untangling this thing we call life…

Category Archives: milestones


As some of you may remember, I am not the most reliable parents when it comes to the little traditionally important milestones in a child’s life.  Food, clothes, education, love… those I have aplenty.  Birthday parties, Christmas… I muddle through with huge stress.  Tooth fairies??  Regularly forget.

A good while ago, our Tooth Fairy was rather late for Sweet Girl – about a couple of months if I recall.  My children have a gentle relationship with the metaphysical.  Sweet Girl categorically does not believe in a deity of any kind, but desperately wants to believe in Fairies, Father Christmas and the like.  So I collude with her in perpetrating these little beliefs that allow her to find refuge in childhood and bring her a great deal of happiness.  On that occasion, Trudy, our Tooth Fairy had had a mishap with Time… you will find her adventure in this past post.

Little Man lost a tooth… I think about a year ago.  Yes, I know.  I am a pretty Dreadful Mother at times.  I simply kept on forgetting.  When I remembered, he was around my legs (at ten, he is still short enough to slip between them and quite clingy) so I was absolutely unable to find a coin and slip it surreptitiously into his Tooth Fairy pillow…

Clearly, a story had to be thought up…

Imagine his delight when he chances upon a letter on his pillow that afternoon – with a printed envelope looking wonderfully official:

I must add that the paper was pale blue, with a watermark “urgent” and a professional looking border…

Department of Tooth Retrieval

Her Majesty’s Secret Service

Address Undisclosed

 

Date:  16th June 2014

RE:      Tom *****, tooth retrieval error

 

Dear Mr *****,

It has come to our attention that a grave error has occurred.  We have become aware that one of your teeth was lost many months ago, and that your designated Tooth Fairy, Trudy, did not retrieve it.

On receipt of your mother’s emails, we launched an enquiry into this matter.  These are the results of our investigation.

  1. We discovered further instances of tooth retrieval error, all under the care of Trudy.
  2. We were initially unable to locate Trudy, and a Fairy Search was begun.
  3. We found Trudy on Friday 13th June in the depths of the Amazon Rain Forest.  She had been captured by a troupe of parrots (who are jealous because they have no teeth and so do not enjoy the advantages of our Tooth Retrieval Advantage Scheme).  Her communication device (wand) had been snapped by the chief parrot, so she was helpless.  Fortunately, the parrots treated her well and she was in no danger.
  4. We have rescued Trudy and she has been recovering from her ordeal.  She assures us that she is keen to resume her duties, and is feeling very upset for her case children (including yourself).
  5. Trudy is now back on duty, and has been issued with a number of new safety items in case of a similar problem.  These include an ear bud magical tracker and communicator; a miniature wand stored in the heel of her shoe, and a few other items that we must keep top secret.

In the meantime, you will find that the Department of Tooth Retrieval has dealt with her backlog of tooth retrieval errors, yours included.  We hope that you can forgive the dreadful delay in realising the scope of the problem and that you have not been too traumatised by it.

Yours sincerely,

 

Warlock Willow Barking

Chief Tooth Minister to Her Majesty, the Queen of England

 

 



Time to sieve the blackberry pips out!

Time to sieve the blackberry pips out!

Amazing first today!!

Little Man cooked his first feed.  He chose the ingredients based on the basic recipe I use…

Beef (he wanted pork because he likes a little pork to eat, but that was yesterday’s meat)

Oats (because he likes flapjacks)

Rice milk and coconut milk (Koko brand) because we ran out of rice milk

Orange and mango juice

Spinach

Forest fruits

Coconut oil

He measured everything out… cooked the oats in the milk and the beef in a frying pan with the coconut oil…

Chose to add in a little turmeric and garam masala (and smelled everything first!!!)…

Put it all into the Vitamix…

Waited…

Then poured it all into a strainer (to be doubly sure to avoid blockages).

I’m so so proud of him!!!  Life skills, emotional development, and knowing that most of taste comes through smell I’m hoping that in time he will be able to taste some of this lovely food he’s making.  The next big test is tomorrow to try and increase volume a little because this particular blend came to 1400mls… he’s never managed more than 1200mls in a day so we’ll see how he goes tomorrow!



I don’t quite know when the pressure of anchoring Celebration to specific dates and days became a source of intense and traumatic pressure.

I do know it is closely linked with my lovely Offspring and their difficulty in coping with changes of routine.  Eldest’s first birthday is best described in terms of sadness and tears rather than giggles and cake.  His birthday falls two days after Christmas, and the little boy was already rather overwhelmed with presents and the general “otherness” of the day.  Opening more presents, coping with more smiling adults, and another day of “otherness” in routine was simply too much, and he cried, and cried.

My initial instinct that a due date of Christmas Day necessitates an “alternative” birthday was confirmed in that experience.  Since then, both Eldest and Sweet Girl celebrate their half birthdays in June as a main celebration.  The “birth” day is marked with a small cake and cards, and much much love, but presents and parties come in the summer.

As time has passed, I have watched these Days approach with increasing dread.  The pressure to have that one perfect day, to order, is just too much.

I live, well I try to live, in the now.  Each emotion I feel, or those I love feel is as valid as the next, and actually as the old song goes, “it’s my birthday and I’ll cry if I want to”.  If I feel sad, should I not cry simply because custom dictates I must be happy?  (Oh… I haven’t cried, nor felt the need today – just saying!!)

The true joys of life parenting children with special needs is that the little joys inherent in every child’s life are celebrated in their moments.  Each time Eldest comes to hug me, I relive the utter joy of his first hug, aged 2.  He is now 13 years old, and still every single hug is a source of immense joy and gratitude.

Each time Sweet Girl feels happy is a cause for celebration.  We mark the moment by talking of it, by enjoying that wonderful emotion.  No pressure, we both know it may not last and it cannot be simply replicated… it simply is, and in that being comes wonder at simple happiness.

Each time Little Man reads a little book and enjoys it, we are filled with glee!  He did it, he deciphered a story and enjoyed it!!  Each hurdle reached is a source of quiet celebration, each hurdle overcome brings with it immense pride and a determination to seek out the next one.

Do I document each of these moments?  No.. I would love to, but the celebration is so intense, so “present” that getting the camera out, or stopping to find a “way” to mark the occasion, would interrupt the celebrating itself.

And in the smallness of these moments, they are so numerous that marking and documenting them is simply unmanageable in the business of living.

I celebrate.

To the naked eye, I shy away from celebrations, I tuck myself away in the comfort of routine and sameness.

That routine and sameness gives us all a sense of safety that we desperately need.  But make no mistake: in that sameness and routine, I find my celebrations, and my hope is to make life itself a celebration.

Each year in September, or October, or November, I hope to find the courage to break with traditions imposed on me by the outside world and convention and do away with Christmas Day.  I want to simplify it (I do love more and more the home made gifts, and yearn for far fewer gifts received more preciously), and also in some way to lengthen it.  I want to wake up one morning, notice that all the children and Darling Man are happy and relaxed and decide: Today is Christmas!  Just because we are all ready for such a day and days like Today are rare.  We simply cannot produce that kind of togetherness to order on the 25th of December, just because society tells us: this is the day you should be happy together.

I haven’t found that courage yet, but each year I get a little closer.  I suspect in the future, not too far from now, we will have a family confab, and decide how “we” will celebrate.

Similarly each year around June, the stresses of celebration perk up.  Birthdays, parties, gifts, the intricacies of friendships in a world of autism and disability all combine to make Birthday a difficult day.  How to mark the important (?) passage of time?  Is it important to us, to the children, or is it simply important because everyone else says it is…  Certainly there is something wrong if we continue to mark these “special days” in spite of our emotions.  I do not want to celebrate a birthday if the birthday boy or girl is unhappy – far better to accept that today is an unhappy one, and celebrate another day.

Today is my birthday.  I am 41, yet I still haven’t celebrated my 40th birthday.  I still plan to, but I haven’t reached a plateau of tranquillity that allows me to do so in a fashion that I feel appropriate.  And I’m absolutely happy with this.

So you may get an invitation to help me celebrate “40” this year, next year… or maybe in ten years time.  Does it matter? I hope not.  I will simply enjoy and twirl and laugh my way through what I hope will be a wonderful celebration – when my heart is ready to rejoice unfettered!

Today has been a quiet day.  Such love with dozens of people wishing my a happy day through the magic that is Facebook.  Family surrounding me with love as well.  I made a cake, because the date was a good excuse to do so!!  And it was good, and absolutely enough.

But when I call to say, come and help me celebrate my birthday, do not wonder that the date bears little or no relevance to the date I was born.  Wonder and enjoy that I am happy and have joy to share, and that on that day I choose to honour being alive, being born to rather lovely parents who grew me up beautifully and continue to follow my journey through life with love and respect.  Lucky me!



Surfing dude!

Surfing dude!

Given that WordPress wouldn’t let me upload the most brilliant video, I’ve changed this previously empty post to a photo of Little Man!

He’s standing, balancing on a foam float!  Weekly hydrotherapy has improved his core stability, strength and stamina more that I would ever have thought possible… not to mention significant pain reduction!  Yay!



You who cannot, or will not listen to me…
You are teasing my children
And you are hurting them…
Listen, try hard to understand… I’m trying to translate them for you.

I’m screaming inside, itching to scream out loud despite the knowledge that it would do no good, could hurt the “animals” and would be viewed by the zoo keepers with bemusement.

At the same time, I’m experiencing something of a revelation.  I think I’ve had a glimpse into the reality of living with autism.  Whatever anyone tells you, if you are not autistic, you. do. not. understand. autism.  Don’t kid yourself, Mum,  you may love your child more than you could ever have imagined; you may know what will or will not trigger a meltdown; you may have really good strategies for helping him or her through a bad time; you may even have learned why he or she reacts the way he or she does to certain things.  That is not understanding autism.  It’s managing it and trying to act as translator to your wonderful, beautiful child.

Trouble is, you’re translating a language you don’t speak.  You’re gonna get it wrong.  Often.  A lot.  If you’re lucky, the love between you and your child, and your patience will make things work.  Hopefully work well.

Tonight I took Sweet Girl swimming.  A little background:  she swims beautifully – I mean it, her body is stunning to watch in the water.  She also has NO confidence and is terrified of being out of her depth.  Not worried, anxious.  TERRIFIED.  To the point that she will sink because she loses the ability to function – no treading water, no movement at all.  Last Easter, due to her obvious ability, she moved to the deep end group.  Despite the teacher’s patience and kindness she simply wasn’t ready for it.  After 6 lessons or so she was a wreck and wouldn’t even get in the water.  She moved back to her beloved teacher Angelfish.  It’s taken six months for her to regain the confidence she had this time last year.  She has not come close to being the swimmer she was at Easter.

Tonight, with no warning, she had a new teacher.

Tonight, with no warning, she was put out of her depth.

She spoke… gods I’m proud of her!  She told the teacher how anxious she was about having a new teacher, about being in the deep.  This little girl, who finds it so hard to talk of her feelings and fears articulated them in clear, simple terms.  She was told those fears were “silly”.  Now, I know this lady did not know her, but my daughter needed to be heard, to be understood.  And she used the language we have taught her to use – words.  She did not squeal, or cry, or pull her hair, or run away.  She. used. words.

She did everything right.

And STILL!!!  STILL! she was lost in translation.

She did so well, but at the end simply could not carry on.  She came out of the pool shaking, crying, so, so scared.  And apologised to me!!!!!

“Don’t you dare apologise, sweet Girl, you did NOTHING wrong!!!”

I do not speak Sweet Girl’s language.  Even the most basic of language, touch, is slightly off kilter and mysterious.  But I love her, and I trust her, and I know that she feels that and loves and trusts me in return.

I do not speak Eldest’s language either.  It’s a very similar language to Sweet Girl’s, though his vocabulary is rather different to hers.  Again, love, patience and trust have allowed us to ride out many storms.

That love, patience and trust have taught me a lot about these two amazing people, though.  I’m fairly confident that I know them better than anyone else, and that my understanding of the outside world puts me in the best position to act as their translator while they figure out this strange language that other people use to navigate through life.

knew that Zack needed “baby/Mummy” time when he was six years old.  I took the plunge, brought him home and we did just that.  Holding each other, faces a few inches apart.  He’d never been able to do that until then, and I was open enough to realise when he reached that stage of his emotional development.

knew that Tom was different, ill, before he was even born (strange one, that but there it is).  His diagnosis of leukaemia was a phenomenal, devastating shock, but it was no surprise.  I can’t explain that at all, but it doesn’t change the fact.  Nor does it change the fact that in that sentence I’ve lost half of you readers.  Kook, mad hippy woman, deluded, you’re thinking.  I’ve lost you in translation.  Because words are poor.  For all the richness of human language, words simply do not do justice to the breadth of human experience.

knew that Kesia was baffled by other children long before anyone else recognised it (oh, except for kindred spirit Tayberry who saw it too… she also must translate her children for the world, and the world for her children).  I tried so hard to speak what I knew, what I saw to the psychologists who were trying to help her.  They saw a child traumatised by her circumstances.  So did I, but I saw more than that.  And with what I knew and what I saw, I spoke out.

“Please listen to me, I know her.  I see her darkest fears overwhelm her, I see how she works to speak the language of other children but never quite manages to find the rhythm.  Please listen to my words and hold them with you when you listen to hers.  Please.  Listen.”

I feel that I may be at some strange crossroads… I have words, vocabulary, education to mould them.  I have empathy, understanding of others – I can get inside your shoes within minutes of meeting you (it’s a double edged sword of a tendency, and I’ve had to work hard to keep my distance in order to keep myself healthy and “sane”).  I know that miracles take work and time and patience, and often pain.

Oh, and did I mention, I’ve the education to allow me that expression that I yearn for.  I know that I can formulate an argument in a clear (sometimes concise) way, and that I can turn a phrase to offer both logic rationale and emotive expression.

But somehow, my message isn’t getting through!

It’s getting lost in translation.

And I’m left wondering…

“What language are you speaking?  Why can you not understand mine?”

And I’m left thinking…

“Sweet Girl, Eldest… is this how you feel every day, every night?  Do you fight to find the right words, the right actions, only to be left with a string of words that made sense to you but clearly do not to others?”

Are we all living Lost in Translation???



Trudy is really quite special.  For those of you not yet in the know, each family has a named Tooth Fairy.  She is responsible for collecting and grading baby teeth, and leaving a small reward for each loss.

As a mother, I have the privilege of knowing our Tooth Fairy’s name, and having access to her email address.  Until recent years, my communication with her was through my wardrobe (this also gives me access to Santa’s elves and emergency access to the Special Toys division – a necessary tool when Blue was lost temporarily as it allowed me to give Eldest Blue’s twin, LB… Loving Bear), but the Tooth Fairies are nothing if not technologically advanced, so Trudy and I communicate by email.

Now, much as I love Trudy and appreciate her work, she is in all honesty a bit of a flake.  I have three children, all of whom fall under her care, and I believe I’m right in saying that she has never, not once, arrived in time.  Most children lose a tooth during the day, and find a toy or coin under their pillow on the following morning…  Not mine.  Trudy’s best timing has been to arrive a few days late.  This summer, however, saw her beat all of her past lateness records.

Sweet Girl lost a tooth at the end of July.  It was a big one, a molar and she was very excited, as her tooth loss rate has radically slowed with age.  Kesia has a rather good relationship with Trudy through letters written by both and left under her pillow.  For though Trudy is often late, she has a lovely soft heart and usually writes a letter to explain her tardiness and apologise for it.  Sweet Girl has a soft spot for her teeth, and finds it quite disturbing to think that her teeth are somewhere unknown, so she had previously asked Trudy to leave her tooth and written her a letter to that effect in which she candidly admitted that though she would like her customary coin she understood that this might not be possible.

The following week, when Trudy had finally managed a visit to our house (on that occasion, I believe her wand had broken down and she had found herself stranded at the office), not only did she leave a coin for Kesia, but also left the tooth and a note explaining that she had obtained special dispensation from her boss, Prunella, to leave the tooth in situ.  She does have to visit in order to leave a coin and grade the tooth, but it seems that with this dispensation she is still able to transfer enough magic from the tooth to her wand to warrant leaving payment.

Sweet Girl is very aware of Trudy’s kindness, but also her flaws.  She, along with her brothers,  never expects Trudy to come on time; not does she expect Trudy to remember much from one visit to the next.  So when she lost this tooth in July, she prepared it by putting it her special “lost tooth” pillow together with another letter reiterating her desire to keep her teeth, but also to receive a coin…

A week passed, then another.  Sweet Girl patiently waited.  Another few days, and she let me know that Trudy had not been.  I duly promised to send an email as a reminder to our sweet but absent minded Tooth Fairy.  No reply!  And I have to admit I then forgot entirely about this tooth.  Sweet Girl did not…

August passed with no visit from Trudy.  This was quite a record, and I became a little concerned for her.  She had never been quite this late before.  I sent another email, and copied Prunella in.  Immediately, a reply from Prunella came through:

Trudy has been out of TFHQ contact for several weeks now.  We have teams scouring the Earth and FairyLand for her and will inform all her families when we have further news.  Should you hear from her, please let me know.  In the even that you cannot reach me, please ensure that you inform the Duty Tooth Fairy Manager at TFHQ.

As you can see, Prunella is not to be trifled with.  To be quite honest, I find her a daunting person; though she gets the job done and is phenomenally efficient, I have to admit I prefer Trudy.  With all her flakiness she is lovely and sweet and always makes me smile.

There followed some nervous days and weeks.  Each morning, Sweet Girl would check her pillow, and her face was a little sadder with each passing day.  We were all quite concerned about Trudy’s fate; after all the job of a Tooth Fairy can be quite precarious.  Flying all over the world, assigned families with varying beliefs and customs can lead a fairy into quite treacherous ground at times.

Mid September, and Little Man lost a tooth.  We all held our breaths!  Now Trudy had two teeth to collect from our house… would she make it?  Would this extra tooth call to her and lead her out of this unknown exile?

Would you believe it, but the following morning, not only had Little Man’s tooth gone, but two coins had been delivered along with two letters from Trudy!

I did not capture the joy on those two little faces in the morning, nor Sweet Girl’s relief that her Tooth Fairy was alive and well.  Let me simply say that we had a truly magical morning.

And here is the marvel of Trudy, our Tooth Fairy.  She knows of the children’s abilities ever so well, and has always written them letters that they are able to read themselves.  So Tom’s letter was a beautiful, and simple one:

I especially love the personalised notepaper, the tiny letter, and the fact that she has chosen an orange font!  Somehow she knows Tom’s favourite colour!  (She also knows that Eldest is “above” such things as fairies, and has not bothered him or his teeth for the last couple of years…)

Kesia, on the other hand, already has a rather established relationship with Trudy.  An explanation for her prolonged absence was duly required, and given…

 

Dear, dear Kesia,

Oh my goodness, what has happened?  There I was, on my way to your house last August, because my bell rang letting me know you had lost another tooth. Now, I do know that you would like to keep your teeth, and Prunella has given special permission that you may do so, but I still need (and want) to visit you.  One of the reasons for this is that I must measure your tooth for our records.

Anyway, there I was flying over the English Channel, when I got swept up in a timey-wimey cloud (strangely enough, it was slightly purple).  Next thing I know, I’m in the bedroom of Queen Victoria’s youngest daughter, Beatrice.  I remember her very well, because I used to be her Tooth Fairy too.  Her mum always used to call her “Baby”.

Unfortunately, my wand (as you know it does tend to break down quite a lot) chose this moment to go on the blink.  It simply would not communicate with Head Office, so I couldn’t tell Prunella where (or when) I was.  Baby is luckily a bright little girl, and when she saw what a desperate plight I was in, called her mother. Being the Queen, Victoria has special dispensation to see fairies face to face, and she arranged for a special visit to the Victorian Tooth Fairy Minister who eventually (after a lot of paperwork) managed to send me to the correct time.  Time travel is rarely a precise thing, however, and I arrived yesterday – having missed two whole months!!!

So here I am… I’m very impressed with your tooth, it holds a remarkable potential of fairy magic in it.  Keep it safe and it will give you strength when you need it most.

All my love, your tooth fairy,

Trudy

Trudy may well be a flake, and she may be responsible for any patience my children have developed… but she has a wonderful heart, and I wouldn’t change her for the world.

In a life of tangles, the simple pleasures of tooth fairies and other magical creatures are a joy!

 

 



Little Man Tom is a survivor.

At the age of eleven weeks, he was diagnosed with Juvenile Myelomonocytic Leukaemia: JMML.

Statistics for this childhood cancer are grim.  As near as makes no never mind to 0% without treatment.  50-60% with bone marrow transplant.  And that doesn’t take you into the post transplant journey (which doctors do not  talk about at the point of diagnosis).

We were so, so lucky.  Nine years on, it still takes my breath away that we saw the doctors we did, when we did.  That Tom’s Noonan syndrome was diagnosed by the haematologists at Great Ormond Street months before the geneticists agreed.  That their experience in this world of incredibly rare disease had led them to take risks: to wait rather than rush to transplant.  And then to apply that experience to make a judgement call on another patient.  they told us that they wanted to wait.  They thought that Little Man might be one of the very few children to stabilise.

Without the oral chemotherapy and the initial treatment he wouldn’t have survived.

With a bone marrow transplant, he may well have died (it’s a very very risky procedure).

He got the chemotherapy, we waited…  and waited…

Little Man Tom has a lot of other medical issues to deal with – he sees many specialist doctors at one of the world’s top children’s hospitals.

But he is nine years old, and still very much alive.  The leukaemia stabilised.

I am breathless still.

Nine years ago, today we were enjoying a supposedly happy healthy baby boy.  And yet, my maternal sixth sense was on high alert.  I had been nervous, anxious, on edge throughout my pregnancy, and this continued despite post natal checks.  I had nothing concrete to base this anxiety on, but something felt wrong.  I still berate myself for not acting sooner though I know full well that nothing would have been picked up before it was.

Little Man was taken into hospital on Halloween 2003, for observation due to failure to thrive.  Late that night we were called in, and told that the most likely diagnosis was leukaemia with an unrelated congenital heart defect.  Time has not dulled the emotional impact of that evening and I suspect it never will.

It is very difficult, after such an experience, to dismiss that maternal sixth sense when it buzzes.  I could list a considerable number of events when I have felt it again, put my concerns to the right professionals only to be “reassured” and sent on my way.  In each and every case, time has shown that my instinct was right.

Tom with a fraction of his Beads of Courage. Each bead represents a medical appointment or procedure…

So, I may be a little paranoid, I may be wrong.

But I am buzzing again.  And I hate it because after nine years of the buzzes being far from insignificant, they now spell worry quite quickly.

Little Man Tom is unwell.  He is smiley, and there is nothing especially noticeable about his behaviour.  My mother’s eye feels that he looks ill and rather gaunt.  Argh… I want to say scrawny, and that is exactly the word that was in my head two days before that JMML diagnosis.  With the word scrawny comes a level of fear that is hard to ignore or bury.

Common sense says that this is most likely autumn and winter combined with difficulties getting enough of the right nourishment into him.

Sixth sense wants to check his spleen and liver and get a blood test to check his white cells, monocytes and platelets…  I will be having a little feel of his belly this evening because that’s easy, non-invasive and may just give me a little peace of mind.

Sense has already sent an email to the feeding therapist which will hopefully get an answer tomorrow or at the least on Tuesday.

Asking the nurse to come and do a blood test seems over the top.. but maybe I simply need to phone her and talk to her about what’s going on.

My experience of childhood cancer is mild, almost innocent and almost fraudulent.

Nine years!!! I am in awe…

And yet here I am, nine years after diagnosis, about six or seven years since seeing a haematologist, and the fear of JMML is as raw when it re-emerges as it was back then.  Childhood cancer wounds, and it simply does not scar well.

I haven’t written about it this month of awareness, and I’ve experienced a little guilt about that.  But if anything, this post may be effective in a different way.  When we hear of a family affected by childhood cancer we can be forgiven for thinking that this will mean a dreadful, painful odyssey for the family, but that with luck they will get through.

We don’t get through.  We learn to live in a different world, on a different path.  However “easy” the journey, however “successful” the outcome, we are wounded, and few of us will ever scar.  We just carry that wound with us and hopefully find a way to use it for some good.



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