Tougher by the day:

Every day at the moment brings a change in Bill’s condition'. Since leaving the hospital over a month ago now, Bill has spent the vast majority of his time in bed on his bi-pap. He remains forever positive but he struggles now to maintain what little independence he still has. He still has excellent swallowing, eating and chewing so that’s definitely a positive. On the downside he is very weak and gets very tired very quickly. We have a new care plan in place with increased hours for our caregiver. She is here 5 hours a day, 3 days a week at the moment. We’ve managed to work her hours around my work and the boys polytech hours, so that there is someone with Bill 24/7. Luckily for us our caregiver happens to be one of my closest friends, so if the kids aren’t pulling their weight, “aunty Di” will “deal to them” for me. And if I’m not pulling my weight well she’ll tell me off too. We’re also able to be more flexible about whose around and when, because my job allows me to work my hours around what’s happening at home. We’re hoping that for the time being at least things have reached a plateau for Bill but we have come to realise that in the blink of an eye, this disease can take a turn for the worse. Just want to make special mention of our “team” of dedicated professionals, Fiona and Anna-Marie (speech therapists), Krystal (our OT), Sue (Physio), Rose and the palliative care nurses from the hospice, Bills awesome GP, Stuart Lydiard and last but not least our family and friends who appear out of nowhere just when we need them.

We are still searching for a mobility van, one did become available but did not have enough passenger seats in it for all of our kids as well. They wanted us to take it, but Bill refused saying what the hell is the use of a van, if we can’t take the kids with us. Isn’t that the whole point of the van????? so I can go with them where they want to go. (Well what can I say) So we’re still confined to home, but with a little bit of patience and a little bit of luck hopefully another one will become available soon. We’ve got a couple of weeks grace period anyway, as the independent assessor who has to approve our choice of van is away on holiday.

As I’ve mentioned in a previous post, Bill and I have become quite close with a couple in Canada, Rick and Joan.We’ve learned recently that Rick’s condition has worsened dramatically. From their blog, Bill and I have learnt all we ever needed to know about MND/ALS. The highs, the lows, the “to do’s, the not to do’s” to  “give this a try” it is a very informative blog if you suffer from MND/ALS it is also a strong testimony in faith, love and spirit. Some of their korero is pretty scary, in that they are facing the future practically and head on. Something that we as maori traditionally wouldn’t do. But if I’m being honest I find it fascinating, the strength of spirit it takes to make public their innermost thoughts at a time when most would be determined to push things aside and wallow is absolutely awe inspiring to me. So to Joan and Rick just wanted to say your little piece of “hyper space” has made the world of difference to Bill and I.

That’s all from the Gardiner residence this cold night, catch up again soon.

Erin

Double Blessing – Good things do happen sometimes.

Blessing number 1:

Quite a while back, when Bill couldn’t drive anymore, we gave his car to the boys. Wasn’t such an issue for us, I am within walking distance to work, our two youngest were on the bus route to schools etc. Then between the two boys they racked up a whole heap of fines, from speeding fines, to parking fines, to you name it they got fined for it…….Dang…..SO, I sold the car out from under them, paid off the fines and that left us carless. (Again, not really an issue then). The last couple of months have been pretty trying in terms of getting anywhere, mainly while Bill was in hospital, my neighbours (our cousins) gave us use of one of their cars during this period, bless them. Bill left hospital on the Wednesday and on the following Sunday while at the club, something crazy happened. Mums boss, who also happens to be a relation of ours rocked on in to the club, took me aside and told me she had brought my family a car…….I thought to myself, get outta here, those sorts of things don’t happen to us! Now, she had obviously had a drink or 10 lol, and I wasn’t really taking her seriously. BUT, while I was at work on Monday, the phone rang, it was my Mum telling me the car was ready to be picked up from the car dealers, NOW…. Well, I just about fell off my chair. I still wasn’t believing it, phoned our oldest son at work, told him what had happened, asked him if he could take the rest of the afternoon off work and to go pick the car up for us, I was too busy thinking I was dreaming the whole thing. An hour later, my family and I were sitting at home looking like stunned mullets at this gift that had been given to us… What do you say to people who just out of the blue do things like that, geez it’s been two weeks and I’m still pinching myself. Thank You just seems so inadequate.

Blessing number 2:

Just before Christmas we applied for a lotteries grant to purchase a mobility van with hoist for Bill. You guessed it…..this past week we were notified by the lotteries board that our application had been approved. GOBSMACKED! I picked the letter up from the mailbox, started reading it and by the time I got on to our deck I was doing a dance and whooping and spluttering and generally looking like an idiot, then I showed Bill the letter and honestly he almost, ALMOST jumped out of bed and did a jig himself…..lol. Good grief, from no vehicle to 2 vehicles in 2 weeks. We are still shaking our heads not believing what has happened. Nothing like this has ever happened to us before, and I don’t think it will ever happen quite like this again, but hell its put a smile on Bills face that makes it all worth while. Have started the hunt for the van which will need to be approved by a qualified assessor as being appropriate for Bills needs, and once the van has been approved then we need to do the modifications (fit the hoist etc). So not sure how long that process will take, but hopefully by next month sometime,  Bill will have van and Bill will travel YES!

Just wanted to share that with you all, still can’t quite believe it. Have got to say that we’ve been visited by angels over the past several weeks, from our cousins next door,to mums boss (you know who you are) to the lotteries board and those who helped us put that application together THANK YOU!

The Gardiners