Three Ring Circus

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Suitably in awe and humbled.

Wow. Just Wow.

You are all amazing, wonderful people and I hope you all know that.

I am in awe of such a beautiful community and humbled by you.

It seems that you accept that ‘every circus has a sad clown’.

Thank you.

On with our regular programming.

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Honesty is the best policy.

 *please read this with the tongue in cheek, it so deserves*

Okay. I suck. I know it.

I hear you.

My posts are big fat downers that everyone is sick of hearing (thank you new troll for pointing that out).

Going off the crazy pills was obviously a bad idea.

I have no life.

The pead told me, in no uncertain terms, that I am neurotic. He is p*ssed off with me because I refused to let the ENT doctor operate on Ivy when she is immune suppressed. That’s okay, paed, I’ll take that on board.

Noted.

Thanks.

My ‘friend’ told me I was an unmotivated fat slob and that I needed to do something about that. Yes, way to help with my already overinflated ego. Thank you. I am so beautiful, I needed to be knocked down a peg or two.

Clearly I am a terrible, depressed, ugly, lowlife.

So, as of Monday I am going to change.

You all want happy floaty posts?

Done. (Scroll down after this post there is a cute picture of the boy and an equally cute story).

Expect less though because my brain just doesn’t work that way for, oh, 70% of the time.

The paed wants me to shut my yap about my worry and stress for Ivy?

Done, although I still will not agree to the operation.

Sorry ’bout that.

Oh and I won’t go back on the crazy pills.

 I will bite the bullet and take Ivy and Noah to playgroup, no matter the germs.

I will put them in the creche and go to the gym and I will watch what I put in my mouth. God forbid I be a slob (and a fat one at that).

Oh and my neuroses?

Perhaps he will appreciate them a bit more the next time I have to present to A&E. Until then, I will keep them to myself.

Truly.

Firmly put in my place.

Honesty really is the best policy.

Over and out.

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It’s hard to be angry when…

He climbs onto the bed, looking for me to read him a book but then changes direction when he discovers his father is home.

I put my hands out to him but he refuses…

“No, Mummy, you not read the book, Daddy read it”.

David and I have been having a ‘heated discussion’, so this obvious favouritism erks me even more.

” Fine, Daddy can read it”, I proclaim, “we all know he is the be all and end all”.

As I get up to leave the room, making it to the doorwell, Noah pipes up and says…

“No Mummy, Daddy is not the beetle and the egg -  all”!

All my defences fall away as I double up in mirth and wonder at this innocent that is my son.

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The club nobody wants to belong to…

I couldn’t sleep last night.

The kids all came home from school with tales of a friend, whose baby brother had died,last week, at two months, from SIDS. They didn’t know when she would be back at school but they did know how strange it would be for her.

They all came to me seperately with questions and memories of when we had our own dead baby.

They told me how weird it was to go back, how everyone treated them like they were the new kids in school, all over again.

They wondered what they might say to their friend to help to make things better for her, because not alot that was said to them gave them any comfort.

They said it was worse for the girl, who had had two whole months to get to know her baby brother, whereas they had only had five days. They couldn’t imagine, they said. How bad it was.

Last night, my heart was heavy for that mum, of the baby, who died from SIDS, at two months of age because it is awful and it is unfair and it is a heavy burden to carry, when you bury your dead baby. I wondered if there was anything I could do, having been there a whole four years ago and realised there was nothing.

I can make food.

Food was the one thing that David and I could not do when we got home and we were lucky that people cooked for us and kept the kids with meals for about a month because I had forgotten how to make a cheese sandwich, in those first few weeks.

So, I will cook but it won’t help the way I really want to help.

I can give her books and support groups.

I read everything I could in those first few months. Anything about dead babies and how to cope. I soaked it up, trying to imagine the people who had written about their time, trying to see into their souls and if they ever really did recover.

I trawled the forums and support sites and spoke to anyone who would listen. Anyone who could identify with being part of the dead baby club was my friend. I could be real.

So, I will give her my books and a list of all the groups that helped me but it still won’t be what this mum needs.

What she needs is her baby back. What she needs is to take back time and stop history.

I can send a card and say I am sorry. I know all the things to say and not to say because four years ago I had my own dead baby and I was hearing all the same things.

It won’t help though. None of it will.

It’s not that she won’t appreciate it, not that she won’t hear the words. In four years time, she will be thankful that people reached out but not now.

Nothing will help her now.

Her heart will be shattered and even though she has other children, it will be so hard for her to get up every day. It will be hard for her to carry on and bring normality to the others. It will be hard to look at them without fear of losing them too, creeping into her existence.

Her mind will be filled with what if’s and why’s and going over the day that she walked into her baby’s room and found him not breathing. She will rummage through all her photos and find keepsakes that still have his scent and she will cry. Not just cry, she will weep, that sodden, deep, soulful mourning that only a mother, who has a dead baby, can. It will come from the very depths of her being, so deep, in fact that she will wonder, in later years, who that person was and where those heavy guilt laden sobs came from.

She will feel selfish and greedy when she can’t let her other children hold or have his favourite things, things that she will hold close to her because that is all she has now. Things. Memories of a much wanted baby boy.

She will learn who she can rely on, talk to, be open and honest with and who she will need to put her happy mask on for. Because people can only pretend to want to hear about a dead baby for so long. She will not be allowed to grieve forever in open society. This is a lesson she will learn quickly.

She will crave normality when there is nothing normal about her life at all. She will wish to be the woman she was before…before her baby died.

This morning I can’t seem to move her from my head. This Mum, who is now part of the worst club on earth and my heart is heavy because I know; grief lasts forever.

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Throwing out a line.

Someone asked me what it meant for Ivy to be immune deficient and I have had a really hard time coming up with a description until someone else from a support group I’ve joined recently did just that…

” The best way I can describe what is going on is this:
 A person with a normal immune system kills germs before they set up 
infection. It’s rare for them to get an infection — but when they
do they call it “being sick.” A person with [immune deficiency]
doesn’t  even know that that germ is in the body until it has set up shop
and multiplied enough to notify the killer-T cells.

Therefore they are “sick” all the time.

Their bodies are fighting germs AFTER they
have set up infections (if they have t-cells in tact).

IgG causes the body to prepare for and prevent infections. With low IgG - there is no
preventive stuff going on. All the body can produce is attack
after the fact. So…. for a person walking around with [immune deficiency], they are
currently fighting what other people would call “sickness” every single day
of their lives.

Their muscles ache, their bones hurt, their eyes
hurt, their tummies hurt, they feel fatigued and crampy and cranky all
the time”.

Dale, mum to Katy, who has chronic variable immune deficiency.

That, to me, is an excellent description of what Ivy goes through and along with the effects of the medication that she takes for the Pemphigus, makes for a pretty grumpy girl, alot of the time. When she is acutely unwell or has an active cycle of blisters everything is a thousand times worse.

There is no going back from this. There will be no amazing change in her health. If she is lucky she will have improved health when she is in her school aged years, as Imogen has but she will still catch everything and take twice as long to get better than the average person.

My heart aches for her every single day.

It is a hard thing for alot of people to understand, I guess. It has taken me a while to get my head around the fact that we are going through this again with Ivy and worse than it was with Immy.

Tonight, she is a little worse for wear again and I am on my guard, just waiting and watching.

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Weekly Winners - Mother’s Day Edition.

Brought to you by Sarcastic Mom

Happy Mother’s Day to all of the Mummies out there. I hope that you were all spoiled with love.

While you are relaxing, why don’t you go to Sarcastic Mom’s and have a look at all the beautiful photography that Weekly Winners brings.

Mother’s Day is always a day of mixed emotions for me. It is a day when I celebrate the babies, who live in my house and mourn the babies who aren’t with me. I think about all the mother’s out there who have loved and lost, all the mummies in the making and all the Mums still waiting for their time.

Motherhood is complex. It is a mixed blessing and comes in many forms.

Natural, adoptive, fostering, good times and challenging ones, days full of sunshine and dark days of thunder and rain.

My day started at 3am. Brekkie was at 6 (no sleep in for this little black duck), presents at 7 and it was all over 10 minutes later!

Back to normality!

So here is a look into my motherhood…

The boy is getting tall.

We had a bonfire on Saturday night.

It was the kids’ first and they sat in wonder…

Dancing sky sparks.

Sitting in awe.

Mutual appreciation

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Last pre braces photo.

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Checking out Mother’s day booty

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My past, my present and my future…

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Noah the funny, Noah the cute!

Mummy: “Are you a sexy beast”?

Noah: “I not a sixty beast. I Noah Yilliam Androo Trickensa”!

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When you live in the boonies…

…and you need to have your daughter seen by an endocrinologist, expect that you will wait a very, very long time.

What is your best bet, for a waiting time, my friends?

Six weeks?

No.

Try six months!

That’s right, six months, that will see us just about up to Ivy and Noah’s 3rd birthday

in November.

The paed’s idea that we see this new doctor before we see him next, at the end of May, is one of pure fantasy. In fact, I think I heard the endo’s receptionist fall to the floor in a fit of hysterical giggles, when it was mentioned.

David was told, in no uncertain terms, that we could not actually make an appointment, that Ivy’s referral would be sent to a booking commitee (yes, you read it right) and we would then be allocated a time and date to which we would attend.

Bwa hahahahahahahahahahahahahaha!!!!!!!!!!!!!!

OMG, where are we living, people?

This insane life that we lead just got a little bit crazier.

Of course, Ivy is not a high priority.

I mean, what could possibly go wrong, with a two year old, on large doses of prednisone, in the next six months?!?!?!?!

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I’m not hip with that.

My almost twelve year old twins have just come home and announced to me that they are going out with two equally hormonal, prepubescent boys.

Best friends.

Boys.

Double dating my girls.

Ewwwwwwwwwwwwww!

Boy germs.

It wasn’t that long ago that we used to tease each other about boy germs if an offending species of the male variety brushed up against them and now they are ‘going out’ with them.

Apparently, all the twelve year olds have boyfriends.

Oh. My. Gawd.

I turn my back for a second and this happens.

They told me the creatures’ names but I couldn’t hear them. I had planted my fingers firmly in my ears and all I could hear was the thump thump thump of my heart pounding in my chest.

(Not listening, if I can’t hear you, it isn’t so).

I’m mature like that.

My babies.

Have boyfriends.

Oh, I know, it’s not serious boyfriendedness, nothing as concrete as kissing even,  at  least, not yet… but but but… it’s started and I’m not ready, not ready at all.

While we are on the subject, what is it with the still a fair way off from twelve year old boy, proclaiming his undying love for Bree the girl with the biggest boobs, in 6th grade? (tasteful, hey? Yes, that is why he is going out with her).

Over MSN, for goodness sake!

 He’s too young for that kind of stuff. Too young, I tell you!

MSN has now been banned from the kids’ computer.

Whoever thought it was a good idea to have toddlers and teenagers together?

I can’t possibly be expected to cope.

Where’s my corner?

I need to crawl into a small dark space and rock for a while.

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Ivy update - playing with fire?

We went to the paeditrician yesterday.

Ivy was well (touch wood touch wood touch wood).

Her chest was clear.

Her stomach not too tender.

Her ear looked much better. Still not fabulous but he said he could see a clear spot.

Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of scarring.

She didn’t have to have bloods this week.

Her blood pressure was ok.

Her heart rate was ok, no sign of a murmur. Still a little high.

She actually smiled at him and gave him a hug when it was time to go.

She wasn’t scared for the first time in weeks.

So now what?

Now it’s time to start reducing the Prednisone again, now it’s time to  push the Micophenolate up.

Micophenolate is the immune suppressant that she trialled in hospital. It has lots of neat side effects too.

Now it’s time to reduce the antibiotics.

Now it’s time to upset the apple cart, take chances, take risks, find a balance, play with fire.

And we have a plan (of course we do).

For when she gets sick

and for a new doctor, an endocrinologist

and for another visit to the immunologist.

Am I nervous?

You bet I am, after the Dapsone, I am down right scared.

For now, though, I am going to bask in her wellness and try not to think about the  what if’s or the next time.

Today, I am just going to enjoy her.