Thursday, 20 December 2012

Blog 57 - It's Christmas Time

I love the real reason for Christmas - the birth of Jesus. I have my nativity scene out on display all year round - Jesus is at the centre of my faith. And I hang on to that when I am bombarded with all the secular and materialistic messages that come through the tv everyday telling you to spend, spend, spend up big to have the perfect Christmas. Gifts, gifts, gifts, food, food, food. I don't want Christmas to put my family into chronic debt so I find that I have to try to tune out to this bombardment though at times it is hard to do so. Who wouldn't want to have a $1000 diamond ring under the Christmas tree or to eat a turducken for Christmas lunch?!

Christmas can be depressing. Lack of money and missing passed on family members makes it a difficult time of year. This year I have made a concerted effort to focus my mind on what I have, not what I haven't got.

My joy this Christmas season has come to me by....

Watching the children put up the Christmas tree, singing and twirling and covering themselves in tinsel, choosing which ornaments to put on the tree and looking at the special ones with their names on them.
Visiting homes lit up with thousands of lights and colours which paint their faces with magical wonderment.
Seeing the children participating in our church's Christmas Carols concert as angels.
Watching Jessica's face light up when she sees Santa Claus.
Listening to them counting down the days with growing excitement.... these simple things bring great joy and a smile to my face. No amount of money can buy these heart gifts.

Buying the Gifts

As I've already said, we don't have a lot of money. We basically live from pay to pay. With me working part-time and Joe being the carer, taking the children to all their freequent hospital appointments and Jess to her weekly therapies, means we do not earn much. But we do have plenty of love. Christmas is hard...and I commiserate with all other people on limited incomes.
Before children it was fantastic to be able to buy lots of presents and spend our money on frivolous things..but not now. It has become...a limit spent on each child's gifts, re-gifting for relatives and friends, buying things on sale, making things, and a semi-bare pantry and fridge.

The Children's Gifts
This year Melissa and Nick have been very well prepared with their Christmas lists. They first wrote their letter to Santa, which were posted in our local mailbox. Next they meticulously went through the toy catalogues which are put in our letter box, choosing what they want. (They get a present from Santa and some presents from us).
A list was devised, numbered in the order of their favourites, with prices and the stores they were at! They were told that they would not get everything on their lists and if we couldn't get their requests we would buy them gift cards so they could buy something of their own choice. I was actually quite impressed by their lists as it made it very easy for us to work out equal spending and we didn't have to go store to store hunting for their requests. I am not a window shopper or a browser - I shop like a man (sorry if I offend) - I go straight to the store and buy the item.

I had planned to buy the kids' presents with cash I had saved over time but with a few bills lately to pay I had dug into that jar... which meant we didn't quite have enough, so I was looking at using the dreaded credit card. But my God does supply my needs as it is written in the Bible, as a lovely angel delivered some money to us that day - perfect amount and perfect timing.

Jess on the other hand has no concept of Christmas presents. She adores Santa - but he MUST be called Santa Claus! Jess gets so excited when she sees Santa in person or on tv. She doesn't have a long list of desired toys - infact she has no list. She has not been hooked into this world's materialistic drive. She has named her baby doll Jesus and has been carrying her doll around. Her heart is in the right place. Last year Jess was happy with the first present she opened - she didn't want to open any others and I am guessing this year won't be too different. She has a lot to teach the rest of us.

4 sleeps till Christmas

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Blog 56 - Tears of Joy for Jessica

Jessica has just finished her first year at mainstream school, called Prep here in Queensland. Last year we deliberated and deliberated and mulled over and stressed over what to do with her - would we put her in the special school, in the mainstream school or a bit of both. Sitting on the fence seemed the safest thing to do and we put her in both schools to begin with. By the second week Jess had told us by her behaviour that she did not want to go to the special school (school refusal big time!), so we put her full-time in the mainstream setting, praying that she would be ok.
She was more than ok. The other children in her class adored her and fussed over her, her speech developed, and she understood and participated appropriately in the school setting. The only real problems were that she would run off (the rest of the class were also very good at keeping on eye on this as well) and she would not get out of the sand pit or playground. Also towards the end of the year she would avoid tasks she thought were too hard. These behaviours meant some management strategies e.g. locked doors, counting to allow her processing time. and visual signs for Jess. Kindness but also rules with consequences/rewards were needed. She understood time out and didn't like to go there! Academically she was at the bottom of the class with another child, so at least she was not alone.
Jess was verified as being intellectually impaired which meant she would be able to receive extra help.
A few weeks ago we went to see her perform in her end of year school concert. She amazed everyone with her performance - she came right to the front, and knew all the words and actions.
Tears clouded my eyes - 5 years of pent up emotions came to the fore. My little girl who I had all those fears about when she was diagnosed, was just like the rest of the class....she was just like a regular child.
Here is the youtube video for you to see. I am a very proud mummy!

http://www.youtube.com/watch?v=1zh5wU2MpOE

Jess is awesome.

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Blog 55 - Welcome to Holland - Dealing with the News of Having a Disabled Child

After Jessica was born and we found out that she had Down syndrome, I went into a period of depression and mourning. She was not the baby that I was expecting and I did not know what the future held for her and for us as a family. We were expecting her to either have a mild form of Crouzons or no syndrome at all. It was a huge shock to know that she had Down syndrome instead (and thankfully no Crouzons with it). But I did not know anything about Downs, nor did I know anyone with Downs, and my world collapsed. So many irrational things would go through my mind...fear of the unknown quickly took over and devoured me.

I was sent this story and it encaptulates exactly how I was feeling...

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. Emily Perl Kingsley 1987

I am now enjoying the uniqueness of Holland!

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Saturday, 1 December 2012

Blog 54 - Count Your Blessings

I had a pity party this week. Yes I did. It could have been hormones or all the fabulous things people were doing and uploading to facebook....who knows but I was feeling sorry for myself.

How sucky was my life?

How unfair that myself and my children were born with this craniofacial syndrome and that our Summer holidays would be dictated by Nick's halo. Basically indoor quiet activities only.
How unfair was it that my youngest daughter had Down syndrome, and although she is high functioning and gorgeous to boot, her love of running off, also dictates and limits what activities we can do. There will be no going to activities where there is a possibility of us losing her.
How unfair was it that my visual impairment stops me from driving and I can't go and do the things that I would like to.
How unfair that my husband's stuffed wrist stops him from lifting things..... 'thorns in the flesh'..... all make our life sucky.

But then the next day after I was having my pity party, I found out that my friend's husband had committed suicide. Woo - I kicked myself up the butt and changed my attitude very quickly.

My cup is half-full...it is not half-empty.

My life though not as I would have wanted could be far worse.

I will choose to focus on my blessings, not on my deficits.

My children are happy....my children are loved and cared for....they are brave.....they are cherished....I can see.....I am happy..... my husband can carry light things.....he is a great 'taxi' driver... we have a happy marriage...we do not have as much money as we would like but we can pay our bills...we have a roof over our head and food in our tummies.

Life is good.

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Blog 53 - Nick's Lefort III Advancement continued

Once home I continued to turn Nick's screws, one turn, morning and night. This turning moved the mid-face bones forward 1mm per day...this tricks the body into making new bone as it tries to heal itself.

Nick went back to the hospital twice a week for checkups for the next few weeks. The process of moving his bones and getting them into the required positions ended up being more complicated than Melissa's was. Melissa's bones came start out forward. Nick's were moved forward but also moved downwards. The eyesockets were moved down to allow for the eyeballs to sit in the eyesockets and his upper jaw was moved vertically down to align his bite as his back teeth were touching first which was not good. This meant that the bar was moved down, and the mechanisms on the bar were moved down as well. All of this hurt of course and Nick needed a lot of emotional support to get through it.

Nick had a final xray which determined that it was time to stop turning the screws. His cheekbones had actually been over-distracted (come too far forward) so the plastic surgeon loosened the cheekbone screws with the hope that the bones would retract a bit.

It was hard to tell exactly how far forward Nick's bones had been advanced due to the manipulation, but approximately 22mm - close to an inch.

Nick has slowly been changing back to his happy self. The pain is now basically gone. When I wipe his face to clean up the gunk that weeps from his eyes, I have to be gentle as he says his bones hurt when I do it.

We have to watch his wounds for infection.

Nick 7 weeks post-surgery

He mainly spends his time at home. After visiting his class the Monday after he got home... and seeing their shocked reaction... he hasn't wanted to go back. We have encouraged him to go to school as a visitor to various end-of-school-year events so he is becoming less of a spectacle.

Today he was chosen by our Pastor to light the first advent candle....for 'Hope'. He declined to begin with but with encouragement from me and Melissa he agreed.

At the end of church he said he wanted to be in the church concert on stage and the community Christmas Carols - I guess having everyone clap his bravery made him even more brave!

We go back to see the plastic surgeon on December 14 for a progress report. Nick will have the halo on until January/February. It is going to be a long Summer holiday.

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Blog 52 - Nick's Lefort III Advancement Op continued

Nick stayed in PICU for two days. He was well enough to go to the ward the next day but there were no beds so he stayed in PICU another night which I was happy about because that meant one-on-one nursing care.

Again I slept in a recliner beside the bed. I needed to be there incase he woke up...which he did...and though his eyes were swollen shut and he could not see me...he knew I was there.

At 4.30am in the morning I was woken up by the nurse and shunted out to the parent lounge to sleep on the couch as a baby was coming into PICU and they wanted to give my recliner to the mother. I snoozed for an hour and then went back to be with Nick.

Back in the ward Nick coped as best as he could. He was on background morphine and a morphine bolis...but after a few days he hardly used the bolis. It wasn't long and he was only on panadol. Nick amazed me with his high pain tolerance.

Because his bone was just sitting in the muscles he had to eat pureed food, soft or liquids. Nick could not master a straw so I would syringe the milk into his mouth.

On the Monday after the operation the wires were attached from his mouth plate to the black vertical rod. This really hurt Nick and he had a panic attack. We found out the following Friday after Nick had an xray that the plastics registrar had accidentally moved the bones forward when attaching the wires - he was not supposed to do this... No wonder Nick was crying and saying it hurt!

I started turning the screws (cheekbones and upper jaw) on Tuesday, a week after the operation and we started the advancement process. Nick started to get bouts of anxiety and OT became involved. Nick was not eager to talk to the OT Carly, but I was able to talk to him after she had left each day. Nick was told by the plastics registrar that once we start turning the screws we could not stop.

Nick got very low and nothing could cheer him. We took him to Southbank for some time out which did seem to help.

Before he could go home Nick needed to see the plastic surgeon and the dentist. The dentist noticed that Nick's upper jaw was already in front of his bottom jaw - it was already where it should be! Nick was sent for an xray. It showed that the plastics registrar had moved his top jaw forward accidentally when he had attached the wires to the mouth plate, then I had wound it forward a further 4mm. We were not to turn the lower screws from then on...just the cheekbone screws.

On Day 10 post-surgery we took him home. Going home did lift his spirits.

At home

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Blog 51 - Op #8 for Nick - 8 years - Lefort III Advancement - October 2012

We were at the hospital at 6.45am. Nick had fasted. We were fortunate that Nick was first on the list so we would not have the long wait that we had with Melissa. There was a PICU bed available for him.

We saw the anaesthetist and tried to act calm to keep Nick calm.

It wasn't long and we were called and went to wait in the waiting room outside of the theatre. We knew the nurse there from all the previous operations so we had a friendly chat and catch-up with her. Other parents who were there waiting with their littlies stared at us.

Nick wanted me to go into the theatre room with him so I donned the gown and hat.

It wasn't long - about 8.30am when the nurse came out through the theatre doors to collect Nick.

He climbed up onto the table and breathed in the gas...putting him to sleep. I prayed a silent prayer over him for God to keep him safe, and I kissed him....and left.

You know it is hard leaving your child on that table not knowing what is going to happen...if there will be complications..leaving your child in other people's hands. Yes they are trained professionals but things happen.

Joe and I decided that we would do what we always do when there is going to be a long operation...we would walk to Southbank...so we did in silence, holding hands...gathering strength from each other.

It was hot and there was a nice river breeze so we decided to go and find a park bench on the river walk to sit on. When we sat down Joe saw written in chalk on the arm, 'God loves you...Jesus is Lord.' We felt this was a sign from God telling us that He was there in that operating table looking over Nick and the surgeons. There were also 2 seagulls who I named Fred and Fredda who kept us company. I always think of my dad who passed away in 2003 when I see birds as he liked birds and when my Mum was having a colonoscopy after Dad's passing, there was a bird tapping on her hospital window. I felt comforted to think that Dad was there too.

It was about 4pm when we finally got to see Nick again. There had been complications during the operation. His cheekbones were as thin as paper and had fractured so titanium plates were attached to them. These titanium plates were used also to help secure the wires into the cheekbones (which we didn't know he was having as Melissa didn't have them). He also had a lot of blood loss and needed a lot of blood.

We eventually saw him in PICU. I was able to stay the night beside the bed in a recliner as there were no parent beds available. He woke up during the night and had vomiting. He nose bled continuously from the bleed.

The next day his eyes started to close. We would not see them open for a few more days.

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