Why does it always rain on me?

Oh my god! What a horrid day we’ve had.

We woke up to Ethan struggling to breath and unable to stand up, again, it was all too familiar, we had been here before, July 2nd 2009 to be exact when our own family nightmare began.

Thank goodness, after a trip to the Emergency Unit, nebuliser and reassurance from the doctor, we are all back home. 

But even now his breathing isn’t right, it sounds wrong, like he’s spent 40 years smoking 20 a day, I knew having children would bring us worries, but I never imagined this, never thought we would spend so long in various hospitals, remember so many doctors, nurses and consultants names, Be able to converse in ‘hospital lingo’, be able to measure and administer various drugs from 0.4ml to 15ml multiple times a day, and manage to give them to the right twin!

I know we are so very lucky to have been through everything we have been through, and for us all to have come out of it relatively intact, but I long for the day when I’m just a mummy who has all the normal parental worries, not worried that his lip isn’t growing and that he will need surgery before it splits open, or scared he doesn’t fall over and cut his face, he has enough scares, or that his voice hasn’t been too severely damaged,  I don’t want to worry about ignorant people and children who don’t know better pointing and commenting ‘cause he looks a little different. I don’t ever want to see him turn blue again or kiss him goodbye as he’s put under for surgery. I don’t ever want to hear it could have been worse, I know, I live it everyday.

Well this wasn’t meant to be such a pity party, but I feel a little better and it’s cheaper than therapy!

I hope your Tuesday is going better than ours!

Normal, happier, posting will resume shortly.


  1. Gosh, I am so sorry you've have gone through all of this, being parent really means carrying your heart out in the open and vulnerable. I will keep you all close in my prayers. Hopefully the little man starts feeling better soon....stay strong!


  2. Oh Amanda, that is so very hard. I'm sorry you are having a rough day.

    Indulging in a moment of pity is perfectly acceptable and fully earned. His pain and his struggles are yours too and no mother wants to see her child dealing with anything other than bliss. Unforutnatley that isn't life, but it does sound like you guys have been dealing with more than your share.

    I hope the day turns around and you and your son have a better start tomorrow!

  3. I am so sorry to hear that u and your family are having a bad time again. A new day will come tomorrow. I wish I could just pop round and try to help out. I am here for you if you need to write some more I will be reading.

  4. Hi, I'm a fairly new follower of yours. I can so relate to your post! I have an 18 year old daughter with autoimmune hepatitis who will need a liver transplant in a few years. Like you, I wish for the normal, everyday "worries" instead of the fairly regular state of crisis.

    Hope your boy is doing well now!


  5. Horrible experience :( Hope he's feeling better soon x

  6. Sending up prayers for you. Hope all gets better.

  7. My goodness Amanda, I'm so sorry. I will keep you and your family in my prayers. I hope everything comes round right for your little one. It breaks your heart when they have to endure any pain or suffering. Please take care!!

  8. Let it out! It's good therapy to vent when the weight of the world is on one's shoulders!

    Hoping your sweet little one feels better soon - so you'll have one less worry :)

  9. I can relate!! Our first grandson had open heart surgery at the age of 5 months. And he has Down Syndrome so, it's been an uphill/downhill life for us all. And our daughter, the mother, has been the strength of it all. I know just how difficult it's been for her!!! You have my empathy on life and living through all the turmoil.

    Thank you for such a wonderful, kind comment about my blog!!!

  10. You are having a pity party too?! I hope your son gets better! Hugs across the miles . . .


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