Aidan Joshua Lear

Over the years, I've had reoccurring nightmares.  I may have mentioned them already, not sure.  There is more than one reoccurring theme but they all revolve around one or all of the boys getting separated from me somehow and then hurt so badly by others that their bodies can't survive.  They are very vivid and disturbing.  I hate them, it's horrible and I always wake from them unable to calm down, exhausted from the stress of trying to save them in my dream, and completely freaked out.
Years ago I had them frequently.  Now we are living them.

 Leaving PCMC after over 2 months in the hospital, most of it the PICU.

At first Aidan wanted to be in the front room all day, he didn't want to be left out of everything.  But he quickly realized with all his sensory issues being amplified, he couldn't take it and stayed in his room.

 Enjoying some brotherly time on one of the few occasions his brothers weren't too wild.

He was SO disappointed he couldn't play trains like he used to... That expression is so sad.
He'd lost his entire life as he'd known it.  I tried so hard getting things going to help his mood, but finally had to let the drs put him on an antidepressant.  Once he was on the right dose, our happy go lucky Aidan was back.  I was so relieved, because I was very very scared of the entire thought of putting him on such medication.  But it worked for him, and I'm grateful.

In July the geneticist was able to get approval for all of us to undergo genome sequencing.  This is genetic testing that tests for a much wider base of neuro degenetarive disorders, as well as specifically mitochondrial disorders.  We still do not have the results of those tests.  Hoping to have the first round by Christmas.  If nothing comes up on the mitochondrial, they will test past that to more generalized disorders.

By this time Aidan was really deteriorating.  He no longer could handle being in the ambulance for transport, and was completely confined to the house except for very very brief wheelchair rides up our street and back.

Getting back into ambulance after being transported to PCMC for appts.

Using a make shift support for his car mat, a flattened cardboard box.

 Waiting for his last visit with the dentist.

Another ambulance transport.

 His aunt LaRene sent him several cars, but his favorite was Herbie of course.

 Our Bishop gave him a Lightning McQueen.  He was thrilled.

 One of the Herbie shirts I got him.  The other was red, and he was buried wearing it under his gorgeous white suit.

 A late night wheelchair ride because it was too hot to ride at a normal hour.

 Haircuts were interesting...

Aidan's one and only selfie.  I had to actually hold it from the seat behind him, because he didn't have the strength.

We made sure he had one last car ride.  The only way we could fit him (and he was scrunched a bit oddly) in there with his vent and provide the allover body support he needed, was to use a bean bag in the front seat and strap him in.

Jace was deteriorating super fast himself.  He was having to lean against me to get anywhere or just out right crawling, just like Aidan shortly before the pulmonary failure.  So many seizures.  So many potty accidents.  I asked Lincoln to take him to the pediatrician to see if a referral for a GI specialist was appropriate.  He said it was and gave us a referral.  The GI surgeon immediately agreed that Jace needed a Gtube.  So right after his birthday, he went into surgery at PCMC and they placed his Gtube.  It was such a blessing.  He had marked improvement right away.

They had an awful time intubating him for the surgery, so he had bruised up eyes and was a very unhappy little man.  I try to warn these people they need to go heavy on the sedation but they never listen to me.  Infuriating when you know it's terrorizing your child.

At one point I figured out the oxygen tanks were leaking and causing water damage (and therefore black mold) in his bedroom.  So Norco, who provided the units, had to remove and replace the trim, tack board, pad and carpet, and wipe down the ceiling and walls.  Of course this required Aidan be moved out into another room.  He was never the same again.

Waiting patiently for us to move his ventilator over.

I tried decorating as close to what Aidan wanted as I could.  I think I did a decent job with little to no money. :)

Friends and family visited.

 Long time family friend Susie.

 This is actually me with no makeup and or hairdo.  My sister in law took it.

 Above mentioned sister in law.

 Lexi.  :) She's at our house all the time, but I still had to put this photo here.

 Mindi, another long time family friend.

 Madison, yet another long time family friend.

My mom.  Love her so much!
There were several others that we didn't get pics of.
Grateful for and love all of them for taking the time to come see Aidan one last time.

One last pic with Daddy.

Last wheelchair ride.
He tried so hard to smile for me.

He started having status seizures like I'd never seen him experience before.  Ones that would last hours, and were obvious.  I was told to administer several rescue meds in a combination that slowed them down, but still had to be so well timed, we'd lose control of the seizures if out of step at all.
The first week in Sept, after the statuses and pain were unbearable for him, Aidan weakly reached up in front of him and said one of the last things he was able to speak.  "I want to go with you now."  There is no doubt in my mind he was talking to either Christ Himself, or my dad, or his brother... or even all of them.
This horrible disorder...
First it took his lungs.  When he came home he could go about 5 mins without the ventilator and started out with only 2 liters of oxygen.  Only two months later he could no longer go more than several seconds without the ventilator and the liters of oxygen were all the way up to 16-17 by August.  It took his strength completely.  It took his eye sight.  It took his balance and equilibrium.  It took his hearing.  It took his ability to hold anything in, so his bum was completely and utterly raw from oozing constantly.  It destroyed his kidneys and liver.  It caused horrible edema.  He had a staph infection that medication wouldn't touch.  It took his ability to talk... this was when I knew Aidan was done... I knew he would not put up with no eye sight and no ability to communicate.  My heart was beyond broken, it was shattered into tiny pieces for his suffering.
His last organ to stop was his heart.
His precious, sweet, giant heart.
On Friday, Sept 12 2014, he let go of my hand.  I knew then he wouldn't make it through to Monday.
His heart slowed and slowed until it stopped completely.  Lincoln and I took shifts staying with him.  Twice, while I was trying to sleep during Lincoln's shift, his heart stopped, but when I returned to him it started back up.

Sunday morning shortly before 10am, his heart stopped as I held him.
The nurse turned off his ventilator/life support.

I experienced so many tender mercies during this time.
I'd prayed that I would be the one holding Aidan when he passed.  Lincoln was right next to us.
I had Lexi's help with Jace and Damon, making it possible to focus completely on Aidan.
Because I'd switched hospice companies a couple months prior, I had the true support I needed.  Switching was prompted by nagging feelings I was being lied to.  Turns out I was, and they'd tried doing something illegal.  They also were not providing enough support for Aidan's needs.  So switching provided the tender mercies that came later involving the major help needed.
People showed up at the exact time I needed them.  Several times.
The Drs that were involved again at that point (also because of promptings that caused me to switch back) provided better care.  I had not switched in the first place for lack of trust in them, I had only done so at the recommendation of the hospice- that I later got rid of.
Toxic people in our life were revealed for who they truly are, and I was able to remove them completely.  Both the HI, and a person who caused major harm to our family, and if I hadn't figure out her identity (she was quite two faced about it) it could have drug on for a much longer time potentially causing even more harm.  I will not get into the details of that on here, but I will say that the safety of my boys and family as a whole is paramount.  I will not allow an abusive, manipulative person into our home.  Period.  I'd had promptings she wasn't being truthful all along, and the boys made it clear they didn't trust her.  But I was distracted with Aidan's care, and the disbelief that someone from my church could be so deceitful, so massively calculated in doing harm allowed me to be deceived... it was just a major eye opening experience.
I will never again ignore promptings about trusting someone, no matter who they are.
The funeral home set up a fundraiser for the expenses, and it provided the money we not only didn't have, but could have never come up with.
The Herbie casket we'd asked a family to build was made just in time.  It was perfect.
Sweet people came forward from all over providing donations of all sorts... things like photography services to the casket flower arrangement.
I can't say it enough, people came forward for every little to big thing.  I was in a horrible haze, burying my perfect Sweet Pea.  Yet everything came together as he wanted.  And that's all I wanted.

Aidan's wishes for before his death didn't all materialize.  But many did, again, because of others caring and pitching in.

He didn't get his Make a Wish, but he did get to ride in Herbie, thanks to a lady I grew up with and her thoughtful cousins...

 So excited, having been told he was going to ride in Herbie.

Getting ready.  Making faces.

 He was in a ton of pain, so he may look unhappy, but he was thrilled with the ride, just hurting something awful.

 The picture they gave him.  They also gave him a key.

So sad he had to say goodbye and not able to keep Herbie.
They even made a video of the whole thing.
Look for "Herbie Visits Aidan."

The credit union we bank at had a Herbie limo that they took us in too.

 And a neighbor who is an incredible artist, painted Herbie for Aidan.  Notice the license plate? :)

He loved it.  We will always cherish all of these.

He didn't get his second Make a Wish, but thanks to another sweet lady I grew up with, her dad, and some college students, he did get a super cool train table for his hospital bed...

He didn't get to go fishing with Grandma Weber, but he did get to catch a fish in our backyard, the weekend before he passed.

 The fish had already been through a catch were then moved out of the water they lived in, so they were struggling enough Lincoln had to just go ahead and hook it.

 Aidan didn't have the strength to hold the rod, let alone with the fish on the line.

 When I realized he couldn't even see, I was crushed.  I felt like we'd failed him, not getting it done sooner.

 He could at least still hear enough to look in my general direction when I called to him. But as the week wore on, he couldn't even do that.

 Sorry these ended up a bit out of order.  You get the idea. ;)

He was seizing so much, he flat lined several times.

I was genuinely freaked he'd go right there in front of the neighborhood children.  I kept praying we could at least get him back inside.

 Then his brothers had their turn.

 Jace loves animals and has no fear.  He caught and held this bass like a pro.

And the crawfish.

Damon is more like Aidan.  He was totally grossed out by the feeling of the slimy fish.