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The Thinking Chair

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This was a very hard post for me to write, those that visit regularly will know that my Nan meant a great deal to me.

Last Saturday marked 7 years since she said goodbye to us and joined my Grandad in Heaven. On that day every year since that day back in 2005 I experience mixed feelings. Over the last 7 years I’ve spent alot of time writing these feelings down and a while back shared some in a poem I wrote to my Nan, The Final Goodbye.

I know I’ve shared this story before (here) so don’t want to bore everyone with it all over again but as I’ve said (many) times before writing is how I deal with how I’m feeling. I keep going back to a few weeks before she died, we were out walking, (she in her wheelchair, me pushing), we made daisy chains, she was so happy and relaxed and when I placed a crown of daisies on her head I told her she looked like an angel………..she replied with “I’ll always be your angel”. Those words keep going around in my head, did she know what was about to happen, did she know what would happen over the next few months………..or years? My Nan had Alzheimer’s  and so at the time I thought it was simply “one of those comments” that she often made but a just few days later those words meant so much more to me and today I don’t think I can put into words just how much those words that she said to me actually mean. A few days after that outing my Nan had a stroke, she fought so hard to stay with us but it was just too hard. I told her that it was ok for her to go and that we’d be ok, she looked at me with so much sadness in her eyes I could feel my heart breaking right there. I know people say that when someone they love dies a part of them dies too, well that day a part of me did die, I was broken and didn’t know how to deal with my grief. Even now as I sit writing this I can feel a huge wave of grief washing over me, a part of me is missing and it’s a part that I can never get back.

However the anniversary of her death is also the anniversary of the start of my pregnancy with J. 9 months after I’d lost a huge part of my life, an amazing and wonderful new part of my life entered the world. In a way he saved me, I was so lost in my grief when my Nan died and I wasn’t coping, I just couldn’t find a way to move on. When I discovered I was pregnant, although cautious after 4 miscarriages, I knew this pregnancy was going to be different, this baby was a precious gift from my Angel,my Nan. I’ve always known he was special, I just didn’t realise just how special he was until recently. Going on to have another 2 miscarriages has meant me having a whole lot of tests being done, (and I’m back at the hospital next week), and I’ve been told that they’re not sure why I keep miscarrying but they know it’s me with the “problem” and that I may only have a 20% chance of having a successful pregnancy……………… See why that makes J even more special. :)

So with everything going around in my mind at the moment, I’ve had alot of mixed feelings about the anniversary this year. I miss my Nan everyday and if I could have one wish it would be to have just one more day with her. I know that feeling will never go away. I know that I’ve never really dealt with my grief and I don’t know if I’ll ever be able to fully deal with it. I know that I’ve often said to people that know me, J is my gift from my Nan and I’ve always believed that. But this year, with recent events in our lives etc I’ve really started to believe that. And I believe J was given to us for a reason, I needed something special and that something couldn’t get any more special than my precious boy.

Last Saturday as I watched my precious little man running around a local park, my heart smiled as I watched how free and happy he was. He didn’t know what a sad anniversary that day was but as I watched him I realised he was showing me that my Nan was free now, she’s reunited with my Grandad and her babies, she’s happy and at peace. And as I watched him those words rang out in my head once more “I’ll always be your Angel”.

I don’t know what this means, maybe it means I’m finally beginning to move on and to deal with my grief. We’ll go to the cemetery to visit my Grandparents tomorrow, I couldn’t do that last week, the feelings were too raw, it was too hard to face them but this week I feel a little more at peace with it all now and it’s all thanks to my special little boy.

My Dearest Nan,

I thank you for the gift of J

I thank you for showing me the way

I thank you for always be there

I thank you for loving enough to care

I thank you for memories to treasure

I’ll thank you for your love forever x

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I’m wondering is it possible to worry yourself sick?

J has had a rough time recently, he’s had to deal with everything that been happening at home, (although he doesn’t know the full story, he’s still had to deal with it), but he’s also had to deal with his biggest anxiety………. SCHOOL!

We had a great weekend last week and both bedtimes lasted for less than an hour…………….the Sunday night happened and every bedtime since then has been pretty hard going.

This has been a tough week for him at school. Monday he went to his first proper planned assembly/worship. Not only was this a huge thing but even before going there he had to deal with a big change……….. Every morning J has been dropped off at the school’s reception and taken through to his classroom, on Monday he had leave 1/2 an hour earlier so putting his morning routine out and then he had to go into school through another entrance, straight from the playground into the classroom. Now I know to alot of parents this might not seem like a big deal but parents of ASD children will know this was huge………..really HUGE and alot of change all at once for him to deal with.  He seemed to deal with it “ok” but by bedtime he was showing signs that he wasn’t “dealing with it” quite as well as I’d thought.

Then on Wednesday he went in early again this time to have some one on one time with his teacher whilst the rest of the school were in assembly. Again he went in early, and through the door he usually exits school. However this time he had been promised that he wouldn’t have to go to assembly…………………………the first thing he reveals to me when I pick him up that afternoon is “And I did have to go to assembly so you and Mrs H lied to me!” He wasn’t happy about it! What had actually happened was he and his teacher had taken his class to assembly, where he had sat with them for a few minutes and then once they were all settled J and his teacher returned to the classroom for their 1:1 time. Ofcourse he wasn’t happy, he had been promised that he wouldn’t have to go to assembly and then he had been taken to assembly, despite not having to stay ……………. I can see why he thinks we lied. *sigh*.

When I picked him up from school on Wednesday we were also informed that his teacher would not be in school the following morning and that J would have a supply teacher for his 2 hrs at school. Sometimes I wonder what some people must think I mean when I say he needs to have prior notice of changes. Ok, so I know some can’t be helped, people get sick etc but she was going on a course. I just don’t understand why they couldn’t have said something earlier in the week, instead we had almost no notice. J had a really tough bedtime and then morning. Yesterday he had a huge meltdown claiming to be dirty (which is part OCD and a huge part a way of showing his anxiety), he had tears, yelling, constant asking if he or the things he touched were dirty and then refused to touch anything, he sat on the bottom step with his hands in the air. (In fact, thinking about it, his “dirty” quirk has been a little overboard all week!)  A few times before leaving for school he asked “what if the supply teacher doesn’t know that I’m not having lunch at school and doesn’t let me come home?” and “What if the supply teacher makes  me do something that I can’t do?” and …………..well you get the picture.

Today it’s the schools Jubilee Party. This should be a fun thing but for a kid on the spectrum it can be hell! His first panic was clothes…………. the children have been asked to wear red, white and blue…………. J’s first response, “but my school uniform isn’t red!” (he wears a blue jumper and a white t-shirt) and then “I can’t wear my clothes, I have to wear my school uniform!” after we tried to explain he could were whatever clothes he wanted to school just for one day. After several conversations we gave up and told him he could just wear his school uniform and red boxers ;) One problem solved, we thought. Next worry was food. The party will be after lunch and there will be sandwiches and ice lollies…………. J’s response “But I don’t like ice lollies and we have to eat them Mrs H said everyone will be having them!” And “What if they have dirty hands when they make the sandwiches? They’ll (the school) get cross with me if I don’t eat them!”  Convinced his teacher to tell him he doesn’t have to eat anything if he doesn’t want to. I thought problem 2 was solved, now I’m not so sure. Next problem, “What if it’s too loud or if someone touches me?” …………………. ok the issues regarding today have gone on and on this week.

However last night he suddenly became ill. Coughing and saying his head hurt. He was awake several times through the night and then up at extra early this morning but just seemed very lethargic and lay on the sofa for the first hour of his day. He did however mention school several times too, asking if he had to go, if he was too sick to go, if the party would make him feel “more poorly” etc etc…….So I’m wondering is he really sick or has he made himself sick with anxiety. He had a temperature and you can’t fake that ………… right? …………… I don’t know but I’m wondering. He has had a really tough week with alot of changes and alot of “stuff” so I really am wondering if he’s worried himself sick. He has made himself  sick with worry before, again over school so I just don’t know.

Anyhow as it’s the last day of this half term and most of the day is the party so I’ve decided to keep him home, hopefully he’ll relax a little over the next week and start to feel a little better.

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So over the weekend J and I had a “Therapy Day”, to be honest we both needed it for different reasons.

We spent the whole day doing stuff together, we did some food therapy, used Theraputty, drew pictures, blew bubbles, did puzzles and even did some painting. It was a very busy and pretty tiring day but it was just what we both needed. J was very relaxed after his day of “therapy” and spent some time relaxing with Mario and then playing with his Dad before going off to bed. Whilst he was playing Mario I started writing some things down, just to clear my head. And then once he’d gone to bed I wrote some more. I wrote from the heart, as I’ve said before I’m not great with feelings but I like to write things out. I have a few more appointments coming up over the next month that I hope will give me some answers and maybe a little more hope……….. who knows maybe they’ll even start to heal the mind games and grief that’s troubling me at the moment.

But anyhow, this is what I wrote …………….

I don’t know if I can, I don’t know if I dare

Open my heart to begin to share 

How I’m screaming inside, how I really feel

Because then I have to admit what’s happened, it’s real

*

I try so hard to lock my feelings inside

But sometimes they’re too overwhelming for me to hide

The emptiness inside fills my heart with pain

As the thoughts in my head drive me insane

*

So many thoughts going through my mind

Trying to understand why life’s so unkind

But as the words go around they hurt my head

And inside I feel nothing, I’m empty, I’m dead

*

To lose one baby too soon broke my heart

But to lose five more has torn me apart

My heart’s trying so very hard to understand

Why we’ll never get to hold their hands

*

It doesn’t make sense, I keep thinking “why not?”

And then “Should we be happy with what we’ve got?”

But maybe, just maybe I want a repeat of the joy

That I get each and everyday from my special boy

*

But there’s a pain inside, the scars run deep

It overflows and wounds begin to weep

I don’t know what to do, again do we try?

How?   When all of our hope has run dry

*

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So, I’m sat here staring at the screen wondering what to write. I’ve got a million and one things running through my mind but can’t seem to find any of the words I want to write……… So I apologize in advance, this is likely to be another rambling post and if you want to stop reading now I’m ok with that, I’ just trying to get some thoughts out.

We’ve had a tough couple of weeks and although I’ve written some things down I’m not sure I can share everything yet. I’ve only “spoken” with a few select people about what’s been happening in the MumtoJ house but sharing and expressing how I feel is something I’ve always struggled with. I know it’s not healthy to hold feelings inside but everybody deals with things differently. I’ve kinda shared how I’ve been feeling with myself. I like to write, I’ve written alot in the past couple of weeks, it’s just my way of dealing with everything that’s happened.

It’s hard for me to express how I’m feeling but it’s even harder when you’re not sure how you feel. I have so many feelings running through me at the minute and so many thoughts that are playing games with my mind that I’m really not sure how to deal with it all. How do you deal with something that you don’t have answers for but you know is your fault and yet there is nothing you can do to prevent it happening? And whilst dealing with the mind games I still have to be Mum, I have to be happy, smiley Mum. J’s face was etched with anxiety when events of last week started to unfold, thankfully Hubby took him away from the situation before it all got so much worse. However since then he’s been double checking things constantly, he’s been much cuddlier than usual and so everything has to be ok, I have to be ok for him. I don’t want him to ever feel the anxiety I saw on his face last week again. I should point out that I have a wonderful Hubby who has been very supportive but even his love and support hasn’t stopped the mind games.

I guess it’s the thoughts playing on my mind that are eating me up, the feelings inside I’ve had and dealt with too many times before but it’s the “stuff” playing games with my mind that I’m struggling to deal with.

Ok enough rambling, sorry…………………… again! And if you made it to the end of this post, thanks for sticking with it…………again!

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I’m not really sure what to write, I not really sure what I want to say………….. in fact I’m not really sure of much at the moment :(

It’s been a rough couple of weeks in the MumtoJ house, in fact it’s been a rough couple of months. Right now I’m not sure I can explain it all, I’ve got so many thoughts and words racing through my head at the moment I just needed to write something down…………. anything! ‘Cus my brain may explode if I don’t write something down.

We seem to have had one knock after another and to be honest it’s getting harder to hold it all together at the moment. I’m finding it hard to understand why we’ve had to deal with so much crap, (sorry but couldn’t think of another word to use), and what we’ve done to deserve so much crap, (sorry again).  We keep fighting but there’s only the 3 of us against the world, hardly a fair fight is it? I often sit and chat to my Nan, crazy right? I mean she’s been dead for almost 7 years, but she listens and I don’t know who else I can talk to. If she were still here I know she would have understood. I don’t talk about my faith and my beliefs very often but to be honest I’m not sure what they are anymore either.

I’ve always found writing theraputic and with everything that I’ve got going through my head at the moment I just needed to write something down. I know this is abit of a rambling post and to be quite honest I’m not sure I care whether you’ve made it to the end of this post, maybe you decided to give it a miss after the first line…………. If you made it to the end, thanks for sticking with it and sorry for rambling.

Time to put the smile on and hope everything really does happen for a reason …………….. a good reason!

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Part of me has found it nice being back in England. It’s been nice catching up with some family and friends, I’ve enjoyed shopping a little more over here and Hubby has been seen by a spinal specialist already. However we seem to of had one bad thing after another happen during the last 3 months.

We didn’t have a great moving day and we’re still dealing with an issue from that day. Our container was also “delayed” in leaving and so missed the first ship it was supposed to be on, This has meant that not only has it arrived a month later than originally told but we have had to re-complete all of our customs forms too. Today we discovered due to the incompetence of our removal company in Australia and incorrectly labelled packages, Customs have opened some of our boxes/packages and have confiscated some of our belongings, despite the very same items being owned by us for over 7 years and so have travelled out of and into the UK on more than one occasion. Oh and we won’t know which items have been removed until our shipment is delivered to us on Friday!

We’ve struggled to get J’s diagnosis recognized in the UK. This has meant the school that we chose for him has had to source outside funding in order to provide him with support for the last term, however that funding has run dry and so this term it is expected that he will attend full time with no support. We also had to see the same Peadiatrician that refused to diagnose J before we left for Australia 2 years ago, it wasn’t a good meeting and we’re now waiting to see another Peadiatrician, 25 miles away! In Australia J had support however limited it was in school and he had support from an OT, Speech Therapist, Psychologist and Disability Services………….In the UK so far J will receive zero support.

Relationships with some family and friends have also not been as they were when we left 2 years ago. Time changes people and I guess being thousands of miles apart can also change a relationship too. I know it’s partly my fault too, I know I’ve changed alot. Another thing that’s forced a change in some of these relationships is reactions to J…………and my reactions to those reactions. What people have to remember is J doesn’t remember the majority of these people and so they are strangers to him…………He doesn’t react well to strangers unless he feels a connection with them, (like his best friend H). Then there’s been the people who haven’t been sure how to react to his behaviour and so once he has reacted negatively to them they haven’t returned for a second visit or haven’t been able to relax and be themselves around him on the next visit. And of course there have been the ones who still think our parenting needs work. Not everyone but some have and to be quite honest I just can’t be bothered to worry about what they may or may not think about my son’s behaviour or our parenting ‘cus we’re all doing the best we can and to me that’s all that matters.

Ofcourse the weather’s been up and down but we’ve felt the cold and we’ve all missed the sunshine that Australia gave us! And the icing on the cake………………… feeling cold is going to be even worse tonight, we had our boiler services today and was told it was leaking Carbon Monoxide and so had to be shut off for health and safety reasons, with the hope that it may get repaired tomorrow!

Then there’s Hubby’s back…………..the reason that we returned to the UK. We left Australia after being told there was nothing more Workcover would do and was told to claim financial support from the Australian Government, something that as non-citizens we couldn’t do. Since arriving back Hubby has been seen by a spinal specialist quite quickly but has now been referred to a pain clinic. They now think he has had a trapped nerve that is no longer trapped but is sending pain signals to his brain and body…………………………….Seriously, we came all the way back to the UK for them to tell us that!!!

If you add all of the above to how we miss our nice big house in Australia, (you forget how much smaller houses in England are), our friends that we left in Australia, the beach and the life that we had over there, we’re left questioning our decision. Did we do the right thing coming back? And where do we go from here?

 

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