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