FOTB – Father of the Bride

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I haven’t wanted to discuss this too openly on my blog for several reasons: “The Evil Eye” (a Jewish way of saying tempting fate), the fact that my goals are hopefully way beyond this wedding and extend to the future celebrations of my family and friends, and because it is not my day, but my daughter’s. If I am honest, however, with 33 days to go… I can’t hold it back any longer. It is an amazing feeling!

My daughter and I joke that she has the number two role at the wedding as she is merely the DOTFOTB (Daughter of the Father of the Bride), but seriously, I know my place. I want the wedding day to be a celebration of their marriage and the life they are about to start properly together. It is not about me.

I have had a rough few weeks, but knowing some of it was caused by a left-field infection and not the PSP gives me renewed hope. I believe I am going to make it, and more than that, love every moment.

I truly don’t care about my role in the ceremony, I just want to see my middle baby enjoy the day of her life with a really lovely, special person who had the decency to ask me for her hand in marriage (although we know it was decided by a certain daughter way before that!).

I love my kids more than I can possibly say. I am so proud of them and of who they are. I have decided to stop hiding my excitement out of fear of the PSP and instead use that excitement to my advantage.

My daughter, wife, son-in-law-to-be, his lovely family, and their friends are doing the hard work, but I have my preparations ready too. The FOTB suit is ready, and I’ve booked a hotel nearby to sleep for a bit before the wedding to ensure I am at my highest energy. I have good friends (one in particular) who are going to make it their job to see that I am okay. I am going to pace myself very carefully before then—taking minimal risks regarding choking or falling, keeping up with exercise and treatment—and continue the search for a carer.

Bottom line: this is potentially the biggest day in my life, building on my own wedding, and I want to say loudly that excitement is starting to overpower fear. But we will be ready for anything PSP has to offer. At the end of the day, it is not my wedding. More than anything, I want to be an extra in the event, not a feature due to some disability event like a fall, choke, or freeze. I want a very backseat role, and certainly not to be the centre of attention in that regard (and I bring my own seat anyway, so one part is done!).

But let this go on record: being the FOTB is the coolest thing ever. I pray I get two go’s at it and one go as a FOTG (and please G-d, more). For now, however, this is my short-term kicker incentive.

And to the DOTFOTB: all my love imaginable. You and your brother and sister know how much you mean to me. Well—you think you know, but you don’t.

And as for the MOTB!!!!!! No words are enough!!!!

 

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Hello! I am Ben Lazarus

Originally diagnozed with Parkinson’s it has sadly turned into PSP a more aggressive cousin. I am 50 and have recently retired but enough of the sob story – I am a truly blessed person who would not swap with anyone on the planet, principally because I have the best wife and kids in the world (I am of course completely objective :-)). Anyway I am recording via the Blog my journey as therapy to myself, possibly to give a glimpse into my life for others who deal with similar situations and of course those who know me.

Use the QR code or click on it to get a link to the Whatsapp Group that posts updates I hope this is helpful in some way

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