***** TRIGGER WARNING*****BABY LOSS*****
This is a difficult/tricky blog for me to write. And there are some that will read it, and say I should never have written it at all. But this is my blog, my memories, my life and therefore my decision.
As followers of my blog know, I have twin daughters, who I affectionately nickname Baby Bear and Little Chick. I have shared stories, pictures and triumphs that I, as a soppy mother, cannot resist telling people about. I have celebrated milestones and important events, and this is no less important.
My Maternal Family and I have a genetic defect called Fragile X. This is basically where the X gene is corrupted and this issue was always going to be a factor in any pregnancy that I went through.
Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Because it affects the X gene, males are more severely affected by this disorder than females and are twice as likely to inherit the gene and the associated syndrome.
People affected by it usually have delayed development of speech and language. Most males with fragile X syndrome have intellectual disability, while about one-third of affected females have milder issues, what would be known as “slow learners”
Children with fragile X syndrome may also have anxiety and hyperactive behavior. They may have attention deficit disorder (ADD), are unable to maintain attention and have difficulty focusing on specific tasks. About one-third of individuals with fragile X syndrome have features of autism spectrum disorders that affect communication and social interaction. Seizures can be common place with Fragile X
Most males and about half of females with fragile X syndrome have characteristic physical features that become more apparent with age. These features include a long and narrow face, large ears, a prominent jaw and forehead, unusually flexible fingers and flat feet. I have had flat feet for a long while, and my fingers have always been, what I thought as double jointed. I guess now I know a little differently!
My Mum is the only child out of five to be unaffected by the syndrome. Her sister was affected, and her sister’s son displays all of these traits. Whilst, I was lucky. It missed me totally.
It also thankfully missed both Baby Bear and Little Chick.
What most of you don’t know, is that shortly after the girls turned 18 months, I gave birth to a baby boy, Gabriel John.
Whilst I don’t wish to go through the full story here, as it is far too personal, it didn’t have a fairytale happy ending.
Which leads me onto an important milestone.
This week, my son would have been 18. That magical milestone that every teenager longs for – being able to buy alcohol, get a tattoo, vote, be on a jury panel. You can get married at 18 without parental consent, and you can even stand as an MP.
There won’t be a party, or balloons, or a big cake celebrating the special day. No photographs, or happy memories. Apart from close family, most people won’t even know it’s an important day.
But I know. Not a day goes by when I don’t think about him. Years may pass, but the pain never fully goes away.
Time does heal a lot of things, and certainly the pain is less raw now. After 18 years it should be easier to get through one day. And it is!
A very good friend told me several years ago, instead of mourning the anniversary of his birthday, treat it like you would anyone else’s birthday.
“Go out there, look up to the stars and wish him Happy Birthday” And that year, that’s exactly what I did.
It felt like a weight had been lifted off my shoulders.
This year will be no different. Tonight, I will go out, look at the stars at Midnight and wish him a Happy Birthday.
I may not be able to hug him, sing Happy Birthday or shower him with gifts on such a milestone.
But I can celebrate his special day. In my own special way.
To finish off, I had to share these beautiful words, written by the equally beautiful Lexi Behrndt of Scribbles and Crumbs There is no way I could have said this even half so eloquently. Thank you Lexi.