Time heals?

***** 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.

feather-wings-27-x-20-white-feathers-with-marabou-3_260

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.

IMG_2567 (2)

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.

Txx

Leave a comment

  • Hayley Ann Stewart

    My darling I cannot begin to know your pain, or how much of it you have had to bear alone. But your tribute to your son will no doubt have made others feel less alone. Tonight I’m sure you’ll hug the twins even tighter! And tonight you’ll find me looking up at the stars and wishing him happy birthday too.
    All my love
    Hayley x

  • Kitty Wood

    You are so beautiful and brave to share your story Tanya, for others to know you have been through something similar can be such a help to them. You are an incredible and inspiring woman. I can’t even begin to understand your pain, but what a beautiful way to mark his birthday. Sending all my love xxxx

  • tracey bowden

    A beautiful post for your son and an amazing way to celebrate his birthday. I can’t even begin to imagine how hard this is for you xx

  • It is great that you are able to try and see the positives in what is such a tragic situation. Doing something for your son’s birthday is very important for those that remain and remember him. xxx

  • Beth

    I am so sorry for your loss. Such a beautiful post. Amazing way to celebrate his birthday. Big hugs. xxx

  • In my religion, a baby lost will grant Paradise to his/her parents. Stay strong and bless you .

  • Hungry_Healthy_Happy

    I’m so sorry to hear this. Sending you a big hug!

  • I’m so sorry to hear this Tanya. Happy birthday to him, lots and love and hugs. You’re an amazing Mum xxx

  • I’m so sorry for your loss, I’m sure this post will help some people out there xo

  • Aw bless you hun, noone should condemn you for being so brave and sharing your story with us and I want to thank you from the bottom of my heart for being so open with us. You are an incredible woman and when you wish your boy John a happy birthday I will add my wishes to yours because somewhere out there he is watching and waiting, so proud of the woman that he calls mother.

  • Tori Gabriel

    I am so sorry for your loss. It must have been an awful time. I have never heard of fragile X before. You are lucky it missed you and your girls.

  • Emma White

    I am so sorry for your loss and your right its not something we ever get over and yes time does heal but our memories stay locked there forever

  • Elizabeth

    So sorry for your loss. I have never experienced such a thing before and I can’t even imagine how this must feel, but I’m sending you lots of virtual hugs.

  • Sam Rowswell

    Tanya, what a brave thing for you to share. I only know a glimmer of your pain and it’s something I never want to feel again. I’ve never heard of FX so thank you for teaching me today. Love you x

  • I am so sorry for your loss. I am sure he’s smiling down at you. Sending hugs.

  • Beautyqueenuk

    I am sorry for your loss and I am thankful you have shared this, a friend of mine also has this very same gene and it has been passed on to one child and not the other so she is wrecked with guilt x

  • I don’t really have anything to add apart from that I am so sorry for your loss and I will be thinking of you this week xxx

  • Katt Martin

    Tanya, beautiful post and it may or may not have made me cry on the bus. This is triggering for me but it’s so heartfelt that I just had to read it. I know a smidgen of what you feel and I only hope that it helps you to know that you’re loved and supported. I’m sorry for your loss.

  • mummyslittlemonkey

    Time may lessen the intensity of your loss, but nothing can repair that hole in your heart. I hope you continue to replace your sad feeling with happier memories, and how lovely that you now have a group of women all over the UK wishing your Gabriel a Happy Birthday!! xx

  • Thank you for sharing this, Tanya! I am so sorry for this terrible loss, but I commend you for celebrating him on his birthday in this way. It is a truly beautiful sign of love and inspiration that I’m sure will now be used as a healing agent by many that come across your post. It seems that I’m certainly not alone in being taught by you about Fragile X today and I join everyone else in thanking you for bringing it to our attention.
    Happy Birthday to your Son and Many Blessings to your daughters and you!
    Love & Kisses!
    Jenny Nadine

  • This was a sad read but I found it informative as I’ve never heard of Fragile X. It must have been a painful and truly unwanted experience and I offer you a heartfelt sorry that you went through it.

  • This was such a sad read, thanks for sharing this with us, I know it must have been hard. I’ve never heard of Fragile X syndrome before and it’s been so touching to read about. * Hugs*

    xx

  • Laura

    What a hard breaking story, it must have been so hard for you to go through and continue to go through. xxx