More Waiting 17

The phone call came this morning, my mobile said blocked, so I knew it was the Hospital. This past week has been pretty uneventful, with it even slipping my mind at times. When people asked how we were we honestly said “yeah not bad, I’m sure it’s all going to be fine”. But now the results are back.

I had a bad nights sleep last night, and each time I woke up, I felt uneasy. Now I could say it was Mother’s intuition, but if it was then I do already know the full outcome, whereas in reality we still really don’t. I am however sick and tired of being quoted damn statistical chances, because they don’t seem to be meaning much. Last week it was highly unlikely I would be a carrier of CF.

Today I am a carrier of cystic fibrosis. A very rare mutation of the gene apparently – I’m not sure whether I am supposed to regard this as lucky or what. I’m shocked, I have always been so routine. So normal. So average. Yet somewhere lurking inside me is this mutated gene laying dormant.

If I could just show you my thought patterns right now it might be easier because I can’t quite work out which way is up, down left or right. What do I think about first? Ok so tell Daddy Lloyd. His mobile went straight to answer phone, universe are you frigging kidding me!? Luckily one fast tweet to Daddy Lloyd to call me ASAP and he is ringing me – on a normal day I would marvel at the wonders of the modern world.

Daddy Lloyd takes over and tells me he is coming home and we will go straight to the hospital to get his blood tested. It’s then it dawns on me, we are in for yet another wait. They only test the mother because of how expensive the test is, so if the mother isn’t a carrier, they haven’t wasted money on the father’s blood. For those people who the female is the carrier, sorry, not only do you deal with all the emotions of discovering you are a carrier but you also have more waiting.

I’m a carrier, that means I have inherited the gene from one of my parents – this could mean my brother is also a carrier – it means I could have passed on this gene to B Lloyd. Jesus what have I done? Have I just put a risk onto my daughter that means she could end up in this situation one day? What if she wants to have children and her partner is also a carrier? I feel sick with guilt.

I’m trying to think straight, trying to be rational. Daddy Lloyd may not be a carrier, and until we know that is there any point in thinking about the what if’s? I’m afraid I’m a control freak. The whole reason I entered the medical profession was so I could always know the facts, always rely on my knowledge to help others, help my family, help me when something happens. So yes in my world now is the time to start thinking about the what if’s. What if Mini Lloyd had cystic fibrosis? What will their quality of life be like? What is the treatment like nower days? I need to access information.

The specialist nurse was good, she listened to me, gave that sympathetic yet patronising smile of “well it’s still unlikely, chances are” look. You know what, that’s all numbers, and numbers are relative when you are that 1 person. 1 in 25 European Caucasian’s are a carrier of CF. hellooooo, yes here, right here, me, that’s me. I’m 1 in 25 European Caucasians. So please stop quoting the stats to me.

Where are we? Trying to come to terms with my news and more waiting. Waiting to hear about Daddy Lloyd. Does it matter? I know I’ll find the strength within me to say “of course not”, but right now I’m sad. I’m sad I may have passed on a defective gene to my children and that’s hard to deal with.

About louise

One member of Team Lloyd, Sharing our expat tales and adventures, loves photography and capturing "that moment" Currently can be found in the sunshine, Southern California.

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17 thoughts on “More Waiting

  • Emma

    Oh gosh Louise, the waiting must be awful. I know it’s easy for me to say as an outsider but take each day as it comes and be kind to yourselves x

  • Joanne

    Well you haven’t failed .. you are not defective!!
    B & mini are so lucky to have 2 amazing parents – 1 being their utterly FABULOUS mummy.

    The NHS are pretty shocking, from my experiences, when it comes to irregularities in pregnancy. I wonder whether sometimes we have too much technology.

    big hugs xx

  • Vikki

    Hello my lovely, just read your blog. What a stressful time for you all! You are such a strong woman Louise and you know that whatever the outcome, you are going to be the most amazing Mum to yet another amazing little person.

    It’s so important that you get ANY hint of guilt out of your system before the baby comes, this is NOT your fault in any way and you need to know that. Bella is so lucky to have you as a Mumma and the baby, whatever happens, is the luckiest baby to have you and Kevin too.

    Sending you loads of love, xx.

  • Tracy

    Lou that really has just bought a tear to my eye 🙁 am thinking about you guys loads. You’re not a failure, you haven’t failed in anything at all, you have bought up a beautiful, intelligent and very polite little girl in B and whatever the outcome may be you are/will be FANTASTIC mummy and Kevin a FANTASTIC daddy throughout 🙂 x x x x x Love you all loads x x x x

  • Ruth

    So sorry to hear that you have yet more waiting. You weren’t to know that you’re a carrier and your children are very lucky to have such a lovely mummy. I don’t know much about CF, but I do know that my friend who has it is one of the happiest people I know. She has an amazing quality of life and you’d hardly know she has it from the way she lives her life. Thinking of you xx

  • Bod for tea

    Oh honey, I can totally understand why this news makes you sad. I would be the same. And I can understand your guilt. But please, try to push those feelings away, however hard it is. You didn’t and couldn’t know you were a carrier and whether Daddy Lloyd is or not and whether baby Lloyd has CF or not you will be the same awesome Mummy Lloyd that you are now. Sending you hugs across the miles and thinking of you all x

  • Mummy Plum

    I’m so sorry to hear this, and that you have yet more waiting to deal with. You mustn’t feel any guilt about this whatsoever. There is no way you could have known this.

    I hope the waiting passes quickly and that you get some good news soon. Thinking of you and sending a big hug x

  • Clare from Belfast Mummy

    Oh my goodness, what a rollercoaster and it’s the waiting that’s the very worst, knowing you can deal with, waiting and speculating is torture. Thinking of you all and both mini Lloyds are amazingly lucky to have such wonderful parents. X

  • Mags

    My heart went out to you reading this post. I hope you don’t have to wait too long for your husban’s result, it must be so hard to face yet another wait. Fingers crossed it will all be ok. x