That old Donovan song has been running through my mind sine the first night of Tuesday’s diagnosis.
First there is a mountain than there is no mountain, than there is.
They’ve kept Tuesday’s room for us on the oncology floor, even though we’ve been in ICU for a week now. It’s been a retreat when the ICU just feels too dark to handle. Full of artwork made by her siblings and neighbor kids; balloons and stuffed animals. All patiently awaiting her return. A place where we can take Piper to talk about her sister and look at her things. A place to get back to. Who’d of thought we’d be pining for the oncology ward. But I swear it’s like a fucking circus up there compared to the intensive care unit. This is the darkest place I’ve ever been.
Last night at 11:30 I had to pack up her room and move out. There were four new children admitted and they needed her room. I lost it. I started to take her hand painted “Fill Better Soon” signs down and became swept away by the hopelessness of it all. This is HER room! They’ve been waiting for us up there! Don’t they know we’re coming back!! They are going to need to put me on a respirator next. Four more admits? How is this happening? Four more families crushed by this new reality.
I fell asleep in the chair for a few minutes last night and dreamt that her hospital crib was full of hair. Piles of it. It was dropping off her head in huge clumps. It was like someone shaved a dog in her bed.
They gave me a keepsake box with a butterfly painted on the lid, to keep some of her curls in. I wonder what her hair will grow back like. Everywhere we go, people comment on the girl’s matching curly hair. Axel says he hopes it doesn’t grow back blue. Spencer says he’ll shave his head too. But only kind of short. I don’t think that really shouts SOLIDARITY but his heart is in the right place.
Today we continue to pray for pee. Lots and lots of pee. Everything is hinging on her passing these extra 5 liters of fluid. 5 liters. Can you even imagine? No. Of course you can’t. You can’t imagine any of this.
Please hang in there JK. I know this is hard. I know there are many road blocks… but know we are all behind you and Tuesday. Hang in there…. praying for pee.
It sounds like you all need some extra prayers right now.
You got it. Hang in there.
OK JK. My heart is breaking for you.
This is something no mom should ever experience and I am so very sorry you are there dealing with your new "reality". It sucks! Sucks more than words can ever express and i am sure sucks more than I will ever understand.
As hard as it is and as easy as it is for me to say…have faith.
I know there are moments that everyone questions God's path and God's will (I know I have been there myself), but try your best to find strength from the depths of your soul and have faith. God WILL see you through this.
And, we are here. Even if it's just for you to call me so you can scream in the phone, do it.
Do whatever you need to do, just don't give up hope.
Tuesday WILL pee.
Tuesday WILL be back in that room, and then she will be home.
I believe it with my whole heart.
Much love & faith,
Debi
Oh sweetie. I know that I can not even begin to imagine what you and your family are going through. š
I am praying so hard for pee!!
Love you!
I can’t exactly remember how I came to your blog but it was through another twin parent, one of those internet blog links to blog links. I have fraternal twin boys around the same age as your girls. I just wanted to introduce myself and let you know that my family is praying for Tuesday and your family.
OH, JK! I am so sorry. I am sorry Tuesday is going through this. I am sorry your family is going through this. And I am sorry that I sit here, helpless. There is nothing I can do. Please know there are tons of people praying for her. Praying that you will have your little girl in your arms to hold and to kiss. And soon. She is a spunky little girl (just like her mama) and she WILL beat this! She WILL kick Cancer ASS!! Hang in there!
I am praying for pee. Lots and lots of warm yellow pee. Enough to overflow a whole case of huggies diapers!
You are right, no one unless they have gone through this, can imagine how you feel.
We are here for you and TU TU.
Love,
Melissa and the boys
Wow, I,m so sorry that this has been such a hard mountain to climb. I know there are so many people there to help you climb this mountain and the next and so on.
When you need us, we will be there.
Hang in there JK
Jessica……OMG – of course, I can’t even begin to imagine – like I said to you last week, it is just not even something any of us can comprehend!! Your sweet little angel is a fighter and she will be back up on that floor before long and will be home, too!
It was great seeing Charley, Piper and the boys at the picnic (it seemed like a nice distraction for the boys especially), but it sure wasn’t the same without you and Tuesday. We continue to pray for you all…..and now we know we need to pray for bright yellow pee right now!! Big hugs to you all!!!
to mum and dad —
a stranger, of many, still praying for you and your family every day, serveral times a day.
blog it, blog all if it, none of it, or just some of it. whatever works for you.
you’ve got supporters in the tripple digits here, there and everywhere. i’m sure of that.
Praying for lots and lots of pee. Oh Jess, I just wish I could give you a huge hug! Words seem so empty right now and just so not enough. So I’ll do what I can do, bombard the gates of heaven with prayer after prayer and continue to get as many others as I can get to pray as well!
It doesn’t matter what color or shape her hair will come back as…it will always be WHITT HAIR ( and you know what I mean). Hang in there Tuesday and family.
All our love and prayers,
Aunt SUSU and Uncle Jim.
Love you so much! Prayers are being said constantly. Pee Tuesday! Pee!
Praying and praying and praying for pee
Erin
Hang in there JK. We’re all here to support you when you need it. sounds like you need it and so we’re saying extra prayers here for Tuesday.
Please pee, Tuesday.
I love you, JK. I’m here to listen no matter what. Whether you have happy words, sad words, mad and yell at the top of your lungs words to say. I know this must seem like an insane rollercoaster. I wish I could comfort you, but I know sometimes it’s not comfort you need but just more of getting out what you need to say and how you feel. Hang in there Momma. Tuesday WILL PEE and she will beat this!!!
XOXO Bre
I know it is now days later, and your state of mind might be different, but i am sending you strength and courage and spitfire today. Love you, love your family, and YOU ARE STRENGTH.
Smooch!
Marne
Dear GOD, we pray right now that You reach down Your hand and TOUCH little Tuesday’s body. Touch her kidneys so that they function properly and rid her of the retained fluids. Let her lungs be able to completely fill the cativity that they are meant to fill so that Tuesday takes big comfortable breaths by her own means. Cause her to be able to come off the ventilator into her dear mama’s arms. Touch her dear mama, Lord, with peace and expectancy. YOU are a Big GOD, You can take our hurts, fear and anger. Let us not stop running to You in our times of need. In Jesus’ precious name we ask these things. Amen.
Love, Jenn H’s Mom
JK, i pray for you all the time and everynigth i make a special request to may Angel Son Fernando, to watch over Tuesday health and to ask GOD to make her better soon.Keep strong, i cant even imagine how hard this is, but if someone can make it thru this that is YOU
going to pee right now… I will try to mind meld with Tuesday – I think that might work. Love to all of you.
Jess, Please know we are thinking of you and praying for Tuesday and the rest of the family. We have family and friends praying. Not an hour goes buy without our hearts breaking for you both. Be Strong. Now we will add the pee to our prayer request. Let the pee flow . We love you . Matt and Elizabeth
Thinking of Tuesday this morning. We’ve only met a handful of times through Marne and Emily, but I wanted to let you know that Tuesday is such a strong spirit that both of my kids still sometimes talk about meeting her at the climbing gym.
We are sending lots of love and energy, but that spirit she already has is, I am sure, helping an awful lot too.