Time for change…

Had no1 at his renal (kidney) clinic today. Not his normal one but one laid on for Young Persons reaching transition age ie: almost ready to move to adult services. It’s strange as we’ve always knows it’s been nearing but I suppose I’ve been in denial. We’ve been surrounded by these amazing consultants and nurses for 17 years, the thought of leave them behind and getting to know a whole host of new people is daunting……

As I think I’ve mentioned before, Sr K was the first member of the renal team who we met on the day he was diagnosed on 12 July 2001. She has always been at the end of a phone if we have ever needed her. She is in the hospital at 8am (often earlier) and has been sat with families – including myself – at 11:30pm and then in again early for another shift.

We met with the consultant he will be under in adult sector and she is lovely. She has “all 7 of the adult cystinosis patients” under her care and us very blunt and open when she says that she does not know what the future holds for them. The modern medication for it has only been around for 15 or so years. The eldest is 28….. only 10 years older than my No1. That struck a bit if a cord. She, Sr K and one of the renal docs we already know, spoke with him alone at length and then invited me in and we all spoke.

It’s like preparing to say goodbye to friends you have known for a long long time. Knowing that time isn’t far away, yet not knowing exactly when.

But, we will be fine. They all will be there to support us all, it won’t happen overnight, and most importantly God is in control, and He has placed wonderful people around us to help us through this time.

Be blessed my friends xxxx

Worship and workouts

Fabulous morning at church. Great worship, great message and the opportunity to participate in communion. The message was concerning patience. Patience in our waiting for Christ……..we as humans are not great at being patient. We live in such an instantaneous society where we actually wait for very little. When it comes to faith we really do need to remember that everything happens at the time which is right with Christ, not at the time that we seem is right.

“Strength will rise as we wait upon the Lord”

Back to the gym with friend A, and a really good session. Warm up on the recliner bikes and then a variety of weight machines for arms and abs. In the middle we did a few exercises on the floor including 3 sets of 10 mountain climbers!!! She did fantastically well!!! So proud of how she gave it her all, and also it encourages me to push myself when I feel that I can’t do that last 2 or 2 reps.

Daniel strong! Faith, friends, focus ….. has been a good day.

Be blessed my friends, be blessed xxx

Time to go home

So tonight marks our last night of holiday here in Weymouth. We’ve loved every minute of it.

My dear friend has been fabulous in looking after no2’s plants, feeding the cats and no1’s turtle whilst we have been away xxxxx

We have been to the pool countless times, we spent too many 2p’s in the arcade, we had several portions of “dirty chips” and we have been down to the beach.

The skies have been blazing blue for us, the park has been busy yet quiet, the church bells have rung for us – so much so that we barely notice them now.

We will miss those bells, but we are already planning on returning next year so we shall hear them again xxx

Dog has loved his first holiday! He has ran round the doggy Park, sniffed new and fascinating smells, surveyed his temporary territory from his new vantage point and endeared himself to every passing holidaymaker in the vicinity!

So in the morning we bid farewell to our wee caravan, it has served us all well and been home from home for us this week.

Tomorrow we start our long journey home, 466 miles back to our wee house, but we will take with us many happy memories which will last.

God has been good to me, and continues to bless me daily. Sometimes we need to simply stop and see the sunshine, and appreciate how much He gives us which we take for granted.

Be blessed my friends xxx

The little things in life

A few weeks ago someone introduced me to a Facebook page called Falkirk Rocks. The idea being that people get small stones/Rocks, paint/decorate them and on the back you write (in permanent pen) the FB page “photo, post, re-hide” and leave them in random places for others to find. Once found, you photograph them, upload the pic to the page and re-hide them somewhere for someone else to do likewise with. I had just enjoyed looking at all the pics of the decorations on the page. But this morning whilst we were out walking round the Haven Park we are in at Weymouth Bay no3 spotted one hidden in the bug hotel in the wildlife area!!! We had never come across any until now. We photographed it and re-hid it……. this one was from a different page #islastones which, it turns out, was set up for a little girl who had been battling a rare cancer and tragically lost her fight last month…….. so I have posted the photos to the page and no3 has been gathering stones to paint when we get home.

It’s a lovely and simple thing to do, just to brighten up someone’s day with something as simple as a wee painted rock.

What a simple blessing.

Be blessed my friends xxx

Holidays

So on Friday we made the loooooong journey down to Weymouth in Dorset for a weeks holiday. Car packed up with hubby, kids and dog….. dog was excited for first couple of hours but finally gave into tiredness (or boredom) and went to sleep. Left at 8am and after 3 stops for loo visits and lunch we made it here at the park at dead on 8pm.

After munching on some tasty (yet overpriced) pizzas from the onsite pizza place we all collapsed into our beds for the night.

No3 and myself went to see the old churchyard at the gate to the park, graves dating to 1701 and heartbreaking ones of family graves containing infants of ages ranging from 5 years, 3 years, 5 days and one of 2 days…… tragically fascinating. The church bells ring for each hour of the day and every quarter hour too.

More swimming planned for after lunch……

Be blessed my friends xx

There’s a dedicated dog exercise area nearby which pooch loves, and had visited several times each day already. The complex has an indoor pool and also an outdoor “lazy river” which we love!!!!! It’s been floated round many times already 😁

As is customary for pasty-white Scots no3 and myself have sunburned shoulders which we are wearing with pride amidst our Englandshire Park-mates and are secretly weeping over with each tentative application of After Sun lotion.

This morning we walked round the local village which is beautiful

Anniversary

Today marks my 19th wedding anniversary. It also marks 17 years since we received the diagnosis of No1. He reached 5 months of age and 15lb in weight and stopped gaining weight. We tried everything, took advice of Heath Visitors. At 8 months investigations began in earnest I find the cause of his “failure to thrive” despite a huge appetite. He ended up being admitted mid June for dozens of tests – coeliac, cystic fibrosis etc, and was allowed home eventually whilst we waited results. Finally on 12 July 2001 at 11:30 we were given the news that he had something called Nephropathic Cystinosis. Finding out that your 1 year old child is now one of only 150 people in the UK – and only 2000 worldwide with an incurable “life-limiting” genetic condition is devastating. “It’s not curable – but we can manage it” we were told. That is something I have never forgotten was just now positive the doctor was.We were then introduced to the most wonderful person we have met, the Renal nurse Sister K who would help us over the coming years.

There have been ups and downs, there has been tears and laughter, fears and celebrations. We have sat at bedsides wondering if this was it. But Sister K has been the stable constant in our journey and we love her like family.

We thank every member of the team who have carried us on this journey so far from the consultants and surgeons to the nurses and domestic staff all of whom we have come to know and love.

And also for the constant presence of God who has watched over my son.

Daniel Strong-er

So, it began today. At the newly opened gym with No’s 2 & 3 and with friend also. We enjoyed an hour of exercise on the rowing machines, the stair climbers, the bikes, some free weights, a bit of punching on the bag and a walk on the treadmills.

And now I am broken!!!!!

God never said it would be easy – but He guarantees it will be worth it.

Be blessed my friends xx

Daniel strong

So since starting the Daniel Plan I have really not done much at all concerning the fitness part, other than walking a wee bit faster. But for some reason, this week I’ve been taking a more active approach. I think that finding my Fitbit on Sunday kicked my proverbial butt! Normally – I will be truthful – during the summer holidays I would normally lie in bed until an embarrassing time and slob about. This week I’ve been up and dressed before 9, I take the dog for a walk whilst listening to my worship playlist and have breakfast when we get back. I’m getting in at least 13,000 steps as opposed to a pitiful 3000 if I’m lucky. My fluid intake is way better also and I’m feeling fab xx

Also today I went for a tour of the new gym which opens on Friday, I signed up in April when they were taking early membership, my friend signed up today, and my two girls who came for a tour are wanting to join and we’ll be going tomorrow to do that.

So, Daniel strong here I come.

Be blessed my friends xxxx

Family

Yesterday evening we ventured down to our local Indian restaurant for a joint birthday meal for no’s 1 & 2. We often have takeaway but only really have a sit in meal for special occasion. We find that we all appreciate it more that way. We had a lovely family meal with some great conversations and plenty of laughter.

Growing up I wasn’t getting married and wasn’t having kids, 19 years of marriage and 3 kids later that kinda didn’t go to plan hahahahaha!!!

I thank God for my family, they equally drive me crazy and keep me sane at the same time. God has a plan for each of them, and I know He will walk beside each one throughout their lives. I brought them up with a knowledge of Christ and although 1 & 2 don’t come along to church these days (3 does) I know that they still have their faith. I’m a firm believer that they choose if they want to go to church or not once they’ve grown up a bit, but how can they make that choice if they have never been in an environment to learn about it.

This afternoon I spent sitting in the garden of Robin House (one of the children’s Hospices in Scotland) whilst the girls were at the siblings group. It is the most wonderful place with amazing staff and volunteers. The grounds are stunning – all tended by some of those volunteers.! The staff have such amazing beautiful hearts and it’s blatantly obvious when watching them tend to the young people in their care. The place is just beyond description – bright, happy, cheerful, busy and full of laughter and smiles ……. and the food is amazing!!!!!

Take a look:

https://www.chas.org.uk/

Be blessed my friends, be very blessed xxx

sunny days and birthdays

So here I am sitting in my wee garden with my peppermint tea with my wee dog, under my £20 Tesco pop up gazebo on my kid’s Ikea chair…… listening to The Cranberries. Good times.

On Thursday my No1 turned 18. He didn’t want any fuss made as that’s just how he is. Yesterday No2 turned 16. She also didn’t want any fuss, she’s awaiting her assessment for ASD. This evening we are heading to our local Indian restaurant for a joint birthday meal for them both.

My kids are amazing, I know every mum says that 😁.

So after a week of running round organising end of the school year for the 3 of them and also last minute gifts etc I’m gonna sit here and chill.

Enjoy the sunshine – don’t get burned!

Be blessed my friends xxx