June 19, 2015

Home Grown

June 19, 2015
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Home Grown.  Grow something from a garden?  I can barely thread a needle.  But when you live on forty acres you gotta do something...other than raise chickens, care for horses, chase pigs and doctor up sheep.  Besides there is a movement that calls us to come back to our roots, to get our hands dirty and work until our muscles ache.  There is a new appreciation for what good soil has to offer and it doesn't come in the grocery store (the experience that is).  

We started out by sectioning off a garden that ended up being too far away from our house so this last spring we built garden boxes and got to seeding.  Then we got to waiting.  And waiting and waiting.  A flood came and all but destroyed our efforts.  I was sure nothing would come of our hard work.  Oh me of little faith!  

Look!  It's little Pete and Jack the Giant!
There is something so gratifyingly satisfying about pulling potatoes from the dirt.  They come up in clumps, in groups, each as different as they are the same.  And if you keep digging you will likely find more.  I could mine for potatoes all day!  Hi, my name is Carol and I'm a potato digger.  

Gardening is much like life.  It has it's ups and downs, surprises, dry spells, and "Ah Ha Moments".  There is so much to learn from dirt (who'da thunk?).  After reading a bit on "How to Garden"  I was intimidated.  There is a lot of science to it.  Chemistry (which I failed in high school), moon cycles, do's and don'ts, and zones had me longing for grocery store produce isles.  But friends, if I can do it, you can do it!  I challenge you to start small.  If at first nothing grows, plant something else.  Start with something easy, like green beans or cucumbers.  Even easier that that is a little known herb called, Mint.  Warning:  Mint will grow like wild fire.  Either contain it or let it go and serve as ground cover.  

Stay tuned for a tutorial on canning...by Big Dog
I am not an expert in gardening by any salt water taffy stretch of the imagination.  I throw seeds out, watch and wait.  The best part is how much you learn, on your own, along the way.  There are lessons in patience and appreciation at the price of getting your nails dirty and it's right outside your door.  You don't have to have land.  You can grow almost anything in just a pot with a little soil and TLC.  You don't have to rely on the perfectly modified fruits and veggies your local grocer has to offer.  Have you ever seen a truly home grown cucumber (insert photo of cactus here)?  Adding fresh mint to a "grown-up drink" is ever so rewarding.   Got dirt?  Plant something! Take advantage of the opportunity to having something Home Grown.

June 14, 2015

Grief and Fulfillment: Part THREE

June 14, 2015
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A funny thing happens after publishing a post.  A rush of unwritten memories come flowing in.  Things that happened, people that were there and a lot of "remember whens" knock on your brain.  

For example, before bringing home our two boys I owned a cafe with my best friend.  Fancy That.  A cafe, bakery and takery.  I often forget that time in my life that I owned a business, worked 18 hour days, thrived on deadlines and 400 cookie orders, catering weddings, building relationships with regular customers, and becoming so delirious from long hours that everything seemed hilarious.  Not many can say they started a business with their best friend and it was and still is successful.  We had to sell Fancy That after receiving the news that Mason was sick and would spend several months in a hospital.  My best friend also had a baby and longed to move home to be with her family.  I miss Fancy That. 

Before bringing home Parker and Mason we were host parents to exchange students from France and Bolivia.  There is a reason for everything.  Our exchange students enriched our lives.  To this day we are in close contact.  We were witnesses in a wedding, God parents to a baby and have formed forever relationships like family.  Mariella, from Bolivia, wasn't our official exchange student but we brought her under our wing anyway.  She turned out to be a precious and crucial part of our lives upon bringing home our babies.  She could speak Spanish to Parker, take care of him while we were in the hospital and serve as a shoulder to lean on while Mason was sick.  I needed her and God knew it. 

Mariella and Parker.  An exchange student then but family to us now.
As if my former life disappeared, it felt like I only started to truly live once I became a mom.  But my heart ached.  My head hurt.  I was in panic mode 24/7.  While in Ft. Worth I received therapy from a PTSD therapist via telephone to help overcome the recurring nightmares of the time I had to hold Mason down while a nurse practitioner cored out marrow from his back.  My mom could hear his screams from down the hall.  Looking back I don't know why I agreed to hold him down.  Why they didn't put him to sleep for such a painful and traumatic procedure?  I remember waking up in the middle of the night and rolling over on to a pool of blood from a small scratch on Mason's ear. Countless near death experiences haunted me and yet we still hadn't began transplant...

Part Three:

Weeks passed and Mason began to recover.  He finally woke from his coma and once he was able to breathe on his own we were moved to the oncology floor of the hospital. The hemorrhage that covered a fourth of his brain compromised his ability to sit up, crawl and swallow solid food. I was as devastated as I was thankful. We continued to settle in at the Ronald McDonald House and met other parents fighting for their child's life.  We watched babies and children come and go.  Some didn't make it.  Some did and got to go home.  It was like living in another world, trying to adjust to feelings that could take your breath away, shatter your heart, challenge your faith and make you question things you never had before.  Our routine revolved around keeping Mason alive while providing any sense of normalcy for Parker.   I felt so isolated yet so surrounded.  I remember taking breaks to catch some fresh air and sunshine outside the hospital.  To this day, the October sun strikes me the same way as it did then.  The smell of turning leaves and the copper sun setting earlier and earlier brings me right back to sitting on a bench outside Cook Children's Hospital.  

After waking up from his coma we surrounded him with soft toys, even a sponge.
Once a cord blood match was secured for Mason we were admitted to the transplant floor.  Isolation.  Leaving the room to get coffee became my activity of the day.  Chemo began and the fear set in.  Mason was so sick.  He would have fevers of 105.  He threw up countless times a day.  We was miserable and angry.  I could do nothing but assure him it would be worth it.  Did he understand?  Did he know why so many needles poked him, why we couldn't leave the room, why his body ached?  My mom stayed with me.  Together we made the best of it.  Strangers from a church offered to help by sitting with him so we could take breaks and eat something other than cafeteria food.  My mom bought mounds of fabric and made blankets for Mason and so many other little patients.  Parker would visit through a glass window and Big Dog would spend 3-4 days a week with us.  

And then one night, while Mason was "on death's door", his doctor came in and asked me to sit down.  She had news that would shake me, that would put me in a world of despair.    I could not comprehend what she had to tell me.  Mason's cord blood had been given to another patient by mistake.  Mason's chemo was stopped immediately and life saving medicine rushed into his body.  The other patient passed away.  It was a nightmare full of denial, fear, and helplessness, and guilt, and anger, and vulnerability.  It was devastating for both families.  I still have a hole in my heart for the patient that was supposed to receive life but instead died.  That night was darker than any other night.  I met with the mother who's son passed away after battling leukemia twice.  I was terrified that she would hate me, lash out at me.  But she didn't.  She was full of grace and immediately comforted ME hoping Mason would survive even though her son did not.  To this day, her comfort is the deepest example of selfless love and human grace I have witnessed. 

We waited in the hospital and through Christmas waiting to hear of a new match.
Mason fought.  We all did.  The wait for another match began.  In that time he suffered another nose bleed that nearly took his life.  We were back in the hospital because he had no immune system and had a constant dependence on blood products.  He needed a match.  He needed new life.  Time was running out. Two months passed and finally, another match was found and chemo prep began once again.  We held on and waited for Transplant Day.  

Transplant Day
Much to our surprise, Mason's chance at life was contained in a tiny bag with a cord that hooked to his body.  It all came down to one bag, one cord and a whole lot of waiting. Friends and family from all over came to peek through a window to witness the miraculous event that so many had prayed for.  The "Bag of Life" slowly infused in to his body and we all watched and waited.  Would his body accept the life giving cord blood and cure him?  Things became much worse before they got better.  Mason's fevers were so high I could barely hold him he was so hot.  He contracted VRE, MRSA, and RSV.  His body was tired but his fight was mighty.

Friends and family watched from outside Mason's hospital window as he received his transplant.
It didn't take long for Mason's hair to fall out from chemo and his body nearly double in size from the steroids 
My dad visited Mason gowned, masked, and gloved.  A calendar hung in the background counting down the days that would determine whether or not the transplant took. 
People we had never met sent Mason hats of all kinds to cover his bald head. 
Mason had to stay in a tent for 18 hours a day for RSV treatment.  It was pure torture of the longest hours and days.  He really was a boy in a bubble.  
More than twenty days passed in isolation on the transplant floor.  Mason conquered all kinds of infections and viruses and overcame every obstacle like a warrior.  All the love and answered prayers from others defeated death and Mason won.  We celebrated the day Mason got to break out of transplant with an Elmo cake, balloons and new toys.  I learned about all the medicines he would need to take via his feeding tube. The nurses carefully taught me how to flush his pic lines and give IV medication. The amount of medication was nothing short of overwhelming and intimidating.  I was constantly fearful of doing something wrong.  I wasn't a doctor or a nurse.  I was just a mom.  Plans had to be made to make sure everything was as sterile as possible while we were released to the Ronald McDonald House.  He wasn't allowed to be outside or in public without a mask.  And once again we waited.  We waited to make sure he would remain well, his numbers would continue to increase and pray that finally going home was on the horizon.  

Parker finally got to visit Mason up close and personal in isolation on "Break Out Day"!
We were all amazed at Mason's physical strength to walk out of isolation.
What was supposed to be a time of relief and healing actually became a time of navigating uncharted territory. I was scared to be without the monitors tracking Mason's every pulse and breath.  I actually missed the sound of the IV pump, the beeps and alarms.  I couldn't sleep.  I needed those noises.  I was consumed with anxiety, panic attacks, and terror that we weren't in the clear, something would go wrong.  What were we supposed to do?  How would we spend our time?  What was going to happen to the other children on the transplant floor?  We were out of isolation but confined to the Ronald McDonald House. So I organized.  I made spread sheets of his medication schedule, arranged our room to mimic a home, I cleaned and sterilized, did laundry and walked Mason around the Ronald McDonald house in laps on the two floors.  I was terrified to be alone.  If my mom left for home 3 hours away, I needed someone else with me.  Big Dog came and begged the doctors to release us to home.  Our real home.  Our home we hadn't lived in for 7 months.  We agreed to bring Mason back twice a week for clinic appointments and to come immediately if he spiked a fever.  So we packed up and "moved" home.  Home.  

June 1, 2015

Grief and Fulfillment: Part TWO

June 1, 2015
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They say no one can prepare you for motherhood.  This I know is true.  I wasn't only naive but terrified.  My baby wasn't healthy.  He was dying and there was nothing I could do.  The doctor's didn't know what to do.  My two and a half year old was scared and hungry and confused.  I didn't know how to help him.  I only knew to show him where the food was and feed him several times a day, a little at a time. 

Ice cream sandwiches quickly became a favorite treat!
Parenthood came crashing down leaving no room for celebration or joy.  We spent our first morning home in our pediatricians office desperate for answers.  In a matter of hours we were in the ER of the children's hospital holding a little life that barely existed.   His dark skin was pale white and his breath was shallow.  Not knowing what was wrong with him made it difficult for doctors to know what to do or how to help him.  Mason Fernando.  Our son was sick.  We were helpless and near hopeless.  

As we waited on blood products, I tried desperately to get Mason to take a bottle not knowing he had thrush.
Our new toddler was left with both our parents.   We marveled at how brave he was, how his dark eyes connected with ours.  He must have said, "Hola" to every person that walked by.  He was spoiled with whatever he wanted from the vending machine, cafeteria and gift shop.  I remember my dad giving me updates on how he was doing while waiting for us.  Parker Tereso. Our son was overwhelmed with his new surroundings. We were waiting to bond with him.  

Parker played with toys brought by friends and family hoping to make hospital life as normal as possible.
After the absolute longest night of my life, we were finally admitted to a room and Mason was hooked up to a tower of IV's that pumped life into his fragile body.  That room became our home for the next several months.  When Mason had a "healthy CBC" we were allowed to go home with him for hours or nights at a time and assume the role of a couple with their two children playing family.  But our reality consisted of a child with awful night terrors and an infant who's life wavered.  After eight weeks of tests, doctor's finally diagnosed Mason with Wiskott-Aldrich Syndrome.  In a nut shell it's a genetic disorder that attacks and destroys platelets and compromises the immune system.  Mason was bleeding internally and externally all the time.  I'll never forget the time he cried and his tears were blood.  I am still chilled to the bone just thinking about it.  A nose bleed, if not stopped, would cause him to bleed to death.  He had eczema and would often need a platelet transfusion to stop the bleeding from scratching his skin.  Any germ out there, even the slightest cold, could take his life.  

Mason's IV tree of life
Instead of playdates, bubble baths, and birthday parties we were confined to a hospital room waiting for the only cure, a bone marrow transplant.  While Parker was taken care of by his grandparents, daily visits were spent just trying to get to know each other.  I was his third care taker but wanted to be his mom.  Could he trust me, love me, need me, want me?  I had no idea then how difficult our journey would be.  But it was and still is his tender face that reminds me of why he is ours.  We are to protect and nurture and most of all love him.  And we do.  

Priceless smile!
Mason's life continued to balance as we waited for a transplant match.  Several near death scares started to take a toll I'd never met before.  I was mentally, emotionally, and physically exhausted.  I was anxious and scared.  I was angry.  But I was thankful.  We had an amazing support system.  My mom spent every night at the hospital with me so Big Dog could resume any sort of normalcy with Parker at home.  Scott's parent's cared for Parker during the day so Big Dog could work a few hours before visiting our other "home" in the hospital.  My dad worked close by at the dental school and made routine visits, brought us breakfast, lunch and whatever else we needed from the outside world.  

Oh these brothers!  Still as close today as they were then.  Photo Credit: Shannon Ho Photography

Photo Credit: Shannon Ho Photography
Mason's first birthday... in the hospital.  Our Little Engine That Could!
  He was not impressed by the cupcake.

Little Parker adjusted to his new "home" and often napped in Mason's hospital room.
And then one day, while on a pass to be home, Mason fell  and hit his head on a toy block.  As usual a bump and bruise formed immediately.  He barely cried.  I regret to this day thinking hardly anything about it.  He was bruised and bumped and scabbed all over, all the time.   But after several hours Mason became listless.  His smile faded and his eyes started to roll back.  While trying to feed him, he started vomiting.  This bruise was worse than the others.  Something was wrong.  

I took this picture as we played in the playroom that day.   
I remember the CT scan and quietly being escorted back to our room.  It felt like years passed before the doctor finally came in to talk to us.  He said a few things about a brain hemorrhage and a mid-line shift.  He said they would monitor him and then left.  Shortly after, Mason's monitor would alarm, his breathing would stop, but no one was doing anything.  From previous experience I knew that slapping his back and sitting him up would help him regain consciousness.  I was terrified and yelled for the doctors but no one came.  I grabbed a student nurse and instructed her to find them and Code Blue the floor.  Finally a team of medical students and doctors filled the room.  A crash cart was wheeled in and hysteria set in.  The crash cart was unequipped for saving a life so an epi pen was ordered stat from the pharmacy and a brown paper lunch sack was used to "bag" him.  The room spun and I knew.  I knew that this was it.  But I wasn't giving up.  Mason was rushed to PICU where every cord and needle stuck to him.  A neurosurgeon was needed but had transferred to another hospital the day before.  A helicopter was ordered and we were told his only hope was to be meda-flighted to the nearest hospital with a pediatric neurosurgeon.

These 'lil feet.  My weakest link!
I remember holding on to Big Dog saying that I wasn't ready to give him up yet.  Not yet.  I wasn't ready.  I needed more time with him.  I needed to hold him and twist my fingers around his curls.  I needed to hear his giggle and pat his back.  I called a dear friend and asked her to hit her knees and pray, beg, plead to God not to take him.  She did.  I was finally able to say good-bye to him before they put him on the helicopter.  I sang his favorite song, the ABC song, and he opened his eyes and smiled.  At that very moment I knew he would continue to fight.  

Despite my begging and demanding, I wasn't allowed to go with Mason (I caused quite a scene).  My mom stayed with him until the helicopter was safely in the sky and headed south.  We had to drive.  We drove to Ft. Worth, TX to Cook Children's.  I'm pretty sure we broke the speed barrier.  I kept looking out the window searching the big blue Texas sky for the helicopter that held my sweet baby boy.  We had to stop for gas and an ambulance pulled in right next to us to fuel up.  I begged the driver to drive us to Ft. Worth thinking he could get us there faster.  He politely told me no, that it was against regulations.  I'd lost all sense of reason.  Didn't he know I was a desperate and crazed mother wanting to meet her baby at the hospital?  We continued on and I called my best friend that lived close to the hospital.  I told her to, "get there, be there, hurry!"  I didn't want Mason to arrive without anyone who knew him to be there, to talk to the nurses, to tell them his story, to tell them not to let him go until I got there. And then the traffic hit.  I could see the roof of the hospital but it was miles away.  I tried to get out and run but Big Dog convinced me otherwise.  I would do anything to get to him, to hold him and kiss his sweet face.  

I'll never forget the long hallway to the PICU.  Beautiful photographs of children hung on the walls.  Their facial expressions radiated hope. I remember slowing from a run to a walk  when I saw a doctor standing outside a room.  He was an older man in slacks and a button up with a bow-tie.  His gray hair was combed neatly to the side and his hands folded softly in front of his waist.  And I'll take it to my grave that he had a glowing halo over his head.  I knew.  I knew that was the doctor that had seen Mason and that Mason was ok.  He said a lot of things, "he's critical, in a coma, we are doing everything we can...".  It didn't matter what he said because he was glowing and calm and confident.  Peace surrounded us as he spoke. 

I was taken to a room to be interviewed by a nurse about our experience at the previous hospital.  I began to tell Mason's story, his battle, his bravery, and our hope that he would be healed and live a healthy life with us.  Then we met with a team of PICU specialists that explained what they could and gave us confidence in knowing that he was in a good place and had a fighting chance.  Everything seemed to float over my head until they asked me to sit down and consider that if he woke up he would likely be a vegetable at worst or paralyzed with significant brain damage at best.  Most children with Wisckott Aldrich don't make it to their ninth birthday.  Most die from head injuries and bleeding out or a simple virus their body can't fight.  

Later that night we were taken to the Ronald McDonald House where Big Dog and Parker would sleep.  My mom and I stayed with Mason and for the first time since we brought him home from Guatemala, I slept.  I slept knowing that he was in good hands.  I knew we were where we were supposed to be.  A team of doctors kept an extra careful watch on him.  He was stable, safe, and genuinely cared for by a team of specialists that had yet to see his eyes and hear his laugh.  Mason later became known as the walking miracle.  He still had an incredible yet challenging journey ahead of him.  But he had an adoring big brother, a  fierce loving mom and dad, and people around the world praying for him.  Our journey took a sharp turn and the road  before us was long.  

We braced ourselves.