waiting Archives - Raisie Bay

New Sofas

Do you remember my new sofas from six weeks ago? Well, even though I really like them, the rest of the family had mixed feelings and now we have ended up swapping them. We had to wait for the new ones to be made but I think they are worth it. The new sofas are a bit different because even though they are leather, they have fabric seats and backs. (Not cushion backs, I’m sorry but they would drive me insane.) They arrived on Monday morning at 7.30am. Just as we were getting the girls ready for school!

I believe everyone is happy with the new sofas. Well they had better be, I’m not changing them again. I’m just glad I was able to change my mind with no issues this time.

Sports Day

The girls are having sports day this week and they are both really excited about it. I was never a sporty person and I hated P.E. and sports day. The only game I really liked playing was rounders. I was good at the long jump, especially having longer legs, I barely had to put in any effort to get further than anyone else. I was rubbish at short distance running as I was a slow starter. I did manage to keep up stamina in longer races though. I can’t remember ever winning anything.

School sports day these days are much more fun, and the girls love them. Star can’t take part in a lot because of her Elhers Danlos Syndrome. She suffers from tiredness, dizziness and joint pain. She does try as much as possible though and still has fun. The school is brilliant with her, if she says she can’t go on they let her stop.

Boo loves sport, she’s not the best at most things but she tries really hard. I’m hoping that she wins something as I know she will get a real boost if she does. I’ll be waiting impatiently to hear how she does. Daddy is going to watch her.

Update: Both girls had real fun on their sports days, no medals were won but they really enjoyed themselves. Boo did get a trophy at the year six leavers assembly, for being ‘Artfully Creative.’ Now, I’m waiting for them to come home from their last day at school…yay!

Holiday

It feel like I’ve been waiting for this Summer holiday for so long! We really deserve a rest from school. Can you believe, I have spent a whole term home educating the Little Man. He’s done really well and we have folder full of work to show the LEA when they come to check on him. As well as all the curriculum work we’ve also enjoyed learning about electronics, rainforests and magnets. We have even fitted in a little Quantum Physics!

He’s been reading a longer book than usual, Kid Normal by Greg James and Chis Smith. We can’t wait to see how the book ends.

The summer holiday is looking really exciting for us. We start with Boo’s birthday, I’m not sure what we will be doing yet but I do have her presents. Then we have a charity gig to go to and Graham will be on stage doing his part.

Next up is the Little Man’s birthday and I’m really hoping we can get out for the day. We have yet decided where to go but I’m sure it will be fun. I have most of his birthday gifts ready.

Mid August we will be going on holiday, it’s a camp in Devon that we went to 8 years ago. Before the Little Man was born. We had such a brilliant time there that I’ve been waiting for a chance to go back and now I won’t have to wait too much longer.

After the holiday we still have some excitement as it will be Star’s birthday before they go back to school.

Rain

I think that when it rains it’s going to be so welcome as we’ve waited for so long now. It’s just not the way we expect our summer to be is it. We had a tiny bit of rain the other day, I was actually sat in the garden and felt it. Sadly, it was not enough to even leave the patio wet.

I want to it to rain now, a nice big downpour to bring back the green!

Then it can go away again and give some more weeks of glorious sunshine. I’ve never been a summer lover but I have to admit, I’ve felt so much better in the heat, the usual aches and pains are really not so bad. I can see why chronically ill people decide to move to hotter climates.

IVIG

IVIG, is the treatment I receive for my condition. I have it by infusion in hospital once a month and it seems to be helping. Before I used to have to wait 3 months for a treatment, but the monthly one is working much better so I’ll be telling my consultant at my appointment in October. I have been waiting patiently for my consultant appointment, I’ve been doing some research and want to ask him about some other treatments.

There won’t be too much waiting for my next treatments though. I have one next week and another the day before we go on holiday, how brilliant is that! Having it monthly also seems to reduce the side effects because the dose is smaller.

Waiting

Photo by Jaelynn Castillo on Unsplash

My word of the week this week is waiting because I’m waiting for so many things, thankfully they are all good.

This week I have been waiting.
I have been waiting for three weeks, but this week it’s hit harder because before I was just trying to have a little holiday fun and not think about things.
I have still been chasing up answers though, even though I’ve not had much success until today.

Today our Limbo was ended, well sort of. Yesterday, after calling the hospital and getting a much less than satisfactory reply from the ward secretary, I decided to call the hospital patient liason team PALS. They promised they would find out what was happening for me.

Now, those that know me, know that I am a patient person. I’m good at waiting. However, this involved my little girl and she is in pain. I was told three weeks ago that she would need an operation to fix her neck. I was told that I would contacted by the end of the week and told what the next steps would be. I wasn’t contacted and haven’t been contacted since. So we have been in limbo. Is my daughter having an operation, when will she be seen again, are there any other options, is it going to get worse, can it be fixed???? So many questions and no-one to answer them.

Today, PALS called back. I wasn’t home, I’d popped out for just half hour when the call came. OH took it and informed me when I got home that our daughter was going to have an operation and that they would call next week to discuss it.

I can’t say I’m happy with that, it’s all very vague and of course, “we’ll call you” has been heard so many times now and they rarely do call.

Still, the fear has returned to my soul. The fear I have felt so many times since my girl woke up with a twisted neck almost nine months ago. I am scared, very scared. Of course I want her fixed, but how I wish it could have been done that first week she spent in hospital, why has it dragged on so long, why is it no better? Can it be fixed?

I will always be in limbo until I know the answers.