Crust be gone and ummm, maybe call it LOVE?!

A 'Sarah Bean' got a certain birthday present and was particularly excited about the cornflour like powder that was a result of a Ped Egg! Since her birthday I had stored the pleasure she found in it and also the amazingly smooth feet that were a result, and I requested it as my one gift (I will be getting a tattoo as a combined Birthday/Christmas so am hanging out for that too).
Hmmm, yes Ped Egg!
I was intrigued to find out if my feet too produced a grotty cornflour, and yes they do! So gross, but you can't stop looking at it and swishing it about in the top part of the 'egg'. Ha! I love having smooth feet as we hardly wear shoes since being here!
I was so stoked that Mr P got me the gift I had asked for, one year he asked what I wanted, I said a dressing gown, I ended up getting a mug. Hmm. BTW I wasn't drinking tea or coffee at that time!
So, Ped egg = most awesome gift! :D


The other part of my pondering has to do with my young man.

I have been feeling a bit overwhelmed with a couple of things this week.
Have I done enough for his life to be rewarding, have a put enough effort in for him to grow as he needs to, have I given him the right foundation of skills.
I just know that parenting is hard, it is character building and to be honest having my son helped me realise an inner strength and wisdom that I never knew that I had. Every day, he tests my patience, my negotiating skills, my sense of humour, my love, all my fears, and in reality so does H(not 1 any more!)2. I think the biggest advantage is knowing how to be truely humble and thankful and I thank my children every day! I have now been on this journey for over 6 years, from conception that is. I am constantly in awe of the lesson's I have learnt and I am forever evolving. A life of not learning wouldn't be as rewarding as what I am living. I constantly saying that having a child with Down syndrome isn't bad, it is just different. When we are on our parenting journey it has it's up's and down's and no two families are on the same path. It then becomes sad for me that my son is questioned and just not able to 'be'. I feel that I am constantly having to step up and advocate for him. I will always be an advocate, I just wish there wasn't such ignorance and stereotyping attached to a disability that is constantly pushing the boundaries and exceeding the box that was once used to group my child.

One day ignorances won't be so judgmental and we can all get on with living. Here's hoping anyway.

Turn, Turn, Turn

http://www.youtube.com/watch?v=DejUPN4SksU

I am feeling a change coming. I know that during this journey I am forever discovering who I am as a person. It has been a time of questioning, changing, crying, growing, pain and self doubt.

I have embarked an a mission of self discovery by doing a creative course, The Artist's Way. It is designed to make you look at blockages you may have in your creative mind. I am finding that it strips you back to your bare minimum and you are to look at yourself. It has challenged me immensely and I have only been doing it for a week or so. Ha!
It is going to be 3 months of recreating how I look at myself, how I think to myself and how I live everyday! I want to be able to create with my children, I want them to be energised by our creativeness, I am also hoping to break negative insecurities I have so that my children don't have to live in that shadow.
It is a big job, and I am sure that this one course isn't going to wipe my baggage clean, I am just glad I have the chance to do it and learn.
This life is so precious to me, my children are priceless and I want to get it right for them. I am sure I won't get it perfect every time, I just want to know that I am doing and continually learning.

My time has come to turn away from the negatives my censor(mind) speaks to me, I am breaking the cycle that is so embedded in the females of my family and I am going to stand strong in the new and fresh me I find!

I am doing it for me



and them

Hooray

I am going to go to craft lessons at the local sewing shop! Can't wait!

Nature and all it's Beauty

Our Beach



From our back gate.

As I walked along the shore today I pondered. So many thoughts, so little clarity. I watched the waves come and go and felt that it is very similar in our life, we do the same thing so often that you then forget to see how wonderful it is to be doing it. There may be times when an obstacle arrives but just as the wave does, you find a way to move it, be it going around, under or over, you find a way to deal with it and move on. Sometimes it keeps coming back in every rotation of the wave, so you have to find another way. It isn't easy and sometimes strength wavers, however another wave may come to strengthen you again.
A bit blabby, sorry, I guess I am saying that even though some things seem hard at the time, they pass, they may reappear but you have it babe, you can do it again. Ask for help sometimes, admit that you haven't got all the bases covered and it is OK if the facade cracks for at the end of the day you are only human.

I have been reading a book on how to teach children with Down Syndrome to read, so many 'that is so true' moments for me. One quote that stood out for me was 'I did the best I could, with who I was, with what I knew at the time!' Forgive yourself for any mistakes that you think you may have made in the past. Forgive others for being less then perfect as well. Put your energy in today and tomorrow. You have another chance!
So often I run ahead of today or tomorrow, I also seep into the black parts of days gone. It isn't healthy at all, I miss so much of the wonder and beauty that today is filled with. I have now got this saying as a constant reminder to bring back the thinking and make it relevant to your current world.
So a note to myself, sometimes life can be messy yet there can be beauty in that too.

Funkness and all things overcast

Today is a blergh day. The weather is gloomy and I feel the same. Stupid weather adding to my funkness is so stink.



Yep that makes my funkness a little lighter! Bahaha He looks so seedy with that mo!

-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!-!

I would like people to meet me and not know that my child has a disability until they meet him and see his beautiful almond eyes looking so sparkly at them. I like us to be a normal family and not one that is constantly looking at how hard we have it. I like that my partner has always loved B and not seen him as anything but a normal child. I like that H doesn't see anything but a big brother in B. I like that we all love each other, warts (although we don't technically have any) and all.

Most of the people I have become friends with, through this journey, know that their children have additional needs and that they require extra attention and that it can be draining, however, overall they completely adore their children and what they have brought to their lives. They have grown more, loved more, cried more, been angry more and seen the beauty in the small things more. I love this about them and I love that they have also taught me how to see our life like this.

The way I want our life to be is totally about dealing with what we have. I don't always do it the right way and I do have a tantrum every now and then. I ask for my big break, for millions in my bank account, for smaller thighs, for well behaved children while trying to get the shopping done. For life to not have so many freaking hurdles. But in the last 5 years I have become good at jumping hurdles and knocking down the big bastard of a brick wall that stands in front of me. I try to move through the struggles and know that even though I may not have it right, I have people that love me anyway.

I do find it hard to understand when people don't have the same view as me, but that is about their journey, not mine and I have to try to remember that we all have different ways to deal with life and what we go through.

I am comfortable in my bubble, I like my bubble and how I view most things with in my bubble. I am always open to learning and expanding my bubble although it is a nice place to be most of the time.

So my funkness continues but I am glad of who I am and that I can see the world this way. It is a cushy place to be.

In other news, we move in a week. Eeek!

But we have this to look forward to



and this



These photos really don't give our new adventure the shininess that it deserves!!

The next step

I figure it is only right to add the next chapter in my motherhood journey, my little man H1.
I met his father about 4 months after B5 was born and we were solid friends. He and I maintained a great friendship for the next 3 years after a lot of relocating and distance. He was living in Perth, WA and came back to Brisbane for a holiday to celebrate his birthday. We spent a bit of time together having lunch and he looked after wee man while I went to soccer training. It was during this trip that he announced to me that he didn't want to live his life without us in it anymore. I was completely taken by surprise, I had never had someone profess their love for me and my little like that. We decided that we were going to give us a go. He went back to Perth after a week and we did the long distant thing for a while. He flew B and I over for a 2 week holiday which was absolutely fabulous and probably the most romantic token I have gotten. He decided that he was going to move back to Brisbane to give our relationship a proper go and by New Year we were together again.
H was a much wanted baby by Mr P and I was under the impression of if it happened I would be glad but if it didn't, I wouldn't mind too much. Well I was pregnant within the first month.

It was an incredibly stressful time as I hadn't realised that there was unresolved issues due to B's birth. I was so worried that my next child would have a disability and it affected me badly. I had a melt down at 27 weeks (I had a preterm labour scare with B at this time too) and decided that my head space was too messy and I wouldn't be able to birth him naturally. So I was booked in for an elective C section. The day arrived that was written on my admission note and with an air of anticipation and excited anxiousness we were prepared for surgery. Half an hour after the spinal block had been given I was hearing my little boy for the first time. He was checked over and was given the all clear. Oh how I cried. I cried for the diagnosis of my first born and I cried for the joy I felt that I had bought another life into this world. I was handed my beautifully fat pink healthy baby and he was keen to get sucking. Mr P took him for some Daddy, Son time in the recovery room and I soon joined them. He latched with very little effort and the relief was amazing. I had never breastfed a child before. It was bliss.
We were transferred back to the ward and Mr P went home for a sleep a while after we were settled. I lovingly gazed at my new baby while figuring out what his name should be. It was a beautiful time and I will always remember how my heart swelled to receive this precious being.
He was/is a beautiful baby and was incredibly chilled and went with the flow, loved to eat and was a great sleeper.


At 5 months old during a breastfeed he did a little funny episode. We called the ambulance because he went blue around his mouth. The ambulance came and he had returned to normal and I was told that I possibly could have had an air bubble. Ridiculous now I know but at the time it sounded plausible. The next day I had a meet up with some other mother's who have children with special needs. We were meeting to celebrate one of their birthday's. As we were sitting down to a coffee my little had another episode. A couple of the mother's recognised it as a seizure and I rang an ambulance and was transferred to the hospital an emotional mess. Not my perfect baby I kept repeating to myself. We were waiting in Emergency from 11 to 3 and nothing untoward had happened. We were seeing a doctor just before being discharged and low and behold he had another one. I am so thankful they got to see that one. We were rushed into recovery and there were heaps of nurses running everywhere and so many beeps and all of a sudden I was faint and nearly blacked out. It was such an emotionally draining time for both my partner and I. We spent the night in ICU and he was put on anti epileptic meds and the seizures ceased. He had an MRI and a lumbar puncture with no abnormal results. Although this time was incredibly tough to process he has only ever had another 2 seizures and is now being weaned from the drugs. I have my fingers firmly crossed that this will be the end of drama with Master H, well until teenage years at least. Ha

He has taught me that even though I might worry about everything, at the end of the day, I can change didally squat and what will be will be. You have to ride the currents, not try to dictate them. I am trying to let go of my controlling nature but it is resisting a little. I will get there though!

Reminiscing

I have been looking through my photo albums and I have been marveling in the change of my littles over the last couple of years


This is my gorgeous son B5 when he was 3 months old
This is him now


My other beautiful son, H1


and now


Ridiculous how fast time flies.

These past five years have had so many times growth and determination. I have become so many things, a mother, nurturer, fighter, carer, provider, learner, teacher, I have grieved and I have celebrated. I have had so much change it spins my head to process those years.

When I first found out I was pregnant with B5 I was 21 years old, I was in a rocky relationship and I was so far removed from who I used to be. It was a time of uncertainty and pain. I had an ultrasound at 7 weeks and knew that the life inside of me was mine and I was going to grow it and nurture this beautiful gift. I spent a fair chunk of my pregnancy uncertain of if I was bringing my baby into a family of 3 or just him and me.
Finally the day arrived that he was going to arrive. I had very little fluid around him and apparently my placenta had started to calcify. My baby was a little small but that wasn't too odd I was told. He was riding high and I was told that with his heart rate continually decelerating he was at a great risk and wasn't gong to be able to be born naturally. I was taken to Theatre after 4 hours of labour and being only 2cm. I was given a spinal block and with my Mum waiting outside and partner beside me I gave birth to our son with the assistance of Theatre staff. I remember feeling slight tugging and then an almighty light feeling and then I was seeing his gorgeous pinky, slimy body flung over the sheet. I yelled out his name and had a little cry. I had done it, my first born was here. It felt like an eternity between that moment and hearing him cry. He was having a little issue with breathing and was given some oxygen. He was wrapped and finally I was able to meet my son. I was looking at him thinking, I wonder if this is how all newborns look. I was in love, utterly and completely. He had my heart forever. I was then told that they were taking him back to the Maternity ward and I asked my Partner and Mother to go with him. I was stitched up and taken to recovery. As I was wheeled out the doors I saw the Obstetrician and Paediatrician talking and the look on their faces looked as if someone had died. I was saying to myself, please not me, please not me... then the Paed walked over. My heart was lodged in my mouth. He asked me a question. "What do you know about Down Syndrome?"
How was I supposed to answer? I was shocked and silent.
He said that it could just be a look and Grandpa could walk in the door tomorrow and we will click our fingers and know that that is why he looks the way he does.
I drifted in and out of awareness and I can't recall everything. I asked to see my partner. I remember that while he was on his way a nurse was telling me that her aunt had Down Syndrome and she had practically raised her and her cousins.
After my partner came I don't recall much at all until the next day. I know that once I got back to my room I didn't put my little man down. All I knew was love, come what may, love was all I felt for him.
We were told that he would have chromosomal tests done but they would take 2 weeks to come back as we lived in a rural town. We spent those 2 weeks in a lot of denial, he just had bags under his eyes like his father. He was so amazingly gorgeous and perfect, surely he didn't have it. Both of us had no experience with people who have Down Syndrome, there was a girl in Primary School that was a couple of years younger and all I could remember is that she used to spit on everyone. So with our lack of knowledge we got to know our child and love him for who he was, not a diagnosis. I am so glad I had that time, it made me so appreciative of the gift I held in my arms.
We were told that we would have an appointment regardless of outcome because the hospital was unable to tell us results via the phone. We got the appointment time when bub was just over 2 weeks old. We heard our names being called and began to walk towards the door. My partner went in first and held the door for me, the doctor, before I had even entered the room said 'Well obviously he has it or we wouldn't be here.' I felt like I had been punched. He said that Early Intervention was the best option for these little ones and we should research our best option and go for it.
I am sitting here 5 years later still feeling my disappointment at this doctor for the way we were treated. We just needed some compassion and guidance, we needed to be referred, not told to research. It was 6 + weeks until we were able to get some assistance. I am so Thankful to the team when we did see them, without their help I wouldn't have been able to learn the things that I have.
When my little man was 3 months old my relationship with his father ended. He told me that it was over on the Wednesday, he was out of the house by the Friday. It was so hard. That Sunday was Mother's day, my very first Mother's day was spent as a newly single mother.
Ok enough self pity now, this is about growth not woe is me.
I am actually really Thankful that I was given the chance to be the best mother that I ever could be, so even though he was a total douche, I am so grateful that I spent 3 years growing my gorgeous boy all by myself.

So that is it, how my journey as a mother started, challenging, yes, but well worth every minute.