Tuesday, July 10, 2012

Meet Criostoir - .Our youngest son

Today is a VERY special day.  It is our youngest son's birthday!  Today Criostoir is 4 years old!!


You haven't been introduced properly yet so Criostoir meet Mama's blog friends . . . 

 and blog friends meet my baby Criostoir . . .

A little bit about our youngest son . . . 

Criostoir loves snuggles, stories, songs, his tractor and farm animals.  His favourites on TV are Peppa Pig, Ben and Holly's Little Kingdom, Timmy Time and In the Night Garden!

But Criostoir's greatest loves in the whole world are his books and songs!  - he's just like his Mama!!

I've mentioned before that Criostoir has Special Needs - (special needs are needs that the majority of children don't have therefore they are called Special Needs).  Criostoir was born 4 years ago with significant special needs.  The Doctors didn't know what was wrong with him and our journey with Criostoir began.  He was very sick at the start and required frequent hospitalisation for chest infections and tests to try and obtain a diagnosis.    The main problem was that his muscle tone was very weak which has significantly delayed all his development, (Criostoir can't talk, sit or walk - YET!)  Then at the age of 3 because of advances in Medicine and genetic testing a diagnosis was discovered.  Criostoir has a genetic disorder where there is a small deletion in his genetic code.  Criostoir is the only person in the WORLD with this particular disorder so there is no data on this condition.  

Our precious son is truly UNIQUE.

The reason I'm sharing Criostoir's story with you is that someone facing a challenging situation may read the following and it may help them.  When Criostoir was born we loved him instantly but we were devastated to find out that he was very sick.  Like all parents you want a perfect, healthy little baby to arrive.  All we knew was that our son was extremely sick, the Doctors didn't know why and we were walking in to the unknown bringing a disabled child home who required 24 hr nursing care.  A few days after Criostoir's birth, my husband took me for a walk around the hospital grounds and we sat down to talk.  My husband Niall, is my rock, he's an amazing man.  Niall said something very special to me that day that I will never forget.  He said that we could not change the fact that Criostoir was very sick, I said true, then he said we didn't know how long we would have Criostoir with us, I said true, then he said that the best possible thing we could do for Criostoir and for our family was to love Criostoir and make him as happy and as comfortable for as long as we could.  He also said that we shouldn't dwell on the negative aspects of our son's ill health or all the things he couldn't do but instead that we should put every ounce of energy that we had (which wasn't a lot at the time!) in to focusing on making him happy and enjoying every precious moment that we had with him.   So that whatever lay ahead for Criostoir and us as a family we would make the journey together with as much love and positivity as we could find. And that's what we did from that moment on.  

Four years later, Criostoir's health has improved, albeit slowly but there has been significant positive improvements.  The Geneticist has said that Criostoir has a normal life expectancy and as we have seen he will continue to improve but this improvement will be slow.  This is Good News.  As you can see Criostoir is a loving, happy 4 year old full of fun and mischief and I am convinced that our positive outlook has had a huge impact on his physical improvement and mental development and we hope that one day he will talk and walk.  It's not that we are in denial of his condition it's just that we choose to focus on the positive things he CAN do rather than focus on the things he can't.  We celebrate the small things and revel in his happiness.  All we want for Criostoir, our eldest son Aran and for each other is to feel loved, happiness and contentment.  The older I get the more I am convinced that the happiest man on earth is the man who is content with his lot - whatever that 'lot' may be.  

This is just our own personal philosophy - to focus on happiness, the positives, the good stuff no matter how small - it's not easy and some days are harder than others but it has helped us on our journey and I hope that it may be of help to one of you.  There is of course another phrase for looking at the world in this way, it's a french phrase . . .

La Vie en Rose . . .


Love Mama


Susan T said...

A very Happy Birthday to your beautiful boy. You love him with such tenderness and care the outcome has to be good. All good wishes from here.xx

Mrs. Sutton said...

What a HANDSOME young man he is - absolutely angelic with his gorgeous curls and cheeky grin - you must be SO proud!

Thank you SO much for sharing his story with us, I feel truly honoured to read about your incredible journey. Positivity and contentment is the key to all happiness, and you my darling have it in spades! Well done - you truly live up to your fabulous blog name - La Vie en Rose personified!!!
Much, much, love to you and your fabulous family - and more birthday wishes to the most handsome 4 year old in Ireland!
Paula xxxxxxx

Anonymous said...

Happy Birthday to cutie.Will call to pass on wishes in person soon.Well done on beautiful post.Any news on opening??.No pressure Sharon but quando quando quando???? Xx

Xxx Mary still in Espana !!!

Loi Thai, Tone on Tone said...

Hi, Sharon -
A Belated Happy, Happy Birthday to Criostoir! Thank you for introducing Mr. Birthday Boy to us. Our honor and pleasure, of course. Croistoir is welcome to visit blogland anytime. I'm sure he'll be busy helping mom with the new boutique. And what a special name? I am not familiar? A beautiful post, Sharon.
Thank you!

Karen said...

Happy Birthday Criostoir! What a cute little boy. I'm sure he has all he needs in life and that's to be surrounded by love. He looks very huggable -

LA VIE EN ROSE said...

Thank you all for the lovely birthday wishes!! Criostoir is very happy with all the attention too!!!
Susan - thank you so much for the birthday wishes!

Paula - he is SO handsome isn't he? and he does have a very cheeky grin - just like his Mama!!

Mary - quando, quando is right!! soon, very soon! hope you're having a ball in Spain. Can't wait to see you in the shop!!!!

Loi - yes, it is a special name. Criostoir is called after his paternal Grandfather! Criostoir is Irish for the English Christopher and is pronounced Cris-tore.

Criostoir sends you all big thanks and hugs!


Loi Thai, Tone on Tone said...

Big hugs to Criostoir back!! :-)

French Grey said...

Happy Birthday Criostoir!!
What a beautiful and heart warming post. Crisostoir is indeed unique and precious and God does not make mistakes! He has been placed in your caring hands to love, cherish and nurture as only you and your family could do. May the Lord bless you as you travel this unique path he has place before you..... and be sure to have plenty of cake and ice cream as you celebrate his 4th Birthday!!


The Snowdrop Project said...

Hi Sharon,
Belated Happy Birthdays to Criostoir!!
Thank you for sharing your story with us, lots of luck and love sent to you and your lovely family.
Have a lovely day,

Bluebells and Lavender said...

Hi Sharon, what a poignant post, thank you for sharing such intimate details of your life with us and happy birthday to Crisostoir! We have the same philosophy - to focus on what he can do but to have hope that things will improve. He has a great mama and a loving family, that's all a child needs. Happy weekend. Sharon x

Tina@WhatWeKeep said...

Hi Sharon,
I wanted to send happy wishes for Criostoir, although a little late.
This was a beautiful post written by a beautiful woman for a beautiful child.
I had a son who became ill with intractible epilepsy at a young age. After exhausting every possible avenue, his neuro team told us there was nothing left to do.
I'm sure that you understand that moment- your heart breaks wide open.
I began a treatment that his doctors refused to believe would work. The meds that almost killed him at their prescribed dosage, worked at a lower, non-therapeutic dose.
His neuro team insisted that I was wasting my time.
I did it anyway.
Today, he is a thriving 22 year old in college and has had no seizure activity in 9 years.
They refer to him as the Mystery Miracle Boy.

I'm hoping for a miracle for little Criostoir. Your positive attitude and focus on what you can do-instead of what you can't- is the very best life you can provide for your precious boy.
The pain you experience is nothing compared to the love that shines through your child when he's in your loving arms.
I admire you and your husband so much. I am so glad you shared this with us! It will help someone somewhere, I truly believe that.
Big hugs to you all, Tina

Maureen at The Inglenook Decor said...

he is so precious Sharon! I hope he had the best of birthdays!

for the love of a house said...

A very happy (although belated;) birthday to the precious Criostoir! What a beautiful post filled with so much love. Please give him a hug from me and Ella in New England!

PURA VIDA said...

You precious lady are a blessing and your son and husband are very lucky. Actually you are all lucky to have each other.

Jo Sidley said...

Hi Sharon, I've only discovered your blog today, and have spent the evening reading your posts. It's a beautiful site, but this post made me want to comment.
3yrs ago we were told at 24wks that our baby would not survive when born, she had a lot of chromosomes missing, we had to make the hardest decision of our lives. I sometimes wonder if we made the right choice.
My point is your post touched me,why I don't really know, I've not shed I tear for a while but I did tonight, your husbands words and your love for your son is overwhelming, your son and your family are beautiful, and I wish your much love.

LA VIE EN ROSE said...

Dear Jo, Thank you so much for leaving your heartfelt comment. I am sorry that my post made you upset, that was not my intention in writing this post but just to try and help others in a similar situation. I am so sorry that you faced your own situation. Heartbreaking. Just to let you know we were unaware of Criostoirs genetic deletion before the birth and only knew that something was wrong after the delivery. Also, Criostoir's genetic disorder is a tiny deletion on the short arm of ONE of his chromosomes and he cannot talk, sit or walk and he is four. I cannot imagine the implications of missing many whole chromosomes and the devastation that would have caused all round. I am just sorry that you had to go though that difficult time. Again, thank you for commenting and your lovely words about my family. I appreciate how much it must have taken you to write your comment. I wish you and your family lots of love too,


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