Friday, April 11, 2014

And so it goes on....

Chelsea is still in hospital.  They are no closer to figuring out what is wrong with her although they are testing for a couple of things that fit some symptoms but not others.  The numerous consultants she has seen have declared she is a mystery, nothing fits the jigsaw and quite frankly the question "How are you still alive?!" has been uttered many times.

It's scarily serious and we had no idea..

New developments include a very high temperature and today's little gem to throw into the mix - a heart murmur.  Her BMI stands at 16 when it should be nearer 25, her weight loss has been dramatic and the cause is still unknown - frustrating.

I wish we had some answers.

I know that Chelsea is in the absolute right place, but still I want her home.   The house just doesn't feel right without her and the family is incomplete.

I know that the hospital staff are doing all they can, their absolute best.  But it's so difficult seeing your child look so ill and suffering, to not be able to walk even 10 yards to the bathroom and to be receiving blood transfusions and all manner of tests and routines.  It's so difficult, and like any parent I so so wish I could change places with her and take it all away.

But that's not possible, so I have to do all I can to be there for her, travelling to and from the hospital (an 80 minute round trip), ensuring her needs are met and she is given all she requires.  It's tough.  With a 6 month old baby and a 3 year old also needing their mama, it's tough.  The other three children are a little more self-reliant and less in need, but they still need to know that they too are important.

It's tough.

Life can get tough, it can push us and test us and force us to increase our limits and find strength in areas we never thought existed.  We have to deal with it, almost embrace it, and make things work.  We have to find a way of surviving.   I am trying so hard to juggle so many plates and give my all to everyone - Chelsea in hospital, my husband working oh so hard, baby Amara, 3 year old Taisia, 8 year old Callum, 12 year old Tiegan and 16 year old Joseph, along with a house to run, dinner to cook, essentials such as milk to buy. My family need me, as I need them.  We will get through this, dragged along, kicking and screaming, but we will get through this.  The guilt can be all consuming, but we must not allow it.  I am worrying that my other children are suffering, that our home-education is suffering - you know one thing that kept me beating myself up?  It's Easter holidays for schools - we are allowed a break.  I didn't think that after all this time (11 years!) home-educating, that thought of doubt and not doing enough "learning" would have even crossed my mind, but it has.  When weakness shows, those little voices gain access.

After spending the day at hospital yesterday, I was so so tired. Mentally exhausted and physically aching. My brain whirring with medical terminology, facts, figures, tests, results, ifs, buts and maybes.  I wanted to go for a walk, just a short one, but I needed fresh air and nature.

I needed to be surrounded by beauty and wonder...

I needed to be with things that make me smile...

Dear Winston goes from bucket to bucket to see which contains the nicest goodies (of course they are all the same!).

and I needed to be with things that I love....

Oh boy, I did feel better, I needed that break.  I needed that feeling of normality.


  1. Anonymous12:18 pm

    For some reason I hadn't seen your previous post, I'm so sorry that Chelsea is so ill. I'm sending lots of good wishes and prayers your way, that the doctors can find out what is wrong and fix it. Bodies are so complex but they can do amazing things now, once they've hit on the right thing.

    Do you have any friends nearby who might be able to help out with the day-to-day stuff like shopping, cooking etc? I'm sure there are people who would like to help but don't know how - if having someone bring over a meal a few times or go to get the basic groceries would be useful then don't be afraid to ask them. And I agree about taking a walk, I always feel a bit better after going out and looking at the signs of spring. May

  2. Anonymous12:19 pm

    Many blessings Julia

  3. There's nothing I can say except that I send hugs and hugs and more hugs to you all.
    Stay strong.

  4. My heart goes out to you and your family, how awful for you all, especially not having any answers at the moment makes it hard to formulate any kind of plan or direction to give you encouragement . It maybe easy to forget to look after yourself because of the urgency to be there for Chelsea and of course your other children, hubby and animals. Try to remember to eat well, take a few moments to be mindful, and enjoy short walks gathering muster on the way. Do not go down the guilt road, no good will come of that, remember what you have achieved in a short time. I think you and your family are marvellous and I'm so full of admiration for you. Wishing you all well, especially Chelsea.

  5. Im so sorry you are going through this! I hope you all get the answers you need and your daughter makes a speedy recovery xxxxxxx

  6. So sorry to hear about your dayghter! I really hope they have her sorted out and back at home with you very very soon! It sounds like you are going through a really rough time. Give yourself a break, you are doing the best you can! You sound like an amazing Mum!

    Lovely photos xx

  7. I'll keep you in my prayers. I am sure she is in good hands but maybe you could take a look at b12 deficiency anemia - I just thought about it as a freind of mine had the same symptoms, had to have a few transfusions and it took a while until the doctors found out what was the problem.

  8. I am thinking of you and all the family so much. xxx

  9. Julia, thinking of you and sending Chelsea all our best wishes for a swift improvement xxx

  10. Julia, thinking of you and sending Chelsea all our best wishes for a swift improvement xxx

  11. so sorry to hear about chelsea's illness, what a stressful and worrying time it must be for all of you. I'm sure shes in the best place and hope she makes a quick recovery and gets back home very soon.