My fantastic husband, Anthony, has now been living at the nursing lodge for around 6 months, during which time it has become more and more difficult to bring him home. At first we did overnighters but, due to many of his Parkinson’s disease symptoms, this gradually became impossible. Then Ming and I tried to bring Anthony home just for the day and that, too, became difficult due to his increasing immobility and other factors.
Just recently, I have utilized the services of a wheelchair taxi and that has been relatively successful, though expensive until I fill out the 500 page form and produce a zillion bits of ID. I don’t tell Ants about the expense because he has always been a money worrier. The following picture is of just before Ants went into the nursing lodge. Our little alien is in the background climbing onto to the roof to dance again.
I have only just rediscovered this photo and it makes me wonder because Anthony has an expressionless face (Parkinson’s disease does that), but he’s still giving a ‘thumbs up’! I think this was around two years ago. A lot has happened since then.
Sometimes I miss Anthony being home to the point where I soak my pillow with sobbing; sometimes I feel a stab of relief that I no longer have to do what we used to call ‘the night shift’; sometimes I miss the past so much that I want to go back …
… to the day we got married
… to the day Ming was born.
But now is now, and now is unavoidable and now is good.
jmgoyder 
Anthony in long pants – is that not rare–at least for back then?
I like your last line – Now is now, and now is unavoidable, and now is good. A hard reality but I guess once you reach it you are back on your way to the top (or at least the middle)
wonderful photographs… how fast they grow up… I mean your son 🙂 Sometimes when I look my son’s baby photographs I can’t believe he is a young man… Thank you dear Julie, as always it was nice to read your love story. Blessing and Happiness, love, nia
How old is your son again? He sounds so wonderful.
Hugs Julie — I am in awe of your courage, your love and your ability to face reality and still shine.
Blessings.
You are such a wonderful, encouraging person – thank you Louise!
I cannot imagine what it’s been like.
Kind of like a joy/grief mixture with the joy seeping away – sorry, that sounds a bit melodramatic!
You keep in such a wonderful frame of mind. I admire you.
~FringeGirl
Well you cheer me up a lot!
I love the story of the picture – thumbs up, Ming climbing up on the roof to dance. It’s difficult to read about your struggles sometimes (I have MS and am currently having an exacerbation, though trying to ignore it) because I wonder what our family’s future holds. My husband just says, “it is what it is”. There is always good and bad, eh?
So sorry about your MS – you are heroic with your wonderful attitude.
Memories last a lifetime, thank goodness.
It must be hard to think in the here and now, but that’s reality.
Very true!
What are the benefits of roof dancing? Wide open space? (:
Love the photos and honest sentiments as well.
I’ve only been on the roof twice can you believe! It’s a stunning view and makes me want to build a second storey!
How wonderful written this is … my heart aches and cries out for you all 3. This with that we want things to be as they where before. I wish some days, when my aftermath problems .. are really bad that I could have my old life back with my tumor. It’s crazy and of course I would never make that choice if I was given it. Luckily is that those thoughts and wishes are gone the next minute. To take the bad for the good. I can understand why you want to go back, because today you don’t have the Antony you once had. So beautiful written.
I know exactly what you mean – thank you beautiful Viveka!
It is trying sometimes I’m sure, as the realities of life bear down on you… but their is always a silver lining somewhere they tell me… it’s finding it that’s difficult… I feel your pain and misgivings, but nothing is sent to those who cannot handle it… Hugs Dear.. Hugs..
Ants thumbs up made me think of when Linda had Oncocytoma and had 90 lymph nodes removed from her face and neck area.. as well as saliva glands… she had no facial movement or expression until the nerves had grown back in… this lasted for 6 months and I’d tell her a joke.. hear the laugh but see no smile… so we had an agreement if she thought she was smiling she would hold up one finger… so I have many photos of her dead pan face with one finger in the air… I won’t tell you what the two fingers meant, but I’m sure you will guess….
What you and Linda went through – amazing. She sounds like such an absolute legend and I love the finger idea! You are a blessing to me.
although Al is my brother, i am positive that when he is placed, i will have tears on my pillow also and relive a lot of memories we have built together
I understand.
do u have any idea what it feels like to know i have two friends out there in the world that truly understand? i understand most of what you and Jo go through, the problem for me is that Al is not where you and Ants are or Jo and mama, but I try my best to understand
I know what you mean – we 3 are all in similar predicaments but not exactly the same and Parkinson’s afficts people so differently – argh!
so true, it sucks big donkey ____!!!!! lol
Nice memories, but NOW is just different. You need to find new ways to make your life good. Every day has something good about it, if you look for it.
You are absolutely right!
A hard conclusion to arrive at, but a good one. It seems that you are healing as you go? I hope.
~ Lynda
I think so.
I like seeing the photos from the past that show your history-it may sound odd but it seems to pull it all together for me as though the past gives you strength to cope with the now.Does it work that way for you?
Yes I think it does work that way!
You look so happy in that wedding photo Julie~ beaming… yes – now is now — I have to keep telling myself that too. I want to be 30 again (my last year before the my world changed)… Now has to be good… sending love xxoo
You. Are. Amazing.
you are too~xxoo
I’m glad you can look at the photos and smile. I know what you mean when you say you want to go back to when things were good. I don’t do a lot of wishing, but to go back in time is one.
I know.
Ming danced on the roof? Love it! My daughter crawled onto the roof to write poetry. She only wore black for one entire summer and wrote poems about death. Funny, considering that we had a picture of her “aura” taken, and it’s a huge, golden halo–one of the most positive auras you’ve ever seen. But every teenager needs her summer, I guess.
Love what you say about your beautiful daughter!
Sometimes the best you can do is to live in the present and take it one day at a time. Your son should write a song about dancing on the roof!
I’ll tell him!
“Only two things can reveal life’s great secrets: suffering and love” Paolo Coelho
You have them both in spades Jules, one can only hope the one dims when compared to the other. Much love xoxo
Thanks for the quote – I think we all have both!~
“Now is unavoidable” I love that!! Great blog Julie. Thinking of you and sending energy into the universe for you! xo
Oh Megan – hello!!!! Thank you and hoping you are well.
Ming looks so tiny in Anthony’s hands! Very sweet picture!
He was tiny – only 6.5 lbs – I used to bath him in the bathroom sink!
He looks remarkably well in that top photo… you wouldn’t know if…