JA Lessons Learned

Being a mother is truly a gift.  This statement rings true for many…however, being a mother of a child with a chronic life-threatening illness is a gift that awards me with such deep teachings and gratitude for life and I want to share in my lessons learned.

I enjoy teaching so very much.  During my 10 years in a preschool classroom, teaching young ones with multiple disabilities, I always came home counting my blessings.  I was so grateful that I had two healthy beautiful boys, especially since it was uncertain I could even have children.  Both boys are my little miracles. 

Later, when I started working at that University, I was so wide-eyed and excited that I would be continuing my career as a teacher of teachers.  Daily, I marveled at what amazing teachers exist in this world…yet it was always the children that I learned the most from.  Recently, I have been doing much work coaching in classrooms.  There are so many young children with difficulties and those difficulties are quite the challenge for many adults.  I have been blessed with understanding the perspective of little ones and helping adults see things from their points of view.  But I am just a lens of sorts, bringing clarity …assisting adults to see things that were always there to see…

As an educator, teaching comes naturally …lessons are what we plan…  but as a mother of two children with juvenile arthritis, one with chronic serious issues, I have learned much deeper lessons.  These lessons are certainly not chosen and I most definitely didn’t look for them, but now I can clearly see them.  When Parker was diagnosed, I asked many questions, read many medical journals and even text books (yes, I ordered rheumatology text books…it’s what an “educator” does).  I researched so much that I started to re-read what I had already read…looking for answers and trying to understand as much as I could.  And yes, I learned much…much about treatment, disease, options…  Then, of course, there were some things I read that made me cry to the point of exhaustion.  And on the flip side, I even read about “cures” that made me laugh (…like, did you know gin soaked raisins can cure rheumatoid arthritis and at the car dealership you can get joint juice to ease the pain…); sometimes you have to laugh…

But the real lessons come with experiences.  Some lessons are painful.  JA has taught me who my real friends are and are not…and that in every walk of life there are mean people… and even when you try to do “right”, it can turn very very wrong.  But JA has also taught me that mean people might be processing tough stuff  and to love them through it…and what might feel wrong to some, might be very right for us.  

And my JA lens has shown me and my entire family that prayers full of love, acts filled with kindness, and joyful simplicity are amazing and to receive such gifts is truly life’s lessons.

I know that other mothers and fathers and siblings of children with chronic illness endure incredibly difficult journeys too.  I watch it every single day…  countless hours of worry, reveals faith… endless treatments, needle sticks, procedures, bring hope… pain, shows strength… mysteries, give patience… physical barriers and road blocks show us alternate paths…  but the greatest lesson of all is LOVE. 

I can see the love in doctors’ and nurses’ eyes as they tell us things we certainly don’t want to hear.  I also see love in their eyes when they celebrate the simplest of accomplishments.  I feel love from our friends and family with their notes, encouragement, acts of kindness, and prayers.  But the love between Michael, Logan, Parker and I …as we simply sit together, not saying a word, just being together…well that is true deep love and a lesson I gladly learn.

We are so grateful to Armanis Restaurant at the Tampa Hyatt for doing a wine tree fundraiser for Parker's Purple Playas.  

So Close to Death and Life Wins

We have always carried in our hearts the knowledge that systemic JA is very complex and can be dangerous.  Sometimes this weight is too much to bare. So, as parents, Michael and I focus hard on the things in our lives that we can celebrate.  Our two most joyful celebrations we cherish are our two boys, Logan and Parker.  We have been so very blessed with all they bring to our lives.  As most parents, we wouldn’t trade them for anything in the whole wide world.  And because we adore them with every ounce of our beings, we also can feel such devastation when medical issues arise.

During the final week of school, we were painfully reminded how very fragile Parker’s health can be.  We know this to be true with our “minds”, but oh how we pray with our hearts for protection from this fact. 

For several months, Parker has had heart issues and is seeing a new pediatric cardiologist.  The cardiologist, and several of his other docs, feel that his heart issues are stemming from his autonomic system dysfuctioning.  This was firmly confirmed during his last hospital stay by the team of docs that surrounded the care of our dear child.  What makes this so incredible is that another young lady, whom we are very close to, is also experiencing autonomic dysfunction and it has been much more severe and she has been hospitalized for nearly 4 months (at two prestigious hospitals).  Her mom and I are close and much of the initial onset, lab results, and treatments were all the same for Parker.  Seeing her struggle is heart wrenching and makes us wonder “what’s to come…”.

Although this has complicated things for Parker, this is NOT what landed Parker in the hospital this month.  Very suddenly, Parker got incredibly sick with nausea and an uncontrollable gastro-intestinal virus.  Being nearly 16, I am sure he wants some privacy around this; so I will spare many of the details, but he did pass out and somehow made it back to his room after coming to.  I took his temp and he was running 104.9 degrees F; and he was completely delirious.  After calling his pediatric rheumatologist and leaving a message, I started packing because I already knew I was going to have to take him to the hospital.

Parker is on several immune suppressant drugs and one of them is a biologic, rilonacept (arcylist), that is specifically used for systemic JA because it is to keep fevers down.  In fact, it is also used for something called “periodic fever syndrome”.  One of its main purposes of this shot is fever suppression. We were advised, when he started the study on this drug, that if he ever ran more than 101 fever that we were to take him to the ER. 

After packing, I called the doc’s office back and by that time, Parker could hardly be awakened and was even more delirious.  I somehow got him into the wheelchair and into the car.  As we drove to the hospital, he was completely out of it and when we arrived he was starting to turn blue.  I was completely running through motions…pulling up to the ER entrance, pulling him into his wheel chair with the valet guy’s help, handing over my keys and rushing inside. 

A young man in the waiting room looked at him and said, “Mam, is he ok?” as Parker was sweating horribly, blue, and slumped over.  All I could squeak out was “yes, thank-you”…knowing full well he was not.  As they were handing me the form to fill out, a nurse rounded the corner and just took him from me and said follow me, pushing his wheelchair into triage.  She put the pulse ox on him and his oxygen was low.  And again she pushed him in his chair and said follow me.  As she entered the ER room, I was only steps behind her…and in front of me about 8 people swarmed the room leaving me to stand in the backdrop staring at my blue child, praying, and not knowing what to do.  They were hooking him up to all kinds of things, starting his port with IV bags AND digging for second access point to start another IV line, in his collapsed veins.  After 4 pokes and a second nurse trying, they finally got the second line started in his hand.  Parker never woke.

The lead doc asked me all kinds of questions and thank God I have all his diagnoses, surgeries, docs, treatments, and allergies all typed out on a list in my purse because I honestly was in shock.  All I could think to do was to give him the rheumatologist’s cell number …because I knew she would be able to explain his complexity and what labs to run.  There is something about seeing your child laying lifelessly on a gurney and his clothes being cut off him and him never waking up through all this. In that moment, I was so incredibly thankful that Parker’s sweet, caring, brilliant doctor had actually given me her cell number because even during this I felt like I was intruding on her personal life but I knew this was realllllly bad; and she held many key pieces of information that the ER staff needed.  She had saved his life before.

I was in the moment I have feared most with this disease…he was literally near death…I think closer than he has ever been.  As I type this I can’t stop my tears…I have literally dreaded sharing this in writing because typing this out makes it all too real and I am reliving it.  So I apologize to the many who don’t use Facebook and you are just now finding out that he was admitted into the pediatric ICU on June 3.

As they pushed multiple bags of multiple medications through him, and they finally seemed to begin stabilizing him and calming themselves, I called Michael.  Once again, here we were in crisis and he was out of town.  Of course, he drove straight to the hospital.  I then called Logan, as I knew he came home to an empty house.  I let him know that Parker was in good hands and to pray. 

See, Parker’s body couldn’t handle getting this virus on top of his systemic JA and his immune deficiency. Remember, he was already in autonomic dysfunction (dysautonomia has several forms) and on top of all this, his body was going into adrenal crisis.  Just that, on its own, is dangerous.  I didn’t realize until later in the PICU that this was also going on.  

That night was a very long sleepless night.  I couldn’t sleep, I could only stare at my child and the monitors and pray.  They had to move and shift him many times in that bed and he never ever woke.  I kept telling myself his body is healing…that is all his body can do right now…it is healing…I could not lose my child.  Not now…

Many specialists surrounded our son’s care that next day:  neurology, cardiology, endocrinology, gastrology, pulmonology, and pediatric critical chronic complex care specialists (who we actually have been trying to transfer him to for the past month because his primary doctor felt he is too complex for her to continue to treat him).    It was very surreal…many of these docs were partners to the docs he actually sees at the hospital and to hear their take on all this just made me take slower and deeper breaths.

The first two days in the hospital were quite a blur for me…for Parker they don’t even exist in his memory.  He can’t remember anything.  But I think that is probably a huge blessing for him.  With each day that followed there were more and more labs and tests. On the 5^th and final day, he had an endoscopy that showed gastritis (which he has had for years now) and the doc shared pictures of where his pills hit the atrium wall of the stomach and there are tons of burn marks and blisters. So his meds have been adjusted some. They also took 5 biopsies that all came back negative.  Best news ever.

Parker was so thrilled to come home.  Due to all this, it has impacted school and he still has one final exam to make up but amazingly he passed to 10^th grade.  This is truly a gift and was so needed after all he endured.  He had follow-up appointments with almost all his docs and mostly things are looking better.  He is our miracle kid.  He still has to still see a specialist for the dysautonomia.  We are setting that up, but in the meantime, the cardiologist has ordered weekly infusions of sodium chloride at home…this is one of the least invasion treatments for this, so we are proceeding with that.

For now, we are putting off his 2 minor surgeries but are still trying to get them done for prior to school starting.  In the meantime, the doc will do an MRI and get it all lined up for the neck nerve ablations and the nerve stimulator trial in his spine.  Parker still wants to have them done.  I just can’t imagine living in so much daily pain.

Parker is now enjoying the start of summer, resting a lot during the day, counting down the days for Camp Boggy Creek and anticipating the National Juvenile Arthritis Conference where he is an Ambassador of Hope.  Last night he went to the AF awards ceremony where he and Logan got an award for being the top family fundraising team.  Michael and I have all of you to thank for that amazing moment of pride.  It is because of all of you that our gratitude overflows.  You make it possible for our boys to go to conference and camp.  You make it possible for studies to be funded to push us closer and closer to a cure…and you instill HOPE in our children, so that they can continue to say YES to all the possibilities life has to offer.  Our family loves life a little more fully, a little more deeply, and lot more happily knowing that Parker pushed through this scary time, reminding us how precious life is.  Please hug and love on your children and family and keep on HOPING.

I Don’t Know How You Do It!...You are So Strong…

I have heard this quite a bit over the last couple of weeks and it has made me really think…  How do I do it?  Because sometimes I don’t “feel” very strong… 

As I reflect over the last several years…hold on a second, let’s be for real here…we are really talking about the last SIX years; I feel a rush of emotions… Some of you will read this all the way through…to understand…but some may not…because it is “just too hard”…but I encourage you to read on… to get a glimpse into “how I do it”…  to understand a mother’s heart while raising a child with chronic illness…

At times, I am angry…my son has been enduring intense daily pain for six long years; my son has missed out on kid stuff (my own mom just reminded me of this yesterday, when she realized, because of an article she read about the hospital Parker is treated at, that my son is being treated right alongside kids with cancer …oh how that got me to thinking)…while other children are going to school, my son is home learning algebra from virtual school…  while his classmates are playing sports, my son is doing physical therapy…while his friends are beginning to “date”, my son is home trying to find a friend who will talk to him on Xbox…  While his friends plan field trips, he plans trips to the blood lab…

And…I am sad…while his peers are going to high school events, my son is doing shots and infusions every week…while his friends are growing taller, my son has not grown since 3^rd grade… while other moms say good night, I am turning on my son’s breathing machine and praying… as kids ride their bikes and skateboards through the neighborhood, my son wheels his wheel chair…  while others are out and about doing “daily life”; we have spent many days at the hospital…

And I am frustrated…while his friends just go to the movies and snack, my son cannot take food into the movies nor eat what is there because of his allergies…while other moms are planning fun outings and events, I am on hold with the insurance company, drug company, medical scheduling…while other kids plan sleep overs, my son plans hospital sleep studies…

And I am exhausted...  my laundry is rarely put away; my medical to-do list grows every time I think I have everything crossed off; surgical appointments keep me awake and I fall asleep just as my 5:00 AM alarm goes off…  And I work, 40 long hours a week all around this crazy schedule…that is exhausting to the max!

So, I ask myself…how do I do it?  I do it because I MUST.  I do it because I love my son so very much.  I do it with faith and hope and because I am scared that if I pause…I just might just break.  But I know I won’t, because I am STRONG!  Even at my weakest…I know that I am strong…

And I am strong... because I have this young boy who is stronger than any “strong” that I could ever know…  He has faced this disease head on…fiercely, endlessly, and has fought with all his might for his life.

And I am joyful…because my son knows how valuable life is…he sees the good in people all around him…he spreads love through his simple bright, never-ending smile… My son, this young old soul has wisdom way beyond his years…  He gives back to so many, without hesitation…  And in those brief moments that he has the physical strength, he lives life to the fullest and seizes those moments with so much passion that he fills me up with his energy making me believe that anything is possible.

I have such a gift…my son is with me.  There are families…families we know…who have lost their battle to this disease… and I will always and forever cherish ever single moment with all my love and might and will never ever give up the fight.  Logan, Michael, and I do it for him and every family who is strong, because they must be!