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Tuesday, April 24, 2012

Dear Michael

Dear Michael

I know there is little point in writing this.  You won't read it and even if you could, I'm not sure it would sink in. I tried ever so gently to broach the subject last week but I got no response from you. Did you even hear me?

Your daughter is getting married next month. I know you are somewhat aware of that because you often ask if the event is tomorrow or in her home town far away. No, the wedding is in three weeks and it will be here in Chelsea because you cannot travel, remember?

Sometimes you wander around the house in confusion. When I ask you what you are looking for you tell me you need to get dressed for the wedding and you cannot find your clothes. You've forgotten that your good clothes are upstairs in the spare room closet. I'll make sure you have everything you need on the day.

Is your anxiety about this already starting to mount even though I am trying not to breathe around the subject?

It is going to be a busy time the week before with all four kids, most with partners, arriving throughout that week. The house will be filled with their noise and excitement. There will be other family too, none staying with us, but I will want to visit with them before the wedding day: my niece, whom I haven't seen since long before my sister/her mother died last year, and Anna's in-laws whom we haven't met yet. My attention will most definitely be directed away from you much more than usual and I know how difficult that is for you.

I have arranged for our caregiver to be your date for the wedding, to take you the short distance back home so you can relax and be away from the wildness of the day whenever you need to. She will stand in for me and look after you as well as she always does. You can come and go as you wish.  It would be really nice if you can at least see your lovely Anna married, even if you cannot manage the rest.

I am bracing myself for a difficult time, but, oh, how I want it to be okay. I've had to miss so much in our children's lives the past few years because of your extreme sensitivity to change. They are all so understanding and accommodating.  I try really hard not to let it bother me but I am feeling a tiny bit of fury welling up inside that I hope I can suppress. I know it's not your fault but with every single family gathering lately, even very minor ones, you have an inordinately serious reaction. I know this event will be no different. In fact, I am prepared for it to be much worse because it is on a much larger scale than anything else you have had to deal with the past few years. I have kept you very protected.

So here is my request: I want you to try very hard to stay calm, to not spiral into your usual psychotic vortex whenever there is any change in your protected little bubble.  I know the kids are prepared for your insanity and the accompanying mystery ailments. Anna has even arranged with the presiding minister to shift the ceremony to your bedside if necessary, but it would be really nice if she doesn't have to. The list of invited guests is short for your sake, but it will still be bigger than anything you have seen in a few years. Please let her have her day peacefully. Don't let this be a day of Michael Drama. We've had far too many of those.

If you can somehow manage to stay calm and serene through it all (I will have your arsenal of medications at the ready just in case), I promise to be ready and willing to give you my complete and undivided attention right after everything is over and returns to normal. You can fall apart to your heart's content then and I'll mop up the mess as I always do.

I love you no matter what. You know that. But let's both try to enjoy this very significant time in our daughter's life. Let's be normal for just one day. Please?

Love, Claire

P.S. By the way, your son is getting married in September.

*The Interrupted Wedding, Edmund Bristow


  1. Wow. This really drives home dramatically what you go through on a daily basis, Claire. I have my fingers crossed for you that the wedding goes off without a "Michael" hitch or any hitch for that matter! May the force be with you and your family!

  2. I love your transparency. If only we all could look beyond our insecurities and fear of misperception (which are inevitable in any event), the world might have a better awareness of Parkinson's disease. Thank you for sharing your hopes, prayers, fears, frustrations and even anger. Michael is blessed by your love for him. My prayers are with you.