As you can imagine… I cried!
There was lots of talk about hopefully having Zachariah walk up to the front using the Upsee, but they stressed that they wouldn’t be upset if for whatever reason this wasn’t feasible.
The special part was just having their nephew there at the church being part of the celebration.
My husband and I gave the Upsee a good go, but reality was Zachariah had so much going on that he just wasn’t managing the standing frame, let alone the Upsee.
We told my Brother that he would have to be in the buggy, we would clean it up, and the ring cushion could be placed nicely on his tray.
Little did we know, this was the least of our worries and we would face new challenges of actually getting Zachariah to the wedding.
The day before the wedding, Good Friday we set off to Church and planned to get last minute preparations sorted that afternoon and have an early night. Although, Zachariah had other ideas.
Recently his epilepsy has been out of control and after 1 trip to A&E he had been given a new drug, but nothing was changing, the seizures just kept on coming, one large one occurring during the church service which led to an Ambulance ride to the Hospital!
The consultants came and advised an overnight stay and the prescription of rescue meds to be sorted the morning after.
I pleaded with the nurses to do everything they could to get Zachariah discharged before the wedding but knew in my heart that Zachariah would come first and if it wasn’t advised to leave, we wouldn’t.
Fortunately, Zachariah was discharged at 11am, 2 hours before he had to be at the church, so Daddy did a super job of getting him bathed, suited and booted just in time!
And what a handsome page boy he was! He looked so dapper in his suit.
We arrived and found our place at the front of the church to be confronted with huge, nasty Tonic-Clonic Seizure lasting around 4 minutes. My heart sank!
The pure pain I was feeling was nothing compared to the discomfort my son was feeling but it was painful enough to make myself unable to hold back the tears!
Epilepsy! Could you not stay away for 1 day, and allow my son to be a page boy for his uncle’s wedding?!
Wiping away the tears I had to brave it and walk back up to my seat and wait for the Brides arrival, leaving Tim to comfort Zachariah at the back of the church, who had yet again another seizure, this time lasting 13 minutes.
But he appeared very happy when coming round and gave lots of smiles.
When it was time for Zachariah’s job, Tim wheeled him up and I took him to his place, allowing the Vicar to take the rings from his tray, and then Tim took him back to the back where it was much quieter, leaving me to enjoy the wedding ceremony.
Yes I felt guilt, guilt that I was being selfish, but I also knew that Zachariah was with his Daddy, who could take him home if he felt necessary.
The blessing in all this is that after a huge sleep, Zachariah had a great afternoon at the wedding reception and went on to sleep really well at Nana and Grandads.
Another blessing was that my brother and sister-in-law had an amazing day, I pray that they have a blessed married life together.
This day, however made me realise just how much we are having to cater for Zachariah’s needs much more and it is clear that we cannot just fit into the crowds anymore, but we need to make changes to daily life to help Zachariah.
The biggest change being that we need to protect Zachariah from loud noise and music.