Good Grief

What does grief look like?  It is presenting itself in a wide spectrum.  Sometimes feeling completely incapable of handling something as ordinary as sitting in traffic, listening to a song on the radio, or engaging in a casual conversation.  Sitting in a therapy session incapable of breathing because the therapist asked Marlowe's name and I couldn't get it out.  To say we have a lot of work ahead of us is an understatement of gargantuan proportions.  There is a lifetime of work ahead of us.  There is no closure, no end, only adjusting and healing.  As with most tasks we take on, we're going full force.  Therapy, support groups, doctors appointments.  Reprogramming what the future looks like, while allowing as much slack as possible.  Since the day Marlowe was born, we've been taking each day as it comes, and we have to continue to allow ourselves to figure out what we need and what we can handle day by day.

Mother's Day

Dear Marlowe,

Mother's Day felt empty without you here with me.   I know it won't always hurt this way. You have already taught me so much and I now know that I am stronger than I ever thought I could be.  On my darkest day, I have you to hold in my heart, which will make it beat stronger than it could ever beat on its own.

I love you always.

xoxo,
Mommy

Hearts

On Thursday morning, we said goodbye to our sweet Marlowe Rose. She's taught us and our families the power of resilience and support. 

The support from everyone here and on Lotsa Helping Hands has been overwhelming and we don't yet have the words to articulate our gratitude. Thanks just doesn't seem enough. At this most difficult time, we are grateful for everyone that has touched our lives and more importantly, Marlowe's life.

We'd be honored to receive your notes or thoughts at MarloweRoseSimon@gmail.com.  We would like to encourage Marlowe's supporters to make a donation in her honor in lieu of flowers.  More details to follow.

Much love,

Scott & Stacey

Field Trip

Marlowe's goal last week was to increase her feeds so that she would rely less on her IV nutrition.  As of Friday, she was doing brilliantly.  She was steadily increasing her feeding, and was completely off her IV.   She started getting some of her meds through her feeds, with the goal of decreasing her reliance on IV medication.  Saturday morning she began to vomit, and has since been back to only getting nutrition through her IV.  The doctors felt they needed to do some additional testing to determine what was causing the intolerance.  Marlowe has only left her room three times in her life.   Typically, anyone who needs to examine or test her will have to come to her.  It was a long day and night for her, and 24 hours later we're still waiting for answers.

Marathon

It may be because of the Boston Marathon earlier this week, or the fact that one of Marlowe's favorite nephrologists ran, but there has been a lot of talk of her treatment being a marathon not a sprint. Marathons are physically and emotionally demanding.  While Marlowe takes on the physical challenges, we are there with her every step of the way.  We didn't get to train ahead of time, don't know what the course looks like, or what mile we are on, or how many heartbreak hills there are.  Luckily we have many fans cheering for us along the way.

If you didn't catch this story about the last man to finish the race, it's truly inspiring.  Love is strong.

http://commonhealth.wbur.org/2015/04/maickel-melamed-boston-marathon-last

Four Weeks

I'm four weeks old today!  Just partyin' with my buddies Ms. Teddie and Mr. Whoo.

Updates

An update on how Marlowe's week has been.  She has continued her dialysis at small volumes and has been getting rid of excess fluids.  For two days this week, her total fluids out were higher than her fluids in.  This is a big deal for Marlowe since her fluids have to be so closely monitored for fluid overload.  We can visibly notice that her face and limbs are retaining less fluid.  The dialysis volumes are lower than they were last week, but the doctors are taking it slow and watching the catheter closely.  Since her dialysis is working, her feeding had increased.  Her diet has to be restricted and most of her nutrients are through an IV.  As the feeds increased, she wasn't fully digesting the milk so she has been off and on milk all week.  This is an ongoing goal for her to tolerate more feeding and rely less on the IV.

Marlowe's becoming more alert and with more time awake she has been spending more time out of bed.  She has finished her first book club book with Mom, enjoys Dad's goofy songs, and cuddle time with her grandmas. Thanks for all of the thoughtful messages and cards, it helps us to have everyone's encouragement...plus it makes her room look pretty.