The Spidey Sense Twang!

I have to say, one thing that has come out of having a child with medically complex special needs is that it well and truly shattered my over re-activeness in parenting!

I don't think I've ever been really bad, I'm definitely not as bad as some... but now I think, at least when it comes to my 'normal' children, I tend to be pretty laid back.

"Really? My kid has a 40 degree fever? Are her toes still twitching? Then she's all good!"

I don't tend to over react a whole lot.

Yet, Nicola almost always sets my spidey sense twanging. I can't even say twinging because it is so much more than a little twinge, it is a great big resonating twang!

Take her most recent little game. She woke last weekend with a bit of a temperature. Nothing too frightening, gave her a bit of panadol and set her down to go about our day... and then it started.

Oh My God! She's vomitting!!

She probably has gastro.

She is really irritable, I wonder if that's something.

She's not sleeping properly. Maybe that's something?

Hang on! Why is she even vomiting? She can't vomit! She's had a fundo!

She's vomiting!

Maybe it's neurological?

She has a shunt, could it be blocked?

Does the shunt look squidgy? (yeah, real medical terms here!)

No, there's no squidginess.

She's vomiting and she has a fever.

She's undone the fundo.

But it presents as possibly neurological...

Hang on! She's undone the fundo!

That fundo was holding down a hernia!

If she's undone the fundo, where is her gut sitting? Does she need surgery for that?

Crap, she's vomitting again and she's screaming and hitting her head...

So surgery for the fundo and if she keeps going this way likely a hernia repair.

She probably needs surgery for the neuro stuff.

I can't see any obvious signs of damage to the shunt or blockage. Maybe it's completely malfunctioning!

Oh God! Should I phone the neuro surgeons and get them to start organizing tests?

I don't know...

Maybe I should phone the paeds?

No, it's a weekend, we have to deal with Emergency and they're useless.

Tomorrow is Monday, I'll hold off and see if we can wait til tomorrow and talk to her paeds.

Oh, never mind, there's the poosplosion! It's just gastro after all!

Mind you, this mental conversation takes place over many hours, but still, it kind of gives you a bit of an idea.

A week later, my spidey sense is still twanging, but for a whole range of different reasons... I've spent ages trying to figure out why I seem to have a permanent headache, I have blamed my children, my husband, too much chocolate, not enough chocolate, too much caffeine, not enough caffeine, heat, sunlight, and a million other things, but it seems that all along, it's just my own spidey sense twanging away in the recesses of my mind, making it's presence always known.

Now if I could just find a way to silence it!!!

Proud Mummy Moment!

This afternoon my 5 year old, Jessica, proved to me how exceptional she truly is.

I decided to get out and mow the back yard to try and keep the damn nut grass at bay. While I was out there, I told Jessica that she was in charge of the babies. She likes to get a bit of responsibility, it makes her feel important, and I like giving her the boost.

I was only outside for maybe about 40 minutes, if that, and I checked on them all several times. They were quite happy watching Dora on tv. But when I came back in after putting the mower away, I couldn't help but smile at the sight that greeted me.

Jessica had decided that Nicola was thirsty and wanted some water... so by herself, she went and got a cup of water, a syringe and a tube. She plugged the tube into Nicola's Mic-Key port, drew up a syringe full of water and started to give her sister water.

Nicola clearly wasn't in the least bit phased by it. I was so proud of Jessica for being so thoughtful and so kind and so considerate, but it didn't end there!

When Nicola signed that she was finished, there was still water in the cup, so Jessica decided that Alyssa was thirsty too!

Naturally, Alyssa was syringe fed too! :D

(Sorry about the dodgy photos! They were snapped on my phone!)

A Frequent Flying Tragic.

Since moving back to Townsville last April, I have done a lot of flying back and forth between Townsville and Brisbane for medical appointments. We have worked to move as much as we can back to our local hospital, but even though we have a tertiary grade hospital, it is still a regional hospital and there are many many specialists that we are missing here. So, we still fly... down and back, down and back, down and back...

You get my drift.

I have often joked that I am just about part of the furniture when it comes to the airport lounges in Brisbane and Townsville, but today it became startlingly apparent exactly how accurate that joke has become!

So, lets start the day of a Frequent Flying Tragic at 3.45am when I crawled out of bed, much to my disgust, in order to meet my 5am deadline for checking in. Finally get out of my front door at 4.50am to walk to the airport... a walk that usually only takes me just under 10 minutes if I take my time.

I had barely gotten on to the main road and a car pulled over asking me and a voice calls out asking me if Nicola and I would like a lift. It was a flight attendant that we often see on our flights. I politely declined and said that we would be fine, I was quite enjoying the walk. A second flight attendant pulled over and asked me about 2 minutes later.

We got to the airport, the security guard in the car park knew me by name and said good morning.

The staff on the check in desk knew my by name and knew Nicola's exact needs. They pulled me out of the queue and let me through straight away.

The security staff knew us both by name, knew to be mindful of Nicola's stoma and her button and knew that she doesn't like strangers and they had to be quick.

The flight attendants on the flight knew us, the captain knew us and the special assistance team knew us.

When we landed in Brisbane, the special assistance guys knew that it was us before we even got off the plane... How? They recognised Nicola's wheelchair.

I realised after I had left the airport that in many ways I have started to form pseudo friendships with these people. One of the special assistance guys in Brisbane, his wife is due to have a baby in 21 days. I have known since she was about 11 weeks. Every time I go down he tells me the latest updates... and I know that next time I go down he'll have a photo to show me.

By some stroke of luck I ended up with our 'regular' taxi driver, even without calling him to tell him we were flying in.

When we were through, I decided that rather than go shopping or wasting time in the city I would just hop back to the airport... the Customer Service Manager of the airline recognised me when I was lined up and pulled me out and was even nice enough to find me seats on an earlier flight so that I didn't have to sit around for another 6 hours in the airport waiting to return home.

They boarded us early again so we had time to settle Nicola before the rest of the passengers boarded.

And, that was when the real fun began!

Now, I suppose I really should stress that the next part of this tragic tale is definitely not normal fare.

We were given the wrong information... or, rather, we weren't advised of the gate change until they went looking for us to board us early. Our flight was changed to gate 20, I was waiting at gate 1 where they told me to be.

We do a mad dash through the airport and get out to the gate. They take us straight down and put us in our seats and take Nicola's wheelchair and stow it in the cargo hold.

They started to board other passengers... about a quarter of the way through, the airport sirens start to sound. The airport has been locked down for severe storm warnings. The planes can't fly. Everyone has to get OFF the plane and head back into the lounge to wait. Because they've taken Nicola's chair, we can't get off the plane, so we sit there, waiting.

The airport is locked down for about 30 minutes before they finally clear the severe weather warning and start boarding passengers again.

Finally, everyone gets boarded and then they announce that because the airport was locked down at 2pm, which is when the industrial action kicked in and all the baggage handlers went on strike, there was no one to load our luggage into the plane and we couldn't take off without the luggage.

Another 45 minutes later and they finally get things loaded up and we can depart, but by that point we have to compete for space on the runway and end up having to taxi to the furtherest runway and take off from there.

So the flight that was supposed to depart at 13.55 ended up departing at around 15.00.

By which point Nicola had been sitting in the plane for about an hour and a half and was utterly over it, so naturally that set her up to be cranky and she screamed the whole flight home.

All I can say is that I don't know who was happier to see her bed... her or me!

Still, at least another trip is over and done with. Hopefully we will get a bit more of a break before we go down for the next one!

Maybe we can even make it a family holiday... I dare hope!! :D

Except Nicola...

Except Nicola...


This seems to be a recurring theme in my life...  there are so many things, so many trivial little things that happen...  and they just point out again again the difference between Nicola and her siblings.


Today I spent time doing all the girls hair, pig tails, pony tails, clips, bands, etc...  that is, all except Nicola.  Her hair is too fragile to be tied up.


We all sat on the floor with Alyssa...  that is, all except Nicola.  She doesn't sit on her own and had to be in her chair.


We all shared some hot chips for lunch...  that is, all except Nicola.  She doesn't eat.


Tonight I managed to cuddle all of my children to sleep...  that is, all except Nicola.  She doesn't like being held and only sleeps in her own bed.


Now, I sit here knowing that they are all sleeping peacefully...  that is, all except Nicola.  She is wracked with pain tonight and not settling well at all.


One by one they don't amount to much at all, but after a hundred little reminders every day, it gets frustrating.  Even something as simple as meal times.  Because I make all the food for the girls, I defrost a container of baby food every night for their dinner.  I make sure it's warm, add a splash of extra water and grab a spoon for Alyssa...  then I have to get a tube and a syringe for Nicola because she can't eat.  


I know that I should be grateful for the fact that she is healthy and relatively happy and she is doing well, all things considered...  but it is so hard seeing her so far behind her sisters, and they are growing more and more aware of the things that she cannot do, especially Jessica.


Last term, at school, I took Misty in for Jessica to use for show and share, so I had to sit through prayer, at which Jessica was prayer leader.  (So proud of my baby girl!!).   I sat and listened as their teacher read the story of Jesus healing the lepers...  and Jessica waited through the whole story with such a contemplative expression...  then she jumped up and ran over to me and gave me a big hug and she said "Mummy, all my friends little sisters can run around and play with them...  all except Nicola."


I nearly cried.


But then she turned around to me and said "It's ok Mummy.  I am going to pray extra hard today and I just know that if I pray extra hard Jesus will make Nicola better, just like he did for the lepers, so she can come and play with us like all my friends little sisters."


How can you respond to that?  How can you possibly formulate any kind of a response?


I long for the day that excepting Nicola will no longer be something that we do...  because when we sit on the floor and play, she will sit beside us.  When the girls run around and race, she will run with them.  When I get out dinner, she will eat with us.  


I know that that day will come...  I just wish it would come a whole lot sooner.


Is it wrong that I wish she was 'better' and able to participate more with her sisters?


Does that mean that I don't accept her for who she is?


*sigh


I really hope not.  


:(

If Life Were A Movie...

If life were a Hollywood movie, how much would things change?  I sure as heck wouldn't look like me...  women like me don't get cast in leading roles, so I would inevitably be skinny and gorgeous and probably blonde as well.  I would have a lovely clean house with matching furniture and a nice green landscaped garden. Oh and I would have a dishwasher!  I would have a nice shiny car and a healthy bank balance and I would be able to sing from the hill tops because I would be so happy and everything would be so wonderful...  and there would always be a happy ending...

Yes, if my life were a Hollywood movie I would not have to deal with watching my child suffer and struggle through life every day.  

This is my life, my every moment of my every day.  This is my daughter, and this is her reality, and her reality is my heartbreak.

I have blogged previously about the loss of dreams that come with having a child who has special needs...  Some days I still struggle with the fact that my child will not have a 'normal' life...  but then, it occurred to me...  I will inevitably have to take that one step further...  I will have to live through every parents worst nightmare.

When you have a child it is unfathomable that your child will die before you.  It is not the natural order of things and it just simply isn't intended to be done that way.

But it doesn't matter how long Nicola lives, how healthy we keep her, how much medical intervention we can achieve...  it doesn't matter what we do, the simple fact of the matter is that one day, perhaps not tomorrow or next week, or even next year...  but one day, I will have to bury my child.

Now some people are going to be shocked by that, or get upset with me, or perhaps even get offended...  but please don't.  

You see, it is an inevitable outcome for us, and I realise that now...  I can't change it...  I might be able to delay it, but I can't change it...  and while I'm not ok with it - and I never will be ok with it, knowing that one day it will happen gives me the determination to live for today.

So that is what I do...  I live for today.  I play with my children, I make them laugh, I tickle them and cuddle them and read them stories...  I create memories, not only for myself, but for my family...   I put on a brave face, I hide my tears and I move on. 

But all the while, despite the laughter and the happiness, now I cannot forget...  and it's the not being able to forget that is killing me the most.  I haven't been able to find a way to deal with this emotion, with this fear, with this grief...  

The thing I find the hardest is that it is a feeling that isolates me and again sets me even further aside from my friends and family who just don't get it, who don't understand what my future holds.  

How do you cope with something that no one else will talk about?  That no one else can see or understand?

What is there to do other than anything that is within my power?

My dishes may not be done, my house is a mish mash of mismatched bits and pieces, my bank account balance is less than zero...  but every night my children go to bed happy...  we take photos, we paint pictures, we write stories, we create memories every day...  memories that will, hopefully, last a life time.  

We cherish every moment and live for what is right here and right now.  Bring on the rainy day so we can go dance.

"Any good that you can do, do it now.  Do not delay or forestall it, for you will not pass this way again."

 

My Wish List

The things I want...


I joke almost every day about the things I want...  I want a million dollars, I want an extravagant holiday, I want  a big house, I want new furniture, I want a new car, I want a cook, I want a cleaner...  I want a lot of things in my flights of fancy...  


But in my heart, I only want a few.


I want a good camera - to be able to record the moments as they happen, to make the memories that in years to come we will look back on and smile, remembering the happiness and love in each and every moment.


I want a holiday - not an extravagant expensive overseas venture, but a nice family holiday...  something to show my other children that we can be like other families, that we can go away and do normal things, that our lives don't revolve around the hospital and a never ending barrage of medical and therapy appointments.


I want $4186 - to be able to pay for and bring home a Kidwalk for Nicola to try and get her learning to walk.  We put her in one at therapy to trial it and she took two steps...  which was the proudest mumma moment of my life!  We have so far paid close to $1800 on it, but there is $4186 to go before we can take it home and actually use it.


And that's it.


In the immediate here and now, if I was granted three wishes tomorrow, those are the three things that I would ask for.  


Is it really asking for too much??

Happy 3rd Birthday Princess Nicola!!!

Sitting here, it is so very very difficult to believe that my beautiful baby is three years old. It is hard to believe that we have been fighting this fight for three years, and that she has survived the insurmountable odds that have stacked up against her.

The pride I feel now when I look at her is unbelievable. It surpasses anything that I ever thought was possible. Right from the very beginning she has made it very clear that she would do things her way, in her own time, when she was good and ready... and if that doesn't suit the rest of the world, then that's just too darn bad.

She has proved that she is strong and brave and smarter than people give her credit for... and that she is capable of miracles.

I have thought all day about what I was going to say in this blog entry, and I was going to do something big and deep and meaningful telling you who much I love her and how special and wonderful she is and how amazing etc...

And now that it's time to write it, it has occurred to me that I don't need to say any of that... because anyone who knows me knows how much I love my daughter, how special and wonderful she is and how amazing she is...

So I am just going to say this...

Nicola, you have turned my life upside down, inside out and back to front. You have taught me fear that I didn't know was possible, determination I didn't know I had... you have brought out a sense of humor that is almost macabre at times, and you have pushed my sanity to limits I didn't know existed...

But despite all that, I love you.

I love seeing the way you interact with the world, the way your face lights up with delight when you see something that pleases you, the way you communicate to tell us what you want. I love seeing the little things you do that surprise us every day... like today when you said 'cake'.

I love sharing every achievement you make with you, I love being there, watching you grow and learn, and watching the self awareness grow within you.

You drive me to the very limits of insanity, you reduce me to tears, you make me utterly crazy with frustration, but every second I get to spend with you is worth it.

I have been blessed to have you in my life and I hope that that blessing will be very long lived.

You are my heart, my soul, and my world. You, baby girl, are my everything!

Happy Birthday Sweet Princess.