A Glimpse of Heaven

One year ago today we made the hard decision to split our family up for a few weeks.... as Aidan was not doing well at all, and we were at a loss.... Both Aidan and Ty had been in the hospital here in Sioux Falls for the first time, and while Ty got better, Aidan did not.  So we decided he needed to go up to St. Paul Children's Hospital in Minnesota.

Jason took Aidan by himself while I stayed behind with Tyler and Cole.  The three of us were sick with a bad cold and we did not want to bring any germs with us.  It was the hardest thing to do.  To know I wasn't going to be at Aidan's side.  I knew Jason had him though.  

A few days later Jason urged me to come up, despite us all being sick, for all the doctors thought Aidan wasn’t going to pull through....

Aidan at St. Paul Children's ~ November 2011

We spent a few weeks up there, living in an apartment a few blocks from the hospital.  We spent Thanksgiving there.  The doctors did many tests to see what was the root of Aidan's high CPK levels, his arching, crying, bleeding ulcers, sweating, extreme kicking (in which he broke his leg!)....  

We learned a lot about Aidan and Ty's condition while we were up there.  The doctors left no stone un-turned.  But the fact of the matter was, our little boys' condition is very much a mystery.  To us and to doctors.  

We also learned a lot about family.  Friends.  People giving selfishly for us.  We were looked out for, and cared for, so much so during that time.  We will never forget the generosity of our family, friends & even strangers during that time (and always!).

Aidan came home from the hospital the first week in December.  He had his first airplane ride.  And then his first day home was his Make-a-Wish party, where he received his wish of a whirlpool!

The next two months Aidan spent on hospice.  We were exhausted as a family, but praying Aidan held on through Christmas.  It was Cole's first Christmas, and I could not imagine not having all three of our little boys with us for the holiday.

Aidan made it through Christmas and when January came, I prayed he would make it to Cole's first birthday on the 29th. One more milestone.  Just make it one more milestone.  He was three years old at the time, and barely 16 pounds.  He had been 23 pounds.  He was kicking constantly, sweating, throwing up, crying non-stop.  Bleeding internally.  Muscles cramped up.  It was awful to watch.  He never slept, and medicine did absolutely nothing.  Not even morphine.

But somewhere along the lines, mid-January, Aidan turned the corner.  Like a light switch had been flipped.  One day he woke up smiling.  He was calmer.  And within one week we saw huge changes.  He began sleeping, he was keeping his food down, and his medicine worked.

I think about where we were last year, and how exhausted we were.  How scared we were.  And the months following weren't exactly easy, but the boys' health did improve.  

In the summer, Aidan hit another rough patch.  He began having the same symptoms.  Father's Day weekend we were preparing to remove him from his feedings and to stop most of his meds that weren't working.  The day we were going to stop the feedings, he woke up smiling.  He ate his food and kept it down, and he slept like an angel.  From that day on, he has been doing great.

Aidan ~ October 2012

Now Ty is fighting this battle again.  He is right where Aidan was.  He hasn't been himself since August.  Our chunky monkey is down to 17 pounds.  He keeps all his food down, yet he gains nothing.  Because he trembles, he shivers, he arches, he thrashes.  For months he had been throwing up blood.  Finally we have that under control, but what is happening in their tummies?!  What is causing them such pain??  

Tyler ~ November 2012

I miss feeding Ty bottles.  I miss his chubby cheeks & his side smirks.  He has been having better days since we started him on goats milk but overall this is dragging on for him... Watching him go through this, just like with Aidan, is brutal.  There are days my heart literally hurts. 

Ty ~ about 6 months ago ~ Spring 2012

*Sigh* ...these kids... I cannot figure them out!  They are nothing short of amazing, and I am convinced their lives here on Earth have such great purpose.  Last week proved this to me yet again.

Recently our sweet Aidan came down with a bout of pneumonia.  Jason and I are getting over it, too... This pneumonia has been hard on Aidan, for he has never needed oxygen this much in his entire life.   Last week, as Aidan was about to get into the bathtub, he stopped breathing on us (the boys' nurse was with me that day). This has been occurring here and there - these episodes.  And then add in the pneumonia....

Cole must have sensed something, because he went to Aidan and kept saying 'You're okay, A-dee (his way of saying Aidan), you're okay."  And he was patting him on the hand & head.  Aidan stopped breathing shortly after Cole came over to him (such a wise soul at 21 months old!).

The minutes that followed felt like hours, for I watched Aidan lay there lifeless.  Attempting CPR... and seeing no response. Heartbreaking.  Once again I was thinking 'NO, this cannot be it, this can't be happening now!"... and how many times will he stop breathing on us?!  

This time was different because he had no pulse as well. Crushing.  Devastating.  Could never put into words what it is like to watch your child slip away.  I think I left my body as well.  Because it is such an experience that makes you just want to leave all reality.

It had been such a long time, and as I turned to go grab my phone to call Jason - who, might I add, has gotten a few phone calls from me telling him Aidan is not breathing.  Can you imagine getting that call at work, and being miles from home?! -- As I got up to grab my phone, I turned and looked down.  Aidan looked so helpless.  So gone.  I remember thinking, he has left his body.  He looks like he has gone on to another place.  He looked peaceful, yet he did not look like himself.

As I looked down at him, something happened.  He took in a small breath.  Minutes after he stopped breathing.  After his pulse stopped.  After we had been turning him, calling for him to BREATH, doing all we could.... On his own, he took a breath.

I am convinced Aidan caught a small glimpse of Heaven on this day.  And for some reason, which we may never exactly know, he was sent back to us.  More lessons yet for him to teach us all?  His story on Earth is not yet complete.  

I like to think that our boys have many angels around them. So they are never alone.  And if something should happen to them, even if we aren't near, they will not be alone.  They will be carried.  They will be safe, whether on Earth or in Heaven.  They will be safe.  And loved.

November 2012

As of now, our little men are here with us.  And I am loving them up.  I am thankful for more time.  Because for me, our 3 boys are my little glimpse of Heaven.  

Cole, Aidan & Ty ~ Summer 2011

Halloween 2012 ~ The Chipmunks

A Glance at...

5 years...

2007

Married on a hot & windy day, October 6th.

2008

The birth of our first son, Aidan & the start of our family.

2009

Another baby boy!  And Tyler makes four!

2010

Taking care of our two little men & one more on the way!

2011

Cole makes his debut!

2012

Our family's first home.

Today marks 5 years married.  We've seen a lot, been through a lot. Our marriage has been put to the test in more ways than one.  Here we are, still partners on this journey.  As I look back through the pictures of the past five years, one thing remains true.  We've been in this together.  No one on the face of this Earth knows exactly what I have experienced these past five years except you.  As a couple we've been given gifts that are priceless.  We've experienced miracles.  We've been blessed.  We must be doing something right :)

I know we don't often get time together (not one single date this whole past year?!)... and I know we have yet to travel... but yet we see the world through our children's eyes.  And we created those magical little beings!  All because we said 'I do'.  So much good has came out of our union and the words we said on this day 5 years ago.

So, to my husband, my partner in future travels, for now our adventure continues at home.  In our crazy, chaotic, busy & loving home.   Thank you for being with me, even when I'm a tired, worn out, cranky housewife :)  At the end of the day, I am always thankful. No matter what.  I appreciate and love you dearly!

Let the adventure continue!   

Don't Blink.

As I sit here typing this, my heart is beating fast.  Damn near out of my chest.  I'm shaking from the chain of events that happened earlier this evening.  One of those 'I have to write asap to release some of this pounding in my chest' moments....

I'm thankful that most of my posts on here are of the happier/lighter kind.  I never like to dwell on the scary/bad/heartbreaking moments in our life.  But sometimes those moments happen for a reason.  And I feel there are many sides to our journey... some happy, some sad, some terrifying... and to not touch on the hard parts would be inauthentic.

Our house, our family, our life has been a rollercoaster since the day Jason and I married (coming up on 5 years in October).  Starting with getting pregnant right away with Aidan, then having Aidan & finding out about his brain condition, then being told of his short life expectancy. Followed by genetic testing telling us Aidan's condition was 'random', and then my pregnancy with Ty.  Then Ty's diagnosis of his brain condition in the womb, his birth....then at home, newly married & caring for our beautiful medically fragile babies.  Then our surprise pregnancy, finding out baby was neuro-typical, then Cole's birth... Watching Cole grow & do all the things we never thought we'd see... The past year - almost losing both Aidan & Ty due to the neurological fits/GI issues/mystery symptoms they experience...

All of this flashed before my eyes this evening.

We've been told from the start that Aidan & Ty's life expectancy is short.  We've gone over this in our head and heart for years now.  (It will never seem fair or right, for them or for us.)  We've watched our boys fight battles they shouldn't have to face.  As parents, we have tried to stay one step ahead of a disease we don't always fully comprehend.  It's scary being on the verge of losing what's most important to you.  Yet we try not to 'go there'.  This evening it felt so close.  We weren't prepared.  (Will we ever truly be prepared?!).  There's nothing more frightening than watching your child struggle to breath, choke, turn blue.... before your very eyes, and not be able to help them.

One minute we are busily preparing supper, and the next there are screams, cries, and panic.  As our boys often do, Aidan started to throw up on the couch.  I was cutting up food for Cole, with my back to the rest of the family. I saw Jason go over to Aidan out of the corner of my eye.  Aidan & Ty puking is an everyday (sometimes 20 times a day) occurance.  They do it often, and I must say, they do it well.  They do it while seizing.  They do it on their backs, on their tummy, sitting up... and something in their brain always clicks just right so that they don't aspirate.  They get through it.  Whether it is a small or large amount of puke.

This time was different.  I looked back to see Aidan, very purple, and obviously not breathing.  Jason was hollering for me, as I rushed to the couch.  Everything happened so fast and was such a blur.  It's not uncommon for Aidan to seize while throwing up, or to be a bit blue as he's seizing or coming out of a seizure.  This time he was very blue.  I screamed to Jason to turn him over, move him, do something!  He wasn't breathing!  Jason was scared, I was scared...  All of a sudden Aidan shot back & went into a full blown grand mal seizure.  Mind you, he has never had a grand mal seizure (only tonic clusters or infantile spasms).

He's still not breathing and going into this frightening seizure we had never seen before.  He was so blue.  He clamped down on his tongue so hard.  Jason & I thought for sure he was about to bite it off.  We tried prying his mouth open, anything to get air into him! Jason said this is when I started screaming Oh my God, Oh my God...  Meanwhile, Cole was in his highchair, watching this all unfold.  Sensing how terrified we were, Cole started crying.  'He cannot watch his brother pass away.  He can't see this!', I thought to myself.  Jason told me he thought the exact same thing, which is why he asked me to take Cole out of the room.  I rushed to Cole and wheeled him into the hallway.  There we sat, in the dark hallway, our backs to the the couch.

Jason later told me he didn't want me to see Aidan leave us. He wanted to protect me & Cole.  I cried in the hallway, with my back turned, talking to Cole as calmly as I could. Knowing Jason was scared out of his mind, doing all he could to help Aidan... Trying to protect Cole, trying to save Aidan... scanning the room for Ty (who had been doing horribly all day)...

I turned back and saw Jason attempting CPR into Aidan's nose, for his mouth wouldn't open.  He had been without air for so long now, or what felt like forever.  May have been seconds, minutes... But Aidan's color told us he had been without it for too long.  I shushed Cole and tried to calm him. I felt like shoving him into the hallway had scared him even more, so I wheeled him back out into the kitchen, and then rushed back to Jason & Aidan.... his mouth still clamped shut. Still purple.  The combination of the choking, not breathing, new seizure, biting the tongue... this was all something we hadn't seen.

So much time had gone by.  Too much time had gone by. He's been without oxygen for too long!  He needs to breathe!

Some of the details were muddled... not sure how much time elapsed.  I do remember my thoughts.  And looking back, I am surprised at how distinct my thoughts were.  It was as if each thought was spoken clearly in my head.  Like I was hearing each specific one (almost audible?) - I wasn't just 'thinking' them.  As all this chaos surrounded me.... as my biggest fear played out in front of me, my thoughts remained so clear.

I thought 'this is it, this is it.'.  I thought that as I first walked over to them, for the scene was so frightening. I could see the fear in Jason's eyes, too.  He later told me he was thinking the same thing.  The moment we had feared for 4 years was happening, and it was happening out of nowhere, and so fast!  We were helpless!!

I thought of other angels in Heaven, one in particular.  I thought of Cole seeing this... I thought about Ty's birthday party in 2 days.  This cannot be happening!  Life is still happening!  We need Aidan here!  We aren't ready!

I think we often get comfortable with Aidan & Ty being here, with us.  When in a second, they could be gone.

We choose to be comfortable in the idea of Aidan & Ty being here with us.  They are part of our family, and we wouldn't be whole without them.  Inevitably we know they will someday go to Heaven, but we don't know how or when. Today wasn't Aidan's time.  For out of no where Aidan took one small breath... and then he came back to us.  Time stopped at that moment, and we just stared at our little man.

Our crazy life, our emotional life, our beautiful rollercoaster of life took a deep plunge tonight & then came shooting back up the hill...  Are we given moments like this to shake us up? To remind us how precious life truly is?  I would hope you could tell by my Ty Ty post 2 days ago (and many others) that I don't take a single minute for granted.  But maybe He felt we needed more of a reminder??

Are we too comfortable?  Too busy?  Too wrapped up in work/chores/our phones/tv/_____(fill in the blank).... Whatever the case, this evening shook us to the core.  I mean, we've seen some scary stuff happen with our children. We've been put through the ringer at times.  This was probably the scariest & most terrifying.... because of the sudden & unexpected factor?  We are grateful that the outcome wasn't what we had feared, yet heartbroken knowing that one of these times it could end differently.

There's this calm within our house.... (which is almost overridden by my still pounding heart!).. Once again, we will be holding our kids closer.  And Jason and I are bonded by yet another life changing moment.  I can see all 3 of my baby boys right now, fast asleep & so peaceful.

Grateful.

“Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom.” 
― Marcel Proust
  

Ty is THREE

  

Here we are!  My baby, my Peanut, is officially 3!  Does this mean he's not a baby anymore??  Noooo, say it ain't so! Tyler, my baby you'll always be.

Happy 3rd Birthday, Tyler Gabriel!

It's three years later & I am still excited to hold you first thing in the morning when I awake, as if it's my first time ever holding you.  Do you remember your first time in my arms?  I took one look at you and said "You are soooo cute!"... and I haven't stopped gushing about you since that very first minute, at 2:23pm.  I hope I can hold you in my arms always... the thought of anything less shatters my heart.

This morning I was thinking back to your birth day, those first moments & hours.  I realized that your personality has shown through so strong since your very first minute.  You want what you love - and you protest everything else, ha! You love your Bottles and Naps!  (Smart Kid!!)  And of course, if you can be held at the same time.... Bonus!

He does a lot of deep thinking in his sleep!

Ty at 7 weeks, 5 months and 3 years old...

Drinking down to the last drop!

The memories of when you were a teeny baby are still so fresh.  I remember you sleeping right next to me at night, tightly snuggled up.  You rarely left my side.  To this day I don't sleep quite as well without my peanut beside me...  I think your love of sleeping rubs off on people!  You have this way of making whoever is holding you want to snuggle up for a nap, too!

I love looking back at pictures of you.... going from a teensy peanut, to a chunky monkey... and now you are growing tall & have this handsome little boy look going on!

 8 months old and oh, so chunky!  

Just lounging!

Winter 2012 ~ 2 years old

As a baby, you were never far from Aidan, and to this day you sleep right next to him.  I think you are about the only person who can sleep through Aidan's noisy self, ha!

Big bro Aidan 14 months old & Little bro Tyler 2 weeks old

You even shared a hospital bed with your bro!

G-tube surgery ~ March 2011

The interaction between you & your little brother is priceless. Cole adores you, Ty.  He is always trying to feed you, make sure you are covered up with blankets & 'Ty' was one of his first words! 

Cole likes to sit on your lap, but one time we decided to turn the tables a bit & have you sit on his lap!  Squish!!

Daddy is so proud of his Ty Ty.  (Or as he likes to call you - Bob.  Your Dad is great at coming up with the most random nicknames ever, ha!)

For weeks as your birthday approached, I have grown weepier and weepier (in a good way).  Let's face it, I become a mess of emotions when I think about you, your birth, and all the years we've had together.  You make me melt, Ty.  Plain and simple.  Your cuteness cuts to the core of me.  When I wake up and see your sweet cheeks, I melt. There are times during the day where I get so caught up in how much I love you.... and I start to feel that lump well up in my throat.  I hope you know how precious you are to me, Ty.

No matter what the day may bring, what this year may bring... I have you under my wing, Ty.  There's good things to come, my sweetheart!  My birthday wish for you.... is happiness, comfort and piles & mounds of the things you love the most (bottles, naps & snuggles!)

Oh, if one could bottle the feeling of a full heart....  that's the feeling you give to me, Tyler!

Happy 3rd Birthday, Ty Ty.  My baby you'll always be.

Love,

Mama

He knew that he was formed by God's hands, 
dreamed up in His heart 
and placed in this world for a Purpose.

Our First Hour

To my sweet Aidan ~

Today, and everyday, I am grateful for being chosen as your mama.  For another year of memories with you.  Every year, as your birthday approaches, I think a lot about the day of your birth.  I arrived at the hospital on July 18th, 2008 .... not knowing how much you'd truly change my life.  The sun was shining bright that day.  

6 lbs 3 oz ~ 19.75 inches

There is always light in my life now, because of you.  
What a journey we have been on... 

June 2011 ~ In the Sunshine

My mind keeps going back to the first hour I held you in my arms.  You were born at 8:20 pm (as was your little brother, Cole!).  Your Daddy and the rest of the family in the room piled out to give us time together (mostly to go eat, while I wasn't hungry.  All I wanted to do was look at you and eat you up!).  It was just me and you.

I held you in my left arm, your tiny little head bobbled around looking for food. You opened your mouth wide.  You seemed to be anxious to eat but couldn't quite figure out where to go.  You latched on here and there, and I remained patient. You were bound and determined... such a wee one.  I had no clue at that moment that you couldn't see, that your eyes did not work.  You could not see where to eat,  but you figured it out.  You could not see me, but I looked at you as though you were looking right back at me.  Maybe you did see me?

I know you knew my voice.  You remained calm in my arms. You'd sleep a bit, and then wake to look for food.  I was a new Mom, my mind was racing.  I thought about when we'd take you home, when we would show you your room, showing you your first Christmas tree, watching you start to crawl, imagined you climbing up into my lap.  It was only the first hour but I pictured all those things.  God had a different version of perfection when He made you.  It didn't involve all the normal milestones.  It didn't involve even half of the 'images' I had that first hour I held you.

Holding you that first hour, I was soaking you up.  Yet I was racing ahead in time.  So excited for the next day, the next step, the next moment... Knowing you were perfect.  I always say 'I wouldn't change a thing'... about the journey we have been on.  But I do believe, that if I could, I would go back in a heartbeat to that first hour.  I would have never let you go.  For at that moment, you were just Aidan.

Aidan, your story is much more than that first hour, though it's a moment I highly treasure.  You were meant to go to the nursery that night.  That is where the nurses discovered your seizures.  That is when it all changed ~ our lives, your life, our entire world...

Daddy and Aidan ~ 1 day old

I remember all the people who came to see you after you were born.  The traffic in your room was nonstop. You were only allowed four people in your room at a time, and there was always a line waiting to see you...

Mama's Little Monkey.

Close to my heart, where you'll always be.

You have come so far.  Today, on your 4th birthday, you are the happiest and healthiest you've ever been.  

You have shown us true strength....  

In the NICU ~ 10 days old

Smiling & sitting tall ~ 10 months old

Aidan & little brother Tyler ~ 16 months & 2 months

Professional lounger!  23 months old

Happy, cheesy grins!  Winter 2012 ~ 3 years old 

My amazing 'baby' ~ today you are four.  Can that be right?! My mind goes into a tailspin/whirlwind when I think back on this past year.  The highs, the lows... I'll be honest, you had us very scared this year... which makes this birthday even more amazing.  I hope you can sense how blessed we feel today - to have four very full years of memories with our Aidan Samuel.  And praying for many more...

Summer 2012 ~ 3.5 years old

For as hard as this past year has been, we have also seen the many lives you have touched.  Since birth you have been making hearts swoon, but this year the amount has been tenfold.  Aidan, you serve such a purpose on this Earth. You touch people without uttering a single word.  Such a powerful, yet gentle, soul. There's something about the smiles on people's faces when they interact with you.     

You are my angel, my little gentleman & my first true love.

Gosh darn it, I'm in awe of you, Aidan!

Daddy giving Aidan rides on the 4-wheeler!

Such a happy guy!!

Little brother Cole supervising ;)

Happy 4th birthday, Aidan!  Mama loves you SO much! xo

LOVE YOU, AIDAN!

Daddy Day!

I'm very lucky that my boys have such an amazing Dad... to care for them, guide them, play with them, protect them...

Jason goes above and beyond for his sons... and I love that about him.  I love to see the look in his eyes as he holds Aidan and Tyler, they are so precious to him.  And watching his face light up as he watches Cole learn & do new things, his heart full of pride for that kiddo.

Jason and I are both so thankful for today.  We saw smiles from all 3 of our boys - priceless!!  There is no one that can make our kids smiles more than their Daddy!

I'll admit, we've been facing a particularly hard time lately, so there were some tears shed today.  We've been seeing some tough stuff lately regarding one of our most precious treasures (our Aidan!)... so we made sure to fill up this Father's Day to the brim with memories!!

Knowing & recognizing how precious time is made this day even more special.  To say we are immensely grateful for each day would be an understatement.

Lounging with Ty and Aidan! 

 Another great Daddy (mine!)

Papa helping the boys into their pool!

 Father's Day 2012

The whirlpool felt too warm so we 'jumped ship'...

and went to the baby pool...

which was ice cold!   

Can't forget babygirl, Chloe.

She must've wanted credit for all the gifts, ha! 

 I love the look on Cole's face as he watches... 

he was soooo excited to see what was inside, haha!

Daddy's Sonshine. 

Cole ~ 16 months

 Little charmer!  (and expert snuggler!)

Ty ~ 2.5 years

 

Smiles from Sweetpea.

With all our heart & soul.

Aidan ~ 3.5 years

Daddy & his 3 guys.

Happy Father's Day, Jason!

Thank you for being the best Daddy to our little guys!!