Pre-Op

So, I am obviously not the best blogger as I... a) don't blog regularly and b) honestly, I forgot I had started a blog. Between the magazine and the book, I forget what I have written and for which project. But while I was up with Holden tonight rocking him back to sleep I rubbed my hand across his tiny neck and felt the raised scar that now takes the place of what was once perfectly smooth porcelain baby skin. I became overwhelmed with emotion and wished I had a place to put my thoughts down and then I remembered... oh yeah.. I do. So here it is: (in all its jumbledeeness because I am sleepy from staying awake to write this instead of going back to sleep)

Since we started the magazine a little over 3 years ago, my email inbox has been the destination spot for hundreds of "worst case scenario" stories from families across Northwest Arkansas. A lot of them have had triumphant and inspiring outcomes but many of them were full of loss and heartbreak. I have cried with each of these parents and felt their pain, all the time knowing full well that I would never truly understand exactly what they were going through. And.. honestly thanking God everyday that I was able to comfort them instead of being the one needing comforting.

Because of that I almost feel foolish writing this post because we are so ridiculously blessed with the outcome.

When Holden was about 4 months old we were on our way home from the Tulsa Zoo when my Mom asked if we had been watching the spot on his neck at all (apparently Super Nana had noticed it before this and assumed we had too)

Spot? What Spot? I hadn't ever even noticed anything even slightly off when it came to my beautiful, perfect little boy. But there it was -- a giant bulge underneath the sweet pale skin on Holden's tiny neck.

I texted pictures to every doctor that I had the cell phone number to. They all said to watch it but it was most likely just a reactory node and he might have a cold or little infection and it would go away. I wasn't comforted and a simple Google search did little to comfort my already racing mind.

"Hodgkin's lymphoma, previously known as Hodgkin's disease, is a type of lymphoma, which is a cancer originating from white blood cells calledlymphocytes." - In a nutshell -- cancer!

It didn't matter that all the responses to my texts were meant to be reassuring. The fact was it could be something much worse. I was petrified because, again, my inbox continued to fill up weekly with "I didn't think it could happen to my child" stories.

We watched as it continued to not only remain but to grow which meant that it most likely was not caused from bacteria or an infection. Antibiotics were prescribed by one doctor to see if that helped, but when it didn't we were referred to see Dr. Manning at the Ear, Nose, and Throat clinic. He was concerned by the size but wanted to give it 6 months to see what it would do -- our only option was to put Holden under and remove it -- a surgery that was simple, but done on a baby was not something to jump into.

Fast forward 6 months. The follow-up visit was what we expected and feared. The lymph node had grown in size, not decreased, which meant removal and a biopsy.

"It's not cancer though right" I remember Jonathon asking. I waited for the "Of course not, this is all just a precautionary measure" response from the doctor but all I got was "I can't say at this point, it is really large, so we just have to remove it and go from there."

My mind and heart went through every story ever sent to me to be published in Peekaboo. "My child was perfectly heathly until one day.... " "We never saw it coming and then found ourselves fighting for our child's life..."

Was this our Peekaboo Personal Story? Was this our "Holden was such an amazingly sweet boy and he brought so much joy to people's life, he was put here for a reason..."

No! Stop It! I couldn't think like that but I also couldn't help but not to. We decided not to tell many people, because honestly we didn't want to think about it. Our fears were two fold - one something would happen with the anesthesia or during surgery and two - that the biopsy would come back positive for cancer.

When I told Ava that Holden was having surgery she immediately responded by saying "Oh, No.. that is not good.. we need to call and cancel that." Oh how I wish we could.

We wrestled with the fears of the "what if" every day leading up to the morning of surgery. Comments were made in passing that we were doing the right thing and if something went wrong we couldn't blame ourselves. That if it was something worse we would just throw our entire lives into making sure Holden got better. Every conversation like that ended very quickly and with a long silent pause at the end with a quiet prayer to God to watch over our baby boy.

The night before surgery Holden was not to have anything to eat or drink and since he still nursed at least twice a night I knew that it was not going to be easy. I just didn't know that it was going to be as hard as it turned out to be. Holden refused to go back to sleep when he woke up at 3am and since we had to leave for Fayetteville at 6:15 it meant we were up for good at 3.I didn't mind because I wanted to spend every minute with Holden before surgery.

We arrived at the Surgery Center at 6:45. Pre-Op is an experience I will never soon forget. Jonathon and I sat with Holden in a tiny space between two curtains and removed his little pajamas and replaced them with the miniature version of a hospital gown. The woman next to us kept us pretty entertained and our mind off what was to come with her complaints that she had to remove her teeth for surgery and how she wanted to make sure no one stole her shoes.

After citing Holden's short medical history to one nurse, and sitting quietly as the anesthesiologist went over her role in today's events, another nurse then came in and gave Holden what they called "goofy juice." She was so used to children spitting medicine back at her that I watched as she tried to figure out the best angle and approach to tricking him into taking it. I reassured her that Holden, at this point, was very hungry so it wouldn't be hard. Sure enough he not only downed the syringe of medicine he smacked his lips for more.

A few minutes later I was asked to do the hardest thing I have ever done to date -- I handed my baby over to a complete stranger who would take him to a room I would never see, put him to sleep with medication I didn't know how he would react to, and then cut open his neck and remove a part of him that could possibly tell a terrible tale.

I was numb as Jonathon and I walked back to the waiting room to sit with my Mom and my sister who had been with us all morning. I couldn't think and my anxiety levels were at an all time high. I hardly relinquish control when it comes to my kids enough for someone to even change their diaper little else this!

Before we could see Holden we first saw Dr. Manning. Everything went great and Holden was recovering, but the lymph node was even bigger than he suspected. It was the size of an egg which was alarming but he was confident that the results would be in our favor. I was still scared but my attention was completely on counting down the minutes for Holden to wake up so I could see his sweet face and know that everything was okay.

When an eternity had passed and a nurse motioned for us to follow her through the double doors that had separated me from my sweet boy I was elated to see my giant baby sprawled out across a nurse walking towards me. He still had his IV and a giant bandage covered his neck. He was now crying.

"Can he have something to drink to comfort him?" I asked.
"Sure do you have juice or a cup of milk?" the nurse asked looking around at the empty table.

"I am still nursing."
"Oh."
The look was priceless as the nurse looked at the giant man child on my lap. I knew judgment was being passed.

After I had comforted Holden back into the deep sleep that the anesthesia had taken him to another nurse came in. She told us how beautiful Holden was and how lucky we were. I knew she was right. Then she told us about her own baby at home. Only her baby was 36 with cerebral palsy. That she still changed diapers, fed her, and watched over her closely. She was a single mother and while tears welled up in my eyes when she spoke of her daughter, her face lit up with joy when she expressed the deep love she had for her sweet baby girl.

This woman was like an Angel to us that morning. She took out Holden's IV without him even flinching and then told us she would sneak us out with him still in his gown because she couldn't bare to wake him up to change his clothes. She hugged us good bye and I couldn't stop thinking about how happy she was despite the fact that she had so much heart break in her life. None of it seemed to matter in that moment as she comforted us. She loved life all the same and was thankful for each day she had with her daughter. She reminded me how precious our time is with the children that God gave us and no matter what nothing could change that.

After 36 hours of pacing and praying, Dr. Manning called with news that Holden's biopsy came back negative for cancer! I had never been more relieved by or overwhelmed with emotion after hearing such a short phrase. I remember Jonathon hugging Holden and telling him, with tears in his eyes, and an inflection in his voice, that he was so happy that Holden was going to be able to grow up to be a big boy and he would be there to see it.

The doctors aren't sure why the node grew as big as it did but they do know what didn't cause it and that is enough for us.

A raised, purple scar now reminds us daily how lucky we are and how we should embrace every moment we get to spend with the people we love because it can so quickly be taken away. How good health is not something we should take for granted. It also made Jonathon and I want to do and be even more of a light in the lives of the families who might be living in fear for their child's lives, because, while we only experienced it for a few months, it is quite frankly the worst feeling in the world!

I know that God had his hand over our little family through this entire experience. That he knew all along the outcome and that the little scar that remains is there for a reason -- part of that reason is the reminder I mentioned but I have a feeling there is even more to come.

Since the anesthesia didn't wear off for a couple of days Holden did receive a few more bruises when he ran into a few walls and tables but all and all Holden is back to being his sweet self and the giant lymph node that terrified us for almost a year is gone!

So, in the wee hours of the night when a deep sleep was replaced with Holden's cries to be held and rocked, I was more than happy to oblige.

Good Morning Daddy

When Holden woke up last night at 5am it must have been right in the middle of my REM sleep, because, even though I was conscious enough to change his diaper and nurse him back to sleep the whole idea of putting his feet back into the right leg holes of his pjs and zipping them up was out of the realm of my functionability. 

So, I layed him down wearing his footy pajamas. They now fit over him like a robe with only his arms in tact. I covered him up to stay warm, said "nighty night" and closed the door. 

At 7:15 a very familiar cry resounded on the baby monitor but it wasn't an "I'm awake come and get me now kind of cry" -- more of a "hmm.. I am awake, but that's okay, no need to hurry" kind of cry. So, I didn't. In fact I fell back asleep for another 5 minutes before I heard another sound. I rechecked the video screen of the monitor and found Holden sitting up playing with his dinosaur. It was such a sweet sight to see him so content being by himself (because it is a rare sighting) that I showed Jonathon and we both gave a big smile before I turned the monitor back over so I could close my eyes one more time.

Fast forward 20 minutes and another cry. This time I asked Jonathon to go get him because he had waited long enough and I was sure he wasn't falling back asleep. My heart was so happy. Thinking of little Holden just sitting there with his dinosaur that he knew said "rroooarr." Love. 

Jonathon picked him up out of his crib and grabbed a diaper before heading back into our room to change him. 

"Where are the wipes? I think he pooped." I heard as he came closer to our room. I reached down to grab them when I heard "HOLDEN! No Bubba!"

Holden might have been playing with his dinosaur during the first 2 minutes, but for the next 20 to 30 he had been entertaining himself with "homemade playdough." You see.. the Holden Factor recently discovered that he could take his own diaper off, which is precisely what he did this morning and then painted his bed with the contents. 

Since he hadn't noticed the missing diaper when he picked him up because his bum was covered with his draped pjs, Jonathon's bare chest was now the same shade of brown as Holden's legs. 

"Good Morning Daddy!" - Love the Holden Factor

Fear

Yesterday, one of my worst fears was realized, only it wasn't by me but by another local mother. I do not know the mother personally, to be honest I don't even know her name, all I know is that she lived my worst nightmare and my heart broke into a million pieces for her and her loss.

At 2:30 yesterday, a soccer goal post fell on a little boy during recess and only hours later he was pronounced dead. This poor family woke up, most likely like any other day, got dressed and left for school and then the most tragic thing happened and this sweet child never came home again.

I have always had an intense fear of death and dying. Not necessarily my own death but losing those around me. When Jonathon leaves in the morning with Ava to take her to preschool I hold my breath and say a prayer that they return home to me safely. When I am not with Holden or even in the same room as him I worry that a freak accident will happen and something terrible will come to fruition. I check on my children at least 2 times a night (more with Holden because he actually still wakes up even more than twice) just to make sure they are okay. Is this a healthy way to live? Of course not. And while I would love to have every blog entry end with a "self-help, no-fail, solution" like the end to every episode of Full House or Saved by the Bell, I am afraid my desire to be more transparent as a "real" parent and person will leave this one unresolved.

I fear the worst and pray for the best but sometimes the fear is crippling and when tragedy strikes, like it did yesterday, it becomes heavily intensified. Because, even though it most likely won't happen and everyone will grow up healthy and happy and live long productive lives I can't help but worry because the reality is -- it does happen.

I don't think I can make my fears go away, the only thing I can really do is embrace every moment that I have with my family and work to live without regret -- a tall order I know. When Jonathon does something that irritates me, instead of snapping at him, I hold my impulsize tongue and think "would this be worth saying if this was the last thing I had the chance to tell him?" -- most of the time the answer is a big "NO!" except of course when he crunches his pretzels too loudly or shakes his Sprees in his hand over and over and over again before he tosses each, single, solitary little circle piece into his mouth --- those things just have to be brought to light.

And when Ava makes a giant pile of everything she can possibly pull out of her room in order to make her own home in the living room I try to just enjoy watching her create and be the little girl I love instead of feel frustration that the just cleaned room is now in a state of chaos. This is difficult at times because, since I don't want to say anything I might regret I also don't do a great job of disciplining. This means the "you can get it out as long as you put it away" rule almost always ends in "okay, well, if you just read a book to your brother I will clean it up."

Then there is Holden's sleep pattern or lack there of. I could easily be frustrated with the fact that I haven't slept for more than 5 straight hours in over a year and that it is actually more like every 3 hours... but I love and appreciate every extra hug and cuddle I get.. even into those wee hours of the night. Now, don't get me wrong, a few inappropriate words have been said and a tantrum or two have been thrown on my walk to his room at 2am but I have never left his bedside wishing I hadn't spent those few extra minutes with him.

I wish my fears were limited to the ones I had when I was 6. I wish my biggest concern was a monster in my closet or a scary creature that had taken up residence under my bed. Unfortunately I still have the big imagination I did when I was that age but now it is now filled with all the worst case scenarios of a much bigger, scary world with greater consequences than an eaten dolly.

My heart will continue to ache for the mother of the young boy that passed away yesterday. I can only thank God that Ava came home from school yesterday. That Jonathon made it home safely from work and that Holden only got a bruise or two instead of something worse when he fell from the second story of Barbie's mansion.

I plan to keep this post the last of the "less than light-hearted" but this was weighing heavy on my heart today so I decided to put it in my new shiny diary (blog).

Blogging Attempt #765

Ok. Deep Breath. Big Sigh. And Go….

I have always wanted to blog like the rest of my “big girl” friends but have never found enough willpower to do so. It is so much easier to just put a few pictures up on Facebook as a quick summary of our day. Some people are just more of a visual learner so I guess I just figured I was catering to that demographic instead of the “readers” – personal choice. Not because I am lazy.

I never even really kept a diary growing up. Don’t get me wrong I had plenty. They were so cute and the little lock was just too fun to unlock and relock. I could pretend I had a secret life. Only if you took the time to read it you would find a blank book with random sentences on random pages and lots of doodles. You kind of have to have something going on in your life in order to have something to write… and let’s just say I was pretty boring as a child… and teenager.

But now with two children…. Princess Ava and the Holden Factor… there is plenty going on so I guess I will let the people who are “readers” into my world.

I will start with yesterday as it is a typical, lovely, chaotic day for the Enderle Family. Ok. Deep Breath. Big Sigh. And Go…

Blogging Attempt # 765

It was a normal Monday. Holden had somehow gained enough tip to his tippy toes to reach into Ava’s Sea Monkey container and splash the poor shrimp like creatures all over the breakfast table. In need of a day out of the house we decided to make a quick trip to Tulsa to pick out stone for one of the houses Jonathon is building. It was an errand we had put off for too long so we decided we would make a day of it -- do a little shopping, nice dinner, the works.

Looking at stone took over an hour, which is about one hour longer than Ava and Holden had the patience for after the car ride there.

Finally off to the mall. Ava in the stroller because she said ‘her legs were just too tired from all that sitting’, and Holden in the Ergo. I loved baby wearing when my baby was the size of a baby, but now that he is officially the size of a man child and about half my height it looked odd and equally as uncomfortable for both of us. So, we took a little break and stepped into the Apple store to buy a new battery. While Jonathon stepped out to make a phone call I let the kids play games on the computers set up for the little ones. They both did great and we little sweethearts sitting at their own little iMac. I couldn’t have been more proud. I even overheard tons of “awe look how sweet they are” and “what smart, well-behaved children.” But we must remember we are talking about the Holden Factor here so things obviously had to take a quick turn for the messy.

When he stopped calmly moving the mouse from side to side and tapping lightly on the keyboard and started banging the mouse over his head onto the table I had to pull him away. Mistake #1. He lost it and threw a fit like I hadn’t seen. So, I reluctantly gave in and sat him next to his sister to watch her play Dora’s Birthday Party. Mistake #2. Ava is a great sharer and an amazing big sister, but get in the way of her game play and it isn’t pretty. She grabbed the mouse back from Holden’s little hands sending his mouth into the table. So, the fit he had just thrown – the one that was the worst I had ever seen – was quickly upgraded to the new “worst fit ever seen.” Full blown screaming in the middle of the packed Apple store. When Jonathon made it back in he was probably hesitant to claim us as his family and I am sure I saw him tempted to keep walking past – I would have.

I stopped caring about the condition of the mouse and sat Holden back down at the computer to do as he pleased so I could finish my purchase, when the calm, shy sales rep got my attention and said:

“Umm… your son has a little… ummm”

“Yeah, his nose is a little runny, let me get a wipe.” I said reaching for his bag.

“Umm… no… umm he is bleeding.”

Ahhhh. I looked down to find globs of blood pouring from his little mouth onto the keyboard as everyone watched. I grabbed him and ran to the bathroom leaving Jonathon to Purell the table.

I didn’t lock the bathroom door because I was just going to wipe him off. Mistake #3 or maybe it is now technically 4. A large man in a big hurry to actually use the restroom (must have just eaten at Papa Chicken in the food court) pushed the door as hard as he could sending me and Holdee into the wall. Nice.

I was no longer in the mood to shop so we decided to grab a bite to eat and then stop at Target for Tylenol and milk for the long ride home.

After making it back to the car we realized we didn’t have cash for the toll (we had already counted every penny to get through the toll – didn’t realize it was $2.50 instead of $2.25 -- now I know) So, Jonathon braved the cold night air one more time to go in for cash. I was sitting in the back seat and needed to grab something out of the front… when Mistake # let’s just say 100 by now because I spared you the details of dinner where there were at least 95…

I unlocked the door and opened it when…. Cue the loud screeches.. the car alarm went off. Holden thought it was funny and Ava clung to her ears and yelled “what is that noise.” I looked out of the back window, trapped in my own car, for any sign of Jonathon. Instead we got the attention of the night security guard who I watched in slow motion, or maybe he was just walking super slow, heading toward the scene of the crime. Seriously? I am about to have to explain this… ugh. Then like a knight in shining armor who rescues the princess at freakishly just the right moment before she dies or marries the mean guy, Jonathon stuck his head and hand out the sliding glass door and turned off the alarm. The guard stopped in his tracks and turned around. Disaster averted.

So, a few dozen sea monkey casualties, a few freak outs, a bloody lip at the Apple Store, and almost being arrested for Grand Theft Auto (okay maybe that is a bit of an overstatement) the day was ready to come to a close. Sine it was already past bedtime, Princess Ava and the Holden Factor dozed off into dreamland leaving Jonathon and I to reminisce. Even though the day had been a challenge we couldn’t come up with a time in our lives when we were happier than we are right now.

As I write this, Jonathon is picking Ava up from preschool and Holden is on the floor by my feet eating a slice of apple. Even though I sometimes wish I had a few more freedoms I miss my children terribly even when I am away from them for a few hours. There will be plenty of time to be bored when I am older so for now I will embrace every hug and “I love you” and take the challenge of Mommyhood head on!