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.


  1. I am so so sorry for you all. I know it is not enough, but no one can ever take away those precious memories..hold on to them. You and your sweet little boy are in my thoughts and prayers often.

  2. There really are no words.....except that you are in our thoughts and prayers each and every day and we are so sorry for all that you are going through. Oliver is such a sweet little boy and lucky to have such awesome parents. Wish there was something else to say, but I know nothing will take away your pain as parents. God Bless little Oliver!

  3. I was making paper with 3rd graders at JPS today and had on Oliver's bracelet and a Sandy Hook bracelet. One little boy asked about each, and I replied, "You heard about Newtown, but I bet you didn't hear about Ollie who is just a little boy of one of my friends. He is very sick and whenever I look at his bracelet, it reminds me to say a prayer for him." His reply was, "I'm sad for him".
    I'm so sad for you too and there is nothing I can do to help you get through your pain except pray and hope it helps you both to keep doing what you're doing- keeping Ollie happy every single day.

  4. My heart breaks for you and Oliver. I pray one day they find a cure for MLD, so no other family has to go through the heartache that you and many others are going through. God Bless you and your beautiful family.

  5. There are no words.

  6. Every night, since I heard, a prayer is begged for a cure.

  7. There are no words, just many many prayers.

  8. {{hugs}} I wish I could change this for you...stop time, find a cure, anything. Prayer are sent your everyday,

  9. Oliver is a very special boy; not only for the things he used to do, but for the work he does now. Ollie reminds us all how very precious life is, how important faith and love are, and how living every moment to its fullest should be something we ALL do. The hospice nurse in me says it sounds like you have a great supportive team. The mother and Christmas party compatriot in me is crying with every blog entry for this beautiful little boy. -Sarah

  10. Thank you for sharing this Kate and Chris. As a mom, I honestly can't think of anything more horiffic than what you are going through, I cry for you often. You will always remember your little Oliver pre-MLD and now, so will I. I pray for you everyday... that little Oliver isn't in too much pain and that you two have the strength to find your way. Wishing your last year had been so different. Sending you love and peace.