screamed whenever we got our shots.  Seriously, at 6 I could not handle watching her in pain. My fears had begun racing into the future.  I kept seeing Zayne in a bed, just staring at us.  No giggles, no hugs, nothing!  And as the fear raged, reality kept dimming.  In that moment my strength was gone, and I felt weak.