Reflections on Mother's Day

  So today~or yesterday now~was Mother's Day. I'd been dreading MD for, well, ever since last Mother's Day I guess.  May in general is just really impossible for me.  The hardest month of all time.  Because not only is it Mother's Day, the day we celebrate being a mother and our kids, supreme happiness and pride with our offspring, I am reminded that Mother's Day is the day I found out my son was dying....and he did, a week later.  So yeah, Mother's Day will be a hard one for me, maybe for a while, and maybe forever. I'm not sure yet because I don't know how all this works or will play out.  All I know was today was horrible.  It sucked on many levels.  Instead of waking up pumped like I used to, hearing laughter and giggling and being surrounded by my kids giving me homemade cards and hugs with their morning breath kisses, I woke up and felt my stomach drop out and thought, "Oh man, it's here. Dang it, it is actually here. How is this possible??" And, I wanted to throw up.  So, when my boys came in and kissed me, I hugged and kissed them back and forced a smile at them and tried to really look at their amazing faces and be grateful, but as soon as they left the room for Daddy to go feed them breakfast, I turned over and hugged my littlest dead son's stuffed Flat-a-Pat puppy which never left his side in the PICU for 5 months, and slept for another hour...wishing miraculously that when I awoke that some weird freak time warp would have taken place and now it was officially June.  But, well, it wasn't.


  Church today wasn't an option...because when the heaviness and sadness are bearing down so forcibly that you feel like every step takes concentration, you definitely can't go be around hundreds of other people celebrating the best holiday of the year...Because who doesn't love Mother's Day?? I knew I couldn't hold myself up as I walked in, bare to give any of my friends or acquaintances any eye contact, and I was even more doubtful whether I could brave the praise music or sermon without dissolving into wracking sobs which would interrupt the service and probably everyone in there's peace of mind. So, I stayed home where I felt safe.

  Yeah, I was at church last year.  Reflecting back to last year, I'm not sure why I even went. It makes absolutely no sense to me now, and part of me really regrets it.  In my heart I wish I had raced back to the PICU to spend that entire day with my beautiful boy,  but instead I dragged myself to church like a zombie with Evan in tow.  I think I was just in shock.  See, last year, I came home from the hospital on Saturday night, the night before MD. I'd spent Friday and most of Saturday with my boys in St. Pete.  Randall had come down with the boys, and we'd spent time with Gray, then we headed out for a couple hours on Saturday to Mazzaro's Italian Market and then for about an hour little jaunt over to Fort De Soto Beach.  The health situation with Gray was pretty grave by that point....so I was a complete zombie, averaging about 4-5 hours of sleep every night....and well, had been for months. I was running on adrenaline many days, with his health being so up in the air.  I hated even leaving him for 2 hrs, yet mentally and emotionally,  I took Randall's advice and on Saturday night I drove the 2 hours home from the hospital with Evan to spend the night in our home and go to church the next morning, and hopefully return on Monday after getting a little bit more rest and maybe taking Evan to the park or movie or possibly out to eat...something normal.  Living in an ICU for months on end had made me so out of touch with reality and the world around me that I often in my mind referred to my weekends home as "time to de-frag", or put the pieces back together for a minute, so-to-speak.  I always left Gray in the hands of Randall, and usually one of his brothers, so I was at peace knowing my boy had the best company, care, and love in my absence.  It still killed me every time I drove away, because I always prayed as I left that when I came back he'd still be alive.  I hated the fact that all of us were separated all the time.

  Anyways...rabbit trailing....I drove home on Saturday night.  I was exhausted on all fronts and my hope had long since been completely trampled and shaken to the core.  I felt like we were in a waiting game with Gray.  Waiting for him to get better, or waiting for the next shoe to drop.  And, Gray usually had the habit of dropping shoes at least every other week....Another surgery, another de-sat,  another blood pressure issue or lack of pulses in his extremities scare.....It was always something with Gray and his little bod never cooperated or played by the rules. He did things HIS way.  After I got home and got in my jammies and was in the bathroom getting ready for bed,  I got a call from Randall.  He told me his dialysis was not draining at all and they weren't pulling hardly any fluid off of him.  My heart sank so low....for over a month his dialysis wasn't working well at all. The nurses would fill him and drain him every 20-30 minutes or so to pull off more fluid, but when he was set to drain, the fluid would drip out so slowly that the nurses had to pump his legs up and down, up into his stomach to get out even what was put into him.  They called it "baby yoga" and they would turn his body from side to side in hopes of getting more fluid off.  It was terrible.  I would hold him for 20 min at a time, when he wasn't intubated, but would then hafta hand him back to the nurses so they could put him in his crib and pump his legs for nearly 20 minutes straight just to get off the fluid. This was 24 hours a day like this for weeks.....weeks.  So yeah, things were looking grim. I knew this. We knew this.  The nurses knew this.    The doctors knew this.  I looked at his nurses as my heros, like his 2nd mothers really.  They did all this for Gray, for our boy, for us, so we could have time with him.  They did this so he could LIVE.  Because after a couple of positive dialysis cycles, you were supposed to call his nephrologists who would then walk them through a few things to check to make sure his lines were clear....if all measures had been taken, then surgery was the one and only option. Gray had had 5 or 6 surgeries already to fix his dialysis catheter, and the last surgery we had to beg them to do.  There were no surgeries left to do......We'd always hoped that the next surgery would be the kicker, the one that worked...and a couple of them DID work, but, not for nearly as long as he needed....

  So, when Randall called me, I remember I didn't say much. I asked him what the plan was, and he told me he told the nurses and docs to continue on with the dialysis overnight and they'd re-dicuss in the morning.  He had a new nurse that night, so I thought, well, maybe she didn't know all the tricks to getting Gray to drain, but Randall informed me he'd sat there with her doing everything he knew to do on him, what the other nurses did every cycle, and nothing was working. Nothing.  So, I went to bed, knowing that the call in the morning probably wouldn't be a good one.

  Randall called me in the morning.  I'd already gotten Evan ready for church and I was finishing up getting ready myself.  I don't know why I got ready but I had.  I'm not sure if it was denial, or just functioning out of a pure zombie-like reality, or pretending it was like any other year attending church with my family, but there I was getting ready.  Randall told me something like, "We're done.  They're shutting his dialysis off.  We're done."  I don't remember much after that, except Randall asked me what I was going to do, and I said I was going to church and then I'd come down to the hospital later.  I drove to church, crying the whole way, with Evan in the back.  I don't remember if I told him anything or not.  I dropped Evan off at Sunday school and when a friend asked me how I was and gave me a hug, I broke down completely, saying, "We're done. There's nothing left. It's over. It's over."  Thankfully I was late to church so no one else was around, or at least from what I remember.  I went into the service after that somehow and sat alone.  I remember the pastor spotting me and asking me if I'd like to share.  He'd asked me a few weeks before and after considering it,  I'd said I couldn't handle it at that time.  I was under so much pressure and didn't even know if I could come home for a weekend with Gray being in the state he was.  He understood.  But when he saw me he asked me right there in the Mother's Day service, with hundreds in attendance...Would I come up and share how I was trusting God to get me through hard times?? I don't know why, but I nodded my head and dragged my shaking body up those 4 or 5 stairs and the pastor gave me a microphone.  I remember my face feeling like it was visibly shaking and so were my legs....I'm surprised I didn't collapse really. He asked me how Gray was doing and told the crowd a little about Gray.  Hearing him talk about him made the reality surreal....How was this my son? How was this my story?? How was I on stage talking about getting through trials as my son was now officially dying in the PICU on the 5th floor of a children's hospital??? It just seemed completely like a nightmare.  I remember mumbling through what I said, and I mentioned something about I'd gotten some more news but didn't really want to share it on Mother's Day....and I shared with him the verse about "Whatsoever things are true, whatsoever things are good....etc etc, Think about such things." (he filled in the rest of the verse for me), that I woke up every morning and just thought about what was true for THAT day, that day at hand.  I focused on what I had to do and nothing else, and I just prayed and held on. I also remember saying something about how men and women deal with things a lot differently and I must've made a crazy face because the whole audience laughed.  He thanked me and somehow I managed to walk down the stairs without passing out and went back to my seat.  I don't remember anything after that.

   After church I remember going home and packing up, but we didn't get back to the hospital til it was dark out.  I think Miles and Randall were already in our room at the Ronald McDonald House but I can't be sure.  I just remember my hair was wet and I had on my "Have a GRAY Run" tee and I wanted to see my boy, my sweet boy. I just wanted to tell him how much I loved him and rub his sweet soft head and face. Sing to him and kiss on him...Lay with him in the hospital bed we now had in his room.  On my way up  to his room I ran into an Indian woman I'd met while staying in the other RMH. Her 7 year old son had  leukemia and had been there for months as well, and she also had another small son, about 2 years old.  We must've talked for close to an hour about her son, and how her husband was handling it.  I shared Scripture with her and my heart, even though she was a practicing Hindu.  My heart broke for her as well.  The whole time I'm talking to her, I'm thinking in the back of my mind, I need to get to my son...He's dying. I need to go.  But I just stayed and listened. Talked and hugged her.  I don't know why I did, again, because the time was ticking on Gray's life, but I did.  You see, it doesn't matter how much you do, how hard you fight, and if you leave it all out on the table, you ALWAYS have things you regret and wish you could go back and change.....but, you can't.  You are so in the moment, and so frayed, that you just do things automatically....and when the dust has settled and you can start thinking clearly again, or semi-clearly again, months down the road, you play these scenarios in your head, over and over and over again, and you think, WHY??? Why did I do that?? And, there is no answer.  For me, I've wrestled with so many things like this over and over, until I wear myself out and write it out, cry it out, mull it over a thousand different ways, talk it out with my counselor....and then I can finally put it to rest, as best I know how.  The work of grief is unimaginable and completely exhausting.

  So by the time I finally get up to Gray's room, I find him sleeping peacefully. He's intubated and the room is quiet... No nurse coming in every 20 minutes to flip the switch on his dialysis.  He was wearing his adorable little blue Hawaii'n shirt, the same ones both his big brothers had worn, and Randall had gotten the nurse to help him and they had sprayed his hair and gelled it into a tiny little mohawk!!! It was the cutest thing I'd ever seen!!! Gray's hair was finally growing and getting fluffier, after being there for so long, and I'd mentioned how I so badly wanted to gel and style his hair like his brothers but we'd hafta figure out a new style all for him.  He had to be unique, you know?? So when I saw the hair, I just laughed and my heart filled with so much love.  I was home.  I was back with my boy, and for a night, all my boys were together, even though the other two were down 5 flights of stairs, across a bridge and in another building.  I layed in Gray's bed for the longest time just rubbing his face and eyebrows, nose, ears, hands, legs...anything I could easily get to, and spent time with him.  I don't really remember specifics, but I remember my heart being the fullest it'd been in probably forever.  I knew we only had time left....that was it. Just time.  But for once I actually knew what was going to happen.  I wasn't relieved...I was never relieved!!! But for once I wasn't fighting anymore.  I knew he was going to die.  I just didn't know when.  So at that moment, last Mother's Day 2014, I purposed to never leave his side and make every single moment I had with him count.  Because those were the only moments I had left.

  So yeah, this is why Mother's Day will always be hard for me.  The depth of my sorrow today was unlike anything I've felt in many months.  For the better part of the day, I stared off into the distance and didn't utter a single word.  I was in physical pain from the sorrow....especially in my throat and chest, and even in my legs as I walked or got up.   I didn't answer any phone calls or make any phone calls either.  I had nothing in me, but pure and deep sorrow for my littlest boy who would never be in my arms again on Mother's Day.  I didn't understand how this could be???  Thankfully my 3 other boys on earth, who know this drill well, allowed me my space to sit and stare at birds or silently cry, and they just let me.  They loved their heartbroken Mom and celebrated me....and I felt completely unworthy, but still very loved. And yes, even though my heart was broken, I felt so much love for them.

  I love you, Gray, and I miss you terribly my sweet darling boy.  I will see you real soon, okay? xoxoxo Mommy <3

First look at my boy on Mother's Day 2014 with his FIRST and only mohawk <3 

Even on a ventilator, he was so beautiful....perfect lips, long lashes,
fluffy eyebrows and juicy cheeks...I could stare at his face forever.

Loving on my little hero.  Nothing better in the world. 

Loved rubbing his sweet face.  You can really see how his hair
and eyebrows were getting so long here.