Monday, June 3, 2013

remembering Max: the longest Thursday of my life: part III, when it turned into Friday

it makes me sad that i am letting so much time pass in between these posts. i think about them all the time, and the right way to say what happened. but sometimes words just don't do a good job of telling the story. i think that's where i am. i am at a part of Max's story that is just so hard to verbalize. i've never used the backspace bar more in my life. i think it's because while his passing was the hardest thing i've ever experienced, it's also the most beautiful and making that come through is difficult. but i can't avoid it anymore. i have to finish. and so here i am to finish.

after Denae left, we spent time together in a way normal families do. we talked. we laughed. we cried. the girls colored and watched movies and played with toys and played with Gammy + Grandma + Grandpa. my dad arrived. i felt so relieved when he walked in. like he was the missing piece in being there. we hugged. we passed Max around so that everyone could have lots of moments with him.

at one point i was holding Max, and Alice came in and started singing to him. the girls have been totally into the Sound of Music lately (makes their mama so proud), and Alice's favorite song is the song, "So Long, Farewell" which she calls "the bum bum song." (let me explain -- she calls it the bum bum song because on the instrumental part after they say their phrases like "i hate to go and leave this pretty sight!", i always sing the instruments like this: "bum ba da bum bum bum bum bum, bum ba da bum bum bum"..... so she just started calling it the bum-bum song. i'm sure that makes a lot of sense to you reading this, huh? well hot dang. let's just say it's hard to explain why she calls it the bum bum song. plus it's irrelevant to my story. so. yeah. anyway.).

so as i was saying, i was holding Max, all the adults were in the bedroom, and Alice pranced into the room while belting out the words to "So Long Farewell" to Max. it was about the most tender thing in the world and we were all a hot mess, crying our lil eyes out. she just knew, you know? and lemme add, sometimes people just assume that Alice didn't really understand what happened and that she doesn't really get it ... but i think back on that moment, and many others similar to it, and i know that she did understand what was happening, and does understand what happened in her own 2-year old way. and while some may assume that she is too young to understand and too young to remember, i have to hang onto the hope that she knows -- and that her memories of Max will be real because of the real role she played in his little life. i have memories like that ... where i've seen pictures or heard so many stories from when i was technically too little to remember, and yet the stories feel like memories to me. i can see and smell and taste things. i can feel fabrics and see movement beyond the photographs. and i like to believe that Alice's memories of Max will be much the same.

(this is just a little snippit of the video -- i have a longer one i hope to share in the future)

the rest of the night was very long. we didn't know the night was going to be like this, so we had no jammies, no diapers for Alice, no toiletries ... nothing. my girls normally to bed around 8 -- and by 11 pm, things started getting a lil wonky (as you can imagine). a big thank you Grandma and Gammy who helped calm the girls in such un-ideal circumstances -- because they sure weren't easy that night, and yet we needed them there. i think we all needed each other that night.

and boy do they love their Max.

our favorite nurse, Molly (sweetest lady in the world ... NICU nurses are special people, i tell you what) came in around 11:30 pm or so and told us that when we were ready, it was probably time to take off his oxygen.

those things just aren't easy to do. the thoughts would come rushing back:

"you're giving up on him..." 
"a good parent would never do this to their child..." 
"this is killing him..." 
"you are killing him..."

the adversary wants us to feel despair and be miserable, doesn't he?

but we were protected. Heavenly Father was carrying us, and because of that it was easy to push those thoughts out and rein in the tender mercies:

"He told us Max wasn't going to make it. this is part of His plan for Max, and i must trust in Him."

once we took the oxygen off, Max continued having breathing episodes - - except they were much more unsettling because the looming thought of "is this it?" was in the back of my mind, and all of our minds every time. thinking about that brings back the same anxiety i felt laying there on that bed with him. i remember thinking, 'no no no, i'm not ready. just one more kiss on his cheek.' and then i'd kiss him. and then i'd smell his sweet smell. it is one of my favorite things, and something i'm already starting to forget. i hate that. but that anxious feeling, it's still alive and well. i wish i could pick and choose the things that decide to stay around.

one of his breathing episodes happened around 1:00 am. a minute went by without Max taking a breath. then 2. then 5. then 8. this was it. we called the nurse down to come and confirm that Max had in fact passed away. she immediately came -- put the stethoscope to his heart, his lungs ... and confirmed that he had indeed passed. we all cried. M and i hugged. the nurse even cried! she excused herself to go and get the doctor, and we began passing Max around for everyone to say their goodbyes. the doc came in and my dad was holding Max. i don't remember what the dr. was saying, but i remember looking over to my dad who had a flustered, almost panicked look on his face. he was whispering something to my mom. later i learned it was the words, "um. he's breathing. this baby is alive!"

as my dad passed Max to the dr. she confirmed my dad's whisperings -- Max was in fact alive. how could this be??? what a little prankster! the nurse was totally freaked out - she kept saying, "i checked multiple times! and multiple places! there was no heart beat. i am certain!!" finally, she left our room, never to return. seriously! she had like 7 hours left on her shift and we never saw her again. poor nurse. and i know it sounds strange, but it was some much needed comic relief. we all laughed so hard that all of a sudden Max came back in my dad's arms....the poor guy was a little traumatized! i mean, that sort of thing just doesn't happen every day. we like to think that Max knew that it was just the type of thing to make my dad laugh....and, not many people know this, but it was my dad's birthday on March 15 .... so to me i see it as such a sweet gift for his Pops that he came-to in his arms on his birthday.

and while it was a super funny moment, it was also a super special one - because when he came back after not breathing for almost 10 minutes, he came back a completely different newborn. let me explain -- in the days before, Max's brain abnormality was pretty apparent. his eyes would wander some, one of them was hardly open. we'd have tiny glimmers of alertness where we'd see him and he'd see us - but those moments were very few. well, when he came back that night, he was fully alert. he had eyes to see, which allowed us to really see him. it was incredible! we kept staring at him, and he kept starting back at us, as if we were getting this chance to know each other and memorize each other before he had to return home to stay. i like to think that he really did pass away, and went to Heavenly Father and asked to stay just a little longer, and have the chance to really see us without his limitations, and let us see him without those limitations...and that God gave Max that gift. those hours with Max like that were some of my most favorite moments with him. heaven was literally in our arms.

the rest of the night was a blur. i mostly remember whimperings from the girls' restless night, the cadence of Max's breathing, the sound of disney movies in the background, the whisperings of a worried Grandma and Gammy, and nodding off with Max in my arms.

and then it was Friday. the day i've been dreading writing about most.



Michelle said...

beautiful. I think you are doing a wonderful job telling Max's story. Although I can't even imagine how difficult it must be for you, I think you convey how beautiful the whole experience was also. You and Max have truly strengthened my faith and testimony. Thank you for sharing this very special and sacred part of your life with all of us. xoxo

Kristi said...

What a miracle Marci. I am here just crying my eyes out in heartbreak for you but also in the beautiful miracle that God granted for you that night. You are an incredible person.

Miss Morgan said...

I'm sitting here barely able to see my computer screen because there are so many tears in my eyes. You truly have a piece of heaven in your life for eternity. Thank you for sharing it with all of us. Your strength is amazing.

Levi H. said...
This comment has been removed by the author.
Torrie and the girls said...

I deleted the previous comment, i was logged in under Levi. this story is just so precious, thank you for sharing, there is a lot of crying of course, and then comes the hope we have in the Atonement, I love it! This sweet experience makes me want to be a better mom, thank you.

Becca said...

Thinking of Ellie saying goodbye to max makes my heart break. You wrote this beautifully and it shows how amazing your little family is. Love you!!

Jana Weaver said...

Wow, such amazing, beautiful memories you've written. Thank you so much for sharing Marci.

Ashley said...

Max coming back after asking Heavenly Father for a little more time with you all? Oh, my heart. This story is very very familiar. The same thing happened with my dear brother when we were all very small. So grateful Heavenly Father let him come back to us for a bit. His influence shaped who I am. These special HUGE spirits we are so very very privileged to be around. Anyways, touched my heart greatly today reading your powerful words. You are a very special Mommy. Thank you again for sharing. :)

Jessica said...

Alice's goodbye song to Max was so precious. <3 She is a very intuitive and loving little girl. Both your girls are so sweet. How wonderful that you got to have some alert time with Max when he could truly be with you. Beautiful.