A Mother hen has so much to say
A Mother hen has so much to say
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
Oh look, this is a painting that I did in response to being thrust into the VCFS journey
Awww look at him hugging the washing machine.
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.
I just love this picture
Us in the paper creating awareness
Looking quite dashing in his specs
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!!!
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
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
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,
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.
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!
Today I took this picture of myself
Today I am happy
Today I feel relieved
Today I enjoyed life and look forward to dreaming about my future
Today I could hear the birds chirping
Today is my mum’s birthday and although I miss her I am not sad
Today I reflect on how good a mum she was and how much I learnt
Today I recognise that my mood affects my child’s mood
Today I decide to just be
Today I thank God that I am known
Today I heard the most funny story that even now I’m still peeing my pants thinking about it.
Every Friday I go to a coffee support group with other mum’s who have a child with a disability. Today as we were chatting, conversation steered toward the topic of loved ones who have requested that their remains be scattered in the ocean. During this interesting exchange, Marge (one of the mum’s) told us of a story that was told to her.
She said that she had met a bloke who told her that when his mum passed away he did as she requested, through her body in the ocean. Marg was assuming like most people that it was her ashes, however, he continued by saying;
After mum had passed away in the hospital I took her body, put her in a wheel chair and took her to my car. I then drove her to the harbour and asked someone who owns a boat if he would take me out to the ocean so that I could throw her body out to sea. When we were far enough out to sea I rolled her body over the side of the boat.
Needless to say he got into trouble and couldn’t understand all of the who-ha!!!!!
Quite a number of years ago I was part of a writer’s group held at a lady’s house who had a passion for people to pen their memoirs. Every week it would cost $11 and we would sit around a table with yummy snacks and commence with our writing exercises This was such a great time in my life as I was exploring another creative expression that I could add to my artistic repertoire.
I attended this group for a number of years when after some time, one of the other writers seemed to want to get out her knives an attack me every week. It came to a head one week as I was reading out a piece of my work, when she went on the war path claiming that she felt sorry for me because I was too happy!!! She just kept pouring out the wrath with a condescending attitude that left me defending my own painful experiences in life until I burst into tears and said “Why are you picking on me? Your not the only person who has experienced pain in their life???”
This woman was suffering from the grief of losing her mother to Alzheimer’s disease and couldn’t seem to see past her own pain. It had tainted her view on everything that seemed to give her permission to attack anyone who had joy in their life.
Why am I thinking of this woman now after all this time?
I don’t want to become like her and think that I have a monopoly on pain.
Right now I am in a place where any advice that I receive just gets thrown back at the person because I’m done with advice. I say F you constantly in my head to anybody who annoys me and have been having public melt downs quite frequently. I am heavy with the grief of losing my mum and I am laden with the ongoing grief of having a child with a disability.
I am in battle with my soul as I do not want to feel sorry for myself and have been quick to embrace the life I have before me, yet I am tired of dealing with it. I have been finding myself feeling sadness that my child has not developed at the pace of his peers. That when I went to playgroup he’d have melt downs, that he hates the Wiggles, that he’d rather watch the NEWS then be entertained by Playschool.
I have been quick to be positive about my life and I’ve always been that person who will be okay no matter what happens in my life but right now I am suffocating in pain and it seems like nobody gets it. I do not want to be overcome with bitterness like that women from my past, I don’t want to give myself permission to me rude to my fellow human kind. and go on the attack.
I want to be free and forgive. I want to have Grace with others. I want more of The Father’s love. I want more of Heaven’s plan. I want to swim in the river of life. I want to be healed.
I am angry when control freaks get their way
I am angry when good ties get severed because of some stupid rule
I am angry when one person can influence everyone into thinking that love, kindness and compassion is a bad thing
I am angry when I feel powerless
I am angry that there are those who think they know
I am angry that I have to explain that my normal looking child has a disability and his behaviour is not due to my bad parenting style.(just shut the f$#% up you experts!!!)
I am angry when I am underestimated
I am angry when I see injustice
I am angry when stupid rules are put into place over basic human needs
I am angry that my mum died
I am angry that I have less family members alive today
I am angry when people don’t get it, even when my articulation has been made clear (clearly not for some arrogant, up them self, pious individuals)
I am angry when I am patronized
I am angry that I have tried my best to fit in
I am angry when I get advice that makes me feel worse than I already feel
I am angry when I am not heard
I am angry that sickness took my mum
I am angry that I always need a strategy in dealing with my son’s behaviours
I am angry when those strategies don’t work any more and I have nothing left
I am angry when breast-feeding nazi’s put guilt on those who bottle feed their baby (for goodness, sake some of us get no milk or our baby cant suck because they have a soft cleft palate)
I am angry and I need help!!!
Just after my mum passed away more than three years ago, I remember feeling so down that I thought that I could never feel happiness again ever. One night, when in my sadness a cheesy romantic movie came on the telly that would normally have me change the channel in a flash. When the introductory music was playing I noticed how I suddenly stopped feeling sad so I thought “Why not, I’ll give it a go”.
I watched the movie and was grateful for the escapism as it was like ointment for my wounded soul. I then realised why such movies are so popular and gained a respect for the once mocked genre. After that I began to wonder what is my escapism??
Well after thinking about it for a short second Kath and Kim came to mind “look at moi look at moi look at moi Kimmy Look at moi” For some reason they make me laugh and I feel that all is well with the world when I watch them. So I watched them and enjoyed my bit of escapism for a while.
I’m glad to see that they have a new movie out and here’s the trailer
I wonder if you have ever thought about your escapism and what it is? To be honest before that moment I really never gave it much thought.
Today I went to the Medical Centre.
I have very good blood pressure!
My Mum always had very good blood pressure even when she was acutely ill with Pulmonary Fibrosis !
I don’t have that, but I have swollen ankles that I must get checked out.
But at least my blood pressure is good!