the book calls it "anticipatory grief"

Every minute my heart aches. My mind goes nonstop. I grieve for the past and everything that he has already lost and for the future he will never get to have.

He will never go to school, he will never have a "best friend" to share secrets with. He will never come home from school and answer "nothing" when I ask what he learned that day. He will never have a favorite sport, subject or hobby. He will miss family game nights, Sunday morning cuddles and cartoons, birthday parties at the movie theater, vacations, family picnics and holidays. He'll never learn to drive a car. He'll never go to prom or run track or cross country. He'll never have the opportunity to learn from his mistakes. He's never even made a mistake. He'll never skydive, kayak, mountain climb, see the world. He'll never meet a girl and fall in love. He'll never have his own children, family or career.

He will never experience life the way every parent dreams their child will and so I grieve for myself and for him.

I know I'm not "supposed" to think like this, but honestly what parent wouldn't? From the minute your child is born you begin thinking about and planning for their future.

I was stopped at a stoplight the other day and across the street I saw a young man, fair haired, fair skinned and he had stopped and was holding a door open for an elderly man. I thought, how nice, and although I tried to stop myself, I couldn't help imagining it, could that polite young guy have one day been our Ollie? No of course not, I can't compare him to random guys I see, he is himself and no one will ever be just like him.

But I hate that I will never know what he'll grow up to look like, I hate that I will never get to know his personality, sense of humor or see him grow into a responsible adult, or even a sweet natured independent child.

And recently I've been grieving even more for Miles, Oliver's younger brother that he never got to meet, our red haired angel that was too beautiful for earth. My beautiful boys, I love you so much. I am so sorry you won't get the futures we dreamed up for you.

For now we live simply and in the moment. We make the most of every precious minute we have together. We kiss him, hug him, hold him, rock him, soothe him, breathe in his sweet scent, but it's not enough. It will never, ever, be enough.

Thanks Jeanette for the great costume. :) Ollie makes a very cute monkey.

You know it's a tough night when your text messages look like this...



Chris is at a surprise party for a very good friend of ours. We almost never leave each other alone, caring for Oliver is a two person job, but I insisted he could go and I'd be fine. And I was.

We've become very good under pressure and remaining calm in challenging situations. That's hard to do when your child is having a seizure and you're trying to put small amounts of medicine into a tiny port into his belly. Deep breaths and stay calm, Oliver needs us to stay calm. If we start freaking out not only will he not get the care and medicines he needs, but he picks up on emotions, and losing it in front if him will probably make him even more confused and frightened.

Oliver has now calmed down and snoring in my arms. :)

Unfortunately we've watched Oliver have several seizures over the past few days. We are starting to recognize the signs that one is coming. It usually starts with some arm tightness and then unprovoked crying or fussiness, followed by an unearthly scream unlike anything else you've ever heard. After this his entire body, neck and head will arch backwards and he's screaming at the top of lungs, his eyes are rolled into the back of his head and his legs and arms start twitching. They are terrifying to witness and we give him diazepam (valium) right away to try and stop the cycle. His antiseizure medicine has also been increased to try to prevent them from happening in the first place. Yesterday we watched him have four of them in a row. He had barely caught his breath from one and it would start again. It was awful. Finally they stopped and a 3 hour nap followed. He catnapped throughout today too, they really wear him out. I hope we can get them under control soon.

ok, I am going to try to move him from the rocker to the bed. We'll see how this goes.


-posted using Blogpress on my iPhone

Please contact Denise by Monday, October 1st if you would like to go, so that she can get a final head count in time for the event. This is an "adults only" event and there will be a cash bar. There will also be a silent auction of baskets put together by all the departments of BHS and a regular auction of some larger ticket items. All proceeds will go directly to Oliver.  She can be reached at musserd@bethel.k12.us or at Bethel High School ext 428.

We hope to see you there!

Doctors and butterflies

We had an appointment at CCMC this morning with Dr. Radar who did Oliver's gtube surgery. She took out the button that was too big and causing friction, resulting in granulation tissue around the site. Very gross and sensitive tissue that he never had issues with until this wrong size button debacle. Well now he has the correct size in! Yippee! She used silver nitrate on the granulation tissue and sent us home with some to treat it a few more times on our own. "Treating" it means chemically burning it off, yikes. Our boy is such a tough cookie. At first she was going to have us go to his pediatrician a few times to apply it, then she reconsidered and realized that we were perfectly capable of doing it ourselves. As far as MLD is concerned we probably know more than 99 % of the population, and as far as our son, we know 100% more.

We were in and out of the appointment incredibly fast, and I don't mean that the Dr rushed us, not at all. Just all that annoying waiting you tend to do at appointments, we had none of that. From the minute I walked up to the secretary they brought us pretty much right into a room, and Dr Radar walked in the door 3 seconds after us. We hadn't even sat down. Oliver gets VIP treatment at CCMC and I sometimes wonder if it's because of the serious nature of his condition, or because they have a post-it note in his chart that reads "Don't piss off this Mom!". Maybe a little bit of both. Did I mention he got not one, but two stickers at the end? Yup, that's right, Oliver is VIP all the way!

The entire visit was so quick that we only paid $1 at the parking garage, that's a first. We also had time to go to the Rainforest Cafe only a few minutes from the hospital. Ollie's Grammy Ciparelli met us there. Oliver loved all the sights and especially the sounds, that place is loud! I think that was his favorite part! He loved the gorillas and we moved tables to sit right next to a giant yellow butterfly that Oliver was fascinated with. Now he is sleeping in the backseat, the rainforest wore him out.




Look at those cheeks, he's put on weight. He's finally into size 24 months.




Loving the huge butterfly!




Do you hear those gorillas Dad?




Dr. Radar changing out his button. Hooray for size 2.3!
Oh and I've heard from several people that the donation button isn't working right now. I'll see if I can fix that as soon as we get home, maybe after a nap...

90 days

90 days. That's really all it took for MLD to take nearly every ability from our son. 3 months. That's it.

At the end of June Oliver could walk, talk, swallow, sit up, control his legs, control his arms and fingers, roll over, pull himself up, control his head, blow kisses, giggle, play with toys, tell us he loved us...

Now he cannot do a single one of those things. His retained skills include his ability to smile (thank God), he can still hear, and he can still see, but we're currently witnessing him lose his sight. To say it's been painful to watch him go through all of this would be an understatement of incredible proportions. It has been torture, that is really the only way to describe it.

His sight is starting to become affected, and we're seeing his eyes do very strange things. Darting back and forth, rolling back, pupils being either very dilated or not at all, regardless of light. He doesn't track you if you walk across the room or even move back and forth right in front of him. He doesn't track toys, he doesn't always blink when things are near his face and he probably should. He can't focus on things very far away and is starting to struggle with close up. I'll be holding him and he'll be looking away and I'll say "Hi baby, I love you, look at your Mama." And his eyes won't budge. I cry just thinking about it.

We don't know to what extent he can actually see, because he can't tell us and there is really no way to gauge. I just know that I don't want his whole world to go dark, since day one of his diagnosis it's been my biggest fear. I would give up my ability to see for the rest of my life if he could just retain his ability to see for his unfairly shortened life. How evil is this disease? Isn't it bad enough that it's taken away his ability to move, talk and eat? But his sight? It seems the cruelest of all. To not be able to see the faces of his Mommy and Daddy as we hold and comfort him? To not be able to see all the people and other things that he loves like Elmo, lions, dogs and his Daddy's silly dancing? It makes me sick to think about him becoming blind and being scared. Nothing is worse than him being scared. I feel physical pain at the thought. I feel helpless.

Scared, needing his Mommy and Daddy, trapped in a world of darkness, struggling to breathe, no idea what is happening to him. Sick. This disease is sick. And it all happened so fast.

Here are some pictures of Oliver from June...












And here are some pictures from Oliver in September

Chris and I have both taken leaves of absence from work so that we can spend our days like this...






The iPhone was playing white noise to help him sleep, we aren't just using our son as a table. ;)