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

Awaking in the morning to find piles of skin in the bedrooms where they sat and scratched for the greater bulk of the night and feeling totally down on yourself that you were not strong enough to force them into bandages or at least cream.

Feeling their struggle as they try to find a way of coping with their issues and hearing their words of self questioning. Feeling the weight of stranger’s eyes as the judgment is always first and foremost and obviously, we are not trying hard enough to do the right thing.

It is not a pretty  world when you put yourself last because you feel like it is expected of you. It is not nice to sit in a quiet house, waiting for the call from school and wondering which one it is for this time. It doesn’t feel right that one should feel guilt for indulging in an ice-cream or a piece of cake or even a salad when you know that one or two of your children simply refuse to let “strange” food pass their lips.
It is NOT nice for a stranger to stand and tell you “Well, obviously you haven’t tried hard enough because there are ways around that”

I don’t assume to know what the situation is like in your home. Bully to you that your child eats all their veggies and hates sugar. Hurah to your upbringing that it offends you that my kids don’t like to wear socks. …..

Sticks and stones may break my bones but I’d rather 50 sticks and stones thrown at me than listen to the words which are not supposed to hurt me.

I had a whole day to myself, I had plans, I was happy. This has chewed an irretrievable hohle into a day I will never get back. I don’t feel like I deserved today anyway, now I know I was right.

On a note of I AM going to make it a happy rest of the day, I spoiled myself and bought a $6 packet of air drying clay. I am a little scared to open it yet because I am jinxed but today I am making something for myself!

With love and support,

Tarja Kelly

When you live with your nose to the grindstone you don’t often step back and look from another angle so life seems very ordinary and mundane yet here we are, living in a stuffy little hut which is being held up by the grace of Heaven, surrounded by an explosion of bugs and managing to keep 3 children with Hypohidrotic Ectodermal Dysplasia from having febrile meltdowns. When I look at it like that, I think life is quite extraordinary.

So, to give you all a picture of how we have resided for this last year. We moved from our small but owned home to this smaller, rented house in October last year.  We had to, there was nothing else available.  A little damp house without air-conditioning and thankfully, no carpet aside from the one in the main bedroom.

The kitchen is small, two of us can’t fit properly but it had a stove and a spot for the microwave and kettle. After opening one of the under bench cupboards, I decided we were not going to use them or the drawers because it was so icky (highly respected technical term this). Instead, we put one of our book shelves in the dining area and used it for our cutlery, cups and plates.  The bonus there was, it was the only shelf the mice never got on top of. The cereals were superbly protected  

There is a lovely spot for the fridge, sadly, it is for a small fridge. Our large fridge which we bought to support 6 people’s appetites fits beautifully but the doors don’t open all the way. The door hits the bench and we can’t use the drawers in the freezer because we can’t pull them out. Amazingly, the kids have stopped asking for ice cream, even they see the futility of trying to contort their little bodies to dig out a paddle-pop.

The livingroom is cozy, the lounge just fits but not comfortable to watch TV from. The kids love to huddle on the floor like a bundle of puppies and watch. I think it has brought them closer.

The main bedroom just fits our bed. We are so thankful we have a king sized bed as we often have visitors with nightmares during the night. As a result of the comfy big bed, we can’t open the big wardrobe doors. My clothes and hubby’s have been hanging on a portable rod in the shed. Kinda good because there’s no incentive to buy more stuff . I have nowhere to put it

When the weather is hot, the window air-conditioner we put in, struggles to cool the house for the boys. Matthew and Nathanael suffer the most because their eczema flares up the hotter it gets.  More often than not, we end up driving somewhere just to have them in the cool car, not because we had to go out.  

The bathroom…well, lets just say it works. The toilet, same. Just wish it wasn’t still all going into a pit outside the back window.

In the last couple of weeks the german cockroach invasion has started. I lift my kettle and they pour out of the base. I open the fridge and they demand to know why I interrupted their meals ….inside the fridge! They like hanging out inside the freezer and microwave too. They have invaded every electrical thing we own in the house. I am constantly squashing their babies as they scoot across the screen on my laptop. The kids have perfected their handball aim to take out a cockroach at 3 feet and I think we are single-handedly supporting the employees of bug spray factories.

So how is it we are still smiling?

Well, we are dry when it rains, we have shelter when the sun beats down. The children have found ways to cool themselves without relying solely on the air-conditioner.  Matthew has started to seek help when his skin is itchy and because of this, he has not had a serious outbreak for quite some time now.  Sebastian has become more confident and is turning into quite the young man. Siobhan has almost settled down and is really looking forward to having her own “totally girl” room. Nathanael, he has a way to go but he is the one who will just put on his shoes and go outside to play. He is so happy to be in the garden and throwing the boomerang or the ball, all on his own. I wish he had taken to water like he used to and he really needs to eat more, but, we are all working towards a goal.

Soon we will move again. I am tempted to leave 90% of our stuff in a skip and start fresh but we need to take furniture and our kitchen appliances.  Can’t afford everything new when you are building a house. I am just worried, how we are going to get them to the new home without the cockroaches? Thank goodness we have a very good friend who works in the bug eradication field

I was able to share with the children a multitude of nature’s wonders in this house which I never could have at the one we started at. We grew closer and stronger and we will remember all the fun and happy times we had here. Soon the horrible things will be a dim memory.

We WILL be in before Christmas! It is my light at the end of a long tunnel. It is the return of routine and the beginning of  new health. It’s almost Christmas…..

With love and support,

Tarja Kelly

Sebastian has dry eyes, he has no tears. He is lucky though, he has the lubricating oil. He has glasses for reading. We should be giving him eye drops every day to “wash” his eyes but he evades it as only a 9 year old boy can. By the time we notice he went under our radar, it is after bedtime and he is fast asleep. Foiled again!

Matthew also has dry eyes, no tears but oils. He comes to us to have drops when he is comfortable in his skin to notice he is “itchy” on his eyeballs. Very sporadic but at least we are able to do it. Matthew wears his glasses all the time, he can’t see well without them.

Nathanael, his eyes are different to the other two. He has no tears in his right eye but his vision is +4 (I have still not worked out what this means) he does have tears in his left eye but it is virtually blind at +6. He should be wearing his glasses all the time but he only puts them on at school while he is in class.

Just recently I found out that he should be getting drops three times a day because the cornea was dry and it inhibits his vision further. He lets us do it no problem, as long as he has two paper tissues ready and a big hug from me when he’s done

Lately his eye has been getting weaker and I am worried he will end up being blind in it. He couldn’t see the largest line with his glasses on yet at home he will cover his good eye and tell me everything he sees.
Last Sunday, I was listening to a speech at a competition where the speaker told the story of his 7 year old self, standing in the school line, memorizing the eye-chart so he could pass the eye test with his blind eye. I am worried that Nathanael is memorizing the things in the house so he doesn’t have to admit he is half blind.

We are supposed to patch his good eye for two hours every day. It worked somehow in the holidays but then it just vanished in a flurry of skin issues.  It is so hard to explain how we could possibly “forget” to do the tears and the patching along with so many other things and rest assured, I blame myself all the time that I am not doing everything possible to make them comfortable and “fix” them. When we have the skin sorted, we look after the eyes, simple really but it sounds absurd. 

Just recently I was asked if there was any way I could drop something from our night-time routine so the kids could all be tucked up in bed by 7.30pm. I had to try very hard not to laugh and in my most calm yet facetious way answered that I would gladly drop dinner and homework in order to cut the hours back a bit. ….they didn’t get it.

So, to cut this long story short, have your Ectodermal Dysplasia Child’s eyes checked as soon as you can. The added moisture from eye drops helps more than we can ever measure. There will be a time when the kids will start asking for them without prompting.

Playing the DS with his good eye patched

With Love and Support,

Tarja Kelly

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

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

Talking to her was fine, but, the questions I was asked were taken so randomly and (to me) out of context I felt like cancelling all other appointments from there on.

For instance, I was quoting what someone had said years ago and the word “freak” was in that sentence. Imagine my surprize and horror when later in the questioning I was asked: “So this is how you see your children, as freaks?!”
NO! I do NOT and have NEVER seen my children as freaks! How dare she, now I have to watch every word so carefully and emphasise “Quote” before I utter another sentence.

I was recounting another experience when she said:” Well, you do have to understand,  when other kids come to visit…”

That threw me into a spin. She said when other kids visit…. when….

Even now it stings to say it, we don’t have other kids visit, ever. We have had children for 9+ years and we have not publicly announced we are hermits and do not welcome visitors but we may as well have.  We don’t have visitors. Simple as that. I can count on two fingers, how many kids have visited our house.

On the other hand, I can count on one finger, how many kids have visited a school friend or cousin’s house. My oldest has a very good friend and I am very good friends with his mother and he gets to visit there.  That’s it, nothing else. Mind, this has only come about in the last year or so.

The psychiatrist literally stared at me when I said we don’t get visitors. As it isn’t strange to me, I couldn’t possibly imagine what went through her head but I can guarantee you she thought I was telling porky pies.

Of course, the conversation took a very odd turn then. Lets just say, I am not looking forward to what stories my boy will tell her when he visits.

Now, I sit here wondering if we are strange……But! don’t take this as gospel, I am not saying we are strange!

With Love and Support

Tarja Kelly

Then, as I am listening to the yawns from the back of the car and looking over at hubby half asleep, I wondered what it was all for.  More to the point, who it is all for.

Their teeth, well, they are slow-growing, come out erratically and don’t really have a plan. From the reports of all dentists they have seen so far they are lucky with their teeth. The enamel is strong and they have no cavities which is an absolute bonus.  Sure they are still baby teeth and in Sebastian’s case they will be the only teeth he’ll ever have, but they are strong teeth and fully functioning.

When Sebastian had his front four capped, it was fantastic. He didn’t get excited by his looks, he got excited because he could chow down on a cob of corn and leave tooth tracks As for teeth down the bottom, in his words :” I could do with two square teeth to help my two pointy teeth.”

Matthew, well, you can’t talk to him about “changing” his teeth.  He is fiercely proud of his shark teeth and he has no problems eating at all. So, am I doing it for him?

Nathanael, he desperately wanted teeth . He used to take great delight in wearing his brother’s old dentures until his own teeth came though. Now he has issues far deeper than having no teeth and I can’t help but feel responsible for having given up on the fight for him. Unfortunately, if he doesn’t like the feel of food in his mouth, how is he going to handle teeth in there, even worse, the process of making them. Is this for him?

Well, if we were not doing this for Sebastian, or Matthew, or Nathanael, the only people aside from us, was the general public. Were we subconsciously driven by appearance expectations of the people around us? Have I somehow lost the vision of the teeth for my kids to be directed by what looks acceptable to everyone else? Have I forgotten to ask the boys what their wishes in all this are?

Yes, to all the above. I have realised that despite my wish to let the boys have teeth to put in “if they want to” I have become driven to get them the dentures to “become acceptable”. 

I had studied up on the pro’s and con’s of dentures, the good the bad the ugly, all of it. I knew that the greater percentage of kids who had dentures would only have them in sporadically and hardly ever to eat with. I knew that we would have to almost sedate two of the boys to get the casts done to have the dentures made in the first place. I also knew that dentures will neither aid or hinder the growth of jawbone. Yet here I was, still searching for teeth.

I had forgotten to ask the boys.

Here I am on the evening before another appointment, pondering why we are doing this to them.

No number of appointments are going to make the remaining teeth grow faster. No x-ray is going to produce more teeth in any of their gums. No peer pressure at school is going to force the boys to see themselves as different. They are the normal kids and all the other children around them are the weird ones with too many teeth. This is how it is, has been and always will be.

As long as their jaws are strong and their teeth are working I shouldn’t be concerned. As long as the boys are happy and talk openly to me about their worries or concerns, I won’t be worried. As long as they want to teach as many dentists out there as possible about Hypohidrotic Ectodermal Dysplasia, I am proud.

When they say “stop please mum, we’ll tell you when we want them” I will rest.

With love and support,

Tarja Kelly

That got me thinking, because my initial reaction used to be a straight yes. Used to be!

These days I would reply more along the lines of , “It’s a bit easier and it keeps the eczema under control but no, not really.”

Now of course, I can only go on what happens in my family, I am by no means an expert in this field. When it’s cold, it’s HORRIBLE!

Well, harder for me, the mum, anyway. Let me explain a “normal” cold morning…

I’m up at 7am, freezing already I layer on the clothes so I can function. As I leave the bed, I can feel my warmth leaching away from my core like smoke from a fire. By the time I wake up the boys, my hands are so cold I can hardly move them.

Sebastian first. All I can see is a small tuft of his now curly, white hair. Clever boy, he cocooned himself into his doona (fluffy bed cover) with the hot water bottle and used his breath to warm the little cave he created.

He feels the cold most. He has said it hurts him. When I bring him his school clothes he tucks them in with him in bed to make them warm before he puts them on. The clothes are, a school shirt, shorts, jumper, track suit pants, socks, gloves, jacket with hood and a beany. Only when they are al warm will he put them on and get up. I make him porridge and he’ll slowly get his core to warm up too.

He has told me he doesn’t like going to school when it’s cold. His reason made me smile because it seemed so silly, I knew however that to him it was a big deal and that he really didn’t like that aspect at all. “Mum, I don’t like it when it’s cold at school, I don’t get goosebumps and nobody believes me I’m cold”

Physically, how I can tell they are cold, there is a white glow all over. Sebastian and Nathanael almost look like porcelain. The eczema dries up and Matthew’s skin will look like parchment and is brittle and dry. The lips are darker, almost purple and it takes them an awfully long time to get moving. The food intake also changes quite dramatically. From the summer where food is just an inconvenience they have to sometimes pause for, it has changed to two loaves of bread a day and a warm breakfast for starters. The “big fat foods” are appealing now because they somehow stoke the fire in their bellies.

Nathanael is the only one who doesn’t eat to get warm. I am worried about him there. He will nibble at dinner but making him sit down is impossible. He stands behind his chair and hops, on one leg then the other, he runs away down the hall and comes back for another bite He is a wriggler and a mover and a groover and it is the best table entertainment we have.

Now some might frown at this and say he’s got ADHD or some other thing that “Has to be Fixed!” but we all think it’s adorable and we all KNOW he doesn’t behave like this anywhere else because it would have come up in Teachers concerns. We know he does it to keep warm. It works too, you should feel him when he comes to sit on you later on

In the old house where we lived before, I used to set the heater to 24 degrees and leave it on until the boys moved normally. Then it would be off for the rest of the day. Here, we have no heating. The day stays bitterly cold inside this house. I have yet to feel warm and we start most mornings just hovering above 12 degrees celsius. What this does for the boys? Well, they have to start wearing clothes. Simple as that. I want to teach them to put on a shirt, maybe a jumper, when they are cold. Sebastian has “got it”, Matthew refuses to conform to it and Nathanael is finally wearing a shirt!

The unexpected hicough….Siobhan. She still dresses like the boys. She refuses to wear jumpers or long pants, she won’t copy me or daddy when we wear warm clothes. She is a kid and all kids wear what the boys wear, practically nothing.

I can tell we are in for a long time and I may yet break and get a little oil heater but until then, I will persevere and I will get Matthew to accept a jumper!

With love & support,

Tarja Kelly

I feel guilty, yes, guilty, that I have let you all down by not continuing the story I promised from our holiday. I feel awful that I never wrote the update about how the kids handle the cold. And I am grappling with the “new life” I am having to adjust to.

I never wrote the part two of the holiday because of what transpired the weeks after it. Our Matthew’s skin decided to play up in a major way. Couple this with sympathy and other comments which an autistic child sadly can’t process, he ended up in such distress his skin broke out violently. The night he stood in the lounge room with his legs weeping white blood cells because it wanted to heal the badly scratched skin, we knew it would be another hospital stay. I took him to the Dr.’s surgery and to my surprise and absolute relief, we were seen by a Doctor who was familiar with eczema of this extent.

True, he did say that he had only seen this extent of eczema twice in his Carrere but he at least had seen it.

Matthew was admitted that afternoon. A week later we took a shiny and new child out of the hospital. His skin looked as new as the day he was born. He went back to school and two days later we were struggling to keep his skin under control. He was trying to blend in and be a school kid but there were too many comments about how lovely his skin looks and how great he should feel and that was just too much for him to handle. A week before school finished for the Easter Holidays, I took him out because he was going downhill fast.

While all this is going on, I was supposed to be a mother to the other three, a wife to my husband and keep the place clean enough for the two with allergies. This is where I started struggling. Last year, when I realised that after the Christmas Holidays, I would have 4 days in the home, alone from 9.30 am until at least 3 pm I was almost overwhelmed with the thought of what I could achieve with all this time.

I started to imagine and plan the days I could unashamedly, go through boxes of junk and make decisions on “keep” or “toss” without the little voices of “Mummy, why can’t we play with it now?”. I had visions of oodles of boxes, packed for shipping to charity shops. Time in the middle to do dishes and all the other mundane chores which I do in strange bursts of energy all through the day. I flitter here, I flutter there and I don’t do one task for very long but I get everything done before the troops return home.  I even dared dream of sewing and creating little masterpieces like I used to BC (before children).

Well, I set aside all my “me” time during the December holidays because I knew there was plenty of it coming up…… It didn’t. I have my husband at home. Things happened and times got difficult and he is home.

Don’t get me wrong, I appreciate the extra body in the house, really I do. But, I have not been alone in this house for longer than 2 hours now since Thursday the 16th of December. The routine I had dreamt about has not happened. The days where I can walk in to an empty home without a sound but the wind in the trees and the odd creak of floorboards as I walk around has not eventuated. I have not had a silent moment to think or write without it turning into a whinge (oh my goodness, this is one now!) and I don’t wish to burden all of you with it.

And so it transpires that we have two with repeated eczema flare ups, living in a house which is totally unsuitable, no funds to move and enter a new contract, a house to build which is yet to be started, the Easter Holidays half way gone and a mum who is still trying to readjust to her “new” life with a full time home husband. Hoping the next blog will be of lighter issues like which tissue is softer on a child’s nose.

With love and support and an eye firmly planted on the silver lining,

Tarja Kelly