Today Ivy kept me company through another new day. She kept me well fed & hydrated and got some smiles and laughter out of me. We watched Frozen and reminisced about Disney princesses of our childhood. Now my dear Ivy is sorting through Sid’s wardrobe, as we have a bubbly chunkster of a little man growing like a weed.
I had visits from a counselor and a most wonderful nurse today who will be working with me at home. The amount of work the RN was able to do while sitting on the couch with me for an hour equated to a week’s worth of phone calls, insurance dealings, driving or getting a driver, parking fees, hold music…you get it.
My future is still as unknown as yours and as hospice helps me to truly get my pain under control I am able to enjoy moments of peace and comfort, learning that this moment in time is yet a transition to a new part of life.
It helps me to write, to not be alone with these words. Thank you for sharing in my life as much as you do and in many different ways. I’m hanging in there with you & I know you are with me too.
With as much professional help, spiritual counseling, pharmaceuticals, friends, family, support, prayers, lovely cards and gifts of love, I ache. I hurt inside, deep, deep inside. And I hurt like a person who’s been torn apart and put back together too many times.
And I hurt like a new mom who can’t be with her baby but for a few minutes each day.
I hate this. I don’t have the strength that I have had in the past. There are too many new and growing tumors in my body that it is simply a matter of time that they start to do too much damage. So I’m in a new very scary, lonely, horrid stage having elected to start hospice care (though it is possible to stop hospice at any time if I desire and can manage).
**The clinical trial I wrote about in the past with great hope is of unknown existence. There is no information about if/when it will happen and if it will even accept patients with my specific type of tumor. This is completely opposite of what I had learned about last year.**
David and I thank those of you who continue to help us financially as we would be struggling so much more. I don’t even know how else to express how grateful we are.
With love and tears,
Please spare a prayer or send some positive vibes out like you have so often done to help me on this rugged journey.
I am at UCDMC hospital prepping for an emergency surgery tomorrow morning. Today’s routine CT scan showed another collapsed vertebra, likely caused by a sneaky tumor (and likely the cause of the pain I haven’t been able to control in the last two months).
As a mom I now understand 1000% that I’d prefer this pain and trouble to be mine and not Sid’s. But I’m only human, and I’m my mom & dad’s baby girl, so I’ll always need hugs and snuggles. And damnit I’d take a little break once in awhile too!
Sid is sleeping soundly with his papa. And I’ll get to see him soon.
Two months ago our lives changed in the most profound way. Holding Sidney for the first time and every time to follow redefined love.
Today Sid is such a happy, healthy, strong, big boy. He loves baths, being swaddled, going for walks or car rides, and he is a good sleeper. We are so fortunate. David is a phenomenal father and my Mom is the most helpful, generous, loving, energetic person on the planet.
In these past two months I have been hit with something I never expected. I am struggling through the worst period of anxiety and depression I have every had – my beautiful but ever-challenging life flashed before me when I experienced the love for my very own child – and my normally positive, hopeful side just crumbled. Very slowly but surely I am trying to pick up the pieces, to regain physical and mental strength.
I have a long way yet. I am ever grateful for the chance I have had to share my stories with you here and I hope to get back to it.
Having a nap on week 6 birthday. Thank goodness for Grandma & Grandpa and others who are helping us out. Now mama is going to go nap. xoxo
I’m at a bit of a loss for words perhaps because of: 1) tiredness; 2) being in love with Sidney; and/or 3) something to do with sleepiness.
David and I agree that “Sid tired” is different from “cancer tired”. It’s a way better kind of tired.
And so far we are all relatively well fed, cleaned and…well that feels like success for the first 10 days!!!
Are you thinking what I’m thinking?
Today was the final ultrasound look into Sharon’s wonderful womb. “Little” Sidney David is an active guy, ready to join the outside world but apparently enjoying the last few days of tropical weather indoors.
Sutter Davis Birthing Center, here we come…this Friday morning!
Tuesday’s final OB appointment. Meet you on the outside this Friday at 9am!
XOXO Clare & the Wiley Boys