School Holidays!

28 Sep

Are great! I did have to work on Monday so officially started the holidays yesterday. So far, we are having a splendid time. It is really nice to just be able to hang out with Tilda and the trampoline is certainly getting a work out!

Best Hair Photo Ever

 

 

 

 

 

 

 

Monday afternoon, two lovely ladies from the Make A Wish Foundation (aka my dear friends Dan and Danni) came over to talk about Matilda’s wish. To be honest, it was quite confronting. As a former Wish Coordinator, I was all too familiar with the process and procedures and never thought that they would apply to my child. Since the diagnosis, I had thought about a wish quite often and finally a couple of weeks ago, sent the form in to my very dear Dan. That hurdle over, I didn’t really think that the home visit would be as confronting as it was.

The afternoon was lovely, delicious cheese had been brought and was headily consumed and the conversation meandered through natural topics before clunking in on the actual reason they were there.  A wish to be granted to a child with a life threatening illness. My child. Tilda.

As mentioned in previous posts, denial has been an excellent friend and an excellent way to cope. Plus, Tilda is in fantastic form at the moment. Yes, she is wobbly and yes, her words are diminishing but she is really happy and bright and full of love and good cheer. So it is very hard to reconcile this Tilda with someone who is able to be granted a wish.

To that end, in true denial fashion, I am putting the wish on hold for a little bit while I sort out my head and heart. I understand now those parents that I worked with, the feeling that almost by granting a wish, you are putting  a seal on their fate. I know also, firsthand, the absolute joy that a wish can bring- to a child, to a child’s family. It is an amazing organisation and one that I was proud to have worked for.  I do want Matilda to have a wish, I just need to get my head around it a little bit more.

In light of all of the above, I would like to pay a special tribute to my very beautiful friend Dan who has had the extremely daunting task of being  the one looking after the wish. Dan has known Matilda since I knew that I was having her (possibly before – she is uncanny in her ability to sniff out a pregnancy!), she has watched her grow, watched her develop seizures, and watched her deteriorate and I know she loves her enormously. And me of course! Thank you beautiful friend, I know it hasn’t been easy but your amazing ability to radiant positiveness and fill all those around you with warmth has made, certainly my journey, much easier. 🙂

Update

On to an update on the general state of things. We had our pediatrician appointment this morning. Again, it was more of a catch up and letting her know how everything was going. The PEG feed that looms before us, is still a ways off. We do have an appointment with the Gastro Clinic to talk further but not until the middle of December. She noted that Matilda was more wobbly but was  happy with her general weight and overall health. We are still weaning the Topomax and are now down to 15mg in the morning and 25mg at night. With no significant fallout, we will continue along this path and hopefully get rid of it all together.

We will be adding further people to Team Tilda as we start liaising with Palliative Care from the Royal Children’s Hospital. The name does not invoke particularly good connotations however, they are not just there for end of life care but as a further support and resource in regards to Tilda. From their website:

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement.

We should be meeting up with them in the next couple of weeks.

And so it continues. I am very excited to have a week and a half more of school holidays which will be filled up with trampoline shenanigans, outings with my lovely sister and nephews, naps in the afternoon and relaxing and enjoying the very delicious Miss Matilda.

Much love to all

oxoxxo

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5 Responses to “School Holidays!”

  1. Cally September 29, 2011 at 6:04 am #

    The photo is amazing, how did you do it? Beautiful Tilda with hair like gossamar.
    You are right- Make a Wish seals the end of denial. And this is a hard road. But they also give joy and hope.
    Palliative care staff tend to be fantastic. Whether for children or adults. Another hard bump.
    So many hard bumps of the road for you.
    And happy moments.
    May the holidays be joyful and full of fun.

    Thank you for your wonderful Blog.
    I am honoured to read the blog and to be part of the team Tilda community.
    It reminds me of what is important in life, to go slow enjoy and be grateful for each precious moment.

    “Wake up!
    Life is transient
    Swiftly passing
    Be aware
    The Great Matter
    Don’t waste time”
    I think this is a Buddhist quote.

    Love and many many hugs to you and your husband and Tilda. .

  2. Carole and Garry Laird September 29, 2011 at 12:33 pm #

    Good morning Laura

    Thanks for sharing your journey.

    What a lovely photo of Tilda, a new hair style!

    Enjoy the school holidays.

    Carole and Garry

  3. Kylie September 29, 2011 at 3:10 pm #

    i love school holidays. and I can’t wait for next week to go to fun parks and the zoo and swimming and jumping on the trampoline. Let’s make sure we get a photo of Charlie and Thomas and Tilda all with crazy hair.
    Can’t wait.
    Oh and ps I’m in total denial. Keep up the good work.
    xxxx

  4. Dianne September 29, 2011 at 9:03 pm #

    Hey Laura,
    Missed you at work on Tuesday, but was glade to hear you were on holidays.
    Your Blog is amazing. Thankyou for allowing me to be part of your journey. I am truelly humbled…
    WOW, Tilda’s hair ROCKS!!!!!!!!!!!!!!!!!!!!!!
    Enjoy your break with your precious Tilda and be kind to yourself. Thinking of you alway and see you soon xxxxxxx
    Di

  5. Sue September 30, 2011 at 9:54 am #

    Hey Laura & Simon,

    I love Tildas frizzy hair that is quite cool! I have been reading the blog and think of you guys often. You are as amazing as your beautiful Tilda. Enjoy the holiday fun. Much Love Sue Mahar

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