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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