mommy, what is heaven?

if you read max's regular blog, you already know that max is in the hospital for a neutropenic fever. today, i went and photographed max in his hospital room. this is what i saw when i arrived...max laying in bed, all covered up with his 'couch blanket' from home, and his mom reading him a story (and a bunch of infusion bags and pumps).

melis was reading max little house on the prairie. seeing the joy on max's face as his mom reads to him is such an amazing thing to witness. i'm not sure i can even put it into words reads. max smiles. he laughs. max stares off as he envisions the words he hears his mom read. mom shows him the pictures. max asks questions. more smiles and giggles from both.

melis told me that max can be sobbing, in pain...and she can pull out a book and start reading to him and it will help him calm down. reading is their special medicine.

then max said, mommy, my legs really hurt. melis told max that he doesn't have to sit in pain and he should tell her right away...tell her right away, when the pain first starts so she can get him medicine to help the pain before it 'really hurts'. melis hit the call bell and asked the nurse for some pain medicine. the nurse came in and asked, the big lortab or the small one? the big one please. the nurse left and when she came back, she dropped off the syringe of yellow medicine at max's bedside. i'm assuming this is something that regularly happens b/c it all transpired pretty naturally...the nurse dropping off the pain med and melissa giving it to max. melis disconnected max's g-tube feeding and gave the lortab through his g-tube. it was followed by a flush of saline, which seemed to bother max a bit. that's enough mommy. that's enough.

after the medicine, melis got back to reading. i'm not sure what the section of the book was about, but i heard the following:
mommy, what is heaven?
what is heaven?
yea, what is heaven?.

heaven is where people go when they die. like grandma. grandma xxx is in heaven.

and reading begins again.

but the reading didn't last for long. melis told max that she needed a little break from reading and asked max if he was tired. max was. melis said that maybe they could take a little break from reading so max could rest. max turned his head to the side and shut his eyes. and melis teared up. we glanced at one another. not a word spoken. melis wiped away her tears. the phone rang. a call that melis had to answer. and with tears in my eyes and a lump in my throat, i went back to shooting.

i've never seen this happen. through everything that we've talked about and everything i've witnessed, i've never seen melis anything but amazingly strong. i've never heard a quiver in her voice. i've never seen a tear shed.

and in saying that, this was a moment that melis showed the most amazing strength.

and then max slept. i took a few more shots of max sleeping and then my time photographing max was done.


  1. I have no words, really. I'm sitting here in tears as I view these images of this sweet child and his mom, thinking about what they are going through. I cannot imagine her heartache and her longing to be able to fix everything for Max. As always, they are in my prayers....

  2. I want so much to make comment but tears are just flowing--the words that keep going through my mind are "never, never, never give up--as long as there is breath there is hope. Praying without ceasing.

    You haven't experienced strength until you've experienced Andy and/or Melissa with Max. Your pictures and essay bring this to life for all to know and understand. Thank you again Deb!!!

  3. Melissa is quite amazing. So many times I focus on Max and his courage, without recognizing Andy's & Melissa's bravery. I think Max gets much of his courage from them and how they handle things in a calm and positive way...yet the desperation they must feel! They are truly heroic. -lisa

  4. Melissa, you and Max are in my prayers, today and everyday, as is the rest of the family.

    With love,

  5. Deb

    Thank you for the real person you are and being there for all of us!

    Melis I do not have the words just a fat hug.

    Max you are my HERO!


  6. Deb, Thanxs 4 thease pics, the photos u shoot are great and show what realy gos on in a NB child;familys life.
    Max, keep up the fight and I am praying

  7. Max is a warrior and my hero, truelly. God bless you and keep you dear one. L O V E

    Sera, Bella, & Kaia

  8. ps Max, you are beautiful and Melissa, you are an angel.


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