The Apologies of My Son...

Dear Family and Friends,

Everett and I were driving home from school on Thursday, when he suddenly said, “Mama, I’m sorry that I’m sick and that you have to take me to the Children’s Hospital.”  My heart immediately sank and the tears welled up quickly.  My voice broke as I replied, “Buddy, you don’t ever get to apologize for being sick or for me needing to take you to the Children’s Hospital.”  You see, we’ve been chasing mystery symptoms with Everett since January.  Since then, we’ve made so many trips to CHLA that I’ve honestly lost count.  We’ve been through four doctors and countless imaging studies, labs, and tests.  We’ve been panicked and alarmed, frustrated and pushed-off…it hasn’t been a great year of interactions with doctors.  But we have persevered as we always do where Everett is of concern.  

In January, Everett began having intermittent blood in his urine.  Like obvious and copious amounts of blood, without any other symptoms.  His pediatrician, after testing him for a few viruses which can cause blood in the urine, was stumped and encouraged us to contact his surgeon at CHLA.  He wanted to verify that this symptom was not somehow connected to his abdominal surgery last August.  After speaking with the surgeon, she encouraged us to see a Pediatric Urologist.  Getting that approval through our insurance took the better part of a month.  We made our first trip in the spring, only to have a very negative experience with the doctor.  We actually walked out on the appointment, without answers and feeling as if the entire day of missed school and work was a complete waste time.  Our next step was to move on to a Pediatric Nephrologist (kidney doctor).  

Again, getting the insurance approval took some time.  And while we waited, the frequency of the bleeding escalated until it was almost all day, every day.  We were scared.  As a nurse, I was concerned about his kidney function.  As a mom, I was concerned he was loosing too much blood.  We did some intermittent monitoring of these things, all of which remained normal.  We eventually returned to CHLA where the Nephrologist believed Everett might have a very rare vascular condition called Nutcracker Syndrome (absolutely hysterical name).  Under her guidance, we had a bunch of imaging studies done both locally and at CHLA.  We were absolutely convinced that he fit the diagnosis.  However, in June, we were disappointed to find that he did not have Nutcracker Syndrome…and we started back at the beginning again.  The Nephrologist eventually ordered a specific test, which only one company in the United States can perform.  The insurance approval took another two months and on Monday, after another trip to CHLA, we finally got the results and a diagnosis.  

Everett has chronic kidney stones.  He is passing stones almost constantly.  And he’s making two out of the four types of kidney stones.  Thankfully, he has little to no pain when he’s passing them.  Call that a benefit of his many abdominal surgeries, he just doesn’t perceive pain the way most people do.  And his lack of pain was the main reason that the Nephrologist eliminated kidney stones as a possibility when we first saw her over six months ago.  But as is typical Everett, the symptoms he presents are never classic or textbook.  We are beginning some big dietary changes hoping it helps lessen the amount of stones.  Some of this may be futile as we’ve been told that preemies are at risk for developing kidney stones, and micro-preemies are at an even greater risk.  The kidneys develop until 36 weeks gestation, but stop developing at birth, so Everett is 11 weeks shy of proper kidney development.  Because the kidney system is redundant (two kidneys), he has proper kidney function, but they also don’t work like typical kidneys do.  Add to this that we’ve also been told that having an ileostomy and a small bowel resection (Everett has had both) add even greater risks for developing kidney stones.  This is likely to be a lifelong struggle. 

In response to the amount of school Everett has missed because of appointments, tests and trips to CHLA, the school nurse suggested a Chronic Illness Plan.  This plan acknowledges that the child has a serious illness and allows the parent to excuse their absences instead of requiring a doctor’s note (which can be hard to obtain).  Signing papers that stated our son is “chronically ill” was upsetting…very upsetting.  As if it somehow showed, in black and white, what his prematurity has done to his body. But signing it was what was best for Everett and I’ve learned to be thankful for it.  

So many times this year I’ve felt defeated and ignored…as if I was screaming in a room full of people telling me to be quiet.  I actually had two doctors tell me that having a nine-year-old peeing blood just “isn’t that big a deal.”  The truth of the matter is, being a mom of an older micro-preemie can been isolating.  There are these constant, small battles that seem to come out of nowhere.  Battles with the school, battles with the pediatricians, battles with specialists and insurance and access to the things I think he needs. Everyone seems to say “no” before they ever say “yes.”  It can be exhausting.  Out of that exhaustion, I’ve decided to start a older preemie/NICU parent support group.  A place where we can discuss the issues facing our school-aged children and fill the knowledge gap about the inherent risks their births have given them.  It will be a place to feel understood by people who have walked a similar path and in the strength of numbers, we will learn together how to advocate for our childrens' unique needs.  

We’ve never allowed Everett to wallow in his diagnoses (we added asthma to the list earlier this year) or in the way his body works.  We acknowledge his struggles, but also push him to learn how to work because of them, not in spite of them.  In all things, we use his frustrations as motivation to work harder to find a unique way to accomplish what needs to be done.  We’ve focused on remaining always thankful for his life and the opportunities he has to live it.  At the conclusion of the conversation that I mentioned in the beginning, Everett said “You know mom, this is just how God made me.  And I know someday I will understand why He made me this way.”  In the moments when I feel like his burdens are too great, I remember that God built him intentionally and perfectly for this life and that He purposefully and lovingly gave him to us, who will never stop fighting for him.  Everett teaches me so much about the person I want to be.  I continually strive to be the mother he deserves.  In these small moments, I remember with gratitude, everything his prematurity has given to me.  

With Hopeful Change,

The Bollinger Family

A Successful Surgery...

Dear Family and Friends,

As I write this, we are driving home from CHLA. It’s 1am and Everett is sleeping soundly in the car seat next to me. As with all things hospital related, patience is key and going with the flow a necessity. We arrived at CHLA at 1:30pm for a 3:30pm surgery. After getting checked in, we were brought into pre-op where we were warned that his surgeon had an emergency earlier in the day. This had delayed her scheduled cases. Zac and I try to remember that at one time, Everett was the emergency case that probably delayed another family, so we settled in for a long wait and tried to keep Everett distracted from his grumbling tummy. Somewhere around the two hours delayed mark, his surgeon stopped by and apologized profusely. She said it would be another two hours, at least, but if we were ok, she was ok to proceed as scheduled. Slowly the pre-op unit cleared out until it was just us and two other families. As the minutes wore on, Everett became more frustrated with the lack of food and water, but thanks to his iPad, the tears were not constant. At 7:45pm, we were finally ready to go. At the OR entrance we hugged and kissed and told him he was a big, strong boy. He wasn’t scared or crying, but was giggling about a joke the anesthesiologist made. It wasn’t traumatic or tearful and for that I’m very thankful. 

Everett was in the OR for over two hours. During that time they closed the surgery waiting room so we, and the two other families, were ushered into consult rooms on the OR floor. We were placed with a mom awaiting surgery results for her nine-year-old daughter. We got to talking. Small talk at first which then became deep conversations about having a hospitalized child; the feelings of isolation, the financial devastation, the worry, the responsibilities at home, the guilt...the weight of the reality. This woman was drowning in sadness and sorrow. She opened up to us and trusted us with her feelings. I was reminded of the couple who sat by us during Everett’s first surgery. They guided us through that experience. For this woman, who was suffering so much, I wanted to be that guide for her too. We listened. We acknowledged. We understood everything she said. I truly feel that we were delayed today so that we could be there with her. I pray her daughter has full healing. 

The surgery was complete around 10:15pm and Everett’s surgeon said it was a success. She (hopefully) treated the source of his pain and in three weeks time, he can return to normal activities. The anesthesiologist waited until he was asleep to start his IV and took it out before he really became aware it was there. His incisions are closed with a type of glue that don’t have any tape over them. For all these things we are so thankful. We left CHLA around 12:30am. We debated getting a hotel and staying another night, but Everett said he wanted to be home. For how strong and brave he was today, for how little he complained and for how he continues to amaze us with an understanding that is beyond his years, it is a small thing that we can do to drive him home in the middle of the night to reward his courage.

We thank all of you, Everett’s prayers warriors, for lifting him up and encouraging our entire family. Thank you for loving him as we love him. You have each made a difference in our lives. In closing, his surgeon told us tonight that on days when everything seems to be going wrong, when the gravity of her job makes her feel helpless, she often thinks of Everett as a symbol of hope. And with that, we all shed a tear together ❤️.  

Goodnight,

The Bollinger Family

Everett's Fourth Surgery...

Dear Family and Friends,

It’s been over two years since I’ve written about Everett and our fight with prematurity.  The last time I wrote about him, he’d just been diagnosed with ADHD and we were scrambling to find the help he/we needed.  Two years later, we’ve settled into a really great place, armed with a team of experts at school, in the community and at CHLA who have been showing us the way toward living and thriving with the diagnosis.  And thrive he does.  Everett is, as always, doing exceptionally well…amazing us with his smart brain and his miraculous body.  He remains the sweetest child, always eager to please, willing to help, completely devoted to his family and friends, and wise beyond his almost nine years. 

The effects of Everett’s prematurity are always with him.  He/we have learned to work with them and they rarely slow him down.  He understands that his body works a little differently because he was born so early.  He’s been working with an ADHD coach who has helped him learn about his unique brain and the incredible things it is capable of.  However, one day this summer Everett let us know that his body has been in pain for quite some time.  After seeing a doctor here, we made the trip back to see his surgeon at CHLA who found that he’s experiencing a common complication from his previous abdominal surgeries.  The scar tissue in his abdomen is pulling on other structures in his belly, causing him constant pain.  While he says the pain gets better and worse throughout the day, he is never without some level of discomfort.  As a result, we head back to CHLA for surgery on Wednesday, August 22nd.  

Compared to the surgeries he’s already endured, this surgery will be minimal.  It is scheduled as an outpatient surgery, meaning we will get to go home the same day.  But handing your child over to a surgeon is never easy.  It goes against every single instinct in your body to protect your child from harm and pain.  It’s also trickier this time as Everett is old enough to reason but not quite old enough to understand.  He knows that he’s in pain and understands that he needs surgery to make the pain stop.  But he is concerned about the logistics of being cut open, the blood, and the new scars on his body (we will be adding two more).  We are concerned about his recovery (he has to be “down” for a week) and his ability to tolerate his dressings after surgery.  Oh and the thought of putting him back on a ventilator, even for a short time, scares me to my core (completely irrational fear, I know, but it’s there).  

One fascinating thing is that even though Everett was only 14 months old at the time of his last surgery, he’s told us he remembers some components of it.  He remembers the mask over his face with “the gross tasting air.”  And he very clearly has some memory of all the tape that was placed on his body during his first year of life (from IVs, breathing and feeding tubes, his ostomy bags).  Everett has always struggled with adhesive aversion.  Meaning he doesn’t tolerate stickers, tape or band aids on his skin…at all.  His therapist calls it “pre-verbal trauma” meaning while he can’t recall the memory of all the tape on his body, he knows the sensation and is terrified by it.  As a result, he’s rarely tolerated any type of adhesive on his body.  In anticipation of this surgery, we’ve been working with his therapist.  In our session, she placed a band aid on his skin then taught him relaxation techniques to help decrease his anxiety.  He clawed at his arm and whimpered for the entire 10 minutes the band aid was on.  It was almost unbearable to watch.  So now we are looking at adhesive alternatives to get him through this surgery.  

We are so thankful that his surgeon, the one who saved his life eight years ago, is going to do the surgery.  While we haven’t seen her in seven years, I still send her letters and pictures twice a year so she can keep up on Everett’s life.  When I spoke with her before our appointment she brought up the letters.  She said she and her office look forward to them every Fall and Spring.  They keep them all in a file and when a new one arrives they pull them all out to compare and see if he has new glasses (which I find hysterical).  I told her I was excited for her to “meet” Everett again.  I told her he is the sweetest child.  She said “Of course he is.  That’s because of all the love you poured into him to will him to survive.”  At those words, I lost it and cried, like ugly cried, into the phone.  It just goes to show that she too thinks he is a miracle.  I hope someday she shows his pictures to a another family, who maybe has been given as devastating odds as we were, and can tell them that odds aren’t everything and can show them that miracles really do happen. 

If you, Everett’s prayer warriors, could think some good thoughts and send up some prayers on his behalf, we’d appreciate it.  He’s already been through so much and sometimes I feel like the world asks too much of this little boy.  But then I remember that there hasn’t been one thing we’ve asked of him which he couldn’t accomplish in his own way, in his own time.  So I know he’s got this. 

Always with love and gratitude,

The Bollinger Family  

A Letter to the Mom Who Watched Me Bring My Baby Home...

Today is the eighth anniversary of my micro-preemie son’s homecoming.  Eight years ago we walked out of the hospital and into our home.  It marked the completion of one of the hardest times in our lives.  It was the beginning of a journey of love and hope and appreciation for all that we never dared to dream he would be.  We celebrate this day every year, knowing we’ve been given a blessing that not all NICU parents get to experience.  We honor those who helped save his life by sending cards of thanks and encouragement.  And yet today, eight years later, I find myself thinking of you…the mom who watched me bring my baby home.  

You were standing in the hallway outside the NICU door.  I’d never seen you before, but then again, being in an 88 bed NICU distributed among many rooms, we rarely saw other parents.  You were standing with your husband (or boyfriend) and when you saw us, carrying our six pound, six-month-old son in his carseat, you burst into tears and buried your face in his chest.  He instinctively moved himself between you and us, physically trying to shield you from your pain.  It was subtle and obvious all at the same time.  

You weren’t much taller than me.  You had dark hair.  You were maybe a little younger than me.  And in that split second, our moment of joy brought you a moment of pain.  I should have hugged you.  I still don’t know why I didn’t.  I wish, with all my heart, that I had.  I think I was fairly certain that if I took one more step toward that NICU, some doctor would come and tell me that there had been a mistake, that he couldn’t go home, that we would have to leave him as we had done a hundred times before.  I think I meant to smile at you.  I can’t remember if I did.  But I want you to know that I saw you.  

Eight years later, I wish I had taken a moment to acknowledge your pain.  Eight years later, I wish I had taken a moment to hear your story.  Eight years later, I wish I had taken a moment to tell you ours…if anything, to give you hope.  You see, our son was/is a micro-preemie.  Born at 25 weeks gestation, weighing 1 lb. 13 oz.  We transferred to Los Angeles from our local hospital, four hours away, when he needed emergency surgery.  He had been plagued with “preemie problems” and our NICU stay had been anything but predictable.  We’d been through two surgeries, countless close calls, and had been told more than once that he might not survive.  He struggled to learn to eat and to breathe and to survive.  But he did survive.  And now he thrives.  

In naivety, I remember hoping, in that moment, that your baby was a “grower-feeder.”  The reality was, of course, there were no “grower-feeders” at that hospital.  All the babies there were in life threatening situations, including yours.  I wish I had told you that this agonizing moment for you was the first time he’d been in his carseat.  That this moment was his first time wearing pants.  That this moment was our first time seeing him without a wire or tube attached.  I wish I had told you that while no part of this journey had been easy, there had been many moments of immense joy and excitement.  I wish I had taken the time to tell you what someone had taken the time to tell me…that a NICU mama’s job, your only job, was to hope for your baby. 

I’ve often wondered about your baby.  Were they a micro-preemie too?  Were they a boy or a girl?  Had you known you’d end up in the NICU or was all of this, like for us, a complete surprise?  I’ve often thought about you too.  Do you remember that moment?  Did you wipe away those tears, walk back into that NICU, and hope (maybe against some staggering odds) that this would be you someday?  Did you get to bring your baby home?

So, if you were the mom standing by the door of room 303, on 3 West, by the Giraffe Elevator, at Children’s Hospital Los Angeles, on Tuesday, March 16, 2010 around 3:30pm…I want you to know that I saw you.  I saw you and your pain.  I saw you and a small glimpse of the journey you were on.  And I hope, I hope, I hope, that you are celebrating homecoming anniversaries too.  

With Hope,

Sara Bollinger

One Year Later...

Dear Family and Friends,

Just this week, we passed the anniversary of Zac’s first surgery.  Looking from where we were a year ago to where we are now…well it’s been an amazing and exhausting 12 months.  

Zac’s second follow-up MRI showed tumor shrinkage!  A whole 2cm, throughout the main tumor and the four drop tumors.  This is great news!  His doctor seemed pleased, although he said the rate of shrinkage really doesn’t matter.  The tumor should continue to shrink over years, but will probably never completely disappear.  Some remaining, inactive, tumor tissue will be there for Zac’s lifetime, thus resulting in the need for yearly MRIs for the rest of his life.  However, because he is still so close to the initial treatment, he will have two more MRIs just six months apart this next year before he’s able to switch to the longer interval. In these past 12 months, Zac’s had 12 MRIs!  Just imagine how high that number will be by the end of his lifetime.  

For those of you who haven’t seen Zac, he looks very different from a year ago.  He’s lost 68 pounds!!!  And he’s done so in a healthy and sustaining way.  He’s working out at least four days a week, has given up soda, passes on desserts most nights, and now has a normal blood pressure.  We bought him a new wardrobe about four months ago, as none of his old clothes fit, only to find now that his new clothes don’t fit, and he’s in need of a new wardrobe again!  What a problem to have.  He is also able to do more with the kids, including wrestling, tickle fights, and rides on his shoulders.  It is easy to see the boys are enjoying having their dad happier and healthier.  Zac’s pain is virtually non-existent.  He does get sore after working in certain positions and he also has to be careful with jumping, but he has not experienced any of the pain that crippled him before the surgery.  The numbness, which was the symptom which ultimately got him the MRI that lead to diagnosis, is almost gone.  He still experiences intermittent numbness to three toes in his left foot.  However, the neurosurgeon at UCLA said he was surprised Zac got any feeling back at all, so we are very thankful.  Zac is strong, has no activity restrictions, and is kicking butt back at work.  I tell him every day how proud I am of his recovery.  He has worked incredibly hard! 

As the stress of the past 12 months dissipates, I sometimes find myself in a funk.  The same thing happened after Everett came home and I think much of that is finally being able to feel everything I couldn’t while we were actually in crisis.  Survival mode has an amazing way of protecting your mind so you can keep putting one foot in front of the other.  As time goes on, and you learn to feel safe again, your mind opens up with emotions you thought were gone.  The process of acknowledging those wounds is exhausting and overwhelming.  Zac too has been feeling some anxiety and has had a few panic attacks triggered by things that made him remember being in the hospital.  These attacks are becoming fewer but they always leave him feeling vulnerable.  As time passes, I know things will improve for both of us.  Time doesn’t heal all wounds but it sure makes them bleed a lot less. 

I was reminded today of how loving people are and I want to acknowledge how amazing you, our family and friends, are too!  Looking back at the past 12 months (or heck, the past six years), I’m continually humbled by the love you carry for our family.  What we have ever done to deserve such love, I have no idea, but I’m thankful for each and every one of you.  For every challenge we’ve had, we’ve been immeasurably blessed with amazing people who have helped us shoulder the burden.  I only hope we can continue to pay forward the kindnesses we’ve received.  I hope our family can be an example that the heart of life is always good, and that the hearts of people are good too.  

In closing, you might know that six weeks ago we lost our dog, Jack, very suddenly and traumatically to cancer.  On a day when I was feeling particularly angry about his death, Zac’s dad came over to tell me he had had an epiphany about Jack’s passing.  He said that he felt that Jack was gone because his job of holding us together through the hard stuff was over.  He strongly felt that our lives would settle and become calmer.  He believed that Jack was put in our family to help us through the trials of the past six years, and that we have easier days ahead.  I choose to believe this as well.  I choose to believe in happier days and sweet memories to be made.  I choose to believe in the love that holds my family together and in the friends that hold our family up.  Life won’t always be easy (whoever said that anyway?), but I know it will be meaningful and overflowing with love!!!

Love,

The Bollinger Family

Reece Turns Two...

A letter to my son on his second birthday…

Dearest Reece,

Today you turn two…and finally your age will match your attitude.  It already seems so long ago that you outgrew all those parts of babyhood and began barreling, full-force, into becoming a toddler.  And what a toddler you are! 

Not long after you turned one, you earned your nickname “the hurricane.”  It was coined during the two weeks that Grandpa watched you while Daddy and I were down at the hospital.  It’s a perfect description of who and what you are.  You can enter a room, and destroy a room, in 30 seconds flat.  You bring chaos and energy wherever you go.  You are ferociously independent, which earned you a broken arm at 18 months old.  You were attempting to climb the big kid stairs at the playground when you slipped and fell right through my hands and landed on your right side.  Your cast was blue.  The first night, you stuffed black beans into it.  Like I said, you are ferociously independent.  

You are so inquisitive and so smart.  Most of the time, you have a look of concentration on your face.  You are always watching, trying, babbling, and reacting to the world around you.  You rarely ask for help.  If you do, it’s only because you’ve tried it 10 times over by yourself.  You are so much like your daddy that it makes me laugh.  You are talking in four word sentences and most of the time, we know exactly what you are talking about.  If there’s ever any confusion, you are sure to let us know we are not getting it right.  You walked at 13 months and began climbing out of your crib at 20 months.  Luckily for us, after a fall off the other side, you’ve decided it would be better to stay within the bars (for now).  You scrub yourself in the bathtub, use utensils appropriately, insist on brushing your own teeth, and are becoming increasingly interested in potty training.  

You are adorable to look at.  You have these looks of mischief, contentment, goofiness, anger, pout…the list of your many faces goes on and on.  We are never in any doubt as to your mood and you are very good at letting us know how you are feeling.  You test the limits often.  It usually takes two, three…eighteen “nos” to get you to stop something you shouldn’t be doing.  Temper tantrums occur everyday.  You are also so loving.  When Daddy and I get home from work, you run at us screaming our names.  Then we scoop you up and we get a big hug and an opened-mouthed kiss.  You love your blanket and lovies, cradling them while you sleep.  You still have a pacifier.  You love to meet strangers on your own terms, often waving to people in the grocery store and saying “hi” to them  However, if a stranger approaches you, you become quite shy and reserved.

You continue to adore your brother.  You follow him everywhere and often steal his toys when he is not looking.  He plays with you well, until the sharing gets tiresome, and the two of you start swiping and hitting and crying at each other.  Daddy and I feel like referees between you two at times, but I love to see your love for him.  You mimic everything he does.  You two push each other to discover new things and develop new skills.  It’s a wonderfully dynamic friendship that I hope lasts your lifetime.  

I feel like if I close my eyes I will wake to find you three years old and beyond.  You are growing up so fast!  While it does make me sad to see my baby disappearing, I’m also so excited to see the boy you are going to become.  You are anything other than predictable and I know you will have many surprises for us as you become our toddler boy.  We love you so intensely and so completely.  Happy 2nd birthday Hurricane!

Love,

Mama and Daddy

Our Fight With Prematurity...

Dear Family and Friends,

Our fight with prematurity will never truly be over.  Fighting for a micro preemie doesn’t end when they arrive home from the NICU, or when the reach age two (when age adjustments end), or when they graduate out of interventional services.  The fight…our fight, has never stopped.  Our opponent just changes tactics.  Six years later, we continue to feel the effects of prematurity in our every day lives.  While the struggles are no longer life and death, there are struggles all the same as our miracle boy continues to grow up.  

We are SO thankful that he is growing up!  We are so thankful that he is here, that he is functional, that he is bright and loving and everything (and more) than we ever dared to dream he would be.  But we walk a fine line between typical and delayed, as Everett continuously bounces from one side to the other.  In an attempt to help Everett achieve more typical skills, we have had him in private occupational therapy for over a year.  Very early on, his therapist diagnosed him with Sensory Processing Disorder, which is a dis-regulation in how the body interacts with its environment.  For Everett, it really made sense.  We pushed the therapy, hoping it would be an answer to so many of his struggles.  Then, in February, Everett began displaying what appeared to be seizure-like activity.  While watching TV or riding in cars, his head would jerk, his mouth would clench, and he would go to a place of complete inattention.  It scared me.  Shortly after this began, Zac was diagnosed and our world was spinning so fast that it, and occupational therapy, got pushed to the side while we fought Zac’s fight.  In June, my parents brought it back to my attention as they were scared too.  I recorded a few episodes, which by that time were increasing in frequency, and took it to our pediatrician.  We were referred to a pediatric neurologist.  We made two trips to CHLA for seizure testing and a neurological consult.  Thankfully, Everett was not experiencing seizures.  These episodes were involuntary movements, called tics, which can be normal for his age group.  But the neurologist was concerned about Everett’s developmental delays (he remains two years behind in fine and gross motor skills).  

The neurologist diagnosed him with developmental dyspraxia, a delay in the communication from the brain to the fine motor muscles.  In the testing, Everett was unable to make the “ok” sign with his hands, as he couldn’t control his muscles enough to do it.  It made me tear up to watch him frustrate, as his mind knew what to do, but his body just wasn’t listening.  He is so bright…everyone has told us that…but he is stuck in this body that doesn’t work as well as it should.  I can’t imagine what he feels like.  The neurologist also said he had several indicators for ADD/ADHD, and she felt he should be tested.  We completed this testing a few weeks ago.  Everett does have ADHD.  Contrary to what most people think about ADHD, it isn't inattention to people or to the environment.  It is hyper-attention to everything in the environment and an inability to filter out what is important vs what isn’t important.  To put it simply, a child with ADHD hears the white noise of a fan and categorizes it with equal importance to that of his teacher.  Therefore, his brain takes in everything constantly.  This constant barrage of stimuli makes distraction easy as the child attempts to respond to all the stimuli equally.  Again, I can’t imagine what he feels like.

So where do we go from here?  Well, we are slowly figuring that out together.  We attempted to get Everett an IEP (and access to therapy interventions) at school.  We were told that because he is “cognitively intact,” meaning he is learning at the same rate as his peers, that his physical delays aren’t of concern.  It doesn’t matter that at six years old, he still can’t run properly.  We were told that he literally has to fail before the school can help him.  We were successful in getting a 504, which is an accommodation plan for his unique needs.  This allows him to use a wobble stool in class instead of a chair, allows him frequent movement breaks so he can get his wiggles out, offers him a weighted vest that gives him sensory input to calm his body.  Having a 504 also puts him on the radar of the the occupational, speech therapist, psychologist, and nurse so they are watching his progress.  He also has an incredible teacher who is happy to do many therapy exercises with him in class.  

There is such a stigma associated with ADD/ADHD.  Everyone has an opinion on the validity of the diagnosis and how best to treat it.  I know for us, this diagnosis has been an exercise in putting aside our own preconceived notions as we look how best to represent Everett’s needs.  As his parents, we are not ashamed.  It is our job to protect his self esteem and set the example that his ADHD will make him uniquely gifted.  We continue to research interventions to help him overcome his delays.   We continue to look at homeopathic and pharmacologic methods to help him settle his body.  We continue to make hard decisions with our best intentions.  We continue to be thankful for his life and the amazing things that he has accomplished.  We continue to push him to be the best person he can be.  We continue to fight every single day against his premature birth.  Prematurity never ends.  The fight rages on.  And we will never give up the fight because his life is worth everything!

Love,

The Bollinger Family  

A letter to my son on his sixth birthday...

Dearest Everett, 

When I think back on this past year, especially the past six months, I don’t know how Daddy and I could have made it through without you.  This year most especially, you have been our touchstone of normalcy, our endless fountain of love, our constant source of comic relief, and the one person we could count on to be flexible with the endless changes in our lives.  You have gladly stolen our focus from other parts of our lives and helped us to remember that with a little laughter and a lot of hugs, we can conquer anything.  

You’ve turned into quite the silly boy.  You really enjoy making people laugh and you are always checking to see if people are smiling.  You adore being around other people and thrive on interaction with both peers and adults.  Each night before bed, you ask me, “What are we doing tomorrow?”  If I ever say that we have no plans, you are sure to prod me into making some, begging for playdates with a number of your friends.  You love anyone and everyone.  You are quick to make friends.  In fact, everyone you meet is your new “best friend.”  And you really mean it.  In that moment, the other person is your complete focus and you strive to make them happy.  

At times your silliness has been a challenge, when you’d rather goof off than do do homework or sit properly in class.  You are the class clown, the one who takes everything a step further on the giggle scale.  We are trying to teach you that there is a time and place for humor and that it isn’t funny to act less smart just to get a laugh.  You have endless energy.  You are in constant motion.  You struggle to control your body and, at times, it really shows.  You participated in a year of occupational therapy aimed at helping you learn to move your body and process sensory input.  We bought you a trampoline, a hammock, and made you a tire swing to help you here at home.  You worked very hard and we saw some improvement.  But you continue to struggle.  We have had some testing done and still have some more testing to do.  But no matter what the results, Daddy and I will always fight and advocate for what you need.  We are committed to doing whatever it takes to make your life as successful as it can be.  And whatever dreams you might have, Daddy and I will help you achieve them.  You are capable of anything you set your mind to and we will never let you forget that.  

You are an amazing big brother, with a little brother who looks up to you so, so much.  Reece follows you constantly.  While you’ve found it annoying, you’ve also been so tolerant and kind and loving.  Each night, you kiss him before bed and tell him, “I love you brother!”  You have your spats as siblings do but you really do seem to understand that he is watching you, looking to your example every day.  And you seem to take that responsibility very seriously.  

You’ve suddenly decided you want to be more independent and are, at times, pushing us away.  You are finding the courage to try new things that in the past you’d never even considered.  You are also becoming more assertive.  We’ve even had a few arguments because of your attitude.  You like to ask “but WHY?” when you don’t get your way.  While this can be challenging for us as your parents, I love seeing you find confidence in yourself.  I also love to see you questioning your world.  You’ve become more brave (if that’s even possible).  The things that used to scare you (like nail cutting, haircuts, teeth brushing) you’ve begun to embrace as your own responsibility.  In that, we’ve found it easier for us to accomplish the tasks together.  You like to take on your fears, owning them physically, so that you can overcome them.  We couldn’t be prouder of you.  

When you were born, you defied the odds by being the baby who lived.  Now at six, you continue to defy the odds by being the boy who thrives.  Your life is an inspiration.  Your attitude is infectious.  We are so privileged to be your parents.  Our hearts beat with love for you every moment of every day.  Happy 6th birthday, Everett Zachary Bollinger.  

Love,

Mama and Daddy

Weathering the Storm...

Dear Family and Friends,

I am well overdue for writing an update on our family.  You’ve all been so kind and thoughtful inquiring about how Zac is doing.  So let me tell you, he’s doing AMAZING!  He returned to work four weeks ago, full time, with just a few physical restrictions.  He’s been rocking it since the moment he stepped back into that dealership!  I couldn’t be more proud!!!  

His back pain is all but gone.  While he still has “soreness” it is nothing compared to the debilitating pain he was experiencing before the surgery.  He has also found himself able to work more quickly and efficiently.  Neither of us had noticed, since his condition had been such a gradual decline over such a long period, that he was having difficulty keeping his stamina up at work.  That was reflected in the number of hours he was billing.  Now that he’s virtually pain-free, he’s returned to billing hour amounts that he hasn’t reached in two years.  Woohoo!  He is also more content at work than he’s been in quite some time.  I think a huge part of that is that for the past four years he’s been going to work every day knowing that his pain would be almost unbearable.  I can’t imagine how much stress that put him under.  But he still did it, for our family.  I have so much respect for how much he suffered to support us.  He’s still turning down those jobs that require too much lifting or bending or odd positioning that he knows will fatigue his back.  The dealership has been very accommodating in that aspect.  They are thrilled to have him back.

Zac has also become so motivated to maintain his overall health.  We are making big changes in our diet and our environment to optimize the health of our family.  We aren’t going nuts, but we did remove all the soda from our house.  We are eating planned, balanced (organic when possible) meals with more veggies than I’ve ever cooked.  We’ve also started removing chemicals from our environment in an attempt to live a cleaner life.  Zac’s been faithfully working out five days per week.  He has lost 35 pounds and looks fantastic!  He has motivated me as well, so I’ve been exercising in the morning before work.  Overall, we both have more energy with these new changes.

Coming out of the storm, I am beginning to see the benefits from this huge challenge.  Zac is taking his health seriously in a way that I’ve begged him to for years.  While our marriage was strained after his hospitalization, I can now see how much we’ve both learned from the reversal of roles we experienced while he healed.  I now understand how much stress is involved in being the primary source of income and how difficult it is to change gears from work to home the second you step in the door.  Zac better understands how much is involved in running a house with two small children, their schedules, needs, and selfless care.  We are both more eager to share the burdens, more willing to compromise if the other one seems tired, and have walked (a little) in the other’s shoes.  It has helped us grow in both love and respect.  And for that, I am thankful.  

I’m thankful too for the huge amount of personal growth I’ve experienced.  I feel like a more grown up version of myself, albeit slightly haggard :-)  I am acutely aware of how strong I am and how much I am able to endure.  After Everett, when people used to tell me how strong I was, I’d shyly disagree.  Now when people say how strong I am, I say I know no other way to be.  And that’s the honest truth.  I know no other way than to survive.  And I’ve found pride in the person I’ve become.  I’ve also learned that it is ok to not be ok.  It’s also ok to tell others that you're not ok.  In this comes a share of the burden and suddenly accepting help doesn’t seem so shameful (the acceptance of help is a learned skill).  It is also ok to be angry, frustrated, upset, broken, and sad.  None of those emotions mean that you’ve given up or are unappreciative of the blessings in your life.  Those emotions are real.  And in acknowledging them you find growth and maturity.  In feeling them, you develop a profound appreciation for happiness.  

I’ve also learned that life won’t always be easy… there isn’t a quota for suffering.  That being said, we’ve had our fair share of challenges.  But we’ve weathered them all and come out better because of them. I continue to believe that even in the most desperate of circumstances, there is a blessing and a benefit if you look hard enough (or long enough) to find it. While we look, it is our job to keep the faith that life, ultimately, is good.  And I believe that, with all my heart.  

The boys are doing well.  Reece (the baby) broke his arm four weeks ago and ended up with he most adorable little cast.  He’s all healed up now and is probably missing the weapon that he used to beat on his brother.  Everett has started kindergarten and is loving it.  He's also missing all four front teeth at once!  There are more changes ahead for our family but we will adapt and weather them all in love for each other.  We choose happiness knowing that the heart of life is good.  

Love,

The Bollinger Family

Complete...

Dear Family and Friends,

Zac completed his radiation course today!  He is so happy to be one day closer to feeling better.  I am surprisingly very emotional.  Seriously, I could cry.  Such a relief to have that behind us.  Such hope looking forward to better days ahead.  

We will not know if the tumor is gone for some time.  Radiation works over months even after the treatment is complete.  So for now, we pray this will be the final step toward healing.  

Love, 

The Bollinger Family

The Countdown Begins...

Dear Family and Friends,

The countdown to the end of radiation has begun!  Zac has five treatments left.  Woohoo!!!  The end of radiation cannot come soon enough for him and for our family.  For the past three weeks, he’s been battling almost constant nausea, occasional vomiting, muscle soreness, and fatigue.  Zac reports that he feels like he has the flu, especially in the evenings and most especially on Friday nights.  As the effects of the radiation are cumulative, it makes sense that his worst days are Fridays.  He spends the weekend recovering, then just when he’s starting to feel better, it’s back to treatment.  Not a fun cycle.  His skin is a little burned as well.  Looking at his back, it is easy to tell exactly where the radiation is going.  He has an oval shaped burn from the top of his scar to the top of his sacrum.  It is warm to the touch and he says it itches like crazy.  We are putting aloe on it for comfort.  I’ve been giving Zac some tips to help battle the nausea from my experiences with morning sickness.  So far most of them have worked!  I try to be very sympathetic with how he is feeling but I’ve also made a few comments about how he’s getting a taste of what it’s like to be pregnant ;-)  

Being tied to treatment everyday has been hard for Zac.  He feels trapped and confined.  Add to that that he doesn’t feel like himself and can’t do the things he wants to do, he just feels like so much of life is a big tease.  Having him less mobile, less able to help, plus working more has put a lot of pressure on me.  Zac’s doing his best but there’s just a lot to be done.  So I’m looking forward to radiation ending too so that life can get back to something closer to normal.  

Zac’s physical therapy continues to go well.  He’s developing and defining muscles that he lost while in the hospital.  He is very motivated to keep the weight he’s lost off and he’s really committed to working out and strengthening himself.  I’m proud of how hard he’s working.  He will continue physical therapy until he’s scheduled to return to work in early August.

His final treatment day is Wednesday, July 8th.  I’ve started a countdown calendar to help keep his eye on the prize.  Thank you all for continuing to pray and check in with our family.  We are always so humbled by the love you have for us and our children.  We’ve learned so much through this experience…mainly that we are surrounded by some pretty amazing people!

Love,

The Bollinger Family

After Seven Treatments...

Dear Family and Friends,

Zac has had seven radiation treatments thus far (one less than scheduled because the radiation machine was down one day last week).  He’s already experiencing side effects, which we were really, really hoping to avoid.  He has been intermittently nauseous, has thrown up once, is having some pretty bad GI upset and is starting to get a little burned on his back.  No fun :-(  

But in all that there is good news. Overall, he’s tolerating it pretty well.  The extreme fatigue hasn’t hit him yet (still hoping that’s a few weeks off) and according to the oncologist, the nausea should stay pretty stable and not get worse.  So that’s something.  He also had another MRI of his cervical spine to check for tumors there, because in his previous eight MRIs there was never a clear shot of that area, and it showed no tumor.  Another great thing.  He is progressing nicely with his PT and has really embraced rebuilding his strength and his body.  On days he doesn’t have PT, he is swimming or walking or sometimes doing both!  He is also embracing this time at home to focus on the boys and is spending quality time with each of them.  Radiation happens each weekday at 4:15pm in SLO and only takes about 30 minutes.  He’s usually back home by the time I get off work and we have a little time to play before dinner, baths and bed.  

We have so much to be thankful for!  Those long days in the hospital seem so far away as everyday life has replaced those dark memories with happier ones.  Thank goodness for our children who keep our focus forever forward…and for making us laugh every day.  Thank you for your continued prayers and love for our family.  

Love,

The Bollinger Family