On Saturday, we posted the news of Craig’s condition very widely and have received hundreds of messages back. We feel so blessed to have a bubble of loving prayer and friendship encircling us.
The days since Friday’s news have been very emotional. We have shed many tears while absorbing this new change. While we know that the transition to the next life after this is a joyful one, grieving loss is also natural. Sunday had some happy and sad moments as we worked with friends Nik and Debbie Tressler to get the funeral program planning mostly finished and music chosen. It was great to listen to music together and remember all the singing Craig has done over the years. (Craig’s daughter Michelle is on a hunt for recordings of her Dad singing.) Craig asked me to read him the eulogy that I had written for his funeral – that generated sobs in him and tears in the rest of us. But, it was good to share and know that the content worked for him.
Part of what’s weird right now is reversing the flow of drugs and supplements. I’ve spent so long building up Craig’s body and minimizing symptoms with medications that to begin eliminating them so that his body begins to wind down feels very strange. The one that I think will be the toughest when we run out of it is the anti-clotting shots. We are down to one a day versus two and won’t refill the prescription when it ends in March. He will stay on the anti-seizure medications and steroids, however, because that will help to provide quality of life.
We have met with a representative from hospice. They will provide in-home support with a visiting nurse, aide, music therapist, art therapist, etc. to help us keep Craig at home as long as possible. He may even be able to pass to the next world at home. If that doesn’t work, then Hospice House is an in-patient facility on Lake Erie near us that would provide Craig with a place to stay. Their goal is to help Craig be comfortable but not engage in extreme life-extending measures. Hospice nurses often become deeply involved with pain management. We are grateful that pain is not usually an issue for brain cancer patients.
Craig’s son Dave and I met with a social worker at The Gathering Place yesterday to talk through how we are doing and how he and I can work together in support of Craig over the coming weeks. He’s our only child who lives locally. He came over tonight and enjoyed a movie and ice cream with his Dad while I got other stuff done, so good for all of us. Coworkers of Craig’s from Radix Wire (Sylvia, Flo, and Dottie) brought lunch and ice cream over today, so the guys enjoyed Overload Peanut Butter Tracks together .
Craig’s Mom, sister Nancy, and brother-in-law Bob came in from Pennsylvania on Monday for a lovely visit. It was the first that Mom knew we were funeral planning, and that was hard for her to hear. But we had a meal together, companionship, and love. (And Bob even did fix-it jobs for us – yay!) We are also enjoying a stream of loving friends coming to visit. Each one triggers wonderful memories for Craig, which is making him feel very happy. Ban Twaddell came over on Valentine’s Day to share roses from he and his wife Ruth. Today was Krsnanandini Devi Dasi and her husband Tariq Salim Ziyad, friends and fellow marriage educators. We are also finding excellent support through groups at The Gathering Place. A member of Craig’s group last night sang a song he composed and dedicated to Craig and was accompanied by another member playing the flute. More joyful tears.
Craig is experiencing increasing numbness in the right side of his face and having occasional times of choking on food. He’s still successfully walking most of the time as needed for short distances, but feeling shakier and getting occasionally unsteady. We had been using just the stairs and rarely the wheelchair ramp, but we are back using the ramp much more. The steroids are increasing his energy some, but I’m shifting them around with the doctor’s permission so they don’t disrupt his sleep. We are learning what dosage will be best to help functionality without causing too much personality change.
So, it’s been a very full period…I’m tired! Sleep has been a bit tougher and there’s been less rest with very busy days. But, I’m working on finding some balance.
Love,
Susanne
4 comments:
Hi from all of us in Jacksonville! I have been keeping up with all the changes and adjustments and I am very thankful you both are good at communicating in person, via email and blogging. Living so far away has made this weird for me. Knowing what is going on , but not seeing it for myself. When I think of my Uncle Craig I think of his love of music and his laugh/smile (which he does both while slightly nodding his head). I must say I have been blessed to watch you in this journey. You both have shown an amazing amount of grace, peace, and joy in your struggle. I really anticipated a miracle. So, I am very thankful we visited at Thanksgiving the past two years.
I know your journey has impacted hundreds and will continue to impact others in the future. I hope those who have any sort of life altering illness can learn from you Uncle Craig. You are amazing and even though your body may be weaker, your strength is inspirational.
I have wanted to call more....but feel very much at a loss for words. I also kept hoping for that miracle.
I just had a very random memory pop into my head from Grandpa's funeral. I laughed out loud on more than one occasion when I recalled your statement about what it felt like to sing in that beautiful building at the cemetery (something about the shower). Your voice sounded angelic. I will always remember that and what you said. It is a good mixture of divine humor. I hope Michelle can find some tapes of you singing.
When Sierra and I say daily prayers, before I can even start, she says, "Don't forget to pray for uncle Craig." Her only regular prayer requests are for you and "no bad dreams."
Well, you are in our thoughts and prayers! Love and Peace, Nicole, Chad and Sierra
Thank you for sharing your tears. It gives me permission to have mine.
We attended the family devotions at the Enslows Thursday night, before our tutor reflection meeting. It was a wonderful spiritual atmosphere. I shared about your (Craig's) current condition, about your valiant service prior to and throughout your illness, and prayed for you among the beloved friends.
Lot's of love,
You are both amazing souls and sharing your journey with all of us gives us hope and inspiration. You are in my prayers daily.
Dear Susanne,
On behalf of some 5,700 members of the Baha'i Communities network, all over the planet, I can assure you that many of us are prayerfully following Craig's progress as he prepares for his soul to embark on the next stage of his eternal journey toward our Creator. We are deeply grateful to have been given the privilege of his company and yours during his sojourn on the earthly plane.
With warmest love, your brother in Baha'u'llah, Yakov
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