My Unique Path

Today is a hard day, an emotional day, a sad day.  Sometimes I just can't shake the pain I feel in my heart, and it consumes me for a moment.  Sometimes I can't keep up the strong, superwoman, momma bear persona for too long, until I have to break down.  Sometimes I can only keep a smile on my face and watch everyone else around me live their happy little lives with their happy little typical families for so long until reality hits me in the face and reminds me that my family is anything but typical.  Sometimes I need to let myself mourn.  Yes, I'm still in mourning, but just like any other mourning cycle, time has helped me adjust to my reality.  My life is very different than I hoped, expected, and worked so hard for.  It isn't less than.  It isn't awful.  It is hard, and on days like today, it is sad because It is different.  And sometimes I need to just let myself mourn the life I hoped that I would have.  And on days like today, my mourning is brought on by watching beautiful families around me live my dream.  I envy them so so much.  I don't know if they notice the envy in my eyes when I watch the mommy being dragged out of Sunday school because her toddler has to go pee pee in the potty.  Or if they notice the envious smile on my face as I watch a set of parents trying so desperately to divide their attention up among the newborn needing to be fed, the toddler wanting to play cars under the church pew, and the young girl wanting to play hangman.  Or if they notice the envious tears in my eyes as I watch an infant roll, coo, bear weight on its legs or make eye contact.  The simple tasks these people so easily dismiss and take for granted comprise the dream of the life I hoped for.

I mean it when I say I wouldn't change a thing.  I love my son, more than I ever thought it was possible for a mother to love a child.  He is absolutely perfect;  he was given to me and Mike to teach us to love, and what life is really about.  I would not change those life lessons for anything.  But these life lessons have placed us on a different path-- a Unique Path.

I spent my entire life preparing for the "traditional" path.  I did all I was told, tested well in all I was taught, and I was well prepared for the traditional path.  Instead, I was given an angel who changed everything in an instant.  Before I knew it, I was on a special path, a unique path.  I could see all of my friends on the traditional path laughing, having a good time, living the dreams we all prepared so hard for.  At first I would wave at them, and they would wave back.  But now the two paths have diverged so much that we can no longer see each other.  I sometimes sit and think of them and what they are doing with their families on the traditional path.  It makes me smile, and then it brings pain.  I cannot do the things they are doing on their traditional path.  My path is different.  I decide to focus on my path, instead of looking longingly at the traditional path.  My path is beautiful.  It is slow-paced, curvy, and sometimes bumpy, but the slow pace makes you notice all of the beauty all around!  The bumps and curves make you appreciate the level, easy ground.  There are not as many people on this unique path, but those you meet have a lot of depth to them.  They all have a story to tell about how they so desperately longed and prepared for the traditional path, and how they ended up here.  Those who have been on the unique path for a while talk so much about its beauty and how grateful they are that they came across it.  They mention its loneliness and how difficult the ground can be, but they have all learned tips about how to avoid some of the bumps or how to take them in stride.  As I stroll on this unique path, I sometimes notice another person who is broken down to the side, crying out for help.  I often witness others rush to provide aid to the one in distress.  Those on this path haul their own burdens over the bumps, around the curves, and happily take on the burdens of the one struggling.  It is phenomenal!  I saw fewer of these people on the traditional path.   I am grateful for their example, and I pledge to be more like them, once I learn to more easily carry my own burdens!  As I focus on my own unique path and less on what I'm missing on the traditional path, I find more happiness; I find more peace.  I am more focused on the joy of my unique journey.  I learn to laugh and interact with those on my path, and I learn so much from them.  I may not correspond with them often, because they are few and they are very busy, but they inspire me to be better.  Despite my attempt to solely focus on my unique journey, there are times the unique path runs parallel to the traditional path.  I once again see many people interacting, laughing and living the dream life I once had.  At other times, the two paths converge and I get a taste of what it would be like to live that traditional path life, but the paths once again diverge.  I find myself mourning and missing the traditional path all over again, and I must again readjust to my unique path with its hills, bumps and curves.  I quickly find the beauty again, but there is pain that stays in my heart for a moment.  Sometimes I think it would be easier if I could avoid seeing the traditional path forever, but there are things I can learn from those on the traditional path as well.  So when we converge, I try to interact and participate, but it is difficult.  It is painful.  And I wish those on the traditional path could truly understand...

This is my life.  This is how I feel.  These are the emotional cycles I experience.  They are not right.  They are not wrong.  They just are, and my feelings are real.  So today I'm going to let myself cry.  I'm going to allow myself to feel sad and look longingly at the traditional path.  I know it won't last, and tomorrow I will once again be grateful for my unique journey and all of the miracles and joy that it brings.  But on days like today, my path feels lonely and I feel poorly understood.  I feel envious and I feel angry that my path is so different. Thank you to those on the traditional path who are reading this post.  Thank you for trying to understand, and for including me when our paths converge.  it means more than you know.  And to those who are on the unique path, keep on keepin on.  You inspire me, and I love you like family.  Thank you for your endless support, encouragement and your example.  You make the rough terrain more bearable and have taught me how to love the rocks, bumps and hills as well as the level ground, miracles and beauty.  I love you all.  Thank you for being a part of my journey.

The Power of One Miracle

I don't know of a moment sweeter than this one.  The joy in my heart is almost indescribable.  It is amazing how one tender moment can make everything worth it.

the tears
the sleepless nights
the therapies
the disappointment
the repetitive practice
the wondering, praying, and not knowing

not knowing if any of it was making a difference
not knowing if any of it was helping
not knowing if J was benefiting from it all

but today, it is all worth it.

Jayson was upset and cranky this afternoon and evening.  I was beginning to get frustrated.  His favorite activities weren't helping.  He wasn't hungry.  He didn't need to be changed.  He didn't want to be touched, but didn't want me far away.  I wanted him to tell me what was wrong so so badly.  I reached my limit, so I made him look at me.

"Tell Mommy," I said.

"Tell Mom what you want."

Not expecting a response, I was mostly praying for guidance.  I was pleading for a sign to know how to make him happy.  How to help him with this frustration.  And God answered my prayer and responded to my plea.

Continuing to cry, Jayson raised his left hand to his chest, tucked his fingers under, and began to rub his chest and belly up and down.  i stared at him for a few seconds wondering if I was making me see a miracle I so desperately wanted to see.  He stopped, and started again and then lunged at me.

he had spoken to me, loud and clear

Jayson signed "bath".  This was a new sign, one that has been very difficult for J to do, but one we have been working on daily.  The recent continuous practice, however, was not the reason why he chose this sign.  As I asked him if he wanted the bath, he lunged at me and snuggled in my arms, and closed his eyes.  He was tired.  He was telling me he was tired.  It's our nightly routine-- bath and bed.  He was telling me he was ready for his bath so he could go to bed.

Do you even know the level of cognition that takes???   He thought....  Hey, I'm tired.  I'm going to cry because I'm tired.  I'm going to try and tell my mom I'm tired.  She's not listening, I'm going to get more angry.  She asked me what I want, I should tell her.  How can I tell her?  i don't know how to say I'm tired.  But before I can go to bed, I need a bath.  Oh, I know.  I will tell her I want my bath.  How do I tell her that? Oh, I know.  I can sign it.  What is that sign again?  Oh yeah, I remember...

THAT IS WHAT MY BABY DID.  He is so smart, and much more cognitively aware that we even know...

I gave Jayson his bath, even though it was a little earlier than our typical routine.  I lotioned him up, put on his jam jams, and he snuggled in my neck as I laid him in bed.  Do you know what he did next?

he fell asleep.

Not only did my precious boy commnicate with his mommy for the first time in his life, but he communicated his NEEDS.  He told me what he really wanted.  And I listened.  It was honestly magical.  I cannot think of a greater feeling in the world right now than knowing my baby boy can talk to me using his hands.

It is this moment today that reminds me why I'm doing this.  Why I'm Jayson's mommy.  Why we work so hard in therapies.  Why we go to so many appointments.  Why we never give up hope.  Why I will never give up on him.

I've always said my boy will change this world.  I've said he will move mountaines, and defy odds. Today he proved it.  Today he showed me that he will do even more.  And today gave me the joy, strength and reinforcement I need to keep me going.  So bring on tomorrow's therapy appointments!!! I'm ready for more miracles!!

July 5, 2013--- A Day I'll Never Forget

There is a story that has had a big impact on my life, but I have always felt that it is not my story to tell.  This story is based on a tragic event that brought meaning, faith, strength, heartache and fear into my life.  A person has very few defining moments in their life, and this was one of mine.  I share this event very delicately, because my words could never appropriately describe the heartache, the heartbreak, or the absolute horror my sister-in-law and brother-in-law experienced this time, last year.  I am choosing to write about it now because writing is very therapeutic for me.  I hope by telling my version of this story that I might feel peace.

On November 30, 2012, a boy was born who was too perfect for this earth.  His name is Porter Fallon.  I did not have the privilege of meeting this sweet boy until June, whereas I am responsible for keeping Jayson in isolation through the winter months.  On June 20, 2013 I received a devastating phone call.  My sweet nephew, Porter, was in intensive care in Las Vegas.  His family was vacationing in Las Vegas when he came down with an ear infection.  His fever spiked and his mother and aunt took him to the hospital.  The doctors drew some blood and did some tests.  While there, he had a seizure that scared everyone.  Things got very serious, very quickly.  Porter had an infection that started in his ear and spread to his blood, quickly.  He was in the PICU on life support, just like that.  A couple of hours and an ear ache changed everything.

Mike was able to leave work early and we found ourselves quickly on our way to Las Vegas, 6 hours away, with our special needs boy in tow.  We didn't know what we were going to do.  We didn't know how we would do it.  All we knew was that our family needed us.  Not many members of our family are too familiar with hospitals and the medical system.  We knew, somehow, we would be able to help.  We got to the hospital pretty late that night.  Mike stayed with Jayson in the waiting room and I was able to go with my sister-in-law and brother-in-law to speak with the doctor.  There were still a lot of questions, and not a lot of answers.  He was on antibiotics, but the infection was bad.  He was septic, and in DIC.  Not responsive.  Struggling to fight this terrible infection.  We asked our questions and got answers that just led to more questions.  We needed to wait and see how Porter responds to antibiotics by the morning.

Things weren't better by morning.  The doctors decided to test Porter for meningitis.  He wasn't responding to treatments and he was needing more support.  There was speculation of several bacteria that could cause the infection, and we were all notified immediately that we were exposed.  We all needed treatment from a doctor, but we were all 6 hours from home and the care of our doctors.  Clearly, I was terrified for Jayson's safety.  He, too, had been exposed through me.  Although I wore a robe and a mask anytime I entered the PICU, there was still a chance he was exposed.  All of our family spent the next few hours on the phone calling our doctors, leaving messages, and trying to find nearby pharmacies that would take our out of state insurances to get on different antibiotics.  Meanwhile, Porter was being prepared for an ambulance transfer to another hospital with a more experienced PICU team.  The rest of the day was a blur as we drove from pharmacy to pharmacy picking up prescriptions.  A couple of pharmacies ran out, and we had difficult finding a pharmacy that could make Jayson's antibiotic in liquid form for his G-tube.  After hours of standing in line, making phone calls, and driving around Las Vegas, we picked up our final prescription just before the pharmacy closed at 9:00PM.

The next couple of days were not too eventful.  Bacterial meningitis was confirmed.  Antibiotics treated the infection, but little Porter's body was pretty hammered.  He needed time to see how he would recover.  His kidneys had shut down and he was on dialysis, hoping to help them respond.  After another day or two, the doctors decided to test the activity of his brain using an EEG and an MRI.  The EEG showed he was having seizures.  His brain was active, however.  The MRI showed some permanent damage.  The infection went straight to his brain.  Mike and I held our family while they cried and accepted the reality that their precious Porter would have disabilities.  He may not eat on his own.  He may not breathe on his own.  He may not walk or talk.  But the doctor felt he would come out of this.  We spent some time as a family accepting this news and digesting it.  I felt meaning in my life like maybe we had gone through these trials with Jayson in order to help our family.  I felt maybe this would bring us closer, and we could help one another.

It was time for Mike to return to work.  I was so torn.  I really felt I needed to stay with my sister-in-law and brother-in-law.  I packed enough clothes and medical supplies to stay for another week.  I wouldn't have a car, but I could catch rides with friends and family.  Our family had just received awful news, but the doctor also said he expected Porter to recover.  It would likely take weeks, if not months.  I could not stay all that time until he could come home.  Although I wanted to be there for my sister and brother-in-law, I knew that I should do what is best for Jayson.  Poor Jayson had not seen much of his mommy for the past couple of days, and had spent way too much time in a hospital waiting room being exposed to all sorts of awful conditions.  It was time to go home and wait.

We were home for nearly week, getting updates a couple of times a day from our family.  I was getting nervous because there was not much progress.  I feared so much about what might happen.  We were told that another EEG and MRI were done.  My brother-in-law had just returned to Utah to work for a couple of days and was told he needed to come back to Las Vegas to receive the results.  This didn't look good.  I have been involved enough in the medical world to know that if an MRI or a medical test shows positive results or is inconclusive, doctors don't hesitate to say that over the phone, in a letter, email, voicemail, etc.  They only deliver bad or complicated news in person.  This was bad.  Mike, once again, got off work and he headed back to Las Vegas.  My eyes were wet with tears the whole 6 hour drive.  I called friends with support who had gone through the loss of a child.  I asked what things I should do to support those I love.  I knew we would be driving home without our sweet nephew.

The next couple of days are also a blur.  We received the bad news late that evening when the family had all arrived.  The doctor went on and on.... infarction... no brain activity... blah, blah, blah.  It hurt.  It stabbed at my heart.  Although I appreciate receiving good medical details and information, all that needed to be said was, "He will not recover."  The infection killed his brain.  Brain matter had been taken over by water, puss and swelling.  It was at this moment that we all realized that his body was no longer housing his spirit.  Porter was not there.  His brain was no longer working.  He had gone.

We went back that night to stay with family.  I didn't sleep, and I'm sure no one else in our family did either.  I remember feeling some anger with God.  How could this happen?  How could someone I love lose their child?  How could their lives ever be the same again?  How could God not heal Porter?  I remember feeling angry I was there.  Why?  Why did I have to be a part of this?  How could I help them through something so tragic?  What could I possibly do to help them?  How could I find the strength when I just wanted to crumble myself?  I remember waking up in the morning after a few minutes of sleep feeling detached, numb, strong and calloused.  I felt nothing.  No feeling.  No emotion.  God had answered my prayers.  I knew I was there for a reason, and that somehow I could help.  It was the 4th of July, yet there was not much to celebrate.  We spent limited time at the hospital, whereas it didn't feel like Porter was there.  We spent time as a family.  We said a special prayer, and my sister and brother-in-law got special priesthood blessings.  I felt the burden of their decision that needed to be made that next day.

On the 5th of July we had a meeting with the team of doctors, nurses, the social worker, and the chaplain of the hospital.  The decision was made to let Porter's body go.  It could not and would not survive on its own...ever.  I called a dear friend to come and take pictures of Porter with his mom and dad.  They were precious.  They were beautiful.  And again we realized that his body was simply the temple of his spirit, and his spirit had already gone.  I saw the look in his mother's eyes looking at her baby boy who was too perfect for this world.  I saw the pain in his daddy's heart when he touched his lifeless body.  After the pictures, there was closure.  We collected everything in the room and walked out of the room, knowing the next time we walked in the room it would be silent.  And it was.  Not tubes.  No machines.  No beeping.  No voices.  Just Porter's body, free from tape, tubes and pain.  I helped the nurses clean his precious body, so his mommy could hold him one more time without the tubes, wires and machines.  She wanted his face to look pure and angelic, just like his free spirit.  The materials the hospital had were not enough.  Fortunately, I carry many medical supplies with me and was able to find the material necessary to free his face from the harsh adhesive.   I said my goodbyes, and walked out.  Michael said his goodbyes, and we waited.  Finally our sister-in-law and brother-in-law were ready to close the hospital door behind them, and not look back.  The look on their faces was almost of relief.  Yes, there was heartbreak.   Yes, they were mourning.  But they had been mourning for weeks.  At least there was an end.  They could try and pick up the pieces of their broken hearts and continue on.

Things from this point on seemed like business.  Nothing but a to-do list. Notify family.  Clay molds of his hands and feet.  Find a Las Vegas funeral home.  Order a Death Certificate.  Arrange for transport and embalming.  Arrange for transport to Utah.  Schedule funeral home in Utah.  Find a burial plot.  Set up a fundraising account.  Order flowers.  Ensure all was in order for the viewing and the funeral.  Create a video of pictures and music.  Ensure family and friends are notified of funeral services.  I remained strong and detached through it all.  Seriously, detached.  I still felt little to no emotion.  I did not feel human.  It almost felt wrong that I could make some of the phone calls and do some of the things I needed to do without completely falling apart.  Although it felt wrong and I questioned it, I felt grateful.  God again was giving me the strength I needed to be strong for my family.

The services were beautiful.  Porter truly is an angel.  A special spirit.  Too perfect and precious to stay on this earth.  We enjoyed our time together with family and celebrated the influence Porter had on us all during his short stay on this earth.

Since this funeral day, I have not allowed myself to think of any of this.  The pain is too much  I am just recently dealing with the pain and emotions I was able to postpone a year ago.  This experience was traumatic and life-altering.  It was truly the most difficult experience of my life, and the hardest thing I've been through.  Yes, harder than Jayson's trials.  Because throughout Jayson's trials, I was always able to take my baby  home.  This time, baby Porter did not come home.  It seemed like my worst nightmare, realized.  Although Porter was not MY son, I feel the same emotions because I had feared them for months.  Because I almost lost my son several times, I know the pain my sweet sister-in-law and brother-in-law are feeling.  Their pain haunts me.  I have nightmares in my sleep about the actual events that took place last summer.  I have flash backs and panic attacks as random experiences, sights or smells take me back.  I am forever altered by the traumatic loss of my nephew.

But God is still good.  With even terrible traumatic experiences come blessings.  I know that God allowed us to be there for our family and help them because of our experiences with Jayson.  I know that one of the reasons we have experienced our trials with Jayson is to help others, including our families.  I know that my nephew is on the other side, guiding us and continuing to teach us.  I know he is comforting our family.  I see he is with his parents.  I am learning from my sister and brother-in-law's strength.  I always wonder how families survive after the loss of a child, and I see them surviving.  Their hearts may not be whole, but they have gone on loving.  This gives me hope.  I pray I may never lose my precious baby, but if I do, I hope that my heart will also go on loving.  They are so confident they will be with their boy again, in heaven.  Their testimony inspires me.

Through such a difficult experience I have learned much.  So as the year anniversary of Porter's death brings to life many raw feelings and emotions, it also brings a lot of faith and peace.  My family is doing well.  Porter's parents are expecting another baby in October.  I know Porter will be sending off his brother to this earth, telling him how lucky he is to have such strong, loving parents.  I didn't know Porter well, but I miss him.  I am so pleased and comforted to know that I still have plenty of time to get to know him in the afterlife.  We love you sweet Porter.  You've made such an impact in such a short amount of time.  We will be with you soon.  Until then...