Saturday, October 30, 2010

Sleeps Not So Sweet.

So... Nicola finally got her sleep study...

What can I say?

Other than... not at all what I expected!

We flew down that morning and transferred across to the Mater Childrens Hospital where we did all the admission stuff and sat down and spoke with the ENT specialist about her syndrome, her medical history etc.

At 4pm they gave us an hour of reprieve so I was going to run across to Subway to grab something to eat, but I ran into her paediatric surgeon in the hall who wanted to talk to me about Nicola's hernia and the surgery she needed for that.

Thankfully I did manage to grab a quick bite after talking with Craig otherwise it would have been a REALLY long night!

At about 5.30 we gave her a bath and they hooked her up to all the monitors and then I put her into bed.

Honestly, I didn't expect them to find much of anything... she had a BEAUTIFUL night's sleep! If she slept like that at home I would be a very very happy Mumma! I even rang my husband at home and told him that she was sleeping so well... no snoring, no gasping or choking, nothing... just a nice night's sleep!!

The next morning, after *I* tossed and turned all night long, the ENT specialist came in and had a chat with me.

I told him that she had had what I thought was a brilliant night and how it was so typical of her to have a good night's sleep when I'm trying to prove how bad she usually is.

He was amazed.

Medically, her sleep study was a disaster. He said that in the 12 hours she was connected she achieved less than an hour and a half of actual deep sleep. She stopped breathing on average of every 3 minutes or so, and through the whole night, her entire oxygen saturation levels rarely rose above 80% and she had constant nasal obstruction.

He thinks her tonsils are far too big and are obstructing her airways through the night and that her adenoids are permanantly blocking her nasal passages.

For the first time ever I have been taken completely and utterly by surprise when it came to the results of a test. Normally I have been the one pushing for testing because I felt there was a problem, but this time I was sure they wouldn't find anything!

So now the grand plan is to go back to our ENT specialists at the Royal Childrens and get her put on the waiting list for T&A surgery. After the surgery has been done they will give her a few months to recover and then do another sleep study and see if there has been some improvement. If there hasn't, then they will have to refer her to other specialists for more tests to be done.


Friday, October 15, 2010

I am the child...

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown.

Tuesday, October 5, 2010

I will love the light...

Since Nicola’s birth, I have found that in the moments that I need the reassurance and comfort most, it comes. Usually from the strangest of places, but it comes. When we first got her diagnosis, I was sitting at my computer one night, trying not to cry as I tried to write my first introduction to the support group mailing list… and the mail icon appeared on my screen telling me that there were new items in my inbox. One of them was one of those random spam letters. Most people with email know the ones I mean… they have a random convergence of bizarre words and quotes amongst them which are supposed to get them through SPAM filters?

Well, this one appeared and the first line read; "I will love the light for it shows me the way. Yet I will endure the darkness for it shows me the stars..."

That has been something of a mantra for me since I started on this journey. I love the light, it shows me where I am going and where I have been… but in the darkness there is a beauty that you can’t see in the light. Sometimes you need to look a little harder to find it… but it’s there. Maybe it’s in the form of an unexpected friendship, or a once in a life time opportunity, or a trip, or something. It might be taken under the cloak of darkness, but there is beauty there if you look for it.

But, on the flip side… sometimes the light is just downright harsh and you find yourself wishing for the cover of darkness to shield you from the things that you don’t want to see.

Like just how unfair and how unjust this life can be sometimes.

Our most recent endeavour has been to try and source funding to buy Nicola a wheelchair and a standing frame.

Well… seriously… with how difficult it has been, you would think I have been asking to have the moon repainted to purple!

Weeks of phone calls and appointments and talking to people until I’m blue in the face… explaining the same story over and over and over, until it gets to the point that you just want to carry around a voice recording and press play.

But where I’m really starting to fail in understanding is the way that funding is allocated.

See, to me, in a utopian society, it would be simple. Funds for services/equipment/needs would be allocated on a ‘needs basis’. It would make it really simple. If you have a genuine need for a certain piece of equipment or a certain service, you would say “I need this.”

Then they would look at the justification, nod in agreement and say, “Yes, you need that. Here is the funding to cover it.”

Of course, I understand that it wouldn’t cover every need, but rather on a ‘greatest need’ basis.

Which is why I struggle so much to understand how it is that certain individuals with widely known conditions are able to get funding for items like iPads, while other individuals with differing conditions, struggle to get even basic access to funding for life essential items, like a wheelchair.

I really, simply, just don’t get it.

It’s almost like the popular kids are getting the cool stuff, while the rest of them are begging for the dregs that are left over.

I guess it’s just another way to prove that we don’t live in a utopian society, but rather a dysfunctional capitalist society. S/he who has the dollar has the power.

And this is so painfully and abundantly clear in our medical system. It truly is user pays system for anything that comes even close to resembling quality of service.

The bleached blonde barbie up the street with more dollars than sense can go book herself in for a new set of boobs or a new nose, or hell, even longer legs! She can get it done as early as next week if she pays enough for it…

All the while, sick, frail, disabled and elderly are suffering and even dying from lack of access to proper medical care. Waitlists are horrendously long, services are inaccessible and support is almost unheard of… and politicians really just don’t care. And it’s something that will never change.

So yes… sometimes the light isn’t all it’s cracked up to be. The light can make the days seem impossible to deal with… can make targets seem impossible to reach… can make everything seem that much harder to deal with, that much more isolating and that much more lonely… and makes it seem even more apparent that there are very, very few people in the disability services sector, especially those creating the red tap who possess an iota of common sense or understanding!

So that’s my whinge for the moment. But I just need to remember, that it doesn’t really matter. In the grand scheme of things, it’s just a little setback and it doesn’t really change that much. We will accomplish what we set out to achieve because we are determined and we will get what we need because we have to. That doesn’t change because a couple of politicians somewhere are idiots. Sure, it makes it harder, but it doesn’t change anything.

We will succeed because we our daughter depends on us.