Thursday, May 7, 2009

Purple Heart- how fitting.

People kept asking me if Lily got her purple heart yet. I heard rumors of the famed purple heart. It is a very special Bead of Courage, given on completion of chemo. To me, that is when I'm done giving her the nasty mitotane four times a day, in 6 weeks. To the rest of the group- it's after her inpatient chemo. That works too. It was the worst part, I think, I would hate to jinx any future parts though.

Today was the awards ceremony. Lily went shabby chic, in a fabulously downscale, hip, yet comfy leopard print cloak style dress. She chose not to utilize the matching belt as to not distract from the designer applique featuring her idol and explorer friend Dora, yet this also gave her the freedom to sache confidently with her hands in her pockets. The purple ballet flats said I can walk, I can stroll, I can go with the flow. Seen on the red carpet with her were mom, dad and sister Bella who we will definitely be seeing more of . She has a fresh disregard for conventional style and likes to mix up her ensembles with multiple patterns, colors and directions.

It really was a typical day in clinic. Everyone seemed fairly sedate, which is more than understandable considering the loss that has been sustained this week. Extra hugs abounded, yet Lily's mood deteriorated as the day progressed. Phil went with me because her hemoglobin was 7.2 on Monday, at 7.0 they transfuse- which would be an all day affair. She came in at 7.1. Sigh. She knows to ask the hard hitting questions when they walk in the room with the white sheet of paper " Can I go home?" - yep today we can. Not really wanting to stay for the award of the beads- Lily hops into the stroller and starts doing her "I wanna go home "chant. Not until Florence appears with a box full of purple heart shaped beads, does she stop. "They are all unique- you can pick which ever one you want." They are all amazing and all so different. She finds one that has the face of a puppy- this one! She cradles it like a puppy and holds it up proudly. Miss Julie stops in to get a Lily fix and with her she has a certificate- for bravery.

The psychologist checks in on us. She mentions that when they lose a friend, the other oncology parents and kids have a tough time. Yeah, because the rest of it has been easy, although I see her point. I have felt it. But Lily is really too young to understand. It's more about us. She also mentioned that for awhile, this part may seem more difficult than before, meaning the finishing of treatment. She points out that everyone around you expects your life to return to normal, yet you are still struggling with the emotions, the fears, the cautious optimism and it feels anything but normal. That I can understand. Even I thought that once we didn't have to schedule more treatments, doctor's visits, echos, audiograms... it would feel easier. But when we were going through treatment I had no time, it was an acceptable excuse not to have time to do anything else. But now what? Now I am trying to cook, clean and I am as tired ,if not more so. Like my exhaustion light switch would just be flicked off because a part of her treatment was finished. And now that we don't have to be into clinic every other day, I'm forced to spend my time in the house that is a disaster because for the past 6.5 months I have chosen to let that go. And I am slightly emotionally drained. Just a skosh. I know Phil is feeling it too. He tries so hard to help me out, to lessen my load and more often than not it just makes me feel like a failure. It's not that I can't do it, I just don't want to. I know that's not his intent, and he is working doubly hard to show his appreciation for all the times I did it all myself- so I know he is feeling the exhaustion. I think this is one of the times I will be forced to say it- my mom was right. Weeks, months ago- she said be gentle on yourself. I think I am going to be gentle on myself for awhile- probably AT LEAST until after we go to Disney. So if you stop by my house before then, it will be messy and probably dirty. My kids may or may not have brushed hair, teeth, clean clothes or perfect grades or attitudes. This year I just hope they make it into the next grade.. where we will catch up and have a fresh start. I will do things I want to do, and continue to let some of the other stuff slide. I will try to yell at the kids less, and hug them more- although I really don't think it's possible, plausible or probable. I am going to sit on the lanai more and just appreciate the breeze. I am out of shape and because round is not my favorite shape, and I am going to look for a new one. I am going to start planning our finished with treatment party, because then it will surely get here faster. And I will celebrate the ordinary, the mundane because I have made a difference. I created a Little girl named Lily who is one of the biggest champions I ever met. I will celebrate her brother and sisters, who are also champions for fighting this battle, and just for being them. I will be thankful for each and every one of you who has made our journey easier and funnier or just given us something to bitch about. And although I promise to thank my husband privately- I must say- there have been times I have doubted I could get through this, but I have never doubted that WE would get through it. And when one of my girls comes home declaring at 15 that she has found the love of her life- I will lecture her on the probability of that not being the case and urge her to continue her own growth as an independent woman and all that parental psychobabble we are contractually obliged to spew and in my heart I will worry that he may be the one and hopefully he's a good one too - because sometimes in life you find your soulmate when you are still a child. I was lucky enough to.


  1. Lily -- You are a very brave girl!! You have worked so hard for all of your fabulous beads, and I love your purple heart. And you really deserve them, and a lot more. I am so proud of you! Keep being as brave as you are and keep working hard to be healthy. That means resting and being happy, and helping Mom and Dad to rest and be happy too. I hope I get to see you soon! I love you so much! - Love, Grandma Allen

  2. Jen and Phil--Your glass is half full. You chose to spend time with your children, and a very sick child. In the process of prioritizing, some things are put on the back burner. I hope the two of you have an opportunity to spend some time together enjoying each other very soon to catch up with each other. Stay positive and believe! Love you, Mom

  3. How wonderful to be inching along! Congrats on reaching the purple heart. A vacation to Disney sure is going to be a wonderful gift for your entire family--Have a wonderful Mothers Day.


  4. Congratulations on the purple heart, Lily! Jen, you brought me to tears once again. I hope you can truly be more gentle on yourself--I know that's easier said than done sometimes. Love you!


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)