Today is a VERY special day. It is our youngest son's birthday! Today Criostoir is 4 years old!!
HAPPY BIRTHDAY CRIOSTOIR!!!!!!!
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 . . .
HAPPY BIRTHDAY!!!!
Love Mama
xxxx
