Little Leon Is Three!

Well, That's when it all started, on a very very cold Tuesday three years ago. Little did we know what a ride it was going to be. Sheer Joy to your worst nightmare in the space of 24 hours and to all points in between in the last three years. 

I'm not sure what you women complain about when it comes to labour, at least you get a bed, I was stood up for the best part of 7 hours, mind you I did nip outside for a bit to say congratulations to my friend who coincidentally was there at the arrival of his youngest son on the same day, so a Happy Birthday to Ethan as well!

Birthdays are about celebrating, particularly the celebration of a life. Leon for one so young has been through so much, but (nearly) always does it with a cheeky smile and a hug.

He has a soft spot for the laaydees, especially nurses, maybe that's why he doesn't complain about his (all too frequent) visits to hospital. 

That said we have been lucky (!!), we have met new friends that we probably would not have met, and have certainly gained a different perspective on things as well. We try and live life as close to normal as possible, easier said than done at times, but i think we do ok.

Helens work took her away from home pretty much every other week, so it was left to me and the the little dude to amuse ourselves, always a recipe for trouble that!. I don't know if i;ve been a "good" dad or not, I hope I have, i;ve done my best and that's all any parent can do. Helen is looking for a change of Job so she can stop us getting into trouble, so if anyone is looking for an OT, leave us a message!!!

As Leon has got older he has certainly developed his own personality, somewhere between a Just william and Just a Gigolo!  He's a bit behind developmentally, but, hey, if i'd been through what he had, so would I.

He'll catch up i;m sure, but if he doesn't so be it, as long as he's happy i really don't care.

Leon Loves spending time with both sets of Grandparents, Knitting Nana (Helens Mother) spoils him by cooking his dinner most Sundays, where he goes to see his Cousins Jasmine & Cara, and  he teases my dad by waiting until he is just about to nod off and going WAKE UP!!! poor Grandad....

Is It Leon or is it Daddy?

We have even managed to squeeze in a couple of Holidays. Leon loves the Sun, the Sand, The pool, the Girls (or is that daddy....) Err, ....

Life is for living, Leon has taught us that much, not that we didn't already know that, but sometimes you need something to come along and make you realise that it is, and they are not just words. 

Leon:- Daddy carry the bucket.
Daddy:- No you carry the bucket
Leon:- But daddy....
Daddy, No, you wanted it, you carry it!
Leon:- But daddy your the bestest bucket carrier in the world
Daddy:- **sighs**

So, as Three years have passed, both very quickly and agonisingly slowly at times, we look forward to many more birthdays, more parties, more holidays, more time just doing stuff. For those that have been with on the ride, buckle up! we aint done yet!

“One must simply take the days of their lives as they happen. If you spend time worrying over what is to come, which may or may not happen, then you will only be wasting precious days you will wish in the future you could have cherished a bit longer.” 

― R.J. Gonzales, Mundahlia

Christmas is coming!

Today was the Childrens Heart Surgery Fund;s xmas party.

There was the usual scenes of kids running around, playing, laughing, crying, eating and generally having loads of fun. Sounds like a scene repeated up and down the country, so what's so special about it you ask?

Well, the room was full of children who have either had, or will be having heart surgery at the Leeds General Infirmary Childrens cardiac unit. It;s a rare chance where parents and children alike get to leave behind the everyday worries that they go through, knowing that the room is full of people who understand what you are going through or are about to go through. Doesn't sound like a big deal from the outside, but to us it is. We all get great support from friends and family, but, as they saying goes, you will never really understand how it feels until you go through it. I hope that no-one reading this ever has to go through it, sadly I know many have already, but one day, maybe, just maybe......

The CHSF relies purely on donations, the support it gives to families and the unit is immeasurable, so, should you have a spare few bob lying around chuck it either their way or to us and we will pass it on.

To be in a room full of amazing people with amazing stories makes you realise even more how precious the gift of life is and how fragile our grip on it is. Sadly, some little ones could not be there, some to ill to make it, even more sadly, some were looking down from above, but they're never far from our thoughts, especially at Christmas. Leon made the most of the chance to run round hugging all the ladies, saving some extra special ones for the lovely Ebony and Kim. He was a very good boy when seeing Santa, although he's not sure about this being good ALL the time is about!

So, Leon has worn himself out  hugging all the laaaydeeees and has retired to his bed to recharge the batteries ready for next week. He says, Hug your loved ones extra tight tonight, and sends big love to all.
and remember the words of Alfred D Souza

“Dance as though no one is watching you,
Love as though you have never been hurt before,
Sing as though no one can hear you,
Live as though heaven is on earth.”

Night Night everybody

xxxx

To Paraphrase Churchill....

Never has soo much been owed by so many to one man.




Mr Kevin watterson has announced that he is to retire in March.
Now to say I owe this man a huge debt of thanks would be something of an understatement. Waaaay back in the very early 90's he performed open heart surgery on my father, childrens work wasn;t as common in those days as diagnosis was still pretty poor, so he had time to fit the odd adult in his surgery slots, my father being one of those. fast forward 20 or so years, and he was to perform a minor miracle on Little Leon, 13 hours plus in surgery, an operation the great man called challenging and complicated, so I can only imagine how difficult it actually was.

Little Leon & Grandad discuss the finer points of open heart surgery!

Now, it's not just the surgical skills that sets this man apart, it's his dedication,  One of my overriding 

memories after Leons operation was the sight of Kevin, sat at the end of Leons Bed in PICU drinking a cup of tea, making sure everything was as good as it could be, and would not leave until he was satisfied all was well. He is a humble man, quiet spoken, a brutal honesty when discussing your options and chances when it comes to surgery, but has an aura of confidence, that just makes you feel that things will be ok. There were no guarantees, but we felt we had the best man for the job, (after all. He did have a walking testament to his skills in my dad). He has devoted a good 25 years or more to the cause in Leeds, been a great champion of of keeping Surgery at Leeds, and will be missed. We were speaking to his Wife at a Heart Ball, a lady that has (along with the rest of the family) undoubtedly taken a back seat throughout his career, it is now their time, and I wish them a long and happy retirement together,

We will be saying our goodbyes to him, along with many others at the CHSF carol service next week, it;s bound to be a bit emotional, thank you can be such an inadequate word at times.

Little Leon makes sure he has the new surgery teams numbers

Fortunately, Kevin leaves a good team Behind him, Mr Jaber was part of the team that operated on Leon, so there is that continuity, and the new head of surgery is Carin Van Doorn, no stranger to Leeds, and has established a superb reputation throughout Europe, so we can rest assure leon will be in good hands.

Little Leon has a busy few weeks coming up, so look out for the latest updates, It;s his Birthday Next week, the Carol Service, Christmas Parties, Christmas itself and daddy's birthday, so we'll have lots to share. 

If you drop by, leave us a message to say hi.

Laters people...

Sorry it's been a while in updating, but what with illness, holidays and Helen concentrating on getting Leons Heart up and running it been a little hectic to say the least. So just a quick begging letter really, I'LL post a more comprehensive update shortly!

This montage is exactly why Helen has taken leave of what little sense she had and decided to walk over some hot, make that very hot, coals to raise money for the CHSF.
Helen and a load of other fruit bats are going to Stockeld Park on 1st November to raise funds for the Charity that gives so much to people when it is needed. I hope that no-one is ever in a position to need the charities help but sadly too many do. Don't just think "oh i'll never need that", the cold hard facts of Childrens Congenital Heart Disease is that it will affect 1in 100 children and is THE biggest cause of Death in children. It kills more children than all the cancers combined yet receives a fraction of the funding. So, sadly there may come a time when you, or some-one you know will be affected by it and they may need the help of the CHSF. So, if you can spare the cost of a Starbucks or a beer, please sponsor Helen Dory Purdy, and help her to help those who helped us. Be warned though, if she doesn't reach her target, i will upload a video of me from one New years eve bash, and believe me, you really don't want to see that!

A Big big thanks to all who have donated already 

Please use the link below if you are able to spare a few bob!

http://www.justgiving.com/Helen-Purdy2

Laters peeps!

Little Leons Mummy reflects a little.........

 

Little Leons Mummy here :D

 

He keeps telling me off for not updating more regularly, but you know, its more fun playing with Leon and the family Moo, the weather is good and we can go out. All too soon the cold weather will sneak up on us and it will be back to worrying about colds and bugs putting us back in the hosptial.   So I have started a little notebook of crafts and games we can play during the winter.    Maybe I can do a craft or activity of the week, share our adventures so other people can join in :D   The plan at the moment is to turn our damp stuff filled cellar into a little play room for us so we can get messy, watch films, eat popcorn, hang out.......

 

Woooo Hoooo!  Tractor!



 



I was looking at a post on Face book this morning, after I had mopped up my tears I got to thinking about all the parents who are currently walking a road that they would never ever have taken if it wasnt for the gift of their children..........  It was Reubens Mummy who made me cry this morning, Reuben had an aggessive brain tumor.... Reubens Retreat is set up in his memory, his family are fundraising to be able to provide a retreat for bereaved parents and children and families of children with life limiting conditions......  http://www.reubensretreat.org  

 

Carren Bell set up Lagan's foundation, if Lagan had been born with a perfect heart the foundation wouldnt exsist.  I volunteer for Lagan's, we provide short term respite care for families with children between 0 and 5 years who have Congential Heart Defects and or Feeding issues. Hospital sitting service, because even if your child is asleep or sedated..... you just sit there for days on end..... We take over that role of sitter for a while so parents can eat, shower, sleep and just try for a couple of hours at least to get out into the 'normal' world that we all left behind when we entered the world of Congenital Heart Defects!  http://www.lagans.org.uk/

 

Harry Mosleys Mummy is still fundraising and making his lovely bracelets.  Harry started 'Help Harry Help Others'  and thats exactly what his family continue to do.   Harry was mad about Sponge Bob Square pants :D  Now, every time I see Sponge Bob I think of Harry.   Harry also suffered from a brain tumour.   http://hhho.org.uk/ 

 

Fellow heart parents Jon and Andrea have started Zip Media, a path Jon said was born out of his experiences with his daughter being a heart baby with other complications, not to mention fighting the good fight to keep Leeds General Infirmary Childrens Cardiac services in Leeds.

 

Me starting Leons Heart making bespoke handbags and using Character bears to raise the profile of CHD in babies.  www.leonsheart.com   If Leon had been heart healthy life would be so very different.  I would probably be working full time and banging my head against the wall, feeling guilty that Leon was in nursery while I worked myself half past dead........ Well now my priorities are different, I live for my family not for work and Leons Heart is like having another little baby, needs feeding and nurturing to thrive :D  So far, both my babies are doing fine.

 

So, thats us, parents of children with life limiting conditions, moving forward in a way only we can........

i can do this to Daddy and he laughs woo, try it when you see him!

 

Er Mummy..... do I look cute in this wide angle?



I promise Little Leon to make more of an effort in sharing his adventures, in fact, I think you should watch out for Talbot the Travelling bear, he is preparing for an adventure, he has his new hat, shirt and rucksac, he is packing his map, toothbrush and a letter of introduction.  Sadly the Cot bed gang have spent all the growls on take aways, so he has to thumb lifts and rely on host families to take him round the country and maybe around the world.  So if anyone wants to be a host family for Talbot and take him on some adventures, take a photograph and upload it on his FB page, let us know. 

Now its time to say night night, see you all soon, laters as Leon now says.

Love Mummy Daddy and Leon xxx

Two Years On.....

Two Years ago today, I made the longest walk of my life, a walk no parent should ever have to make. I carried my son, Leon, from Ward 10 to the operating theatre at LGI, They wanted him to go down on a trolley, but there was no way I was going to let that be my last sight of him should the worst happen. We (Helen & I) left him in the hands of the surgical team knowing the odds on him coming back were a lot less than favourable, but, Helen had done a great job in getting him so far, and now it was up to the Wonderful Mr. Watterson & his team and Little Leon himself.  Over 14 Long, long, long hours later, he was back, alive, relief all round, the rest is well documented elsewhere.

 It’s been an eventful two years, Leon has had further surgery, and will still need more in future, but he now has that future, something that was not for definite two years ago. Along the way, we have laughed, we have cried, we have had family holidays, days out, days in and days doing nothing and, infuriatingly, days/nights at the hospital (s)!. There is always the worry over his health,some days are better than others, but  his heart is in as good a condition as we could have hoped for, his plumbing sadly not, but hey, I’ll take that any day. He is checked by the Hospital regularly, at the moment all is good so big smiles all round!  They say that having kids changes you, having a CHD kid certainly does. Perspectives change, you find out who your friends are, and get to meet a whole load of new ones; for  we are all members of a club that no-one wanted to join, but we are closer for that, we understand each others worries and feel each others pain. With the best will in the world, if you haven’t experienced it, you will not understand, and I pray that one day no-one will have to experience it at all. I now frequent a world where hearing about another ones Open heart surgery is the norm, where hospital visits can be more regular than visits to the seaside for children and parents alike, and where, sadly, death, is all too common.  We were lucky (!!) Leon survived, he  has had people from all parts of the globe praying to whatever deity would listen, the non-religious just sending best wishes, and random strangers offer support in various ways. In this digital age, it’s surprising how touching a message left on a forum wall, from some-one who you have never physically met and know only by a nickname, can be.  Leon has developed a bit of a fan club in some circles, a blog started by Helen about Leon and his adventures has now been visited over 17000 times, who’d have thought it!

 So two years  on,  I would like to thank all of you that have in some way become part of our lives, to the medical and ancillary teams at LGI (how do I start to thank these guys?), to the RLFANS Wakefield Trinity Forum Prediction league  for a wonderful Gesture and continued messages asking about his progress, to the family of Leon Walker, their own son tragically lost to an undiagnosed CHD whilst playing for Wakefield for their kind words and gesture,  to all the new friends we have made in the CHD world, to the families who have been through this and helped with advice and to those still to go through it that maybe we can help in some way, to our close families for being there and to old friends who just were there when we needed them.

But I have to thank one person more than any, my wife Helen, without whom I would not have got through this last couple of years, so, here’s to many more years as a family just doing family things that others take for granted.. 

There is a quote by Souza, that really says it all

“Dance as though no one is watching you,
Love as though you have never been hurt before,
Sing as though no one can hear you,
Live as though heaven is on earth.”

Thanks for being along with us for the ride, buckle up for we have a long way to go and a lot of things to see and do yet.

xxx

The Adventures of Little Leon and Noel: Little Leon and Mama Moo........

The Adventures of Little Leon and Noel: Little Leon and Mama Moo........: This morning, early, before Little Leon was stiring and Mummy and Daddy were still snoozing, Charlie bear sneaked downstairs and switched on...