The wedding last September was wonderful! Short and sweet, but an experience enjoyed by all. Ceremony was at the little stone church we go to (whenever we feel like it, ahem!) Reception was at the best French restaurant in the area. It was a shockingly hot day for that time of year, but better than cold and rain.
The honeymoon in Antigua was fun, after Jeff got over the bad cold he came down with on our wedding day. The resort was peaceful, the food was great and the people friendly. One day we got out and went on a powerboat > kayaking > hiking > snorkeling adventure.
Goodbye to the first love of my life
I spent a number of weeks in London over November/December with my mother and her condition was such that I could not commit to anything for the springtime because from that visit on, I knew I would have to wait for that call, in the middle of the night -- and it did come eventually, right when I thought it would.
I had bought a ticket to visit her in March/April. About a week before I was set to fly out, a call came in the middle of the night. The doctor was with her and after her carer spoke to me, the doctor told me to change my ticket because I didn't want to wish I had been there. So I went. Jeff came with me for a few days. He said goodbye to his Ruthie. She was on constant ventilation, and in relentless, heartbreaking distress, aware of nothing around her because of it. The morphine injections were not enough and a few days after I arrived the palliative care team took over from the district nurses. They put her on a steady syringe driver of what I shall now call the "Exit Cocktail" and came to check and refill daily. No child should have to see their young parent go through that. Each day from there on, she slipped away further and further, until a few days later I knew it was not my mother in that bed. The following morning she was gone.
We had the funeral nearby in the church she went to when she could get out. Everyone we knew there, family, old friends and new, came. People all said the same thing about her rich, warm, loving spirit; her shining smile and big bright eyes; her love of people and how she cared for and cooked for everyone, how much she taught them, and how what they do now is as a result of her influence, and how she was pretty much everyone's Mama.
I spent a number of weeks in London over November/December with my mother and her condition was such that I could not commit to anything for the springtime because from that visit on, I knew I would have to wait for that call, in the middle of the night -- and it did come eventually, right when I thought it would.
I had bought a ticket to visit her in March/April. About a week before I was set to fly out, a call came in the middle of the night. The doctor was with her and after her carer spoke to me, the doctor told me to change my ticket because I didn't want to wish I had been there. So I went. Jeff came with me for a few days. He said goodbye to his Ruthie. She was on constant ventilation, and in relentless, heartbreaking distress, aware of nothing around her because of it. The morphine injections were not enough and a few days after I arrived the palliative care team took over from the district nurses. They put her on a steady syringe driver of what I shall now call the "Exit Cocktail" and came to check and refill daily. No child should have to see their young parent go through that. Each day from there on, she slipped away further and further, until a few days later I knew it was not my mother in that bed. The following morning she was gone.
We had the funeral nearby in the church she went to when she could get out. Everyone we knew there, family, old friends and new, came. People all said the same thing about her rich, warm, loving spirit; her shining smile and big bright eyes; her love of people and how she cared for and cooked for everyone, how much she taught them, and how what they do now is as a result of her influence, and how she was pretty much everyone's Mama.
I miss her, every moment of every day. It is still such a reflex to want to call her for the big things, and especially the little things. Like,
Mum, how much flour do I put in this recipe?
Guess what, Ma, the doc said I was OK.
Mumsy, what do you think...?
Mummy, why is this so...?
She always has been, and always will be, my angel.
A Few Lost Months
Not sure what was going on over the summer. Obviously time passed and I got on with things, but it's a bit of a blur.
In August we went to my cousin's wedding in Canada, where I served as a bridesmaid in an electric blue dress. It was outdoors and beautiful, all very touching; she was a crying bride, but the groom shed tears when he "married" her daughter too. Not a dry eye in the field, and I was fighting so hard not to cry, one of my aunts in the 3rd row was ready to run up with tissues.
On our return home, I started the IVF process. It's something I knew had to be done from the moment he told me he had CF. There were more needles than I could count, and they hurt and the meds burned and caused bruises and welts. Jeff, my skilled but reluctant injector, wanted to quit because he hated putting me through this, and also kept apologizing that it was his fault I had to go through it, but in the midst of it all I loved him more than I did before. Anyway, extraction, culture, transfer = no success this time. But it did a number on me, and I was in recovery for some time. We'll thaw the rest out in January and try another transfer.
Then around our anniversary -- a few days after I recovered, Jeff got sicker than he was after our wedding; he was fighting something again and was OK for our dinner - at the French restaurant - but then it turned into pneumonia and we went to hospital and they threw scary antibiotics at him, and sent him home with the whole IV setup and everything. Took him at least a month to come out of that.
Enjoying the End of 2011
So after everything we'd been through the last few months, we've decided to put things on hold and just enjoy the end of the year.
For his birthday, I took him to see Cirque du Soleil's Quidam, when they were passing through DC.
For Thanksgiving, we drove up to NYC for a few days to be with cousins and hang out with friends and see the city. We stayed at a nice hotel across the water in New Jersey so we could get full and amazing views of Manhattan across the river. We walked around and saw all the usual things like Empire State Building, Rockefeller Center, St Patrick's Cathedral, Times Square, South Street Seaport.
And we saw a proper musical, Anything Goes, written by P.G. Wodehouse and Cole Porter.
Next up: Christmas
4 comments:
I used to wonder how your mum was doing. I am so sorry to hear about your loss, I'd always hoped she'd recover. It will take time, but one day, you'll stop feeling pain. I've been there.
Shees, I had a fright reading about Jeff! After all you've been through with your mum and trying to find Mr. Right!
Have a wonderful Christmas and pleeeease don't stop blogging.
Your writing as always so lively and clear--even when you're commenting on a painful episode in your life. Your Mum has always sounded like someone I'd like to know. And all the best to Jeff. I just hope and pray that medicine can find a permanent cure for CF.
Thanks for starting up the blog again.
Gyal, sadly there's no recovering from ALS, no cure, and no real treatment. It's so obscenely cruel.
Jeff tells me often that he plans to be around for always, and thankfully, his is a mild case, he has powerful treatments and in the near future there is a promised miracle drug.
I will try to get back in the habit...
Hi Steve! I'm so touched to think you would have liked to know my mum. People who knew her really loved her, and I've always been in awe of her capacity for love and her sheer capability.
As for the CF cure, perhaps you've heard of the Vertex drug trials. They are coming close to something almost like a cure for the majority of CFers. It sure fixes the problem at the cellular level, and that's miraculous.
Five percent of them with a rarer variation are in better luck, as the FDA is fast tracking approval of the first Vertex drug, and that is what Vertex are trying to tweak for the rest of the population. So, another year or two, we hope. I can't wait to hear him laugh properly without coughing, or carry out a normal day without getting wiped out, or have the extra hours in the day currently dedicated to treatments.
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