Category: hospice

flash

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

the 23rd -12th-

12th. I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for next week. January 12th. Kids are at school and at my moms so I can write it in a solid block of time and get myself prepared. Its a big deal presentation. 1 month until THE 12th. .. ..again.. But I can’t concentrate. Its gnawing away at me. The time that I know is looming and coming too quick.. but also too slow. Because it feels like forever since I held her last. And its only been 23 months.. How will I last the rest of my life?? ..how the fuck will I last the rest of my life???? A year ago we were all packed up for our make a wish trip. Unsure what to expect but so excited for the adventure. Right before we left though.. the first[…]

broken trust

He has lost confidence in me. It’s not that he blames me.. its just he doesn’t trust me the way he used to. He questions more.. He pushes more. He checks more. I know he doesn’t blame me… but my husband doesn’t have faith in me. It’s not on purpose. He likely doesn’t even know its happening to him.. to us. But it is. I have noticed it happening for awhile now. At first I told myself maybe it was just me being sensitive.. or him just being overly cautious. It’s a subtle change but a heartbreaking one. And once I recognized it I have struggled to over come the shock of it. The emergence of a new side effect of childhood cancer.. Because I don’t trust me either. I haven’t heard others talk about it. . Are we the only ones??  I’d like to say no.. I always tell[…]

we’re coming

When we get close to home I have a silly tradition that we will call out to whoever is waiting for us that we are on our way. Today it was just me and Charlotte and I started the call.. I called them one by one.. Daddddyyy and she would echo me..then  Bubbassss ..and  Brotherrr .. then I stopped. . I guess I must usually have at least 2 of the kids in the car because today it made me choke and gag. I gripped the steering wheel as tears bypassed the stinging stage and immediately began to fall. One missing. I whispered.. Jennifer.. over and over again. Charlotte already knowing the routine had continued on with it. “We’re cominggg” she was so damned happily yelling from behind me. I pounded the steering wheel. And then I said louder.. Sisssyyy .. Charlotte giggled and kicked, swinging her legs out.. Calling[…]

our bed.

Her bed. Well it was really our bed. Me and her. We shared some horribly beautiful nights in that bed. At first we borrowed a futon. But a death bed for your six year old isn’t the kind of thing you borrow. We needed a new one. Comfortable enough for her to die in.. big enough for us both to sleep in. How do you pick something like that out? Luckily some friends of our did it for us. They bought it and dropped it off for us. No questions.. just something  they could do to help.. to lessen a burden. I rarely lay in it. It’s so hauntingly empty. But I sit on it. I look at it every morning and every night. Never changed in those hours.. How often I reminded her to make her bed.. Oh how I long to see it messy with her arms and[…]

my role

Everybody has a skill a talent.. something that is special and unique about them. A way for them to give back..Everybody has a story to tell and I am able to tell my publicly. .. But at the center of it.. My truest calling.. now. I am a cancer mom.. but specifically one to a child that was on hospice and died.. one that is dead. And that’s where I am most useful. That’s where I can help.. it is my role and my place in this world.   At first it was parents with teenagers that were really screwing off.. I could talk to them from the child’s point of view.. I could share my story and my success in overcoming it. Then it became  infertility and adoption. I used to be good at talking to people and helping them through those darker times.. especially transition times.. during a[…]

My no into yes

Its pretty amazing how one moment can trigger one memory.. that then triggers a landslide of them. I was at the CVS pharmacy waiting to pick up my prescription. I moved to the side where the toy aisles are and I remembered being on a phone call there.. standing right in that very spot. So incredibly mad. I was talking to a hospice nurse.. right when Jennfier was going to be getting on service begging for one seemingly simple answer. How can long can a little girl live with no food and barely any liquid. And I couldn’t get a answer. I was nearly yelling.. just tell me a number. How can you not give me a number?!?! Now I know why.. because there really isn’t one. They can last so much longer than you would ever even imagine. Jennifer was over 23 more days. .. I was so mad[…]

again..

Everyday brings something a little different for us. But it seems like every day is blanketed in sorrow.. like it blocks the sunshine from really penetrating. This weekend we took down most of the decorations out front of the house. Some of them were wrapped around the trees and bushes and for just a moment I smiled.. thinking how I would be doing this for her again one day when our house gets “T.Ped” because of her.. or when its decorated from a boy asking her to prom. Two whole separate thoughts.. my mind had time for two daydreams before.. truth. death. reality. A year out and I still forget .. I still can immediately go to the hope and the joy that was supposed to come with raising her to adulthood. I think I like it. I will be sad when I don’t. Because right now her life is[…]

can’t

A year later and nothing has changed. Again. Here I am . Without her. And today is so much harder than yesterday was. So. Much. Harder. I remember this day so vividly. I wouldn’t get out of bed. I think its the only day in my life I have done that. Tony and my sister went to the funeral parlor. I was in no rush. I didn’t understand why we had to go right away. I yelled at him. Told him I wasn’t going to shower. Wasn’t going to change my clothes. I have never been so angry with him in our entire relationship.. as when he suggested I shower. I couldn’t imagine washing her off of me. I still had remnants of her.. of the last moments of her life on me and I never wanted to have it go away. No. A year. Now its a real year.[…]

the difference a year makes

A year ago people woke up to this posting. .. This picture still makes me my hands and feet go dumb when I look at it. ..It makes the blood pound in my ears. .. Yesterday 7 children died from cancer. ….my child wasn’t one of them. Today 7 children will die from cancer. My daughter is one of them. She gifted me her first and her last breath. . . and so many beautiful ones in between.     Everybody that loves Jennifer has different “last perfect days” But a year ago was mine. 2/12/14. I know that’s hard to understand. But February 12th was the last day I held my daughter. It was the last time I felt her heartbeat under my hand. And those hours leading up to her death were beyond words. The connection I felt with her was the deepest most fulfilling relationship I have experienced.[…]

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