Friday, January 25, 2013

Not getting better

He's on day 3 of antibiotics and the infection is worse and has spread to both lungs. We're worried and scared.

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Sunday, January 20, 2013


I woke up this morning worrying about what types of appetizers to make for the guys coming over to watch playoff football.

That quickly changed when Oliver started having another episode of extreme pain.The 3rd episode in 7 days. It start off with unprovoked fussiness, just a little whining, so we changed his position, we tried to distract him with toys, we hugged him, cuddled him, kissed him, rocked him, patted his back, rubbed his hands and feet, sang silly songs to him, massaged his tight muscles, we gave his initial doses of diazepam and morphine. Nothing helped. He had another seizure and it only got worse. His arms started spasming and tightening towards his body. The screaming became so loud, his pain must have been unbearable. To hear our child in such pain, words can't describe. They can't. It's like a type of torture.

I held him tightly in my arms, I rocked and kissed him, my own tears fell onto soft baby hair. I wanted so badly to take away him pain, I wanted so badly for him to be at peace. I am so sorry Oliver. I'm failing you. It's become my only job as your mother to protect you from pain and fear and to keep you comfortable and happy. That's all I've ever asked for. I haven't asked for a cure, that's years or decades away. I haven't asked for a miracle, your DNA isn't going to suddenly create the enzyme you are missing. I haven't asked for anything but your comfort and I'm failing at that and I am so so sorry.

Dose 2, dose 3, dose 4. Why is nothing working? Why is he still suffering? Now he's sitting with Daddy and has an oxygen tube up is little nose. After hours now, and tons of medicine, he's starting to calm down, but his arms are still spasming. This has been a terrible week.

Friday, January 18, 2013

A Future Gone

I'm sitting here in Oliver's room and reminiscing. There is not an object in here that doesn't remind me of the happier times, pre-diagnosis. Books, toys, games, some of his old favorites that are no longer touched, they're just collecting dust. I feel like if I put them away I'm admitting he'll be leaving us.

Today at the neurologist appointment the doctor asked in the kindest way possible if we were preparing for when Oliver "starts to fade away". I was speechless, I had no words, how does a mother "prepare" for that? Chris spoke up saying "we just take it one day at a time".

I don't know why, but I always feel the need to share the pre-diagnosed Oliver with people, especially people who didn't know Oliver before he was diagnosed and only see him now as a sick little boy, who can't move, talk or eat.

I want to share with them all the amazing things he used to be able to do. All the amazing things we are already grieving for because they're gone and never coming back.

He used to talk, a lot, and boy was he funny. He knew he was funny too. He would count "1,2,5!" And laugh because he knew it wasn't correct. When we'd ask him what a cow says he would say "Mmmmmmmm" instead of "Mooooo". It sounded more like he wanted to eat the cow than make it's proper sound. (Which is oddly funny because Oliver was a vegetarian! We could never get him to eat meat, he was a 2 year old with vegan morals.)

He knew all of his colors, he learned them so quickly we had to start teaching him crazy ones like chartreuse and lime green. He knew over 100 words and over 75 baby signs. He was a puzzle master. He could find "gold bug" in the Cars and Trucks and Things that Go book faster than ANY adult.

He loved bath time, he would scream with joy when I'd turn on the bubble machine, and he'd "pop" "pop" "pop" them and laugh.

He loves his cat Pippa, he would lay on top of her, "pet her" as gently as a two year old can, and say "niccccce Poppa". Pippa would just lay there and tolerate him. He'd yell "get down Poppa!" with such authority when she was up on the furniture. It was his first sentence and I have never laughed so hard.

Eating was a blast, he would try anything. He hated carrots, he loved pasta, cheese and bananas. He went a week when he only wanted to eat bananas. He thought it was hysterical to put bowls on his head, I did too.

He loved daycare, he loved hanging out with his friends. I'd drop him off and never once did he cling to my leg. He was a social butterfly. When I'd go to pick him up he didn't want to leave. He'd yell "Mama!" from across the room, come grab my hand and walk me over to what he was doing, and then keep playing. The smile I would get when he saw me walk into the door each day is one I will never forget. Ever.

Our lives have taken such a sad turn, down a path no parent should ever have to travel, there is nothing that can ever take this pain away. We can smile and push through minute by minute but the sadness runs deep into our souls. Today Oliver saw 4 different nurses and a Doctor. I still can't believe that this is our life, that our son is terminally ill. How can this be us having a conversation about "end of life decisions" and "Do not resuscitate orders" for our baby boy?

Now his room is filled with sneakers he will never wear, blocks of letters he will never learn, and abandoned toys. A future gone before it had barely even begun.

Thursday, January 17, 2013


Ollie has been having pain filled episodes every few days, that last for hours at a time. We have no idea what is causing them or what exactly is hurting him. They are so incredibly frustrating, come out of nowhere and his pain medicine doesn't help him at all. He'll scream at the top of his lungs, cry and whimper incessantly. His arms tighten against his body, his legs become stiff and he cries some more. He cries and cries and cries. The saddest most heart wrenching cry in the world. Oh to watch our child suffer like this. I often feel like I'm losing my mind seeing him in such pain. Life is so unfair.

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Tuesday, January 8, 2013

Sleepy Sunday

my brother Steven took this photo. It was family nap time. ;)

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Monday, January 7, 2013

Oliver had a really great day yesterday. His Uncle Steve and Uncle Greg came over and hung out, watched football and played with Oliver. Last night Oliver was sitting in his new carseat, well, in the living room. We just got it and haven't tried it in the car yet, but he seems pretty comfortable in it so far! He held the egg maraca in his hand and Mommy helped him shake it while Daddy played the guitar. We jammed out and sang a bunch of real songs that we mix up by plugging the name "Ollie" in every 5th word or so. Ollie smiled and smiled and smiled. He even did his funny little laugh! If I could have stopped time at that moment I would have.

Here is our happy little peanut.

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Tuesday, January 1, 2013

Here is Ollie staying up too late on New Year's Eve. He actually went to bed at 8:30, but decided to try to make it till midnight and was awake from 9:30-10:30. Good try Ollie!

And here he is this morning. Exhausted!

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