Allergy testing round 7

Harper had allergy testing this week. It happens once a year. As the weeks draw closer my mind grows busy, I feel like I can't quite get it together, because sometimes I'm coping and sometimes I'm not, because the simple truth is we're all coping until we're not. I'm restless and full of what ifs, I hope for change. I hope for the end. The end of this journey, the end of the never ending fear. The end of my boy feeling different. But Hope as I must, I know there's a place for hope and there's a place for reality, so I never hope too much, because I know that disappointment hits hard when you're hopeful. So instead I keep going, I live the life that is now because what room is there for day dreams that may never come. I try to be brave, I try to slowly let down these walls I've built, to take more risks in a controlled environment, but it's hard so freaking hard. And trust isn't earned easily when it's your child's life as stake.

Earlier this year Harper had an anaphylactic reaction to nuts, I didn't blog about it because it was hard to put into words, it was terrifying and incredibly disappointing, and honestly I just couldn't deal with writing that post. Not then, not now. I don't have the spare emotion to tell you what it's like to watch your child scream as their face swells, or to watch as their body covers with hundreds hives, and I definitely don't have the words to explain how my heart was beating so hard I thought I could hear it, or how my hands started to shake as I noticed an increase work of breathing. So instead I'll just say it was scary, it happened and I was scared.

We thought Harper was no longer allergic to nuts, we were slowly crossing them off our list, so the reaction was a shock. This week we found the culprit was cashew. His reading for milk has doubled, and egg has come down by one point.

Allergy testing round 7, one step forward two steps back. 

2 Steps Forward 1 Step Back. A Kinder Christmas Party.

He hung heavy from my neck, feeling the weight of his body brought memories of when he was young, a time that seems so long ago and just yesterday all at once, back then I comforted him from physical pain knowing soon he'd feel better, today I didn't know how to make him feel better. I knew nothing I could do would fix this, but still I tried. I tried words, knowing they wouldn't help, and when they didn't I held him tight and let him cry. My chest grew wet from the tears that seemed like they'd never stop. I could hear the frustration in his tears, I could feel the pain.

The pain of not belonging, the pain of wanting to fit in, the pain that sometimes life's just not fair.

I tried to remind him that this was the way it was, the way its always been. Was it him I was trying to talk down or was it me? I could feel we were being watched, what did the parents think as they saw Harper lose control? Maybe they thought he was spoilt, maybe they thought he was tired. Maybe they realised that the struggles of raising a child with allergies doesn't end with food. It's far deeper, and just maybe for a moment they got it, they saw the heartbreak here that cannot be fixed by words or cuddles.

2 steps forward, one step backwards. I've reminded myself of that saying over the years when things became hard. I just wish I reminded myself that when the step backwards comes it hits hard, it hurts, so be prepared to fall before it happens.


Written after attending a kinder break up party, where Harper had to sit on a table with Charlie and I and watch as his friends ran around playing and eating food he couldn't have.

Making the hard decisions

 Harper,

This week we had kinder orientation. This year I decided you'd repeat 3Yo kinder. I say I because this was more my choice than your dads, which just made the decision even harder. It's decisions like these I wish we agreed on, then I wouldn't spend months doubting mine, but here we are. My decision, my shoulders.

As I've started preparing you for a new class with different friends and different teachers I can tell your becoming anxious. Most days before kinder you ask if Kale will be there, worried about the day he won't. You've come a long way this year, made a best-friend, found independence and gained trust in yourself. This decision has been agonising, making me restless, as I jumped back and forth, so many times, knowing deep down this was always the decision I'd make.

I want to be able to send you on, to have you with the friends you've made and not be repeating what you've already learnt. But I just can't.

I need you to have a better understanding of your allergies by the time you reach school age. I need for you to be safe, and one more year gives you a better chance of outgrowing some, maybe all of your allergies. I want you to know this decision never had anything to do with you intelligence. ever. Your smart, there's no hiding that. Don't ever question it, don't ever doubt it.

Next year brings change, because the time-frames have been shortened only fruit will be served. You'll be able to sit with everyone, no longer be singled out, you'll no longer have an aid. A year to belong.

Some people think it should have been like this from the beginning, I'm no so sure. Although there's been heartbreaking times this year, you've learnt a lot, you're learning boundaries. The escape from our safe home has opened your eyes to dangers that weren't obvious to you before. I hope that a year of being just another child in the class brings you out, I hope you belong. But more than anything I hope it doesn't leave you devastated the following year when things become difficult again.

No one said this was going to be easy, making decisions for my life is hard. Making decisions for your life is harder.

Harper, my first born, my first love. It doesn't matter what year you start school, because you were born to be great.

I love you

Mama

Letting go, again. A life with allergies

His eyes opened wide and a smile spread across his face. His mother had spent the last three and half years getting to know her son, and yet at that moment the look on his face puzzled her, it wasn't one she'd seen before and it made her wonder what he'd say next.

Then he spoke, a simple sentence "Mama, today I sat with Bailey". 

At that moment his mother fought hard not to cry, she wanted to cry because he was so happy, because it was time, and because it shouldn't be this hard. Something as simple as a child being allowed to sit on a table with his friend to have a snack should not be this hard, and yet for him it is.

The decision to start 3YO Kinder this year has had incredible highs and extreme lows, the lowest moment being the day they held a breakfast event. I watched Harper as he watched 22 other children. He watched as they screamed with excitement, fighting over who they were going to sit with.
I lead Harper to a small table pushed into the corner, where he sat with me alone. I tried to distract him but it was no use. I couldn't get his attention. couldn't break his gaze. So instead I watched, I watched as he didn't take his eyes off the other children.
The other children didn't look at us, and Harper didn't ask me why he had to sit alone, I guess he's use to it, but after that day he told me he didn't want me to stay at kinder again.

Being a mother brings a lifetime full of moments where you have to let go, moments you have to put trust into others, put trust into your child, and pray everything will work out. Learning to loosen the reins is hard, but sometimes necessary.

My baby Bear, I'm so happy you can now sit with your friend, I'm so sorry it took me so long to let you. I'm just scared, the thought of something happening to you terrifies me. Sometimes the fear is overwhelming, it consumes me. I hope you don't remember feeling so isolated, I wish it wasn't like this. I'd do anything to take your allergies from you, but I can't. Baby steps. I love you.

An Fpies challenge

Today we packed up and headed to the children's hospital where Harper spent the day doing a food challenge to rolled oats.

On the way their I was so stressed I thought I was going to throw up, Harper's gone into shock 3 times, all have been from Oats. Watching your 6 month old baby turn into an unresponsive, pale rag doll isn't a memory that's easily forgotten. The thought of seeing it again didn't sit well.

After our failed milk challenge a couple of months ago, I'd lost hope, I felt almost close to certain he was going to react. But at times like this, these no room for being frightened, because sometimes you have to be brave. And sometimes being brave pays off, this time it did, in the form of Anzac biscuits being back on the menu.

Again I am reminded that slowly we are winning.

Kinder and letting go. A life with allergies.

The dvd tells me to use strong words like, life threatening allergies, as well as anaphylaxis.

I've just walked in from Harper's three year old kinder orientation.
I've gone back and forth on the decision to send him to kinder so many times i've lost count. The anxiety that comes with letting go sneaks up on me and when it does its breathtaking. I'm fine, and then I'm not, its hard and terrifying, and I just wish it was over. I wish I didn't have to worry about food anymore. I know it could be far worse, I'm thankful everyday I have a healthy child, but the idea of him being in a room with 22 other three year olds eating food that could kill him is a lot to get your head around.

We had a meeting with staff today where we prepared an action plan, they are trying to find room in the kinder budget for an aid to be with Harper, as before age 4 the government doesn't fund an aid, fingers crossed.

I stumbled onto an allergy forum the other day, There was a mother complaining about how she couldn't understand why the 21 children in her child's class had to go without peanuts because one child was allergic, she couldn't see how it was fair. People like this infuriate me. Your poor child is not able to eat peanut products for a couple of hours. I can imagine how this must be so terrible for you. Did you stop and think of what life is like for the family with the allergy?

I wonder what type of mum I would be if I didn't have first hand experience...

Would I complain because I couldn't send a PB and jelly sandwich to kinder? Would I get annoyed every time I had to check a food label before closing the lunch box? If it didn't effect my child directly would I care? I hope so.

Before Harper I didn't know, I didn't understand allergies, the way they impact you entire life.
But now,  now I know. I can tell you a dozen different names for milk, I can tell you if your child's eating while they play on the playground I'll have to leave. I know when your child rides in an ambulance they let you keep the sheet. I can tell you when you baby goes pale, floppy and lifeless in your arms your heart stops, but your mind races.

I pray I can stay calm, I hope I can be positive, there's no baby steps that come with handing over this kind of responsibility, I just have to educate them as well as I can, and have faith it will be ok.

So there is the long story of why it has been quite here. I've been spending my small amount of spare time, reading books and preparing for kinder.

Vegan lemon diva, cupcakes.

100 g Nuttelex (dairy-free butter)
3/4 cup caster sugar
1/2 tsp vanilla extract
The Zest of two lemons
2 tbs of organ egg replacer, mixed with 2tbs of water
1 1/3 cups self-raising flour
1/2 cup of soy milk

Icing:
125 g nuttelex butter
2 cups of icing sugar
11/2 tbs lemon juice

Pre heat oven to 180°, line a 12 hole muffin pan with paper cases.
Beat the butter, sugar and vanilla extract until light and creamy. Mix in lemon zest.

Mix the egg replacer with the water it will be foamy, continue beating mixture and add egg replacer.

Gently fold though the flour and soy milk, in two alternate bathers. Divide the mixture into paper cases and cook for 20 to 25 minutes or until springy when touched.

Allow cakes to cool.

To make the icing, beat the butter until light and creamy. Add the icing sugar a little at a time, beating constantly, add lemon juice. Ice onto cooled cakes.

These cakes are so, so, so, good. No one will have any idea they are vegan.

A pie.

Chicken pie, {Egg free & dairy free}

What you'll need

5 chicken thigh filets, cut into cubes

2 carrots, chopped

3 celery pieces, copped

1 zucchini, finally copped

1 brown onion, grated

1 leek, sliced

4 sheets of safe puff pastry, I have found the pampas puff pastry has no egg, milk or nuts

2 cloves of fresh garlic, crushed

2 tbs of plain flour

3 tsp of safe chicken stock powder 

olive oil

2 tbsp of nuttelex for greasing pie dish

Sauté the brown onion, leek and chicken in a saucepan for 5  min

add the remained vegetables and garlic, stirring, cook on med heat for 5 min

add 1 1/2 cups of water and chicken stock simmer until vegetables are cooked

grease two pie dishes, line with pastry, put a few holes in the pastry with a fork and cook for 10min at 180˚

By this time the vegetables should be cooked, mix the flour with a small amount of cool water to make a paste add the paste to thicken the sauce depending on how thick you like your sauce, you can add more water or flour.

Check the flavour, you may need to add more chicken stock, salt or pepper.

Pour into the pie dish and cover with puff pastry, put a few holes in the top with a fork

cook until browned around 30-40min on 180˚

Dear Harper,

Happy half birthday Harper! A lot has changed for us in the last six months, finally after removing soy from your diet you weight issues are getting better.

Yesterday we had you 18 month check up and guess what? Your back on the growth chart! On the 10th percentile. It's such a relief not to see your little ribs sticking out anymore! You still have a massive appetite, you eat so much and finally I can stop worrying about where it's going.

Six months ago

Later in the month we have another allergy review, I try not to get my hopes up but it's so hard not to, if only just one of your allergies has gone, it would make so much difference to our life.

Last time I was so devastated to find out they had all got worse, like I said I'm trying not to get my hopes up.

I pray that one day we will no longer have to base our life around food, safe places and a EPI-pen, that every time someone touches you I wont have to think do they have clean hands. That i'll be able to let you play at friends houses without first cleaning the floors.

Day care, play group, child care, kindergarden, school, friends house, camps, canteens, restaurant, birthdays parties, Christmas lunch, planes, holidays, overseas trips.

I know it could be a lot worse but it could also be a lot better.

This month you are really loving daddy, you hear the door close when your in the bath you get the biggest smile and say daddy! Daddy! When you wake up next to me in the morning you look over to see if dads home.

You stand on the edge on the couch and bang on the window, it's so dangerous and nothing I can say or do will stop you it's an all day battle that ends in us going out.

You tell me, No Way! About 20 times a day.

Talk heaps, pick up things really quickly, can unlock my iphone.

Wave your arms and get upset but haven't had a tantrum yet.  

Know when you're doing a wee and say wee but like to do it on the ground instead of the potty.

The last week you have been sleeping for 3 hours a day, you must know mummy needs a rest.

Point to my belly and say baby, kiss my belly. If i'm being sick and you can hear you make the noise as if doing a fake cough and say sick sick sick.


Sing songs, goes something like, row row row row row row...      boat.


I love you Harper, you're going to make an amazing big brother.