our stories, our bad days

I started this post a long time ago and never found a way to finish.  But it keeps floating in my head.


My world is getting a little bigger in ways that I wouldn't have necessarily asked for.  If Maximus wouldn't have gotten hurt, then my world of understanding medical situations would have stayed smaller.  My eyes get opened to so many more cases.  My heart gets opened, too.


I get updates on a little boy that is about Eva's age that has leukemia.  It tugs at my heart in so many ways.  Or how about my friend whose husband has leukemia?  So many stories.  Or how about the stories that don't get to get shared.  Or if they do it's with a promise of secrecy in hushed tones.  Ones about relationships, or betrayal, or illnesses where the enemy isn't always defined?  Those stories don't get publicly supported so much. Even though those are the ones that may need it the most.  


I am grateful that this is a trial where I can talk openly and the solution is so clear.  I know not all trials are like that.


 A few weeks ago, during the thick of things back when Maximus was still in the hospital, my friends pulled together an emergency outing of sorts.  The kind where we gather, and probably eat, and then they give me the conch and I talk and talk and talk and the listen, listen, listen.  Nice, huh?  It had to be at 9:00 at night because with all of our mommy responsibilities, that is the only time we could all meet.  One friend handed me some money and said some was from her friend that lost her husband to cancer and some was from her little girl who has been selling snow cones.  Both wanted to help baby Maximus.  Now those are some stories.  


We were waiting for the rest to show up.  All those stories of all these people were swimming in my head.  


A lady asks, "Do any of you have a cell phone that I can call long distance on?"  and then puts her face in her hands.  She lifts her head to say, "This has got to be the worst day ever." and returns her face to her hands.  My friend goes to her and shares her phone.


The worst day ever.  There are lots of stories going on.  I kind of braced myself.  


After she hung up, she returns the phone and explains that she was from out of town and her husband left her make-up bag at home and she had a wedding to go to (not her own) the next day.  That explained her little bag of purchases from the make-up store in the mall.


That was it.  That was her worst day ever.


Here I was, holding cash from a mom my age that has just recently lost her husband to cancer who wanted to help my family pay for Maximus's medical bills.  Standing in front of me was a lady that was having the worst day ever because of make-up  


In a way I was kind of happy for the lady.  That this got to be the worst thing that has happened to her.  Lucky her, right?


I am kind of feeling sorry for myself right this second.  We were supposed to go on some really fun trips this summer.  And trips have always been kind of our thing but these days the only trips we seem to take are those to hospital.  Eva and Samuel asked me why I don't take them places anymore (even though we have so many people help us and have made sure they have had a great summer, they still remember when I used to take them everywhere).  Eva told me that she had a dream that she drew a picture and it won a thousand dollars in an art contest and so her and Samuel could join Karl's family on their family reunion trip.  She said it was so much fun to play with her cousins and was sad when she woke up.  I am feeling so sorry for my older kids, too.  They haven't complained a single word and that almost makes me feel worse.  And how about how much I dread having to hurt my baby so bad that he screams, cries, sweats, then finally falls asleep from the pain.  And we have to do those stretches three times a day.  I thought it would get easier but it doesn't.  And he is getting smarter and so the anticipation of the stretches is causing him pain, too.  My kids can hardly look at his hands without cringing.  And how about his donor sight itching so bad that he scratches and scratches with no relief and the skin was broken today where he has been itching the most? And I can't stop thinking about how much more work it is to "be careful" all the time so we don't have one more thing happen.  


I hate that we are managing to have a good time despite the situation.  Because I am lazy and just like to have a good time despite nothing.


Even when I am feeling sorry for myself I don't stop being grateful.  So many people have done so much, have cared so much, and reached out so much.  I am grateful that my story is one that I can share and that I can talk about and publicly process and get help with.  I am grateful that my story is one that, if we just do what we are supposed to,  is practically guaranteed a happy ending.  I am grateful that I understand a little bit more and realize that not every medical story ends that way. 


But, humor me when I say that, every once in while I wish that my worst day ever had to do with something like forgetting make-up.