Willow!

Introducing Willow, our beautiful Border Collie.

Willow was born in November 2010 and came to live with us in January 2011. On reflection, we should have waited another two weeks for her as she came to us at just six weeks old. We got her from a lovely man in Petworth. He lived in a very large country house with lots of grounds. He was Border Collie mad and had, if I remember rightly now, six of them.

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Willow was one of many pups and I chose her because of the sweet noises she made in my ear when I picked her up and held her close. I was instantly in love. She travelled home in the back of the car, all snuggled up on India and Hope’s laps and has now for the past six years been a much-loved member of our family. What is absolutely beautiful is that she still snuggles and makes those same noises to this day.

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Awww, sweet baby.

Willow is very friendly. If you’re a human. If you’re a dog, forget it! Her aggressive behaviour toward other dogs can be worrying at times but she’s quite easily distracted by a ball or a stick! Talking of balls, whoever invented those long ball throwers deserves a medal. They are simply brilliant for high energy dogs like Willow. Having had Rune home for much of the time, long walks over fields and through woods were a ‘luxury’ that happened only on the rare occasions when Rune attended school. Mostly, it was a case of going to a park and a car park close to the green was an essential so I could keep an eye on Rune should he choose to sit in the car, which was a regular occurrence. So yeah, those long ball thrower thingies were a God send. I could keep one eye on Rune and Willow would still get to run miles. She’s great at bringing the ball back to me and will be relentless in her running until she finally flops on the floor, unable to go any further.

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Long country walks.
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Willow in her ‘space lampshade’ following scraping all her front leg pads off whilst chasing the ball on concrete! Poor doggie had both front legs bandaged for some weeks.

Willow is a loving girl and we look forward to many more years of long, muddy, country walk with her.

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Love Heidi. xxx

Moving Day!

So the past 3 weeks, since Rune left home and moved into St. Josephs, have gone extraordinarily quickly and much has happened in both our journeys since then.

 

Following a really hairy and unsure day on the Friday,Rune moved into St Josephs on Saturday 7th January 2017. He really surprised me in the morning, actually. I wondered if there would be many tears and last minute refusal to pack his bags, let alone leave the house, but no such thing happened. We took quite a while to pack his consoles, games and dvds in his bags. Not just because there are so many (!!!) but also because it was really important that Rune didn’t in any way feel rushed into anything. I occasionally helped him as well as leaving him alone to get on privately. Meanwhile, I packed his clothes in another suitcase in my bedroom.

 

A little later in the morning, I went into Rune’s room to find him fast asleep on his bed. So I covered him up and left him there and then realised that I too felt really tired. It wasn’t through lack of sleep.  I reckon it was more of an emotional reaction to the big build up and now, of course, the day was finally here.

 

Rune woke up and came to find me. He climbed onto my bed with me and we fell back to sleep again together, cuddling. It was just what we needed. Just me and my boy, holding onto each other and snuggling.

When we woke up, we loaded the car, got our last bits and pieces together and went on our way.  India was brilliant with helping carry Rune’s belongings to the car and despite feeling poorly the previous day, was really pleased that she felt so much better as she really didn’t want to miss Rune moving into his new home. They’re close, not just because they’re twins, or because they share the same rare genetic condition, but simply because they are both beautiful people who love and respect each other and who both are genuinely kind to one another. I’m very lucky to be their mum.

 

As we approached the gates of St Josephs and wound our way up the long driveway, Rune, once again, surprised me. with his calmness and seeming acceptance of the situation. The last time he had been here was in September last year some four months previously.

‘He’s holding it all in’, I thought. I had totally convinced myself that any time now, Smith Magenis Syndrome was going to make an explosive entrance. But no sign of SMS then or throughout the rest of the day.

 

We were met by Dan, group manager, at the door and together with a couple of other staff members, we all carried Rune’s luggage upstairs to the group. After introducing Rune to his new room and placing the bags in there, India and I had a cup of coffee whilst Rune got busy checking out the X-Box and hanging out with his mates.

 

Later in the afternoon, I unpacked Rune’s belongings and placed them around his room to give a more homely feel. I felt okay doing this, actually. I didn’t think I would, but I felt fine. I think it’s because this is happening without any resistance. We’re in alignment as it’s all a part of the bigger plan.

 

We hung out with Rune for the rest of the day in the group, just playing games, drinking coffee, chatting to staff and the other young learners. Then…..it was time to leave and say our goodbyes.

 

Rune again surprised me by reacting really positively to my announcing India and I were leaving and chose to come downstairs to see us off. Of course, there were lots of hugs but instead of Rune clinging onto me desperately and not allowing me to leave, he let me go through the dining room door to outside. He stood at the window which our car was parked in front of and that’s when the tears started. It was utterly heart breaking to see him rubbing his eyes and I knew the best thing to do for myself and him was just to drive away.

 

As India and I wound our way in the car along the stretch of the driveway leading us away from St. Josephs and away from our beautiful son and brother, I felt in shock! I just couldn’t quite grasp the fact that…well…that was that. Rune had left home! That feeling of ‘not quite rightness’ continued on into the evening. India and I had planned to go to the cinema together and then onto a meal but I suddenly became incredibly tired. Physically and emotionally, I was just so drained. The cinema was definitely off the menu tonight but I felt bad for India. She’d been looking forward to the evening so we decided to still go for the meal. Bless my beautiful India. She’s so sweet, understanding and supportive.

 

Wagamama is one of our favourite places to eat so we toodled off there and had a delicious early evening meal of Pad Thai noodles and coconut curry noodles.

 

For the rest of the evening, we just chilled on the sofa. I felt very weird and quite sad. I couldn’t settle to anything or make my mind up about what I wanted to do. Read, TV, write; I just couldn’t decide on a thing. I realised that I was best doing nothing and honouring the way I felt rather than purposely try to fill the gap. I needed to just, you know, BE.

 

Today was the day my son left home. I send you off my darling boy with all the love in my heart and am safe in the knowledge that you will shine as a young man and beyond. Your disability doesn’t define who you are. You have the strength inside of you to overcome your fears and whatever obstacles and challenges you will almost certainly face. But one day at a time. We must all just take things one day at a time. It’s all we can do. img_3137

 

Love you my darling.

Rune Nearly Doesn’t Move Out!

img_3144th January 2017

Rune’s final day at home before he left for St. Josephs, proved to be more challenging than I could ever have imagined. What’s more, it wasn’t even due to him! No, not Rune, but the finance department of the social services.

The Eleventh Hour!

All was going well on Friday. Rune seemed very happy playing games in his room and waiting for my parents to visit. We’d talked through the routine of the day and he was aware that following nanny and grandad leaving, we’d be doing a spot of packing. Not his consoles and dvds. That could wait until tomorrow morning. No, just his clothes. So, all was ticking along nicely, Rune was coping well and then at 12.30pm, I received a phone call which was to rock my afternoon.

St. Josephs informed me that unless they received confirmation of funding for Rune’s residential place at the college, he wasn’t going to be able to move in the next day!!!!!!

Okay, so the funding for Rune’s package of care was agreed on back in July last year. During the summer holidays, Rune’s social worker had notified St. Josephs that everything could go ahead as the funding was in place and so they immediately started work on recruiting the two staff needed for Rune to be able to move in.

Basically, in a nutshell, St. Joseph’s regularly requested the letter of confirmation from the Local Authority, and they got repeatedly ignored. This went on for over five months! Well, right up until (and beyond) the day before moving in day! I pretty much freaked out, to be honest, and phoned Rune’s social worker to find out what on earth was going on! She told me that neither she nor her manager could understand the holdup and advised me to get in touch with her managers, managers, managers, manager! Apparently, this top manager was the one who was supposed to be liaising with the finance department to get everything done and dusted. I phoned. She wasn’t in her office and no one knew how to get hold of her. What’s more, the minutes were fast ticking by.

The Aboriginal Way

 About a month or so earlier, a lovely friend of mine and my spiritual happiness councillor, told me about how the aboriginals sang their dreams into creation. I found this to be a wonderful way to help me calm when I felt panicked or sad about Rune leaving. I would sing about him being happy, making friends, enjoying himself and settling into his room. It’s a very beautiful thing to do and I can highly recommend it. It makes feel in touch with source energy and I know from somewhere deep inside me that I’m being listened to.

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Aboriginal Dreamtime Art

So, following my initial freak out, I decided to make like an aboriginal and sing our creation into being. And wow, it made me feel so much calmer. I still felt slightly sick at the thought of Rune being let down and the fall out of him not leaving, but at least I’d stopped having heart palpitations.

My parents arrived around 2 pm and I told them the news which worried my dad. Despite that, however, he was supportive and kept reassuring me that all would be well. Rune came downstairs and had a chat and a cuddle and relentlessly asked for a new game for his PS Vita, and dad and Tammy being who they are, gave him £10.

For me, though, really, I couldn’t relax. Inside I felt so bloody cross with the whole situation. The various people I spoke to at the social services offices that afternoon suddenly turned into grovelling brown nosers when I stated that on Monday morning, the complaints department would open up the office to find a strong email from me.

Good News

Around 4 pm, the cut off time, I received a call from St. Joes informing me that despite the fact the funding confirmation email still hadn’t been received from the local authority, they couldn’t bear to let Rune down and undo the transition work I had been helping him through since I broke the news to him of his move, on Boxing day. My parents and I were very relieved although the issue wasn’t fully resolved; St Josephs had sent an email to the LA that afternoon stating that although they would take Rune the next day as previously arranged, regrettably, if they still hadn’t received confirmation of the funding by Friday 13th January, Rune’s placement at the college would be terminated.

Letting Go

 It wasn’t the time to fret about the following week. I would get back on the case on Monday. For now, at least, Rune and I could continue our plans for the big day.

We ended up going out for a meal that evening to Wagamama, one of our favourite restaurants. We actually just went out only to get some P.J’s and underwear for Rune but then the idea came to me that I just wanted to sit with him, talk with him and spend one to one time with him. I knew that if we went home Rune would just go up to his room again. India had a bit of a cold ( again. More on those issues in another post) so she had stayed at home. I got in touch with her and told her of our plans and would she feel left out. India being India, of course, was very happy for Rune and me to spend time together.

Huge changes are about to happen in Rune’s life and all I want to do right now is hold him close and give him all my love. This will be our last night together in the same house for quite some while.

Hold On Tight, We’re Off!

img_2699It’s Tuesday, January 3rd 2017. And there’s just five days left until my beautiful boy leaves home. 

 

How does that feel?

It feels very, very strange. I waver between euphoria at the thought of finally being able to live a ‘normal’ life and deep, deep sadness at thought of missing my young man so much. It is a constant up and down rollercoaster ride of emotions, daily.

The ironic thing is, I fought for this change for many months. Following lots of tears and many man hours at the laptop building our future, emailing the relevant people, those powers that be that make all the decisions and hold our lives in their hands, having meetings with Rune’s college and the two social workers involved and generally building my  case as to why Rune should be awarded the funds which would enable him to become a resident at St. Josephs, I won our case.

It wasn’t easy but like many, many other amazing happenings I’ve achieved in my life, I approached the situation without the belief ever entering my head that I wouldn’t achieve my goal. I seem to be blessed with a force of will, a power within me that enables me to see the end result and become one with it. And for that, I’m grateful as it’s certainly served me well over the years. At times, that force of will and sheer belief in my abilities to create something better than my current reality, has, quite literally, kept me alive. But that’s a story for another time…

I’m off to sew some more name tags in clothes.

Love

Heidi 🙂