Abit Of Therapy

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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Not Sure What To Write……..

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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Dear Jellybean……

Dear Jellybean,

I can’t believe a year has passed already!

12 months ago we had hope in our souls, belief in our minds and love in our hearts. Hope that in some way things would turn out ok in the end, belief that one day we’d hold you in our arms and so much love for you in our hearts. Then came the news that would take away all of the hope and belief that we’d had, leaving a hole that would be impossible to fill.

I’ve thought about you often over the past 12 months. Wondering if we’d of had another prince to rule our house. Ofcourse you would have had a tough time trying to rule the house of J but I’m sure he would have loved you as much as we already did. I can imagine that he would have been such a fab big Brother and would have taught you so much. Or maybe you would have been a little princess, a little sister for J to watch over….Yes you would have been a princess, imagine the fun we could have had on our Mother/Daughter days. How we would have laughed together as we shared precious memories and cried together as I wiped your tears when a boy dared to break your heart.

I often wonder who you would have been like. Everybody tells me J looks like Daddy but has my personality, so I wonder if you would have looked like me but had Daddy’s personality. I wonder what your eyes would have been like, would they sparkle like your Brothers? I wonder what sort of person you would have grown into. I bet you would have had a smile that could light up a room, just like your Brother.

I’ll never forget the pain we felt rip through us when the doctors told us that we’d never get to hold you in our arms, we’d never get to see that beautiful smile or the sparkle in your eyes. That day like too many before it are memories that will remain with us forever, as will the love for you in our hearts. For now my sweet princess, I’m going to keep hold of those memories that could have been.

Lots of love

Mummy xxxxx

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A Week of Highs, Lows and a Little Bit of Blue!

This week has been crazy with so many highs and lows!

This week the hospital finally decided that they couldn’t leave things any longer and so I finally had the necessary surgery – A very big low!  I’m not sure that there is a positive spin to put on that but I’m going to try. J has never had a night away from me before and for any child it would be a huge milestone to deal with, throw a little ASD into the mixture and it just makes it an even bigger milestone.  I was supposed to be in and out the same day but having been through it four times previously I knew there was no way I’d been home the same day  So I packed an overnight bag and my lovely hubby and J dropped me off at the hospital.  Later that evening, (as predicted), I made the call to hubby to let him know that I was staying overnight. I felt very silly as the nurses watched me giving simple instructions to my hubby, how to make J’s sandwiches for school, exactly what he had to take etc etc and then said goodnight to J and told him to be good for Daddy and to do some good listening.  This was a huge low moment for me, being away from the two people whom I love most in the world, not being able to give my baby his kiss and cuddle at bedtime, or read him his story and not being able to talk with my hubby about how I was feeling and to get an “it’s going to be ok” hug from him………. these were my lowest moments this week.  Despite all the feelings that I’ve had recently surrounding the miscarriage, when I said goodnight to my boys on the phone that night I realised just how lucky I was. I have a wonderful husband who has also experienced these really tough times with me and we’ve got through it together and we have an amazing little boy together. Together we have a great family There are so many other people out there who don’t have someone to go through tough times like this with and so many couples who aren’t as lucky as us, we have a gorgeous son who is the centre of our lives, maybe we should just be happy and grateful for the gifts that we do have.  (Abit of a turning point for me)

I had one of my proudest moments ever the day I came home from the hospital…………….. Father and Son had coped brilliantly! J had gotten upset at bedtime because he couldn’t give me his usual kiss and cuddle and Daddy had calmed him down and gotten him to go to bed. The next morning J had gotten up at just after 5am and climbed into bed with Daddy, just for abit of “mum’s not here but it’s ok because dad’s still here” security and then Daddy had managed to get J ready for and delivered to school on time before coming to the hospital to collect me.  I’m just so proud of the way they both coped with Mummy being away for the night.

Also this week my friend DM and I finally got everything organised for our new Autism Support group. We have been planning things for a couple of weeks but this week we finally booked a meeting room, got some local companies to support us by donating tea, coffee and snacks, produced our flyers, a newsletter and even some small cards to distribute.  Thanks DM for helping to take my mind off other things and for all your hard work this week organising things.  I think the support group is going to be a great addition to our local community

 

And finally……………….. speaking of Autism……………. We went blue for Autism today!  April is Autism Awareness month.  Today (April 1st)  World Autism Awareness Day is being celebrated in Australia. It will be celebrated world wide tomorrow (April 2nd).   The idea is to wear blue, light up blue (we’re also putting blue bulbs/globes in our outside lights, to light up blue) to show support and raise awareness for Autism.  We couldn’t find anywhere in our local area that sold blue bulbs so my lovely hubby has actually painted bulbs so that we can “light it up blue”

J even wore blue socks to school along with his blue sun hat and this morning DM picked me up to take me along to our Playconnect group (I can’t drive at the moment so thanks for being my taxi DM x), we arrived dressed all in blue

 

I want to say a huge thankyou to everyone for your lovely comments, cyber hugs etc etc over the past couple of weeks. All have been so very much appreciated so thankyou xxx

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Sometimes Things Happen For A Reason……… Right?

I’ve always thought that things always happen for a reason. Sometimes things happen that we don’t want to happen but that’s part of life, some of us are luckier than others but still everything happens for a reason……….. right?

Almost 13 years ago I sat holding my Granddad’s hand and watched him peacefully pass away. That morning I had been told not to go to the hospital because he had had a rough night and needed to rest. Well I’ve never been one to do as I’m told and if my Granddad had had a rough night then I wanted to be there with him, so I went to the hospital anyway. My Granddad was my father figure growing up and whilst I felt my heart getting ripped from my chest when he died I managed to hold it together long enough to make the call to my Mum, who was with my beloved Nan. That was it, the reason I’d been there that morning, so that I could be there with him, so that I could be the person to tell those that mattered the devastating news rather than a stranger calling them but most importantly so that my Nan could take a little comfort in the knowledge that he wasn’t alone.

A week after my Granddad died, (around the time of his funeral), I discovered I was pregnant, it was my 3rd pregnancy so I was very cautious with my feelings. Around the same time my cousin also discovered that she was pregnant. Unfortunately I again went on to miscarry however my cousin went on to have a healthy baby boy, who looks, (in my opinion), very much like my Granddad. So whilst we were forced to say goodbye to my Granddad, maybe it was to make way for my Nephew…………. afterall everything happens for a reason, right?

When I said goodbye to my Nan I thought it would be something that I could never recover from. My Nan was my world and I would have gladly given my life for hers. When she died my world stopped for a while…………….. then I discovered that I was pregnant again, (5th pregnancy). Despite the usual cautiousness with my feelings something felt different this time around, I felt that this baby was my Nan’s final gift to me and that she was watching over us to ensure a safe arrival. I had various difficulties during the pregnancy and J was born a month early by emergency cesarean but he was and is perfect. I still miss my Nan everyday and I’m sure I will for the rest of my life but I take a little comfort in my belief that everything happens for a reason. Maybe she had to say goodbye to us so that she could watch over J as he entered the world, I often wonder if she knew what the future held. And maybe we had to go through the pain of the previous miscarriages so that when J entered our lives we would really appreciate just how special he was and would love him all the more, (if that’s possible).

So I’ve been thinking alot recently about my belief in “things happen for a reason” and I just can’t see it right now. I can’t see what possible “reason” there would be for us to go through another loss, surely we’ve had our fair share! We’ve had a variety of tests done now, my arm is beginning to feel like a pin cushion, the results of which we’re still waiting on. But what’s really not helping is the way the hospital seem to be dragging things out. It’s too hard to go into details but right now we’re in limbo…………. I’m not miscarrying in the usual way (whatever that means!!!), no-one wants to do the necessary surgery until certain tests results come back but there’s only so long they can wait………….. it just seems to be going on and on. Do they not realise we can’t move on until certain decisions have been made …………….. and I have a very confused little man at home wondering what’s going on, wondering if his mummy has to stay in hospital or not and asking questions like “will you come home from hospital?”

I just wish someone could give us some answers because right now I really can’t understand why all of this is happening to us.

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Where Do I Start?

It’s a good question, one that I’m not sure of the answer to. I’ve not posted for a few days now and I may be quiet for a while longer, right now my head and my heart are feeling a little scattered, I’m hoping by writing it all down I can release some of the feelings I’m trying to keep on top of.

This month I discovered that I was pregnant and to say that it was a shock would be an understatement. As well as shock the news came with a huge bag of mixed emotions. On one hand very happy and excited that we could be welcoming a new addition to our family but on the other hand fear and dread. Those of you that have read my blog for a while will know that my hubby and I had 4 miscarriages before we welcomed J into our life. So once the shock had sunk in the next emotion felt was fear……………… fear of what might happen, fear of how we’ll cope if we lost another baby, fear of how we’d deal with J wondering what’s going on, (he can usually sense when Mummy is sad or if something is wrong), just plain old fear! Only for a brief moment did I start to think about how exciting and how wonderful it would be to welcome a brother or sister for J into our life, then the fear started to creep back into my head and my heart.

We were instructed to go for an early ultrasound due to my history and as we entered the door to the ultrasound room we wondered what the next 10 minutes would bring. The sonographer was chatty and very pleasant so we wondered if things were starting to look good but then we got “the look” and she told us that she was concerned and that we had to return in a couple of weeks for another scan. At that point we knew something was wrong but she had not explained her concerns so all we could do was cling to the small piece of hope that we had left.

All of that hope was taken away the following morning……………… my doctor rang me to explain that he had the results of the ultrasound and it didn’t look good, (I’m sorry but this is pretty hard to write and I simply can’t and don’t want to go into details). He told me I had to have more blood tests and return to see him after 2 working days. After returning to see him he told us that the first results had not come back as he had expected and I would have to repeat the tests.  Today those results came back and the doctor told us the bad news. Tomorrow I would have to go see the specialists at the hospital because I was indeed going to miscarry. I can’t put into words how I felt, how I feel. It was an incredibly devastating blow. All of the feelings felt too many times before came flooding back tenfold and then on top of those feelings came the fear and worry of how we were going to cope and explain things to J. Each miscarriage has resulted in a hospital stay and a period of rest afterwards, I’ve never even spent one night away from him. How do you explain to any child, let alone a child with ASD that Mummy can’t put him to bed or come to him in the night when he yells out because I have a poorly tummy and have to go to hospital, how do we explain that without creating huge anxieties. Then more devastation swept over me when the realisation hit me, not only is all of this happening but it’s happening around J’s birthday, I can’t ruin his birthday he’s so incredibly excited, how could I do that to him?!?!

I’m very lucky and have made some wonderful friends here in Oz. Friends who for the past week or so have offered help, support and understanding, but most importantly have cared. Thankyou to you lovely ladies, you know who you are xx

I’m sorry if I’ve “gone on abit” but I don’t know how else to get some of these feelings out, writing is a powerful tool in trying to help me understand and come to terms with everything that’s happening at the moment. x

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