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...

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 Daddys PC...........

Now which button is for on......?

In the night while Leon was asleepy Cow and Mini Moo had been talking to the Cot Bed Gang, Cow and Moo love staying with Little Leon and the Cot Bed Gang, but they miss thier Mummy.......  The bears have Miss Schlepp to look after them, the rabbits have Hoppy Bunny Leon has Mummy and Daddy, but Cow and Moo were feeling a bit lonley.


Cow and Moo missing Mama Moo......

So Charlie Bear, switched on Daddys PC and started to search..... Mama Moo, well he looked at Twitter, Facebooky, farm family, local farms, looked at Milkey sellers......  Yorkshire show site and cow boys..... er no, that was something totally different...........  Eventually he found who he thought he was looking for.........

Mmm, cakey........

So, Charlie Bear picked up the phone..... it rang and rang and then suddenly a voice said.... Hello, Mama Moo here..... Well, Charlie was so happy, he explained that Cow and Moo had been adopted from Farmer Copleys Farm. But they missed their Mama Moo.....  Mama Moo was thrilled, it was a nasty farmer who had taken Cow and Mini Moo and given them to a albert...arbor.... abberrrt anyway, somewhere Cows and Mini Moos shouldnt go!   That would explain why Cow doesnt like the butchers shop.......   But Farmer Copley had come and rescued them with all thier friends and let them live in his farm shop, so that families could come and adopt them......

So, knowing that her little Cow and Mini Moo where safe......... What will Mama Moo do next.......

Cow and Mini Moo tucked up safe and sound..

Cow and Mini Moo are looking after Little Leon, the cot bed gang are planning another midnight phone call........   They are also raiding the Growls money box and Noel is planning a trip out in the Coupe........... What does that all mean..........?

Cow and Leon xxxx

Little Leon visits Albert Dock...

Today has been a lovely day for Little Leon, he took Cow and Moo to Albert Dock in Liverpool to see some boats.

Cow in a Mini!

There were big boats, little boats, boats with sails, boats without, boats with people in and boats with people out.  The loud man on the microfone said that there will be a Pirate weekend on the 20th and 21st July..... Avast said Little Leon! So he might be going back!

I said no pictures please, Superhero Incognito!

He also saw a fabulous stunt plane performance and they finished off after looping the loop, flying upside down, criss crossing and going back and forwards with a beautiful great big heart!  Leon was thrilled Daddy had arranged that.......... Daddy was a little surprised as well! 

Ive been driving in my car...... its not quite a jaguar...... Rarrr!

Then it was back down the dock side to get Mummy a coffee and some cake.  Mummy has fallen and hurt the ligaments in her foot, so she is having to sit and rest it a lot.  If you know Little Leons Mummy you will know she doesnt like sitting and doing nothing!

Cow having a Marylin moment on the blower......

Part of the reason for that is that she is setting up a small workshop so she can make more lovely things.  www.leonsheart.com    soon there will be more bears and bags and wonderful things to see on the website, so keep checking back, Christmas really isnt that far away if you are wanting a little bit of hand made something different.

Me and Daddy and Mummy!

Daddy is trying to watch the Grand Prix with little Leon munching crisps and yapping!  Poor Daddy!

See how you like it when someone does it to you.... Its tough being cute you know!

Sneaky peek at Mummys bag styles :D

 and finally..........

Be yourself, be true to yourself, follow those dreams, but not the one where you are naked in the middle of a motorway!

Love from Leon, Mummy and Daddy xxx

The Adventures of Little Leon and Noel: Little Leon opens a Workshop!

The Adventures of Little Leon and Noel: Little Leon opens a Workshop!: Hello everyone ! Little Leon and his Mummy have been very busy lateley, Leon has been very busy playing and learning, Mummy has been rease...

Little Leon opens a Workshop!

Hello everyone !

Little Leon and his Mummy have been very busy lateley, Leon has been very busy playing and learning, Mummy has been reaserching and looking for a workshop......

Little Leon, boy at C&A!

Mummy was very lucky and found a lovely workspace very close to where she and Little Leon live.  There will be a special place for him to play and help make lovely things.  Mummy will work on the website and put up some wonderful bespoke handbag using techniques such as couching, beading, trapunto quilting, and lots more things she would like to try out.   

So from the 1st of June Little Leon and Mummy with the assistance of Daddy will be working from a proper workspace.  Woooo they are soooo excited!

Leon having fun with Cow and Mini Moo!

Well the weather has improved and The coupe has come out of the garage, Little Leon regularly rides Cow, Moo and Charlie Bear around the garden.   Beep Beeping for Mummy to come out and push him when he gets tired!




MMMM Bixits?  dont mind if I do!

So Lots of work to be done, lots of picutres to show you of Mummys work and Little Leon with his Made by Me collection!  Rumour has it there may be a range of Christmas cards made by Leon.... who know what creative dreams he is having as he snoozes with the cot bed gang!

Shee you shoon as Little Leon says xxxx

PS.  Little Leon says Hi to his Daddys Rugby pals, see you at Belle Vue soon boys!