Saturday, May 18, 2013

remembering Max: the longest Thursday of my life: part I

i've been stuck. stuck on writing about the longest Thursday of my life. i sit down to write, and i write a few sentences, and then i cry. i try to write some more but the words just haven't come. the longest Thursday was also the toughest Thursday, the sweetest Thursday, the sourest Thursday, and the all-around-emotional-est Thursday. lots of ests. words still aren't being super cooperative with me to explain and recount it all, but we'll try our best to collaborate and work something out...because i've just got to finish this thing.
when we got to the hospital that day, we knew immediately that things weren't right. Max looked fragile and frail-- where before his fighting spirit shone through his teeny physique. he was grimacing and wincing -- where before he had been calm and serene. he was uncomfortable even in our arms -- where before he'd nuzzle right in when we'd hold him. it was apparent that the impressions we had experienced the night before about his precious life were spot on, and that he was fading more quickly than we had anticipated.

our doctor (and good friend by this point) Dr. Eusterbrock came by Max's side - and asked to talk to us. he was somber. (never a good sign). he explained that Max had been experiencing many breathing episodes through the night, where he'd stop breathing and the nurses would prod him and put an oxygen mask on him to help him breathe. well, because of his Tracheaesophogeal Fistula, his windpipe had been malformed during development, causing oxygen to go into his stomach. this meant that every time they'd put an oxygen mask on Max, the oxygen would also pump right into his stomach. this was the source of little Max's pain -- and Dr. Eusterbrock informed us that it would also be the way he would die if we continued what we were doing without doing surgery. the stomach would eventually rupture from all of the pressure unless we did a surgery to let that oxygen out.

that haunting word again: surgery. 

the problem was that if they did that surgery, they also would simultaneously need to do another surgery to fix the fistula. and then almost immediately after that, they'd need to do an open heart surgery to repair the hole in his heart, since that would be problematic in his recovery. and so the domino affect of all of these things were apparent once again. but, Dr. Eusterbrock reminded us, Max had only a slim chance of even surviving surgery because he was so fragile.

tough decisions. impossible decisions.

as this information was given to us, i distinctly remember M looking at me, then at Dr. Eusterbrock, and asking him, "what would you do if you were us?"

Dr Eusterbrock looked down. he got emotional. and then he abruptly excused himself, asking if he could go to his office to consider everything in private.

and then M and i were alone with the information. we looked at each other, and again, we just knew. we knew Max wasn't going to make it. we knew that whether it would be death by surgery, or death by simpler means, he'd die. we were worried about Max's discomfort and pain -- but realized that doing surgery wasn't going to necessarily diminish that. and so we decided that no matter what Dr. Eusterbrock said, we wouldn't go through with the surgeries.

Dr. Eusterbrock finally came back. he was very diplomatic speaking to us at first, explaining again several scenarios. M then gently interrupted and said to him, "look, we know he isn't going to make it. not scientifically -- call it spiritual guidance or whatever you will -- but we know he doesn't have long to live. so we have decided we aren't going to go through with any sort of surgery." there was a silent moment ... and we then asked what he thought of our decision -- and he confirmed that he believed it was the right one. that if he were Max's father, he'd do the same thing.

to me, there aren't more comforting, reassuring words that a doctor can say.

after that moment, we stood around Max in silence. i remember crying a lot. whenever he was in my arms, i couldn't hold it in. i'd just sob. M couldn't hold it in either. the feeling of having to let go of this perfect little soul was incredibly painful - especially since it felt like we were choosing that for him. 

"you're giving up on him..."
"how could you choose death?"
"fight for the life of your baby -- that's what a loving parent would do."

those were the thoughts that i remember coming into my mind once we made the decision to not do surgery. but anytime thoughts like that would try creep in (stupid Satan), i could feel Heavenly Father's arms and the Saviors love envelope me and remind me that we weren't choosing these things -- He was. He was guiding our choices, because ultimately this was His plan for Max -- and Max knew it, and accepted it, and so we needed to do that too. i think that was one of my favorite things about those days -- that heaven was so close, and so tangible. i could almost feel God with us, keeping us safe. watching us, making sure we were ok. i miss that safe, peaceful, heavenly feeling. that feeling was so very real -- especially when Max was in my arms.

and i think that's where i'll end for today, on the thought of that sweet lil babe in my arms. it will always be one of my very favorite things.



Mel said...

Oh Marci, I can't even imagine. Thank you for sharing your sweet, tender story.

Lisa Johnson said...

I'm sitting here w/ tears just streaming down my cheeks after reading this brutiful (brutal & beautiful together) post. Thank you so much for your example of faith and courage. Thank you for sharing your testimony of a loving Heavenly Father and His eternal plan for all of us. What an incredibly valiant spirit Max is!!!

Amber said...

I am so impressed by your testimony. And I know that it comes from doing the right things in your life. I want to be that familiar with the voice of God, and with following His will.

Becca said...

This was so hard to read that I can't imagine how hard it was to write. I love you guys and I love the gospel. Xoxo

Tiffany said...

tears and love for you Marci...thank you once again for sharing such sacred intimate moments...they have truly touched me xoxo