Convoluted arteries and crowded nerves…

You’ve probably noticed that I haven’t been as regular with my blog posts lately. It doesn’t mean I’ve forgotten about you!

In the last couple of months I have been diagnosed with a condition called Hemifacial Spasms (HFS). My neurologist, before he saw the spasms first hand, thought they might be a form of epilepsy, but I actually had them while I was in an appointment with him and he immediately recognised them as HFS.

So, what is it? It is a rare condition where an artery in the base of my brain is pressing on nerve/s that control facial movements on the left side of my face. The pressure is making the nerves misfire and I am having spasms on one side of my face. At first they were only every few weeks and were minor (i.e. a small twitch near my mouth, kind of like an Elvis impersonation, for a few minutes at a time), but they have steadily gotten worse in the past couple of months and now I am having them most days, they are contracting the entire left side of my face (and sometimes go over to the right side a bit too), and they can last up to a couple of hours.

Initially I had Botox (yes – I was a celebrity for a while!) to try and stop the spasms, but that hasn’t worked and it left me with the side effects of not being able to open my left eye completely and of having facial droop.

The next option, one that is scary and has risks, is to have surgery. I won’t go into that right now as I have to talk to a neurosurgeon to find out more. I do know the recovery time is lengthy and can be very difficult. Activities after the surgery can be quite limited and are gradually reintroduced over a period of four to six weeks.

Anyway, the spasms make me very tired and I am having trouble getting a lot of things done at the moment. But, I promise I will do blog entries whenever I am able to.

I have been thinking lately that looking after children would be very difficult after the surgery. In some ways it is better that I don’t have children if I have the surgery, but that makes me sad. I am sad to think that not having children could be a benefit in this circumstance.

I also feel angry sometimes. I could have much worse health conditions to be sure, but I sometimes wonder why I have HFS, as well as major depression, as well as a rare skin condition, as well as epilepsy, as well as unexplained hot feet at night that stop me from sleeping, as well as infertility. It just doesn’t seem fair – but then who said life was fair…

Well – that’s enough of me sharing my despondency.

I will finish on a lovely note. I was outside by my fish pond having a cry the other day and my dog, Ari, came to comfort me. Sometimes pets make the best therapists.

One of my three boys...Ari...

Grandma...

I’ve recently reconnected with one of my best friends from school.

We spent many hours in our teenage years walking to and from the local grocery store in the country town that she lived in singing Guns n Roses, The Beatles, and AC/DC songs – well, sometimes they were our versions of songs. Instead of “it’s a long way to the top if you wanna rock n roll” we sang “it’s a long way to the shop if you want a sausage roll.”

We were cool… At least we thought so at the time. Our fashion, when not at school, consisted of basic t-shirts, checkered flannel shirts, and jeans which were ripped at the knees. We didn’t bother with fancy hair or makeup. We adopted a dog from the local fair and brought him back to her place, where her parents begrudgingly let her keep him.  I’ll never forget Ben!

My friend played guitar and sang amazingly well. I sang too, but amazingly terribly.  But that didn’t matter.

We went to another school when our school was closed for the day. Our teachers and parents thought that it was wonderful that we came up with the idea of attending another school for the day to experience what it was like.  Ummm…our intention wasn’t really to experience another school…we just wanted to meet boys…

We chose a mechanics class for one of our school subjects. Once again, so that we could meet boys…

The first time I went to the city without my parents was with her. We ended up not coming home when we should have. It wasn’t our fault…really…  Our parents got together to try and work out what they were going to do with us, and we were out in the backyard deciding that we would run away to the sand hills near my home to live. Surely they’d never find us in a 0.325 km2 conservation park about a kilometre away from my house!

My friend has just become a grandmother to a little boy.

It is so unbelievable to think that the little girl who led me astray in the 1980s is now a grandma. Okay – maybe we led each other astray…

I gave her some things (cups, bibs, etc) that we had here for Hugo when he was a baby to have at her house for when her grandson comes to visit. I also gave her two romper suits. These romper suits were ones that I bought for our babies in 2008. Ones that we never got to use for our children.

I am so grateful that my friend has come back into my life and that a part of what I had planned for our babies can become a part of the life of her grandson.

She asked me whether I would like to come up with her and visit her grandson in the next few weeks.

Gee…let me think…

YES!

Leaving baby behind...

There have been two stories that are similar to each other in the news in the past two months. I have cried at reading both and I have felt a powerful anger while reading both.

The first is about a little boy named “Gammy”. Gammy is the twin of a little girl called Pipah, but they don’t live in the same house, or even in the same country – thanks to their selfish “parents”. An Australian couple used a surrogate from Thailand to have their twins for them. Pipah was born healthy, but Gammy was born with Down Syndrome.  So his “parents” left him behind in Thailand. 

Little Gammy has been adopted by his surrogate mother and will be raised in a loving home. I have to wonder what is in store for Pipah – will her “parents” expect her to be a certain way? What happens if she gets sick? Will they give her up too? Will they think she is not good enough if she doesn’t meet their expectations and standards? The Thailand story...

The second story, which came out this week, is about another Australian couple who used a surrogate in India. They had twins – a boy and a girl. They brought the girl home, but left the boy in India. They didn’t want him because they already had a boy. It seems they may have sold the baby to another family in India, but nobody really seems to know. The India story...

I wonder how many other times children have been abandoned by their Australian “parents” in other countries because they weren’t wanted.

Frankly these people make me sick to my stomach. I do not understand how any parent could leave their child behind. How could anyone decide their own child is not good enough or does not meet some ridiculous criteria?

A couple only wants a baby of a certain gender. Responsibility is withdrawn for a child because they have a medical condition. These type of people do not deserve to be nor should be called parents. They are pathetic.

And it makes me angry that such people have children when there are so many of us who cannot. We would have loved our babies no matter what because we know how precious they are. We would never have left them behind.

How could they?

A monster maternal instinct…

SPOILER ALERT: there are some small spoilers in this post about the movies “Cloverfield”, “Aliens”, or “Jaws 3”.

There’s a movie called “Cloverfield” that I really enjoyed when I first saw it. It is about a group of young adults who are having a farewell party for one of their friends in New York when a huge monster starts attacking the city. The movie is filmed through a home movie camera which is held by the boyfriend, the guy who’s a little be annoying but everybody kind of likes, and the guy who turns into a bit of a hero in turn.

I’ve watched the movie a few times and with each viewing I became more uncomfortable and realised I was feeling sad for the monster. This was despite all the death and destruction it was causing in Manhattan.

It seemed to me that the monster was really frightened. It wasn’t meaning to hurt people – it was just hungry and curious about these things were that were running all over the place. I realised that I didn’t want the monster to be harmed and wanted people to understand it rather than to just try and kill it. My maternal instinct was kicking in and I started to think, by what the monster was doing, that it was actually an infant of its species. It was scared, alone, hungry, and wanted its mother and/or father. When I told Kirby about my thoughts he looked at me like I was crazy.

Well, it turns out I was right. While some viewers of the movie do not believe the monster was meant to be a baby, the producer, J J Abrams, indicated that the monster was an infant, and the director, Matt Reeves, has stated that the monster is, indeed, a baby. It does what infants do – they have separation anxiety and cry for their parent/s, and they are curious about things and put what they find in their mouths to see if they can eat them (hence not leaving small things such as marbles and pieces of Lego within reach of human babies and toddlers).

So it seems I have a great maternal instinct. I can recognise an infant in another species – even if the infant is 20 stories tall (there’s some dispute on this, but basically it is huge!)

Perhaps my maternal instinct is going a little bit overboard, but I wish the monster baby could be reunited with its mother and that they could go back to wherever it is that they came from, whether that is the depths of the ocean or another planet. Though I guess that probably wouldn’t make for a very attractive movie to those who like a good monster flick.

There are two other movies that bring out the maternal instinct in me in a way that they probably wouldn’t for most other viewers.

One is Aliens which stars Sigourney Weaver. Humans go to a planet and start killing baby aliens – what did they expect the adult aliens would do? Go the aliens I say!

The other is Jaws 3. When you accidently trap a baby shark and don’t release it – the mother is going to come looking for it and is going to be pretty mad. At least in the movies but not in real life as Great White Sharks don’t actually care for their young at all once they are born.

Well, now you know I have a ramped up maternal instinct. I wonder how protective of my own babies I would have been if I lean towards protecting a massive infant monster, the young of a scary looking alien, and the ferocious baby of an even more ferocious White Pointer shark!

When You Can't Have Kids...the book...

I haven't written any entries since last month due to health issues, but also because I've been working on getting my book "When You Can't Have Kids" ready for sale.

And it's ready and available through Amazon!

For the paperback version please click here.

For the Kindle version please click here.

And I promise I will be writing some blog entries over the next few days...I have so much to write about!

Hair...

I always pictured myself as one day being an old woman who had grown old gracefully and embraced grey hair and wrinkles as part of being a crone.

Now, what I have to share with you today is not really a big deal in terms of serious life problems, but it has brought up for me another of those “Really, life? You’re throwing this at me as well?” moments.

One of the loveliest parts of growing old was that I thought I would have long grey hair which was in a plait down my back, or in a bun on my head, or even free flowing over my shoulders. I even have some of those grey hairs now – although being honest I still hide them under a covering of henna from time to time.

During these past few weeks I went to a dermatologist to have some dodgy looking moles taken off and assessed in case of skin cancer. Fortunately there was nothing to be concerned about. But, in the process of looking at my other moles for any suspicious ones the dermatologist mentioned that my hair was quite thin at the crown of my head. I knew it was thin, but it wasn’t until I came home that night and looked at it with a mirror that I realised just how thin it had become.

The dermatologist did a puncture biopsy of my head and a week later we had the results. I have alopecia, which is a genetic thinning of the hair over time, and another thing which I can’t remember the name of where my hair follicles are dying and I will lose my hair.

The dermatologist was keen for me to go on medication – like three lots of it – to try and stop my hair loss, but I have decided not to go down this path as I am already on five medications for epilepsy, clinical depression, and high blood pressure. I don’t want to add to that mix really and the side effects of the hair loss medication and the monitoring of levels of different things like potassium are fairly full on. Instead I’m going to use scarves and hats, a thing called a topper that would go on the top of my head and blend in with my own hair to create the look of a full head of hair. And eventually I guess I may use a wig.

So, what has this got to do with not having children? Well, it is a reminder that I am getting older, albeit in a way I hadn’t expected. It is true that some women have babies in their forties, but the chances of this are very, very slight through both natural conception and IVF.  And for Kirby and me it is particularly remote.

I have realized that somewhere in deep down I believed I could still change my mind and we could try IVF one more time. We were young. We were still in that “baby bearing” age group.

The reality has hit that this is not so. We are being taken out of the realm where trying IVF one more time is a choice we truly have. The choice is gradually being taken away from us.

Even though we know we won’t ever try IVF again it is still hard to come to terms with. We have not got as much control as we once did, although I guess we never did have that control. Does this sound all mixed up?

I feel like I am entering another stage of having to say “farewell” to our children. I could hold them here, my fingertips could grip theirs and keep them here, but now letting them go completely is on the horizon.

I don’t feel ready to get older. I don’t feel ready to have grey and thinning hair. I don’t feel ready to accept that the choice, that perhaps we never really had in the first place, is being taken away from me, from us.

There is a scar in my heart from not having our children, and this sudden certainty that I am moving beyond child bearing years, is a splinter that has wedged its way into the tissue that lightly covers the wound I have. And I feel like I am bleeding.

Just popping by...

Just wanted to let you know I haven't forgotten about you...I've had a nasty cold this past week and my brain remains a bit foggy so I thought rather than writing a post that nobody could understand I will wait and see if the fogginess lifts by the end of this week...we shall see!