Pearls of Wisdom

I signed up to BlogThis earlier this week, and the current challenge is to write about the best advice you've ever been given.

Mine is especially pertinent this week, especially today. The words rang loud in my mind as I contemplated the struggle I feel at times to just keep on trying.

I think I've probably blogged it before, but a few years ago, before the Motor Neurone Disease, my mother, after a hysterectomy, had a complete breakdown. The operation was simply a catalyst, and brought to the surface some horrific issues for her to deal with. She was plunged into such despair, such panic, that she spent more than 3 months in a private psychiatric facility. She had 12 rounds of ECT. She struggled with thoughts of suicide, severe depression, and crippling anxiety.





Sound familiar?

I didn't know it at the time.

While she was ill, I spent a lot of time with her. My father and I took it in turns (he was a shift worker) to be with her when she wasn't in hospital, and we visited her twice a day when she was.

I remember one day, when she was out on weekend release. It was probably around 9pm, and Dad was on afternoon shift, so at work. Nights were hardest for her (as they are for me), so we were there trying to distract ourselves with a game of football.

We were talking about what she was going through, how she was feeling. I was so priveleged to be allowed in, to have her open up to me and let me try to help. I know that it was something she struggled with, tremendously. She hated our role reversal, and at times felt deeply resentful of it.

Anyway. I remember her talking about a therapy session she'd had. She spoke about Dad, and how he was her anchor. She had been planning suicide, and was being very decietful, 'faking' a recovery, so that she could carry out her plans. We had, at the time, asked her psych to schedule her as an involuntary patient, to keep her safe.

She'd had a session with him, and he'd challenged her. Her Doctor, Josh was not anything like you picture a psych to be. He was young (not 40), dressed very casually, and was very blunt. Not one to tiptoe around an issue at all.

She was angry at him and at us, for thwarting her plans. She was being obstinate and objectionable (I love her, but Oh.My.Goodness she was stubborn!) and finally, he'd had enough.

He told her that she was all talk, this loving Dad thing. That she said he loved him, but clearly, not enough. She was outraged. "How dare you!? I'd die for him", she spat, infuriated.

"Yes", says he, wise beyong his years. "But will you live for him?"


She told me this in a near whisper. "It's all well and good to say I'd die for him. But trying to live for him. Staying alive for him. That's so much harder". Tears streamed down her face as she told me this. She clearly had accepted the challenge, but was simply overwhelmed at the battle before her.

I sit here today, feeling the same way. Today, I contemplated taking my life. I don't think I wanted to die, as such. I just wanted out. I know it sounds like semantics, but it's not. My desire isn't really to leave them. But I wanted to check out, run away, escape myself.

I just wanted it all to stop. I had a bottle of sedatives in my hand (who knows if they would have done the job. Possibly not). And I could see myself take them. All of them.

I could almost feel them hit the back of my throat as I drank them down. I could feel them slide down my throat. I thought of the best time. I thought of making sure I did it when Joel would be an hour or so away. So the boys wouldn't be alone for too long.

Of course, then I remembered that conversation. I'd thought of it a couple of times in the past few days, because of this challenge. But today, it came into my head right when I needed it. Then I thought of Joel. Imagined him finding me, imagined him trying to explain it to Alexander.

Imagined my precious son growing up without me. All children need their mothers, of course. But he needs me even more to Sam. We have a connection so intense, it takes my breath away.

And I knew that my battle was going to be staying alive for them. Trying to be happy for them. Trying to get better for them.

It's easy for me to say I'd die for Joel. It's easy to say I'd die for my children. The hard part is going to be living for them. Living well for them.

In sickness and in health, right? Maybe it's not just the healthy one that has to do the loving. Maybe the real vow was to keep trying, even in sickness.

For now, I'm hanging on for dear life. Accepting every ounce of comfort and strenth he offers me. Determined never to let go.

He's strong. He loves me. He won't let me fall.

Thank You.

I'm here. Joel's home. I'm ok. I'm not great. But I'm ok. I didn't take anything.

I don't know what happened. Nothing specific, just a very black day, combined with Samuel being utterly outrageous set me off. I honestly contemplated dropping them both off at his daycare and running away. Just leaving them there.

Who the hell does that?

I am very lucky to have you all. I read all of your messages as they came in, and was grateful for every one of them. I'm sorry I can't talk on the phone, and that I didnt' respond individually.

Joel made it home around 4, armed with a beautiful card, tim tams, pringles (my favourite) and chocolate. Better, he had strong arms to wrap around me, he help me, stroked my hair and let me cry.

He is playing with the boys, and I'm going to have a quick nap, see if I can't ger rid of the headache I managed to give myself.

And one day, when it's not too big a burdn, I will tell Alexander just how much he helped me today. I will tell him that he was strong and sweet and loving. I will tell him that being such a lovely boy today was a glimmer of light, and a reminder of why I can't just give in on days like this. One day, I hope, I'll be able to tell him.

I'm going to have a nap. Just a quick one. Then later tonight, I'm going to blog. I've had one going through my head for the last couple of days, and I want to get it out.

And Anna. Thank You.

I don't know who else to talk to.

Today is the worst, blackest day yet. I mam sad and I am agitated. I am terrified that today will be the one that is simply too much.

I can't stop crying and I can't stop shaking. I don't want to call Joel, calling him home is not fair, especially now while he's running the business while the boss is away.

Samuel is too much today. He's being particularly objectionable, but I know that my coping skills are completely gone today. That's not fair on him.

Alexander is trying so hard to be a good boy, he's being cute and charming and loving. He's trying to keep his brother entertained. I should be enjoying him today, joining in.

I wanted to take the entire bottle of sedatives. It's sitting there, on top of the fridge and I've never wanted to do this more.

This isn't me trying to get attention. I know that my sisters will think os, I don't care. This is just me needing to connect wtih someone today. You guys have been a lifeline for me lately.

I need you again. You don't have to say anything. I just need to know that you're all there, and at some point will read this.

Two Years ago Today

I'll be back soon with more if a certain little man decides he's ok with me sitting down long enough to write anything meaningful.

Standing up for them.

Thanks to Eden for bringing this to my attention.

It's a few months old, but watch this video of John.C.McGinley appearing on the Bonnie Hunt Show in the US, talking about his involvement in the Special Olympics and the push to have the "R Word" eliminated from everyday speech.



Recently, on an online forum I visit, there has been a raging debate over whether using the word "Retard" to insult someone is offensive. There are a number of Special Needs parents who are explaining why the word is so hurtful.

There are a number of numbnuts telling us to get over it. It's just a word. It's not 'just' a word. It is cutting, it is cruel and it damages the purest and most innocent of hearts.

As the mother of a child who has been called a retard, I can assure you, it is beyond offensive. It is heartbreaking.

Heaven help the person who ever says it to his face.

This is for Charmaine.

I'm going to talk about something that I have never discussed on here, or any other public forum before. I'm going to talk, ever so briefly, about abortion.

Fo me and my family, for my life and my belief system, termination is out of the question. There are no circumstances under which I can imagine deciding to terminate a pregnancy.

So I guess that puts me at odds with a lot of my readers.
Except (and this will put me at odds with my family etc), I understand more now than I did ever before.

I understand the tragedy that is anencephaly. I understand that there are any number of conditions where termination would seem to actually be kinder than letting a baby suffer tremendous pain.

I understand that there are circumstances where the mother will simply die if she is not induced, even if she is too early for the baby to be viable.


From my travels through blogs and forums, I have learned that rarely is it as cut and dried as someone using termination as a method of birth control. While I cannot say that I would always make the same choice, I can say that I respect how incredibly heartwrenching that choice would have been for parents in those situations. I can understand that it is something that they would have simply agonised over, desperately wanting another way.

And I can understand the grief they feel for those babies, a loss they would feel the rest of their lives.

I understand.



But. Down Sydnrome?




I was lead to a blog today. I'm not going to link you to it, I refuse to increase her traffic. Won't be hard to find though, there's some buzz. It appears to based on this article.

Anyway. I was reading this article (and one she had written previously) by an OB who without having the balls to actually come out and say it, appears to agree that life with a child with DS is simply too difficult and certainly not a positive thing. It is, in fact, too much of a burden and that the increasing number of people terminating for DS is a good thing.

One of her 'fans' says parents of children with DS are only upset at this because they feel tremendous guilt for having a "defective" child.

Worse, a guest commenting that to eliminate DS would be to eliminate suffering.

Now. It is true, that children born with Down Syndrome are susceptible to some health issues. They can have low muscle tone, congenital heart defects, and some mental retardation (their words). Oh, and dont' forget the kicker she mentioned - distinctive facial features. Oh, the humanity! Imagine the horror of a child who looks different!

And I concede, there are varying degrees of severity of these or health issues. Some children will be more affected than others.

And I concede that sometimes the care of these children will be harder than the care of a child with no health problems at all.

Though then again, the care of a child with autism can be a bit rough at times. The care of a child with diabetes is hard work. The care of a child with cancer really puts a cramp on your lifestyle.

Right? If we're going to be honest, and talk about burden, then lets talk about all of it.

Lets not have a child that genes that predispose them to cancer, or diabetes or asthma.

About 15-18 years ago, I worked in a child care centre, and in my room was a little girl called Charmaine. She was of aboriginal descent and she had Down Syndrome. She was not the first child I'd ever met with DS, but she was the first I had spent a considerable amount of time with.

Charmaine's mother didn't know about the Down Syndrome until she gave birth. Nothing had been picked up earlier in tests. But her mother was afraid. She knew that her extended family would never accept Charmaine. She gave them some other excuse for Charmaine's distinctive features (I dont' know how she pulled it off, it was not a question I felt comfortable asking), and we were ordered never, ever to discuss it around anyone but Charmaine's mother. Not her husband. Not her other children. Not any of the extended family.

She was getting very little Early Intervention, for the above reasons, and because of the isolated community we lived in. She had been in the centre, 5 days a week since she was just weeks old. By the time I met her, she was 2, and not walking or talking at all.

She came to me at 3, and I delighted as I watched her walk. I was told to just 'work around her', not to expect 'too much'. Now, these things were said in ignorance. I know that the people I worked with adored her. But they had such low expectations.

I'm a bit of a stubborn cow. And a show off. Oh, how I wanted to prove them wrong.
By the time I left (a year and a half later), Charmaine was starting to speak (verbally and we had introduced some sign), was walking and running, attempting to ride trikes, attempting to join in and play with other children. She was also toilet trained.

Yes, Charmaine was hard work. And I don't want to trot out the old stereotype, but I can't help it. My goodness that girl could hug. And her smile. I still have a picture of her, and the smile never, ever fails to make me beam.

She was so worth it. And as she progressed and learned new schools, I watched the attitudes of her siblings changed, as they engaged differently with her. Still protective and incredibly loving, but they started expecting more of her too. She would occasionally play up her 'weakness' and try to get them to carry her or do something for her. They knew she was milking it though, and I loved to see them laugh and make her help herself.


A couple of my online friends also have daughters with Down Syndrome. Beautiful, vivacious, cheeky, stubborn princesses who love swirly skirts and dolls and cupcakes. Remarkably like the daughters of my friends who do not have Down Sydrome in fact.n

Funny that.

I'm not glossing. I know that Edie and Dannii and Julia have struggles ahead of them. I know that Raphaela and Paige and Georgia will have obstacles to overcome. But the thought that the world would be a better place without them? That their sisters or brother would be better off without them?

Sickening.

It's not necessarily her position that bothers me. We are all entitled to opinions, and as much as we may hate them, we can't stop them. But her attitude, I found cringeworthy. I stayed around a while. While my comment wasn't deleted, so many were. She brooks no arguement, and was so revoltingly patronising to parents of children with Down Syndrome that she made me ill.

I couldn't ignore it.

So. This one is for Charmaine.

And Raphaela.






And Paige.







And Georgia.





How on earth is the world not richer with these girls in it?


Go on over and visit the magnificent Eden. Her post says it far better.

For more information on Down Syndrome, please visit here, here or here.

12 Things I love about you

12 Years ago today, your trembling hands took mine, and you rubbed your thumbs across my knuckles. Sometimes gentle, sometimes firm, your touch centred me and helped me forget the 250 people staring at us. Your caress kept me locked on you, staring into your eyes. I saw love and hope and sheer happiness reflected back at me. You swore to love me for better or worse, in sickness and in health for as long as we both should live.

So, here, on the 12th anniversary of our marriage, I once again (as though I don't do this constantly anyway) reflect on my good fortune, the blessing of you.

1. I love your smile. I love the way your eyes crinkle when you smile, the way your eyes shine. Your smile takes up your entire face. You have different smiles. You have a small smile, when you're having your photo taken. You hate cameras pointing at you, there aren't nearly enough pictures of you in our home, my love. Let's remedy that.

(My mother laughed when she saw this photo. She just knew you were ready to kill that photographer! Much as I love this pic of us, it's totally you're fake smile).



You have a funny smile lips pursed, eyes darting, when you're trying not to laugh after you've snarked me. You've got a smile when you're trying not to keep a straight face after some more of Sam's cheekiness. You (and I) try so hard not to laugh, but damned if he's not freaking cute.

You've got the most tender smile for Alexander - one for when he says something sweet, one filled with pride as he reads to you, or shows us some new concept he's picked up. You're so proud of him, and your smile shows this. You have a smile when you pretend you just did not brazenly hit on me. You have a cocky smile that makes me laugh when you've clearly made me....happy.

2. I love your hair. I know that sounds like a silly one, but I want to get this one in before you cut it. Oh, how I wish you'd keep it right where it is now. Still neat, but just long enough to run my fingers through. Perfection.

3. I love the way you smell. It's a hint of soap, a hint of Obsession, and something that is just..you. You never, even after a 12 hour day, ever smell anything less than wonderful. I could breathe you in and just be entranced.

4. I love listending to you playing away on your bass. I love hearing you making music up, because I know it means you're totally relaxed. It's "you" time, and it's so deserved. It makes me calm.

5. I love your work ethic. I know sometimes it drives me mad, when you won't take a day off when you need it. But I admire this in you, I admire your honesty and how hard you work for your employers. I love that you are reliable, dependable. I love that you give your work everything while you are there.

6. I love that you give us everything while you are here. I love that we are clearly your priority. I've never, in our 13 years together, had cause to doubt that.

7. I love how considerate you are. I love that you would help anyone with anything if it were in your power. I love that people told me that about you before we'd even met. That people told me that you were the nicest person I'd ever meet. I love that they were right.

8.I love that you cry when you see something sad on the news. I love that seeing a child in pain, or sad, or hungry affects you so deeply. I love that you care so much.

9. I love that even though you hate how upset I get about things like this and this or this, you understand my need to expose myself to them. You understand that I believe that they deserve more attention than they get. I love that you tolerate my soapbox, and the smile you get on your face.

10. I love that my mother loved you. I love that she knew you were perfect for me. I love how well you get on with my Dad. I love that when my mother was ill, it was your suggestion that we move in and that I take care of her. I love that you were prepared to do what we swore we'd never do - move in with family, for her sake. I love the support you gave us all when she was sick. I love the gentleness with which you treated her, that you knew exactly when it was time to take Dad out for a beer, that you knew when I just needed you to hold me and let me get it out. I can never thank you enough for that.

11. I love the way you parent. I don't think it possible for a woman to pick a better man to parent with. You are gentle and loving with them. You make sure to spend as much time with them as you can. Not a weekend goes by that you don't take them off on your little adventures - to the river, new parks, bushwalking, swimming.






You are as involved as I am, and there is nothing I can do that you cannot. You do homework, nappies (though you cannot seem to match colours to save your life) discipline and the world's best cuddles.

Both of your children adore you, and deservedly so. You are helping to create two good, humble, loving men. You do this with your words, you do it with your actions. I could not be more proud.

12. I love that right now, when I am at my most difficult and screwed up, you seem to know just what to do. You are accepting and loving and strong. I will never, ever be able to tell you how much moments like this mean to me.

You are the love of my life. We were so lucky to find this so early, Joel. 21 years old and we had found the person we wanted to spend the rest of our lives with. You are my best friend, my lover, my closet confidant, my teacher, my soul mate. We are very different, yet somehow a perfect complement to each other.

I will never love anybody the way I love you. You were my first love. You are my forever love. I don't deserve you, but I'm never letting go.

A break in the weather

The past two afternoons in our home have been spent in rather cramped quarters. All four of us tucked neatly into the boys big trampoline. At least, it seems big when two giggling, squealing boys are on it. Add a Mama and a Daddy, and suddenly, the space seems much smaller.

Yet somehow, it has become my new favourite spot. Joel has been home early the past two days (around 4pm, much to the boys' delight) and we have all gravitated outside. I'm not remotely an outdoors kind of gal. I'm a fan of air conditioning and being surrounded by my things, and not such a fan of the sun in my eyes.

Until yesterday, at least.





We lay there, my family and I, sprawled across the trampoline (ok, I guess it's not that small, if all 4 of us can do that) and watched the clouds go by. The sky was a beautiful, peaceful blue with just a few scattered white pillows drifting overhead.
The breeze was a cool, gentle caress and the smell of jasmine, as it always does, awakens a sense of well being in me.

The boys delighted in having us on the trampoline with them, and their giggles and sqeals were somewhat infectious. As they jumped as hard as they could, trying to see how high they could make Mummy bounce (thank heavens for the net, is all I can say), I found myself laughing and squealing, for the first time in what feels like forever.


We were joined in our fun, soon enough by a pair of sparrows overhead. They weren't really going anywhere, just flying in circles, dipping, soaring, twirling above us. I watched them and thought they seemed to be just playing, flying for the sheer joy of it, not becuase they needed to get anywhere.

It occurs to me that we spend too much time just getting places. Rushing, scurrying. Not enough time just flying, revelling in the joy the world can provide us. The moments where everything else is stripped bare, and all there is is this, here, now. Yesterday afternoon was one of those moments, pure and unblemished.



Soon enough our attention was stolen by the tiniest of creatures. Somehow, amongst a tangle of limbs and hair, a ladybug was steadily trying to make her way across the trampoline. How she'd escaped the feet of my boys is beyond me, but when their attention was drawn to her, they stopped, instantly, sitting down as they watched her crawl over my hand.

She had such a long way to go, across our trampoline and her trip was fraught with danger. Samuel wanted so badly to 'play' with her, but Joel's hands carried her to safety. Lucky girl. I know how she feels.

Things are still dark. This is the deepest, blackest hole I've ever found myself in and the freefall terrifies me. But still, in amongst the darkness are moments of light. Sunny days, giggling boys, jasmine, colour, love. The love of my life holding my hand, whispering in my ear. Enormous smiles on the faces of my boys. Alexanders words of love - a constant in our home. Sammy's chubby little arms wrapped tight around my neck.

Worth hanging around for, no?

Cherished

It was after 1am when you found me, sitting in a dark room, just staring. The tears would not, somehow could not stop falling, tracing their way down my face, following the path of the thousands that had come before.

Your voice startled me, and I jumped. You touched my face, and the tears were no longer silent. Huge, wretched sobs left my body, and I could not make them stop. For the second time that day, you watched me come completely unhinged.

Your arms immediately wrapped around me and you led me to our bed. Your hands didn't leave me for a moment as you helped me under the covers. I was no help. I couldn't not seem to make my arms move or make the tears stop.

We've been married 12 years, and while we are completely tactile, when we sleep, we keep to our own space. Neither of us can fall asleep wrapped in each other's arms. But you turned off the lights and got into bed, pulling me close to you.



Your arms were strong around me, firm, but so gentle, almost reverant. You stroked my hair and whispered to me. You, my sweet, quiet man of few words spoke to me. You spoke of love and lust. You spoke to me about how much you love me, and our family. You told me storied, reminding me of our earlier days, retelling stories from our honeymoon. (Yes. It may have been 12 years ago, but really. Who orders garlic prawns on their honeymoon????).

You paid attention to my body, knowing when I was tense and needing you to back up a bit, knowing when I needed to be moulded to your body. You knew when you needed to speak, whispering in my ear, and you knew when it was time to just hold me.

You help my head in your hands as you traced kisses all over my face - kissing tears, my nose, my lips, my forehead. You were almost reverant as you kissed me, I dont' know that I've ever felt so cherished.



You instinctively knew the moment our kisses changed, taking on more urgency than before. You traced my lip with your tongue, and just knew that I would respond. I had known you were affected, for an hour, I could feel you. But you held back, made no attempt at all to change the course of our moment.

You made love to me so gently and it was one of the purest, most beautiful moments of my life. Not a word was spoken by either of us, and yet our love was communicated so strongly, so perfectly.

I think maybe you came in and saved me all over again. Thank you, my love. I am so lucky to have you, and so determined to just never let go.

I am yours.

He watches

He held me while I cried for 3 hours straight last night. Stroked my hair, whispered words of devotion.

He is working from here today. I feel my mersyndol kicking in, the codeine hopefully enough to push me into the sleep I didn't have last night.


I hear him pottering around, singing softly. He watches over me, not willing to leave my side today. Not willing to have me alone.

For now, I am safe. He makes me safe. Makes me willing to keep trying.

I can hear them whisper..

Blessed

In just 2 weeks, it will be our wedding anniversary. I've loved this man for more than a third of my life.




A third. It feels like more. It feels like I've loved him longer. It feels like my heart already knew him. My heart was already in love with him.




I am blessed.

Unexpected.

This is extraordinary.

Actually

So far, they've taken it extraordinarly well. Far better than I deserve. I'm not saying that for you all to tell me I deserve it. I don't. I've left them in a terrible position, at a terrible time. I had no choice, I'm falling apart at the seams. But that doesn't discount how hard I've made it for the rest of them.

And at this stage, they've been nothing but sweet and generous about it. I've already received 3 phone calls and a text.

See. This is why it was so hard to do. They deserve better, and I adore them.

Over.

There's a P&C meeting happening right now. I'm not at it. My resignation, however, is.


I'm fairly certain I just alienated my last girlfriends.