Tuesday, May 13, 2014

He's not doing well. It's now been 20 days that we've been watching him slip away from us. Each morning I wake up and think "I can't do this, I can't make it through another day of this" and each night I'm surprised that somehow I did. I don't know how I did.

His breathing has been very slow and very shallow and has been for days and days and days. He's skeletal, it breaks my heart to see all of his bones, his body stopped digesting food 2 weeks ago. His face, his eyes and cheeks are sunken and bluish. I cry at what MLD has done to our son. I scream at the unfairness of all of this. Our baby boy, I am so so sorry. I feel like I'm falling into a dark abyss, this is every parents' worst nightmare, and I'm living it. Most days I can't believe this is my life, staring at your own child wondering which will be his last breath. It's torture. Our chubby cheeked sweet boy that loved giving hugs and pointing at cars. We don't know how he's still hanging on. We continue to hold and cuddle and kiss him. He's holding on and we're not sure why.

Saturday, May 10, 2014

Still fighting but not fighting alone

Oliver got dressed up yesterday, along with pretty much everyone in the Bethel School System. Students and staff in all five schools went above and beyond and dedicated an entire day to our real life superhero.

Click the link below to see more photos of their superhero day. They even made NBC News! The Bethel Community continues to amaze us, their hearts are huge and their support of our family is endless.

News Story

Bethel Schools Superhero Day for Super Oliver(you don't need to sign up for flickr to view them, just click the X) The High School dressed up too, but their photos aren't on this link.

The past 2 weeks have been the longest of our lives. We've spent them holding Oliver and knowing that he may stop breathing at any moment. There have been a few times when he did stop breathing for about 20 seconds, we thought the worst, then he'd gasp and start breathing again. We stare at him, and flinch at the slightest noise or change in breathing. His breathing over the past 3 days has been even slower, sometimes as low as 5 breaths/min. Putting him down to bed each night is scary, we don't know what the night will bring. With a neurological illness like MLD everything is so hard to predict, including death. We sleep nearby, never quite asleep, always listening.

He remains very comfortable and is spending quality time with Mom, Dad and Thea. Still making each moment count.

Mom reads some new books. This one was called "Oliver's Game"

A photo canvas now hangs on the wall in the stairs to the basement(an early Mother's Day gift from Oliver and Thea)


Monday, May 5, 2014

No words

There are no elegant words that can be written to describe what we're going through right now.

People have been asking "How's Oliver?" and we've been saying pretty much the same thing each time, that "Oliver isn't doing well, but he's comfy." The second part is true, but the first part is understating the facts. The truth is, our son is dying. And although for two years we've known that this day would come, the time to say goodbye is here.

We've known since last week. We've been holding him, loving him, kissing, hugging, and cuddling him. These will be our last hugs and kisses. How is that possible? He only just turned 4.

Each day he has become more and more fragile, his coloring is blueish, his heart rate continues to slow, and for the past 3 days his respirations per minute have been extremely low.

But he is comfortable, and we aren't just saying that. His amazing nurses have given us such a gift. He is truly peaceful and in no way suffering.

We've told him that he can go whenever he is ready. Mommy and Daddy will miss him so very much, but it's ok to go now. We are so proud of how hard you've fought baby boy. We'll be okay, we'll take care of your little sister for you. Go run and play with the angels. We love you.

We all love you.

He's absolutely the toughest little boy we know or will ever know. Despite everything he has faced in his short time on earth he can always make anyone smile, and he blessed us with his own smiles as often as he was able. He's touched the lives of thousands and made the world a better place simply by being part of it.

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