A Shift In My Thinking

Just recently I have had a shift in my thinking when it comes to my son who is now 9; I think of him as a human being.

I know that might sound really strange, however bear with me and I shall explain.

When my Son was 18 months old he was diagnosed with VCFS and when he was about 5 he was diagnosed with having a moderate intellectual disability. When we were met with these diagnoses it was naturally heart breaking and yes of course I still saw him as a human being. It’s when you live through the reality that is presented before you it is only natural to be influenced by such things and for your mind to just cope with the situation.

Many decisions that we have made on his behalf have been influenced by his challenges and rightfully so. Many of the dreams that we had for him were either squashed or adjusted accordingly.

Fast forward to now and so many things have changed and we need to catch up.

Where did it start?

Back in June there was an opportunity for my son to be prayed for by Chris Gore.

Who’s he?

He’s some dude who has a healing ministry and he came to Shellharbour and invited all those with kids who have special needs to be prayed for. If this was a year earlier I would have said bugger off but somehow I was open so on the Saturday night an hour before the night session my son and a heap of other kids got some prayer. It was really special. The ministry team were polite and asked the kids permission to pray for them. It was a special time.

I did notice some little changes in him and have been rejoicing and thanking God for all the milestones. What having prayer meant for me, was my eyes for Zach’s future was immediately about hope  instead of  scary and uncertain.

So life went on and in the last term at school he started to struggle and was emotional everyday. It has been troubling and the teachers have been concerned for him as previously he was a happy child. Just prior to all this emotional stuff at school I had a dream that he was at a beach on a surf board. I witnessed him being pummelled by the waves and at first I freaked out but when I looked at him I could see that he was enjoying himself. I knew by this dream that he was going to be okay.

Last month we had a  Worship Mob at our church. During that time my son began to cry at a particular song (which is not unusual at all). I nearly did my normal “roll my internal eyes and get annoyed” however, I looked at him and instead of seeing him as a disabled child having a melt down I saw him as a human being touched by God through the music.

It was an epiphany!!!

I took him to the foyer and let him have a cry in my arms. I told him it’s okay to be sad and just let the tears out as he said that he didn’t want the sad feelings. After some time he asked me why his friends don’t like him any more and then there was another bout of sobbing.  After he had calmed down he then became really happy and I think it was due to him being validated and not told to calm down.

Ever since that moment there has been a shift in my thinking. It reminded me of those optical illusion pictures that has two images. For years I have been seeing the one image but now I see the other.

optical

Just recently we took him to a psychologist and I was greatly encouraged by her words. she encouraged us to get him retested, get him into drama and provide more challenges for him. This holiday he has been going to his usual out of school program and he has been hanging out with mainstream kids and has no emotional problems.

I am starting to see his future in a different light, my eyes are looking up and I think he’s going to be okay. It’s time to focus on the other image that is in the picture.

 

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I Built A Fence and Fired the Neurons

The most strangest thing has happened to me in the last week and I am loving it. I have become organised, have been cooking meals again and have felt like I have come out of some kind of hazy fog.

What happened?

I built a fence. Yes, a fence and admittedly not the most stable of fences but it has done the job which needed to be done.

I want to build and extend the garden but because we have lovely chickens, this is impossible without some kind of fence or enclosure of some sort.

Last week I decided it was time to take charge, so I armed myself with a hammer, bits of wood, bamboo and left over chicken wire and I built a fence.

I felt powerful and free and since then so many things are just falling into place. At our coffee carers today it was suggested that I have fired of some neurons. I’m no scientist but let’s go with that hey!!!

Another nice thing that I’ve noticed is how much more my son wants to interact with the chickens instead of just heading for his iPad or computer.

He’s been calling him self the white chicken.

The thing that has also been pleasing me is, that I feel like I am living the dream.I want to be that person who is resourceful and doesn’t waste. I not only want to live within my means but live in the abundance that has been promised to me through Jesus Christ.

I don’t need a lot to be happy. I just need to be empowered to do the things that matter and walk in it. And I must add, how nice is it to have the fog clearing away.

 

The 22Q Adventure

When my son was 18 months old we were introduced to VCFS aka 22Q.dil.11. Now that was a big shock!!!! He was born with a soft cleft palate that was repaired at 6 months and a heart murmur was detected. Never would I have thought that there would be anything else to come up and bite us in the bum. Ouch!!! What the heck is VCFS????? 

He is now eight and life had been an unexpected adventure. These are some of the highlights

Orr look at him receiving an award when he was in kindergarten

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Oh look, this is a painting that I did in response to being thrust into the VCFS journey 

zac

Awww look at him hugging the washing machine.

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Such a sweet photo of my son and his Grandma behind him….notice how he is reaching his hand behind him so that he can have Grandma hold his hand.

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I just love this picture

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Us in the paper creating awareness

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Looking quite dashing in his specs

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Here he is picking up all of the cigarette butts from the ground. It became an obsession.

Getting rather excited with the fireworks set up!!!

Cheeky face

Too exciting…a train trip!!!!

Arh, the happiness……army clothes, a toy grenade and a trip on the elevator.

Life is good for a child with Q22

I have written a lot about VCFS and if you would like to read more of our journey here is the link 

 

Gandalf

It turns out that one of the four chicks that we bought at the end of last year is a rooster. Gandalf was starting to make some funny noises similar to the sound of a rooky rooster. My husband was not happy and neither was my son

Gandalf is not a rooster, Gandalf is a female chicken- My son

We had explained to our son that we can not have a rooster in the middle of suburbia and he had many tears trying to come to terms with it.

One of our friends kindly offered to help us deal with Gandalf and I’m very grateful that she suggested and offered one of her hens to replace our rooster. As soon as we told Zachy about the new hen, he immediately cheered up and named the new chook Tenor.

So today our friend who writes Just like my Nan made came to our place and turned our rooster into something that we can now bake. She also  arrived with our beautiful new hen called Tenor.

Glasses

My son has a great teacher called Ally Campbell. 

In his eight years of life he has never, until recently had a successful eye test. Admittedly this has made me feel guilty, as I knew there could be a chance of him having eye problems given he has VCFS.

For the past couple of years life has been very overwhelming and unfortunately a quick trip to the optometrist is not that simple for us. This is where Zachy’s teacher comes into the picture and I am so grateful for her going the extra mile for our family.

Mrs Campbell, found an appropriate optometrist, made the appointment, created a social story, viewed YouTube footage and then came with us to the appointment. As a result my Son was relaxed and even excited to have his eyes tested and we found out that indeed, he needed glasses.

Since he’s been wearing them a whole new world has opened up to him, he looks at people’s faces and is engaging in more conversation, he’s excited when he see’s others wearing glasses, his world has opened up to him and I am so happy for him.

So all thanks to his awesome teacher for making this happen….thank you thank you thank you.

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What a Day

Today I decided to take the morning easy, as for the past three days were a bit strenuous and I needed a bit of a rest. I watered my garden, did some reading and cooked a gourmet breakfast courtesy of the Community Garden.

However my happy feelings turned to anxiety in the lead up to my job search network appointment. Then it was tears…boo hooo.

Feelings of being overwhelmed just flooded over me, or dumped on me. I cried because my son needs his eyes checked, he needs another sleep study, I can’t get formal respite, he needs to go the cleft palate clinic, he has a limited diet, he’s not disabled enough for me to get carers payment, blah blah blah blah.

When I went in for my appointment I burst into tears. The young lady was very good and encouraged me to get a Doctors certificate and sent me up the Centerlink to chat with the case coordination peeps! By then I was feeling good again as I was able to obtain more contacts that could possibly help me.

I then went and had coffee and the girl at Gloria Jeans asked me how my day was and I explained my day to her. There was a new chap working there and he just happened to work for a disability service provider and willingly gave me yet another contact for me. I then went to the bank and the lady told me that if I opened a savings account, the bank will donate $10 to start it off.

Lets just say the day got better and better and I’m feeling the hope again. It’s like God was saying “It’s all going to be okay”.

And I shall Swan About!!!

I have come to the conclusion FINALLY, that being a mum is a full-time job and having a child with special needs is overtime!!!

I am not being a victim here by the way, I am just  finally acknowledging something that should have been acknowledged long ago. My life is full on and I can’t do everything therefore if swanning about in a kaftan in my backyard like some queen bee makes me feel happy then I’m going to do it guilt free!!

From a worldly point of view I am unemployed but in reality that’s just not true. Worldly expectations I think, can be very damaging if you allow the pressure of life to way you down.

Worldly expectations: YOU SUCK

  • You suck the life out of living
  • You suck the dreams out of people
  • you suck energy out of the strongest
  • you suck the creativity out of the artist
  • you just suck you meanie!!

Who do you think you are? I am living the best life I can and my expectations come from God anyway, which are soooooo  much easier, so worldly standards and point of view; let me describe what I am doing right now,

  • I am giving you the bird when I decide to swan about
  • I am giving you the bird when I decide to make a teepee in the garden
  • I am giving you the bird when I allow my child with a disability play with his ipad for as long as he wants to
  • I am giving you the bird when I don’t care about your stupid silly rules
  • I am giving you the bird when I decide to do what matters instead of living up to the unobtainable.

It may sound as though I am angry but I’m not. I am just deciding to do what really matters and I will now choose to put my love and energies into the most important people in my life; my family. Those are the people who need me to be strong, energised and happy, therefore I shall swan about feeling sexy and when I am happy my family will be happy.

That is all. Have a good day my friends.

Basking in the Sun

Today I basked in the sun.

It’s not as poetic as it sounds as I locked myself outside and had no choice. Even though the southern hemisphere is currently doing winter, it was such a splendid day and the sun shone with the warmth of spring.

The most remarkable thing about the title of this post is that since my mum passed away I have not been able to say basking in the sun without some heartache involved. The day my mum passed away I was basking in the sun.

It was a cold but sunny day and we were concerned about her all day. My husband went and picked up a sample that I then took to the doctors on mum’s behalf. My husband seemed worried that day so we kept calling her to make sure that she was fine. I was going to pop in the arvo to check on her and while I waited I sat outside to bask in the sun.

My house was freezing and the sunshine warmed me but my soul but anxious as I was worried that my mum’s time might be over soon. After some time I walked over to mum’s house and let myself in as I had a key. I found her asleep and I asked her if she wanted a glass of water as she looked a bit funny. I could not arouse her so it was time to call an ambulance and the reality of my mum’s mortality was realised.

To me, the passing of mum was not the most traumatic thing of the death but its aftermath. I had made my peace with her, God, death and myself. Two years prior to her death mum let me pray for her and in that moment I introduced her to Jesus. In the last two years of her life she had quality in spite of having a debilitating lung disease. The hub of my relationship with her was sweet, therefore her passing was okay with me.

What was traumatic was everyone else’s grief. I seriously could not cope with it and just wanted to run away. One day I was so distraught that I walked through our local shopping centre like a zombie, sat at the bus stop and considered getting on a bus and taking off. Where was I going to go? Anywhere, away, far far away!!!!

Today the pain has eased and I again can bask in the sun without the accusation of false guilt. I did not know that when I was basking in the sun that my mum was leaving us. Who could have known that was to be the day??

Good bye mum and while I wait till we meet again I shall bask in the sun guilt free. I shall be full of happy memories of the life that you lived and be ever thankful that God let me be your daughter. In the meantime I have a son who needs me to be happy and teach him the great things you taught me, therefore basking in the SON is a necessity!