Monday, May 18, 2009

Two Huge Thank-Yous

I have lots, as ever, to tell you all but today's blog is all about thank-yous. I have two massive thank-yous. William received a special parcel today, a wonderful quilt of Thomas and his friends, characters and the ones in the real world today from Love Quilts. It is a fantastic quilt, made of cross stitched panels from all over England and from Northern Ireland, Majorca and the USA. Thank-you Katherine, Karen, Stephanie, Sandy, Jan, Jan, Gilly, Victoria, Sue, Debi and Patricia. William is a very happy little boy and I know he will love it and treasure it always. It will be a family heirloom and will be used as it is meant to be but equally well looked after and cared for.
I have another huge thank-you which I have been waiting for a good time to make. Well, we are on the subject of thanks and these thank-yous are linked too. A huge, huge thank-you to David and Jacqui. David and Jacqui are cousins of Paul and Paul once sung at David's wedding, a good few years before I met him. We received a very amusing letter about this and David wanting to return the favour but not really being a singer himself. David decided to return the favour by training for and running the Edinburgh Half Marathon on 5th April which he completed in an impressive 2 hours and 4 minutes. In doing this, he raised some money for us to help William and the family. This was a total surprise to us and we were amazed by the generosity of David's sponsors, especially the Staff at Support Services and The University of Edinburgh. Thank-you so, so much.
We have been thinking hard about how to spend the money. Now, here is where this is linked to the quilt. William's bedroom resembles a hospital room. He has a hospital cot that was to enable us to access his line easily when he was on TPN. He has no bedroom furniture but has a drip stand and a trolley to prepare intravenous medicines and his TPN and, in place of toy shelves, he has a set of drawers full of medical bits and pieces. Some of this he still needs as he has his feeds and his stoma bags and things we need to change them. Sometime over the next year, William will be having a brand new bedroom. We are having a downstairs extension as his physical limitations mean he can't go upstairs without a lot of help. Our house is due to be adapted for his needs. We still don't know if he will eventually need to use a wheelchair in the house as a lot depends on how he copes with his body as it grows. With this in mind, we are having major work to widen and move doors and open up extra ones, as well as a downstairs bedroom and wet room for William. We will have a huge job to re-floor and decorate the whole of downstairs after this (so be ready for a painting party anyone who lives near enough). We wanted to be able to make his room extra special as he has never had a little boys bedroom with medical care taking it over. With so much to do to the house, this would have been limited but we are going to spend most of the money on a really great room for Wills where his medical equipment can be hidden away and it will be a bedroom he can enjoy and play in and retreat from his sisters in. This will be something he will really enjoy as he grows up. The girls had to go into a room together when William came along and are going to have a room each again when he moves downstairs. The time I spent on all William's care meant that I have neglected their room and it has run down a fair bit (the whole house has really). So, they will each have some of the money to spend on personalising their rooms. They are really excited about it.
This will all be a fair way down the line as we are waiting for the work to be done and don't know when it will be. So, in the meantime, a little of the money will be spent on a few days by the sea - the first sea-side holiday we have had since William was born. We can only manage a few days away this year as William's care needs are still high and, as I don't drive and Paul is at Glyndebourne every single day of the summer, there is only so much feed and medicine I can carry. We will make it really special with the extra funds we can put into it and the children are really looking forward to it.
To help with this holiday and to make the best of our new lives having loads of great days out, I wanted a fold up special needs buggy for William as his electric chair and big frame buggy, although best for him for school and local trips, are very limiting on a day out. Last week, I bought one of these buggys from e-bay to put a little of the money to immediate use and we put it to the test on a day out on Saturday (blog on that to follow as this is long enough already!).
There is one last thing we will do with it (we are really making it work so I hope you will all be pleased and David will think those miles worthwhile!). While William was isolated in his cubicle for three months after transplant, the very best £20 we spent was on a cheap and cheerful freeview digibox to supplement the TV in the room and enable Wills to watch round-the-clock CBEEBIES, which was his lifeline really. We want to purchase a similarly cheap and cheerful box for the five cubicles to enable other children to be able to enjoy the same after their transplants. I will be sorting this out when William is in for his 6 month post transplant tests in a couple of weeks. It isn't a huge amount of the money but will bring a lot of joy and comfort to the children, and to the parents who sleep in there with them. Cheap boxes work well and are not too expensive to replace if they get stolen so, within reason, we will try and make sure there are always boxes in the rooms.
I really hope you are happy with our choices and will post photos when the bedrooms are done. We were totally amazed by this so thank-you so much again.
Oh, and David and Jacqui, you did include an invite to come and see you. I hope you meant that because we hope to combine a Gifts of Life photoshoot near Glasgow with taking you up on it sometime. We are really looking forward to meeting you


Becky said...

Lovely photos of Will - what a gorgeous quilt! Sounds like a great use of the money; I bet the girls and Wills are excited about their rooms!

Becky xx

Molly said...

The quilt looks fantastic, what a good idea, and Wills looks really well in the photos :)

I hope the adaptions to your house go smoothly and Wills, Ellie and Hope enjoy choosing the decorations for their new rooms. I used to have a second wardrobe in my bedroom for all my medical stuff pre-transplant, but I finally got rid of it a couple of months ago, which was great :)

Buying Freeview boxes for the other cubicles on the ward sounds like a fantastic idea. When I was in for 12 weeks post transplant we brought ours up from home, which I really enjoyed using. I found I could watch the music channels even when I wasn't feeling very well and wasn't up to watching proper programmes.

Moll x x

david and jacqui said...

Hi Sarah, Paul and family

Thanks for letting everyone know what you are going to do with the money. You're certainly making it go a long way and we think it is lovely that the girls are getting some off it because I'm sure things have been hard for them at times too. We look forward to seeing you all when you come up to Glasgow. You can drive to the city from here in 25 mins and we have plenty of room for all of you if you were all coming. We can lend you a car too if needed.

All the best and we hope to see you all later in the year

David and Jacqui