How did I not see this earlier!?

Ten years and a bit ago, when my tiny bundle of joy turned into a tiny bundle of mystery and confusion, I branched out my arms and tried to find help from anywhere. My baby wasn’t sleeping, he would become distressed to the point of not letting me move without him. I couldn’t put him down, I wasn’t able to hold him, swaddle him or any of the “normal” mother instinct type things. I needed advice and it was difficult to find.

It would come as no surprise then that the few special people who could help also became familiars to me. Not being allowed to call them friends (but thinking they are anyway) they still nestled themselves deeply in my heart as “the people who came to our rescue”.
As times went by and I would call on the various places where they worked, I would sometimes not see my familiar face around anymore. When inquiring about this, I would get answers like :”Oh, she’s retired” or :” He moved house and went to work somewhere else”.

This would happen every two or so years, I felt like I had to “break in” a new team all the time. It was exhausting but at the same time, rewarding as the circle of knowledge about Hypohidrotic Ectodermal Dysplasia (HED) grew around us. Every one person who knew, could tell another and another and so spread the knowledge to assist future children born with this. My, I would have loved to be the one who heard :”Yes, I have treated a child with HED before and I know exactly what to do”. Alas, it has only happened once. …Or, should I say, YES, it happened once! 🙂

I used to feel that they had in some way abandoned us, left our lifeline cut. I felt miserable that they moved on to greener pastures while we were stuck, struggling to “teach” someone new.

This morning, I heard something on TV. Not related to any of this but it made me sit up and realize something.
The people who changed jobs didn’t abandon us. They didn’t do it to leave the parents high and dry. They did what ever any employee is able to do, they simply changed their jobs.!

My feelings of sadness and resentment were not because they left, they came about because I realized something. I realized that I am a Mother Forever! I can’t change my job when I want to get a better pay check or when the stress gets to me. I am in this 24/7

How did I not see this earlier? I think I was still clinging to this hope that one day, someone I grew close to in a job would turn out to be a friend who is living the parallel life with me.

With Love and Support,

Tarja Kelly

From 10% to a huge 80% in two and a bit years!

So many of us take sight for granted, even I had no clear concept of what it would be like to be vision impaired. I never in my dreams thought that one of our children would be severely impaired.

We had no suspicions about Nathanael’s reluctance to stand and walk. He was small, very timid and his twin sister would take over and do things for him. He was a bit unsteady on his feet and much prefered to be crawling around. He would get a fright if someone approached him from the left but not any other time. He had great difficulty climbing the stairs, going down was an absolute nightmare. He couldn’t catch a ball, he wouldn’t climb a chair and riding a trike, well that was a no-go outside.

Because the two older boys were seeing an eye doctor anyway we arranged to have Nathanael and Siobhan checked one day as well. The dry eye was the reason for Nathanael’s visit, Siobhan was the one I was concerned about as her eye kept turning in.

Well, we went to the appointment and Nathanael sat in the huge chair, right eye covered, looking at a huge duck silhouette opposite and shaking his head. “What is the shape sweety?” I prompted after the Dr tried unsuccessfully to get him to answer. Nathanael was straining forward in the seat now, trying to look around his cover over the right eye. After a while he said:” I don’t know mummy. It’s too hard”
I looked at the Doctor, the Doctor looked at me and he removed the patch from Nathanael’s right eye. “Ah! It’s a duckie!” he exclaimed, smiling. My heart fell into my lap. What is the matter with his eyes? He has been doing so well, not bumping into anything…..well, only not bumping into things when it had been there for a long time. Oh no!

The results of the eye measurement was +4 in the right eye and +6 in the left. I still don’t know what it all means but I do know it started a wave of adjustments and, well, not much else. He was so good with eye drops and wearing his glasses every now and again that I didn’t really get too worried.  We had instruction to patch his right eye for a few hours when we could and to keep up the appointments every 4 months.

What I gleaned was that because his left eye was so weak it never had to work and recognise anything so the brain couldn’t interpret what it was seeing because the right eye could make it out.

I didn’t know though, that his right eye was severely impaired as well and that he needed glasses to see properly even through that eye. He compensated so well, it really wasn’t too apparent until he started school and he had trouble learning to read.

With great patience and a wonderfully written letter to the Teacher, the eye doctor arranged for Nathanael to have his right eye covered for 2 hours every school day during the close work in class. The combination of the patch and his glasses helped his brain rewire and start to see what he was looking at.

This was continued into this year and about a month ago we went to see the ophthalmologist again. Nathanael did so well! He was able to read the letters right down to the 6th row he put up. Again, I didn’t delve too deep into the technical things but he was reading things I had difficulty seeing and that was spectacular.  When the Dr turned to me and said:” He has come from 10% vision to 80% vision, I am afraid that is about the best we can do for him” I almost cried. He was apologising for not getting him to 100% yet having him at even 50% was such a fantastic feeling. I turned around and told him that he didn’t have to say sorry for falling 20% short, I was overwhelmed we made it to 70% more than he ever had.

The next moment I remember feeling an overwhelming shock. I had the “what if” moment of my days. What if we didn’t have children with HED? What if they didn’t have dry eyes? What if we never took Nathanael to the eye doctor at 4 years old? He would not have been picked up until the school raised concerns about his reading. Then it would have been too late to save anything. We would have a legally blind son…..What a blessing Hypohidrotic Ectodermal Dysplasia turned out to be for Nathanael. His eyesight was inherited from his father and had nothing to do with HED.
Our little man came from 10% to 80% in two and a bit years and we are very proud of him!

With love and support,

Tarja

Lest We Forget

This morning I packed the red bag with two epi-pens, an asthma inhaler, band aids and 8 tetra drinks. I also packed some water and my camera and I was ready.

The kids were excited, it’s ANZAC Day and they told their teachers they want to march with their school. So, we gathered together their uniforms and they promptly put them on. We brushed the boy’s hair and braided hers and the hats went on.

“C’mon daddy, let’s go!” They yelled as they ran out the door to get into the car. We had to drive a bit to get to the marshalling area. I remember from past years, the parking is atrocious when the main street of town is blocked off for the parade so I was a little worried as to where we would end up.

The silly thing was, I was remembering the years we would go it alone. One driver two kids, not two drivers 4 kids. Back then, we would toss-up if we would park at the end of the march route, walk back to the marshalling area and then march with the crowd, or, we would park at the start and then have to drag exhausted kids back to the car. Option two usually got the thumbs down. It was harder to take them back to the beginning after the march as they would be totally worn out, not only from the walk but also the wait to begin.

We were so fortunate today that I hopped out with the three who wanted to march at the marshalling area and Hubby then went and parked at the end of the route with the one who didn’t want to march. Best of both worlds and even better, I wouldn’t end up carrying one or two of the boys back to the car.

The excitement of seeing their school friends lined up, waiting for their turn to start was everywhere. Children from all the schools in the area were represented under their own banners and each school had their captains carrying a wreath to lay at the Cenotaph.
A digger came along the ranks, his shaky hands full of paper flags and his medals on his chest. His smiles as he handed flags to the school children were a joy to see. The pride in the generations showing their respect for the country and the men who fought visible on his lined face. It was all I could do not to go and give him a big hug thank you.

My three marching kids were lined up in height order and so they got spread out along the school line quite a way. Didn’t matter, I knew they would find me with my heavy red bag, marching along with them.

The drums warmed up and the bands began to play and a plane made the most amazing fly over. It was so low I swear we could reach up and touch the wheels on the undercarriage. The children started to walk, they waved their flags and the crowds lining the street clapped as they passed.

Watching the boys faces I saw that they were having a bit of trouble processing the noise. It has always been like this and this year I was very proud how they coped with it. The walk was at a pleasant pace, the weather was warm but with a stiff breeze from the river. It was an amazing day.

We made it to the Cenotaph and the boys were finished, totally understandable, the march was about a kilometer long, in the sun. After saying goodbye to the school principal and some of their friends we headed back to the car. But, not before the boys posed in front of an army jeep which had transported a couple of diggers along the route.

It was an amazing experience and all the kids said they will do it again next year. We got through it without any heat issues and I was pleased to be way over prepared. Our children and us were able to pay our respects to the soldiers and it felt right.

ANZAC Day, Lest We Forget

With Love and Support,

Tarja

Autistic?

My girl…….what can I say. She had a very bad morning in the lunch department and it is partially my fault.

Let me digress for a second and explain some past.

After we moved in to this house we set up some early school routines so we would be able to have akin to a well oiled machine getting ready in the morning. We set up school bag racks and individual shoe spots as well as a breakfast bar where they can eat while I make and pack their lunches. It was all working very well. The kids loved the individual responsibilities and ride in their spots grew.

One morning I was packing her lunch and she cried. After what seemed like hours of non verbal squeaks and cries, I gleaned that her drink was standing on edge, not lying flat in her box. As soon as we “fixed” it she finished eating her breakfast and put her lunch in her bag. No lingering tears or anything, it was like the drink in the correct position switched her over to “cope” from total meltdown.

After school I asked her if she wants to pack her own lunch so she can make it right and we can save time and tears the next morning. She said yes and I explained I would put out the food she can have and she can place it anywhere in her box she wants. Yes, she understood and was quite excited.

Well, this morning I was pressed for time and space on the kitchen bench so I decided to place all her food on a plate. She could then fill her containers as she sees fit and we’d have no issues.

She has 2 little square boxes, 2 little round ones and a flat rectangle. She puts apple pieces in one, 5 tiny oreos in another, chicken flavoured rice crackers in a round one and green seedless grapes into a square one. I had all but the grapes on the plate and that is where the problem happened. The oreos are a little crumbly, they leave tiny black dots where they sit. The apple touched the oreos and got tiny little black dots on it.

20 minutes later she was able to vocalize the problem and we rinsed the apple and all was ok….until she went to put the chicken crackers into the other round one. This one was about 5 minutes of crying before she told me there were black dots in both containers and she can’t work out how they got into the one where the white rice crackers go into. I washed it and she filled it up.

By then, Sebastian, who had gone to catch the bus, came back home. The bus had left him standing at the corner because it was a different driver. So, in a way, she did me a favour. We would have already been on our way to school, unaware of Sebastian’s plight.

So, rice crackers fixed, everything packed as per her liking she was ready for school.

I packed all 4 into the car and off we went. Arriving at school we waited at the classrooms as normal. When the bell went and I stayed for her to sit in her line, she hid behind me. I still had to bring Matthew to class (no transport means he needs me to wait at his room too) and she wouldn’t let me go.

Crocodile tears ran down her face and she just looked at me and squealed, no talk at all. The teacher didn’t say much, she said it’s ok to take her to Matt’s class and bring her back.

As we walked away, she whispered through her tears, “Too many kids. There’s too many children in my class”

I saw, there were three new boys sitting in her line, what a lovely surprise to spring on her.

While I was figuring out what to do with her and how to tell the teacher, a beautiful teacher’s aide came up to us and said hello. In passing I mentioned Siobhan’s distress and told her that there are too many kids and she said “Well missy, you have never seen my office yet, have you!? Come on and I’ll show you the spot where I put the tadpoles your mum brought me once.”
Siobhan took her hand as she listened, I quietly let go and walked on with Matthew and when I looked back, she was holding the thermos for the teacher and happily walking away with her.

Now, I have an Autistic son who has some traits Siobhan exhibited but she has about 5 more severe ones that he NEVER had. I’ve been told she is copying his behaviour yet he has not had these issues for a very long time as we speak his language and he has not been distressed over them.

I have an Autistic girl struggling with life. Why is nobody else seeing this? What makes it so difficult to get a girl diagnosed? Why do they want to give her drugs when that was never mentioned with my son?

Sorry, no answers yet. However I am still here

With Love & Support,

Tarja Kelly

Wow!

The last time I wrote I felt like I was being drowned by circumstances and I really truly felt like it would never end. We were living in a house which had things crawling, creeping and oozing from every crack and cranny. The light at the end of the tunnel had all but vanished….However, things have changed!

I feel like I fell asleep on the 18th of October 2010 when we sold our original home and I woke up on the 16th of December 2011 when we moved in to this house. We left a draughty beach shack with cockroaches and ants and mold sprinkled with asbestos for a purpose built insulated home with climate control and nowhere for dust mites to thrive. We are finally home where we belong and our journey, as difficult as it was, actually made this end station so much sweeter to experience.

About a month prior to moving in, we had notes home from school warning parents about whooping-cough. I was concerned but didn’t feel there was too much to worry about as all mine are immunised against it. We plodded on, the house was in its end stages of building and there were other health issues happening. Had one child home every afternoon, early, because he won’t swim and the other was getting skin issues happening because of the swimming every day. Couldn’t win.

I was supposed to pack and be excited about the move yet here I was discovering cockroach plagues in the boxes I had already packed. I was meant to go to assemblies and meetings and I either forgot or couldn’t attend. It was mayhem, I even let go of my treasured Toastmasters because I simply couldn’t handle anything anymore. My basket was full,had anyone added another thing and I would have possibly cracked.

The feeling of guilt for having made the kids live in a small dirty house for over a year was so strong that everything anyone said felt like it was a personal attack.  My head was full of things I had to do and wanted to change so when anyone gave me any advice at all, it was too much.  Looking back on it, I can understand how I must have looked to others but I was living the pain, I couldn’t see the end, I wasn’t about to let anyone confirm my feelings.

When moving day finally came, I was so worried. I had clutter coming out of my ears and the last move was still fresh in my mind. That lot had come in and almost abused us for not being packed and clearing out the drawers. Every other moving company we had ever encountered before actually helped pack, it was quite disturbing to find out that they wouldn’t. Well, the company we asked to help out this time was absolutely faultless. A family team, he did all the heavy lifting with hubby and an offsider and she helped me pack as we went. No snide remarks on the side about how much stuff we have, no issues with chests of drawers still full, they were simply wonderful.
Because we moved on the last day of school, I missed the big assembly where Nathanael finally collected his two gold cards. It still hurts when I think about it. The first thing he said when he came home was “Mum, where were you?” and I almost sat and cried there and then. So proud of my little man!

Well, the old place was empty by inspection time and I had spent a few good hours scrubbing it from head to toe so I went to our home and Hubby took care of the inspection. Getting the call to ask where the keys were I had to tell her that Hubby is at the house waiting for her to come, she never checked that. We failed that round, the owners went through with the real-estate worker and they picked on absolutely everything, even things that were there before we moved in.
Long story short, I went back and scrubbed again, cleaned all the stuff they were not happy with and found new things which the little animals brought in while we were out. We had photos of the condition before we moved in and I took photos of the condition we left it in and when we failed the second inspection I decided to act.

Needless to say, we were in the right and we have all sorted now.

Within two days of moving in, Matthew’s skin crashed. He couldn’t walk straight, his joints were seizing up and the skin was weeping almost everywhere. As it was right on the silly season and we know what to do, we decided to fix it ourselves and take him to the GP after all the holidays. Muddling through, we did it, we saved him a trip to A&E at the local hospital. What was really amazing was the atmosphere in the house as all this drama was going on. It didn’t feel like a major issue, it felt like something we could control, something we could handle. It was calming and reassuring. The others were fine as they each had their own space to go to when things got a bit distressing and the pressure was off. Even after we took him to the GP and found out he has Whooping cough, things were not dramatic as we were safe in the knowledge that all four kids would be able to retreat to their rooms should they become sick of being under each other’s feet.

We have just under two weeks of school holidays left. We have not really gone anywhere or done anything. The kids are happy exploring boxes of things they had not seen for a year or two and they are earning pocket money 🙂 They get 5 cents for every cockroach they kill and they are loving it. We are the happiest we have been in many years and it has been a long time coming. I feel guilty for having such a huge burden lifted from my shoulders where there are friends of mine still struggling with life in general. I wish I could share this with all of you and I am so sorry I can’t.

 If I was to describe our lives now as compared to a month ago all I could muster would be a solitary “WOW!”

The kitchen cupboard we never used

 

With love & support,

Tarja Kelly

May Contain Traces Of…….!

I was a “couldn’t be so bad” and “she’ll be right mate” type of person and I didn’t even realise it for the longest time.  Sure, my boys were severely allergic to certain things but we were not going to cut back their diet even more just because “it may contain traces of…”.

Well! Last night, I went out. I have a meeting I attend quite regularly and between my husband and I we have a system worked out regarding dinner. The kids are treated to hot dogs and he has pies and all is well, usually….

Yesterday, I took the kids on a little trip. It is school holidays and they are quite a handful to entertain and had I kept them home, they would have eaten all the stores I had for the next three days.

On the way home, I realized what day it was and after a quick search in my mind I also remembered we had no dinner. Not wanting to take them to the shopping center and have them run wild with “I want’s” I went to the easy option, the local ALDI. It’s great, I shop there all the time. It is also handy because it is a single complex and you don’t have to walk the mall to get to its doors.

The kids picked their favorites and I didn’t mind. At 99 cents, could I really complain? I also grabbed the only type of hot dog they had and with a sigh of relief I found hot dog rolls as well. No complaints in store tonight when they have to eat hot dogs in normal bread LOL has happened, never you mind that.

That evening hubby made dinner and everything was fine until I came home an hour later. Matthew was still wrapped in his bandages, due to be changed that evening but he was complaining he was getting itchier. By the time I had changed my clothes and sat down, he was ripping his bandages off.

Now, I may seem cold-hearted and ignorant to observers here but I have had this for 8 years! He has been doing this for eight years, on and off.  He had done it before (the morning after) when he had eaten something with egg residue in it so I didn’t make an immediate connection last night. I was tired, hungry and dizzy and he was doing the “usual” spiel he has just before we change his bandages.

What was different last night? He destroyed his skin within 5 minutes!  Even daddy couldn’t soothe him with calming words as I got things ready. His arms looked like raw skinned meat and though there was blood, he was weeping clear liquid as well. I couldn’t get the fresh bandages on fast enough, he had ripped himself completely before anyone could act. After the bandages and antihistamines he eventually went to bed and slept well.

This morning, with a clear head and a heavy heart I retraced the night and to my horror found where I had slipped up in a major way. I went on the assumption that because the buns looked like the others we usually get, and the packet was almost identical, that the hot dog buns would be “safe”. They actually should have been safe BUT for the “May Contain Traces of Sesame”. Turns out that there WAS a trace of sesame and this is the result of it

I feel so stupid for not reading everything. I feel so slack for thinking that “It’ll be right” and traces couldn’t possibly be so bad. I feel sick that I could have been so reckless!

From now until forever, I am going to read all the warnings, and the ones I have to translate because this is not a trifling matter, it is life or death. Having been so vigilant with all the outside factors I need to also revisit the inside ones and re-acquaint myself with the “rules”.

May Contain Traces Of = Take heed and if in doubt DON’T eat!

With Love & Support,

Tarja Kelly

Just because….

Just a little warning before I begin, I am not writing this because I need advice or magic remedies. What we are doing is enough and works well. This is simply to give you all an insight of “why”. That is why I called it “Just because…”

I stay away from synthetic clothes and woollen fabrics. All of us wear cotton because it doesn’t itch and works well in all weather conditions. When I toss them all in the wash, I use the tried and true Omo matic sensitive liquid which our family has used for generations. Yes, I did a test run with other things and either they didn’t wash as well or they caused skin reactions on the boys. I will not be changing my detergent 🙂 thank you.

In the rinse goes white vinegar. It takes all the residue out of our clothes and leaves them smelling, well, neutral. When I toss the clothes into the dryer they come out just as fluffy and soft as if I had used a softener on the market. Except, these don’t make the eczema come out. We don’t smell like vinegar but we also don’t smell like flower fresh store-bought people either.

Our bath times are fun and games too. One child at a time, bath emptied and rinsed and on a bad eczema day, disinfected as well, between each child. Yes, I wish I could my girl in for a quick bath and save the water to put all three boys in together. However, that is not possible.

I have my girl in first. She gets shampoo and sometimes bubbles, lucky girl, she has no skin issues. Then, the oldest, he doesn’t like the smell of the bubbles and all those things so he just uses the water and sensitive soap and does the lightning boy wash pre teens are expert at. I don’t mind really, he isn’t a sweaty smelly kid and it really is just to get the dust off from a day’s play.

Eczema kids next, youngest  first. Fresh bath water and a tiny dose of vinegar in it to neutralize the PH and he is screaming the whole time. The quickest wash, he usually stands and I have to tip the water over him gently and fast so we can get him out and dry asap. We pat him dry and cream him up and his skin is weeping clear liquid from every millimeter. Needless to say, we don’t put him through this every night.

Then the middle one, he also screams in pain every time he gets into the bath. The water is not hot, we have it at 34 degrees as they complain it is too hot any other time. He sits but only for a short time too. Arms go in and come back out and we pat him dry and cream him up all the while watching the cream sheet off him from the weeping all over. His baths are not every night either. Traumatic for him and us to say the least.

After their baths they smell… neutral. None of that apple fresh shampoo smell, no berry delicious body wash smell, nothing. Definitely no body odours either! Just clean kids.

Aftershave, well, they are too young for that yet so, no. They don’t use antiperspirants, LOL they have Hypohidrotic Ectodermal Dysplasia, they don’t perspire. The sorbolene we use has no delightful perfume in it as it would leave the boys with a not so delightful rash. Can’t use the goat soap because it is full of nuts and perfume too.

So, in a nutshell, what I am telling you all out there in cyberworld, if you should meet us and wonder why we don’t smell like we have baby-fresh skin and flower-drenched clothes, it’s Just Because!

With Love & Support

Tarja Kelly

Friday Morning

“Do you want a yellow bowl? Or I can wash you a blue one.” “I want a mummy spoon….” “I’m having a daddy spoon…” “Can you reach the weetbix for me?” “Who wants me to pour some milk?….” ” Can you help me with the sugar?” “WHICH CHANEL IS Ben Ten ON???” “Shhhhhh, Mummy’s asleep!”

I lay in my bed, eyes shut but wide awake, smiling to myself as I experienced, for the first time in 9 years, my children looking after each other without having to wake me first. Add to that the sound of cicadas and horses outside the window, the roar of the ocean not to be drowned out by the distant sound of cars on the main road and my Friday Morning was glorious.

For all the worries that lay ahead for us today, I had a blissful start and I had the energy to keep going.

When I did finally get up, I was greeted with the delighted squeals from the Twins and the “hey” from my 9yo. Master 7 ran and cuddled me as hard as he could.

“We was up so early mum!” he reported, ” I got the bowls but there was one dirty so Bas washed it for me, my hand hurts from scratching at night, but he washed it and helped me get the weetbix and opened the sugar and we was very quiet for you mum”

The other three agreed and added their own versions ” I was up first and I found the remote and I got to see bookoboo” “What? You saw it and didn’t wake me? I want to see it too, when is it on again?” Well, we will have to see if it is repeated in the middle of the day as so many shows are. “Mum, do you want the remote or can we watch more scoobydoo?”

Well, I would love to see the 8am news but as I got up just a little late, they would already be at the weather so I let them keep it on the shows they enjoy. Making myself a nice coffee (warm these days as my munchkins are old enough not to spill anymore) and sitting at the table, I go online and see which of my HED friends are there.

The kids are slowly getting into the groove of the day and I noticed I have spent the better half of two hours online. It is the days like this one where I realise, times can be tough and they will get tough again but these days here WILL prevail.

With love and support,

Tarja Kelly

One day….

A rainy day blog for a rainy day feeling.

My day started at 1am last night. Has been for the last 4 weeks now.

Mr Magoo, my youngest, starts screaming in his sleep. When I go to him, he is writhing in pain and rubbing his feet together until they bleed. He is scratching his sides too, when I go to touch him and comfort him, he screams and I can feel there’s blood seeping there too. This goes on for 1/2 an hour at least, culminates in a humongous fart and he sleeps on as if nothing has happened.

I go back to bed, shaken, nothing I can do.

He ‘wakes’ again at 2.30 am and again at 4am, by then he is in our bed. We can’t touch him, we can’t cuddle him, we can’t do anything because he reacts so violently and in pain. Always a fart and he sleeps again.

At 7.30 am he is awake for the day. He comes out howling, bent like an old man. Abuses me when I ask if I can help, screaming “ouch, mummy” over and over but when I go to touch him he screams to make me go away.

By now, all the healed bits of his eczema are raw again and his siblings are waking up . As heartbroken as I am, I can not do anything as he is already overstimulated by the war going on in his body.

My princess comes out, I made the mistake of engaging with her. She isn’t ready today and falls to the floor like a rag doll, screams of frustration soon follow. We know she is on the spectrum, we just have not had a formal assessment as yet. I have to leave her be until she is ready to accept me.

By now the other two are up. My little man is so good, he comes out and sits quietly, just shielding himself from the turmoil going on around him. Hugs and kisses for the first time today, I love them so much. My big boy comes out too, he is very set in routine so I have more cuddles too as I dash and make his breakfast. This one is autistic and he has a lovely rulebook I can follow (with a little bit of leeway) and he is happy and companionable too.

Mr Magoo has finally been able to pass a poo. Thank god, he is back to his sweet little boy phase. Kisses and hugs and he wants to eat. I am so happy.

My princess, she has calmed a little but it is still eggshells as the ‘wrong’ word or glance can set her off again. I don’t blame her, it has been a pretty traumatic morning even without having to deal with her own issues. I know she’s ok when she gives me a hug. As long as I don’t say a word, I’m fine.

It’s 11.30 am, three of the kids have eaten, I have a knot in my stomach. Mornings are not good for me, I can’t relax until after 6 pm if I am lucky. Food is a curse in this house, I hate it, I don’t like to cook, I don’t like eating, I can’t relax to enjoy the taste. I know if I feed two of my children the ‘wrong’ food, the eczema comes back and then the day is over.

I do have escapes here, I make fairies, I put people into pictures of fantasy and wonder. Some days I wish I could dive in and hide under the mushroom too but then I remember how horrible it feels, not to have control over your own body and it’s feelings and I know I have to be there for the kids.

I am blessed every morning when I wake to have all four of my children and my husband with me. If they didn’t wake at night, I would be worried that something is going wrong. The worst night sleep I ever had, they all slept the whole 10 hours. ..I was awake almost the entire night.

Mr Magoo will be examined come hell or high water, I want to know what is going on inside his guts. We have a restricted diet and many guidelines so forgive me if I don’t follow all the advice I’ll be getting from publishing this. Many of you are carers yourselves, I know, you know where I am coming from.

The sun will shine tomorrow!

With Love & Support,

Tarja Kelly

Utter restraint, just keep smiling

I have a bone to pick. A rather large one, so bear with me.

My family is big, I have three boys and a girl (on a bad day I have 4 boys but he doesn’t like being called that. I suppose he is married to me).

Some days, when I take all my children shopping with me, I get “attacked” by people trying to tell me what I can do better or could have avoided all together. For example… ” Oh your poor boys. My little one used to have eczema like them. Oh no, nowhere near as bad as yours have it. They do look like they are in so much pain” (Note: Both the boys in so much pain, are chasing each other around a play ride, squealing and laughing) “I used to use blah blah and it went overnight. Tell me, do you……?”

In my head the resulting answer from me is something like this. “Well, if your little one had eczema like mine get, and blah blah took it away overnight, how come I don’t see your name on a jar of miracle cream? I just want to get milk and bread! Not a cure for something we have the upper hand on right now. I am happy, my family is happy! Bugger off and let me go to Woolies before the kids get cranky and I’ll be stuck here for two hours.”

To the do-gooder I say, “I wish I had brought a pen and paper. Sounds so interesting, I might give it a go. Thank you so much, have a nice day.”

This won’t have been the first conversation along those lines on the same trip either. I have had days where I had 5 people approach me in different parts of the centre to give me an ear full of “miracle this” and “you did that wrong”.

Now, why would I do this to myself? Why do I practically invite progressive do-gooders to “assault” me every time I go out with the kids? Why should my family even attract them? Are we sending out “please help us for the love of God” signals? Can anyone tell me how to turn them off?

I have even been told that it is my fault the boys have Hypohidrotic Ectodermal Dysplasia.

Yes, I kid you not!

Well, guess what…I DID!

I did not, however, poison my DNA by washing with soap, eating off plastic plates, using laundry detergent and dishwasher tablets. I did not break it by eating processed foods, brushing with Colgate or by using shampoo. I didn’t drink, I’ve never smoked and I even hold my breath when I use bug spray.

I gave my boys Hypohidrotic Ectodermal Dysplasia, because my mum gave it to me, her mother gave it to her and her grandmother got it from her mother!

So PLEASE, I am a mother of four, taking my kids to the shops for food, not for 101 miracle cures for eczema and HED!

With Love & Support, (and feeling a bit better after my rant),

Tarja Kelly