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.

*sigh

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.

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.

Another Amazing Experience.

We have been extremely blessed in our lives in so very many ways, but at the moment, the most poignant to us is that we have the love and support of family and friends which has allowed us to accomplish some amazing things for our daughter.

When we were first given Nicola’s diagnosis, I felt that my world had been shattered… I couldn’t even talk about her without dissolving into tears and if anyone asked me about her diagnosis, I just couldn’t handle it. It was too much.

Then we made the decision to go to our first conference, which was an incredible 10 weeks after we got given her diagnosis. After two weeks of procrastinating and crying and deliberating, we came to the conclusion that if we were to accept our daughter’s diagnosis and her future (what little we knew of it), then we would have to go to the conference, we would have to do everything that we could to get our daughter there to the people that knew best.

With 8 weeks to go, we turned our appeal public, starting with friends and family and ending up in the local media… and we succeeded. In 8 weeks we raised enough funds to cover two adults and one child to fly to San Francisco, spend a week at the conference, pay for our accommodation and meals and everything, and then come home.

The trip, although incredibly stressful, was extremely successful. The experience was absolutely amazing, and one that I firmly believe not only helped us on our path of discovery for her daughter, but in fact saved her life.

We learned several things during that conference, one of which was that Nicola actually had a clinical diagnosis of a Chiari Malformation which, apart from causing her constant and chronic pain, it was also affecting her breathing and her feeding and pretty much every other aspect of her life.

The sessions that we attended with the conference and the connections that we made gave us the power to return home and fight for better healthcare for our daughter.

But beyond that, it gave us a chance at social inclusion… to stand with people who understood and shared our journey.

We were lucky enough again this year, through the help of some amazing friends who helped us fundraise, and the Grace of my Father in Law who got us over the line at the 11^th hour, to be able to attend the first annual conference in the UK and the launch of the new international Rasopathies support group.

While again it was only a few days, it was a few days that have once more changed our lives. From a medical perspective, we had access to specialists and doctors that we had never met before who have had many years of dealing with Costello Syndrome in the UK, who were more than happy to sit down with us, one on one, and discuss Nicola and her health and her options. We learned about drug trials that will most likely be beneficial to stabilising some aspects of her health, and improving others. We learned a whole bunch more scary statistics and facts about our daughter’s future, some stuff that we didn’t necessarily want to know just yet, and some other stuff that is great to know, just to keep in mind when things happen and we need it, stuff like muscle contractures, tight heel cords, cardiac problems, neurological problems, skeletal issues, growth hormones, etc.

We got to spend ages talking to a mobility specialist and found out what kind of wheelchair we need to get for Nicola, so now all we need to do is to find the funding to buy one for her!

We also got to spend a few more days with the families who are walking this path with us… some of whom we had met last year in San Francisco, and some of whom we knew only over email. It was great to be able to put faces to names and meet some more wonderful children… it was also great to meet some of the other Rasopathies families (Rasopathies are other syndromes that are related to Costello Syndrome and come under the same neuro-cardio-facio-cutaneous syndrome banner. Many of the symptoms and treatments overlap. By grouping them together under one Rasopathies banner it increases the numbers and makes them more viable to researchers and for funding etc).

Nicola (and us) were invited to a lovely high tea at the House of Lords overlooking the River Thames which signified the launch of the new support group and we talked about the future, and we even managed to fit in a few hours of sight seeing in London!

All in all, it was another amazing experience, and one we are truly very lucky to have received, and one we are very, very grateful for. These experiences give us the strength and knowledge to fight for our daughter’s medical needs, as well as the social interaction to abate the loneliness and isolation that comes with dealing with such a rare and daunting medical condition.

We wouldn’t be able to do this without your support… so thank you.

From the bottom of our hearts, thank you for the opportunities you have helped to give to our daughter.

Today is your Birthday...

My beautiful daughter…

Today is your birthday…

For two short years you have graced this earth with your presence... for two short years you have filled our hearts with a love that we never knew was possible… for two short years you have brought us light in the darkest of moments and hope in the ravages of despair.

If I could take away your pain and make it my own, I would. If I could fill the world with happiness, I would do it for you. I would walk to the ends of the earth and back again to make even an iota of difference in your life.

In the past two years, you have taught me more than most people learn in a life time. You have taught me, hope and faith… you have taught me compassion and understanding… you have taught me strength and humility… and you have taught me love.

Today is your birthday.

The anniversary to celebrate the day in which we received one of the most precious gifts we could ever have been given…

The gift of you in our lives.

Oh how I wish I had known…

Two years ago today I was told that I was going to be having my baby in 24 hours. I was 34 weeks and 6 days pregnant. The radiographer and the obstetrician both assured me that the baby would be fine… after all, she was almost 11 pounds.

What could possibly go wrong?

Oh how I wish I had known…

I wish I had known that minutes after my daughter was born she would have a seizure and stop breathing. I wish I had known that the next 8 months of our lives would be utter chaos and turmoil as we flitted from one specialty to another, one admission to another, one complication to another, before everything culminated in a diagnosis that rocked the foundations of our world.

I wish I had known then how drastically our lives were about to change… that I would never again feel like a competent and able parent when it came to my daughter… that I would sacrifice everything for a better chance at life for her… that my older daughters would miss out on a normal childhood… that I would become an expert in medical conditions that I never knew existed, and had no desire to know about…

Oh how I wish I had known…

While in hindsight I probably wouldn’t have changed anything, perhaps it would have made me a bit more prepared… for the constant battle to gain access to a health system that seems to constantly shut us out… for the heartbreak I would come to feel as I cradled my daughter as she screamed from a pain I could not ease… for the loneliness I would feel as I walked this path, virtually alone… and for the fear I would come to feel every night as I fell asleep wondering if my child would wake the next morning.

Yes… two years ago today, I was told my life was going to change. I just had no idea how much.

Now… on the eve of Nicola’s second birthday and I look back over the past two years, and I can’t help but marvel at how far she has come. She has survived odds that have seemed insurmountable. She has lived with complaints that drive grown adults to tears, yet she does so with a brave face and a smile, because in her little life she has never known any different.

I watch her interact with her sisters, laugh with them, touch them, play tea parties and ponies with them, and I can’t help but smile. I watch her signing ‘hello Daddy’ or ‘hello Mummy’ and it fills my heart with happiness that I never knew was possible.

It is so confronting, seeing other children her age, or even seeing her sisters, and knowing that Nicola will never really be like that… but Nicola is… well… she’s Nicola. Nicola is different, and that’s ok… because that makes her who she is.

And who she is... is perfection incarnate.

<3

Communication

Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.

It makes it all the harder when you are constantly seeing reminders of the life that you're missing out on... family and friends with their 'normal' children who are running and babbling and playing... and it really drives into your heart that your child is just not the same as other children.

Last Friday for instance... I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.

Given their close proximity in age it's only natural that the children are all friends and play well together... that is, all except Nicola.

Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn't even sit unaided. She doesn't talk, she doesn't walk, she doesn't run... and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.

Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.

Don't get me wrong, I don't begrudge their happiness with their healthy children. Not at all! And while I wouldn't give Nicola up for anything in the world or change anything about her, I wouldn't wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.

But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us... just when we need it most.

About a month ago we had a massive breakthrough in her communication... she looked at me and she said "Mum. Mum, Mum, Mum." Of course, to say I was ecstatic was the understatement of the century... until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers... and it wasn't really a word at all.

One step forward, two steps back.

Sigh.

But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.

Ok, so she's almost two. I get that... waving for a two year old isn't a big deal...

But for MY two year old, it's a mammoth step! It's phenomenal! It's more of an achievement than man's first steps on the moon or the discovery of the theory of relativity.

MY two year old daughter waved! She picked up her hand and waved! She communicated with me!

Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.

Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.

She responded to my waving to her by signing 'good waving' to me in Makaton.

She used her finger instead of her thumb, and it wasn't entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. "Good waving Mum. I'm proud of you!"