Poison and Antidote

The expression 'blood boiling' holds new meaning for me this week. I felt like I was going to explode like a volcano, spewing bile and hot lava everywhere. I didn't though, life finally having taught me patience and a little control I suppose.

I've discovered that anger like this is like a poison spreading to all aspects of your life it effects your mood and how you perceive all sorts of things. Tainting things that should taste sweet with bitterness. One moment you are content with your lot in life breathing deeply and easily and the next one act can create turmoil and confusion in your mind! If you allow it too! I am however extremely lucky to have a life filled with the perfect antidote to this poison.

Love and Laughter.


A Tuesday afternoon visit to the lake and park with family, where ducks are fed and little girls search for treasure upon their pirate ships.

And little boys all dressed ready for their first live football match pull some extreme swing stunts with expressions that make hearts sing and laugh.

Little girls can strut!

West Ham our family team visit our local squad for a pre-season friendly, away end tickets are arranged and our littles are wrapped up like teddies and get to experience their first live football match....... C'MON YOU IRONSSSSSSSSSSSSSS.

Creating memories.

Clearly our babies are lucky charms 2-0 fantastic. Daddy was chuffed to say the least!!!

Picnics with friends at the lake, while kids get grubby collecting (bark) treasure. Mum's catch up and wipe bird mess off each other's bums of course "trying not let it wobble". Ohhhh time with friends always lifts me even when I'm not low. I always float home.

Visits from school friends that are not allowed to be spoiled by the weather. " the best picnic EVER" moved indoors. I would never have imagined 3 six year old girls could consume sooooooo much fruit sandwiches, cakes, crisps and sweets!! but they did!!

Meanwhile the bond between boy and dog grows ever stronger!

The weekend concluding with a bumcow sleepover (my word those girls create a stink in their sleep) and our pooch making us proud and winning a rosette at a local show. Well done Woody Dog we moan a lot but we love you xxxxxxx He would have won more but the girls were judges of the waggiest tail and that wouldn't have been fair :-)

Although the anger is still there it is cooled I have too much to enjoy to waste time bubbling!! I am just going to soak up as much antidote as I can and count my lucky stars for it xxxxx

It's OK

I don't know what's up with me but I seem to have had a few more 'meaningful moments' this last few days, from the simple moments of relaxation at a community picnic where Molly could run off and be free with her friends and practise circus skills whilst Max and I sat on a blanket surrounded by people enjoying just sitting on the grass picnicking with their families.

To walking into the living room expecting to find Simon on the phone when in fact the gentle rumble of his voice I'd been hearing was him sharing a story with our enthralled son all relaxed ready for bed.

Saying goodbye and thank you to a much appreciated professional as she moves on to pastures new but at the same time welcoming new friends into our consciousness and mobile address book making plans for the term ahead and for mutual support!

Enjoying the sweetest (in so many ways) hot chocolate made and served to us by examples of pure determination and achievement in a tiny little cafe / bakery which I will from now on be frequenting with as many friends as possible to surround myself with the magic which comes with that little extra chromosome, where Max's nose will be tweaked so gently and with such joy and where all are welcome and accepted.

Enjoying just being with my husband, just Simon and Vicki at a wedding of his colleagues, watching and joining the revelry and laughing until I thought my tummy was going to explode, deciding not to stress about getting taxi's home on the night of a big concert locally but instead to pitch a tent in a field behind the reception with other friends and family. Not worrying when we realised we had no pegs but fashioning makeshift replacements from bamboo and having fun.

Seeing Simon smile to himself and start by just singing under his breath but build up to being on the centre of the dance floor giving his all to the 'Time Warp' knowing although having never witnessed it myself but having heard about it from so many smiling recollections that he wasn't alone and was very much thinking of past 'Time Warps' as he was 'bending kneeeees innnnnn tiiiiiiiiyime' and one particularly 'insayaaaanne' warpee! xx

It was well into the night and on the same dance floor a little later where my most profound moment of the last few days , no weeks maybe even months occurred.

I was dancing with a partner of another of Simon's colleagues (who also happened to be the sister in law of the groom) When she introduced me to her mum who was also dancing, and she apologised to me!
She said she was trying to explain who I was to her mum and she had told her about our family and her mum had known that she had been to celebrate with us for Max's birthday and the only way she could find of describing who I was was as Max's Mum "you know the little boy with Downs Syndrome" and she said Sorry again. Now that isn't what I found profound it was how I replied that has effected me

"That's ok I am Max's mum" and I took her hands and said " and he does have Downs Syndrome, and that's OK too" and it really is.........

I've said before that I count us very lucky as we found acceptance early but it's moments like that which serve to remind me of how complete that acceptance is. I immediately shared this moment with Simon as it overwhelmed me with utter joy and relief "it's OK"

for him to smile with me and tell of a recent moment of realisation of his own.

He'd found himself working on a car belonging to a sister of an old friend, catching up in 10 minutes 10 years of of missed history as you do in those situations, and he told her about marrying me of Molly and Max the dog and of Max's diagnosis. He said to me as he talked of it he found himself feeling no disappointment no hint of sadness just utter pride and acceptance and joy in his children.

Thinking about all this has taken me back to a car journey home from the hospital having just been given the life changing news that things were not as we had planned or expected them. Digesting this news together and along with all the reassurances of love and the fears I've already shared here before. Simon said to me "we're going to be know as Simon and Vicki with the Down's baby" and I responded with "we are" but with half sadness. That's where the realisation of this weekend comes in because now I say " WE ARE AND THAT'S OK IN FACT IT'S MORE THEN OK BECAUSE HE'S BLOODY BRILLIANT" Oh and look at the necklace Molly saw and just had to have I think it pretty much says it don't you? xx

Perspective

We all have tough days, those days that start all wrong running late in the morning only for the car to choose not to start, then you get to school and find you forgot to put the buggy in the boot and have to now carry that stone of wiggling energy at half a run in order to catch the playground door and avoid having to sign in late.

To arrive home and find the dog has decided to empty cupboards and have a ton of fun with the oven gloves and carrier bags all over the kitchen. Then forgetting to move the bowl of cereal out of the reach of the baby when nipping to the front door for the post! One word WEETABIX!!

The dog to then to decide that this particular morning it'll be fun to dig in the garden and drag his smelly love blanket through the house which had just had a mad couple of hours spent on it sweeping, dusting, hoovering and mopping!!

Cutting it fine leaving to pick Molly up from school only to have the baby dirty his nappy just as we really must be going out the front door.

Spending an age in tesco's deliberating what sauce to buy, rushing home in the 20 mins left before drama finishes to put the chicken in the oven so it''ll be cooked in time for Molly to get to bed only to realise that I left the Sauce on the self checkout till!! Plain chicken it is, maybe I'll mix it up with a bit of gravy ;-)

Nothing here out of the ordinary and nine days out of ten all this would be like water off a ducks back taken in my stride as part and parcel of a busy family life, however I don't think there is any shame in admitting that whether due to hormones, tiredness or a combination of both some days it's just hard, where every task is an obstacle between me and bed. Where my mood permeates and surely creates further annoyances like the washing up refusing to co-operate and stack on the drainer with out tumbling off again and again, when if I would simply be in less of a hurry and dry some up first there would be no frustration.

Then Max looks at me like this.

Or Molly asks "can I help Mummy?"

and I remember how fabulously lucky I am. How with all the things we could be having to worry about the fact that I forgot washing up liquid in the shops is not a big deal!

I think of my friend who just found out her little girl is going to need surgery to correct bad hips and how stressful a time that is going to be for her to deal with whilst still meeting the needs of three other angels and their Daddy! But having confidence that she will do it with utter style and grace and make it seem effortless (Although I'm sure it's not) as she always does being the absolute natural Mummy that she is. x

Or our friends who after losing all material things in a house fire are having to spend their days chasing insurance companies and builders relying on other people in order to be able to re build a home for their children. Doing this all with humour and style and still finding time to just have a cuppa with a friend having a 'tough day`

I climb in to bed on these days after soaking away some woes and gaining perspective on the rest knowing that bad day's don't exist in my world as long as I can remember what is important and that tomorrow is after all another day and look what greets me in the mornings xx

Summer Tonic

There is nothing like the British BBQ, cold beers, hot food excited kids chatter, laughter and belly giggles that almost hurt. Everyone shouting louder and louder to be heard above the good natured buzz. Snuggling under extra jumpers as the night brings in a chill. There is a perfectly good couch in a warm living room but all choose to sit and shiver together outside.

All the "do you remember 25p for a witches hats" and "John you know John who lived at......." Sharing stories of childhood rebellion and gentle teasing and reminiscing of way back whens.

Time spent surrounded by the company of friends all comfortable in their own skin and in each others presence is to me like the best tonic this earth has to offer. Food for the soul.

A week filled with favourites

I sit here listening to the back ground buzz of playhouse Disney with one baby zonked out on my chest and the other quietly chilling under a blanket next to me their Daddy out in the garage doing daddy stuff and I breathe a big deep sigh of relief and pleasure. Another busy week has passed and I have got through it without dropping any of those balls we Mum's spend our lives juggling.

Some not so favourite bits of the week just passed are the early mornings that come with a teething baby and the muck that inevitably finds it ways onto my floors with showery days combined with school shoes, work boots and grass stained paws. The inability to get the mountain of washing done and on the line with intermittent downpours, although there is an upside to that and it is that I haven't had to worry about watering the flower pots and strawberries and the grass is looking a little greener. The baby is instantly forgiven when surprising his Daddy he pulls himself up onto his knees for the first time in pursuit of breakfast.

All the rest is quickly forgotten or put into perspective when thinking of the sunny weekend off, just spent with family and no time frames, practising for that long anticipated holiday that is so close I can taste the salty sea air......feeling relaxed......

The rest of the weeks favourites:

Afternoon tea parties at drama club, where I can take advantage of Molly being stimulated for an hour and sneak a quick shop in only to return and find her being as polite as she possibly can whilst still cramming as many biscuits and chocolate into and around her chops.

Then the real life drama of a visit from the tooth fairy.

Morning catch ups and mooching round mammoth furniture shops resisting the call of the cafeteria and instead opting for tea and biscuits and more gossip at home.

Days crammed with sports day at school, running races, slowing down to smile for the camera and losing 3rd place. Determined swipes at the ball with the plastic hockey stick, miss one, miss two miss three SCOREEEEEEEEEEEE GO MOLLY. xx

Then dashing across town to catch the last bit of a meeting with some new friends to swap promises of support, understanding and make dates to have coffee next weekx

Choosing not to mop the floors as it's raining and they won't stay clean for long anyway but instead enjoying a snuggle with my littlest star in the middle of my big bed and sharing a scrumptious morning snooze to the gentle background music of cbeebies.

Walks to the park even if they are pretty much guaranteed to be cut short by little peoples emergency needs of the toilet and dog's insisting they want to drop the Frisbee at least 5 meters away then laying down and looking from it to me as if to say "go on then, you get it!"

Appreciating husbands that can fix stuff! :-)

Wonderfully positive therapy sessions where Max continues to amaze and achieve.

Being fed by my Mum.

Unplanned visits from family on a Friday night and the spur of the moment decision to share sausage and chipsx

Now I find myself making a luscious dent in the sofa with my backside my babies now tucked up safely in bed, having poured myself ( in my Large worlds best 30 year old glass) my favourite wine, reflecting on the relief of finding the courage to start this blog and hearing some of the noise in my mind quieten as it flows onto the screen. Letting the heartwarming positivity that has flooded to me from those that have read it and the undeserved praise en power me to ramble on with more. In utter fear that I won't but un-resounding hope that I will live up to what has been said and do not disappoint anyone that has faith in me. xx

Cheers xxxx

To The Moon and Back

I thought it was about time I just wrote a small note to try and shed a little light of understanding on the title of this blog.


Any mummys reading or maybe some daddy's too will probably come across if they haven't already "The Little Nutbrown Hare" Either in illustrations on hospital or Doctors waiting rooms or in the stories themselves.


Well my first introduction was the story "Guess How Much I Love you" which was one of Molly-Moo's early favourites. I say early favourites as there are now too many to mention and they change weekly if not daily, so to say that any one individual story was an absolute favourite would be an untruth. Any way it was certainly requested bedtime after bedtime and anytime in between actually and I can't say I minded as for those who are not familiar it is the beautiful story of a bedtime game between the Little Nutbrown Hare and his Mummy, where one asks "guess how much I love you?" and the little one spends the next little while getting ready for bed and guessing "to the end of the field" to that bush over there?" and it goes on, with out a correct guess until the little one is nearly falling asleep and mummy whispers "to the moon and back" Molly and I still play this game now and again and I love it as it is a youngling seeking the reassurance of a mummy's love and needing that tangible measurement for it.

Then there is "THAT" poem http://www.journeyofhearts.org/kirstimd/holland.htm Which I suppose once gave me comfort in a time when I was afraid of this big unknown path we were heading down, when all I had were stereotypes and misconceptions to draw on, but now it just makes me dig my stubborn heels in and scream "WHO SAYS"

Please don't misunderstand I do understand what the author is trying to say with this analogy ans 'Holland' is beautiful and if that is where either Max or Molly want to take me then Woooo Hoooo show me the clogs, but I resent anyone saying Max can't take me to Italy or anywhere else for that matter, in fact we've already been (metaphorically speaking of course). I refuse to accept any limitations on him!

Yes we have to be realistic and understand somethings wont necessarily come as easily to him but couldn't that be said of anyone?

Who says it won't be Max flying us into Milan weekly and Molly that settles for the slower pace of tulips and windmills? What I mean to say is EITHER of my children CAN and I have no doubt WILL take me.

"TO THE MOON AND BACK"

MAX

We had waited so long and lost so many that I think I even might have enjoyed all the uncomfortable parts of pregnancy too. The pain of SPD, hardly being able to walk, getting stuck on the loo and needing Simon to winch me off, all served as welcome reminders that we were there, we had got through and were having our baby. I didn't even mind giving up my chocolate and fruit juice to manage gestational diabetes, I knew it was worth it.

As soon as we got past those early scans, six weeks and a little flicker of a heart beat, 8 weeks a slightly bigger flicker but IT WAS STILL THERE AND FLICKERING, ten weeks, 12 weeks, each time having to travel to Paddington but floating home on the hope and lack of disappointment, I just relaxed and enjoyed every ache and pain every elbow in the ribs and every midnight wee.

Life was so busy what with work, keeping up with Molly's social life and school commitments and attempting to keep the house as hairless as is possible with a four legged carpet, I got bigger and bigger and the time just flew. I guess we had spent so many years wishing and hoping for a viable pregnancy that when it finally came it didn't seem long enough. Before we knew it there we were Si fixing punctures on his bike ready for and off road ride with a friend the next day, me sat on a towel on the sofa as I had just moisturised after a bath and didn't want to grease the furniture, chatting to a friend on the laptop making plans to meet for a coffee and more then likely a sausage sandwich while our fella's were off being ten years old again riding bikes in the woods when "POP" I heard it before I felt it, si even heard it in the other room! My waters went spectacularly! Thank goodness for that towel is all I can say even if that wasn't it's intended purpose.
"errrrr both gonna have to take a rain check on those plans tomorrow"

Well if I thought my pregnancy was over quickly then it was nothing to how I feel about my labour. My mum was summoned to be with Molly who was sleeping upstairs completely unaware of the life changing event unfolding beneath her. Mum arrived in no time and we made our way to the hospital. I won't bore you with all the details but it was another text book labour and delivery if a 'little' quicker!!

Roughly four hours after that monumental POP he was here, we had waited so long and he was here, pink and wailing and looking so much like his big sister. He was perfect, it felt so right, so meant to be and every thing I had said to Molly about new babies bringing their own love so that nobody had to share the love there already was or do with out what once was just for them was true. My heart instantly swelled and I loved him so very much.





It worked out perfectly as by the time Simon had seen Me and Max settled on the ward and got home he was able to be there when Molly woke up, she'd gone to bed an only child and woken up an adored big sister.

I spent that day on the ward waiting for my big girl while getting to know my little man and almost force feeding him in an attempt to get his blood sugars balanced so as to be allowed home. That wasn't to be and I missed the other parts of me so much that night but before that I had to wait until the afternoon to see moo as we had decided she had to go to school as usual for it was the day she was to meet her teacher for the next year for the first time and spend time with her class.
But oh I didn't think my heart could swell any more but it did seeing the pride and excitement in her eyes as she came round the corner and watching the bond between them happen in front of me as she held her brother for the first time. I swear they created their own light.



Earlier in the afternoon the Special Care Nurse had been round to see us to check Max's blood sugar because of my diabetes and thought she'd seen something else. We were taken to the family room for a Doctor to look him over, now here my memory is a little sketchy because I remember it as they saw what they thought could be features of Down's Syndrome but they were not sure and wanted to do a blood test to rule a Mosaic state out. I am not certain here whether they played it down because they didn't think he was or whether we did in our minds as either denial or self preservation I don't know. Whatever it was though I am glad because other then a scary six hours in special care because of worries about whether he was getting enough oxygen in his blood ( I really believe here it was so hot on the ward that it caused him to be blotchy and that's what worried them because he was absolutely fine) We didn't give the blood test more then a second thought. I am grateful because we didn't miss that precious first week our so longed for son/brother anxiously wondering . I am grateful that so many got a chance to meet him before any pre-conceptions could taint their gazes.






Six days on we wait anxiously to see a Doctor to check Max's heart as a result of the worrying time in SCBU the week before. All I can Liken this experience to is that ride at Alton Towers 'Rita' which goes from nought to super fast in a heartbeat and quite literally takes your breath away.

We sit down in the Doctor's office all nervous smiles, Max nestled sleeping in my arms having just had his fill of Mummy's milk, and our world was changed instantly with one sentence.
"Max has Down's Syndrome"
Fear....absolute terror, never for a second was it about our love or acceptance of him or that of our family and friends, he was ours and he was perfect and he was loved that was NEVER in doubt. But fear first for his health "tell me his heart is ok please just tell me he's healthy" Which thankfully we were quickly reassured that he was. Pure terror like I've never known to pure relief in a matter of minutes.

Then came the fear of the unknown. All we had at that point was pre-conceptions and stereotypes so with those came the fear of the world and how cruel people can be and what cruelty would we be unable to protect him an possibly even sooner Molly from?
These fears are still there somewhere but with education experience and wonderful support from both professionals: I quote the Doctor who gave us the diagnosis.
"Please remember prejudice comes from ignorance, don't be upset by it just know that person is living their lives in ignorance"

And Family : his uncle on hearing the news and kneeling to his nephew while holding his brothers hand and squeezing my knee so hard that it bruised.
"So...... He's our Max and we love him"
and a friend who said:
"I feel lucky to have him in my life because he is going to open my eyes to things I would never have known or had experience of before"

All those fears are cushioned.


Ultimately I feel very lucky that as a family we came to acceptance very quickly. I suppose the years of loss and fear before Max was born helped us with that. Re-enforcing my belief that all things happen for a reason and all that heartache was preparing me to be a better mum to both my babies.

Max is One now and this year has been wonderful. My heart and mind has been opened to so much from simply seeing a children's programme in new light. Something Special I once watched with mild irritation, I now well up at it's absolute fabulousness and simplistic beauty. To appreciating that yes Molly may at times face prejudice and teasing but how she deals with it and how much she loves her brother will teach her tolerance and understanding of others that are different then her, lessons that she might otherwise not have learned. Lastly of how un-important most of life's trivial worries are.

There may have been moments in the early days, not many and not long moments, where I wished it wasn't so. I quickly came to realise that wishing Max didn't have Down's Syndrome was like wishing he wasn't Max. It does not define him. It is a part of him as much as his blue eyes are. It just is what it is.

He is my Max-in-a-Million and I wouldn't have him any other way.

I am very lucky to have a wonderful husband who supports me and our children with nothing but Love and strength, the absolute belief to set no limitations on any of us.

I still in low times wonder if I am up to this, can I cope? But then I remind myself I don't know how I'm going to handle a teenage daughter and all the things that terrifyingly come with that like boys and make up and drink and drugs arghhh I'm scaring myself now. I just have to have faith that to Love is enough and I will xxx

I am grateful every day to have TWO beautiful healthy children who brighten my every day and are the reason for my every breath.