Make it so






I was given this piece of advice when I was 30, 16 years later it is still the mantra by which I live my life and the one I always come back to when I am floundering.  Is it important to me?  Then I will make it happen.

This is the reason for so many aspects of our life with Daisy that maybe from the outside world look easy.  Recently months, years even of long, painful work and negotiation have come together to the point where we now have a fantastic respite package.  Lots of factors were in play to make this happen, not least the increasing speed of Daisy's deterioration, but also our determination to make every second with her count.  Making time count is difficult when you are picking yourself up from the floor with exhaustion.

We have had to face some stark realities.  Daisy cannot cope with full time school, even though she is in a specialist setting with the smallest of classes and a one to one assistant glued to her side, the physical effort involved in just getting through the day was too much for her.  In addition her fluid requirements and intravenous infusions mean that she only has four hours in the day when she is not attached to a TPN pump or syringe driver.  We had to face the fact that the best thing for Daisy was to reduce time spent at school to the minimum she can handle.  Now she attends school for two full days, accompanied by a nurse to do her IVs and TPN, and for an afternoon when she is pump free and can be cared for by a health care assistant.

We have also agreed to a shared care arrangement with social services where Daisy will spend two nights a week at the Children's Trust in Tadworth where she can properly rest and recuperate away from our crazily busy home.  She needs this time to just chill and relax, fatigue has really become a big factor in her life, her stamina has decreased and her tolerance for exercise or too many activities in one day has diminished.  Her body cannot do what it used to be able to do but typical of Daisy she is still determined to try.  This often results in sensory overload and seizures or hyperactive behaviour so having a couple of days a week where she is just quiet and relaxed is really important.

It is also important for Daisy to have space to just be a little girl, 18 months ago she was able to attend Brownie Guides, this is now impossible but at least going to the Children's Trust allows her to have time doing all the activities other children her age would be doing.  But there is no escaping from the reality, the past two years we have seen a big deterioration in Daisy's health.  She now has severe cardiomyopathy, the seizures have really taken their toll and recent orthopaedic surgery has not enabled her to walk unaided, and while she can take some steps they are mainly to transfer from her chair to the bed or car and not to walk independently.

We are more determined than ever to cram as much into Daisy's life as possible, she is life limited so in the limited time we have - be it months or years, our job is to give her a lifetime's worth of experiences and for us to have as many happy memories as possible to look back on.  We can't be limited by excuses for not doing things, we need to make them happen, procrastination is not a luxury open to us.

Daisy's determination to live life to the full is an inspiration to all of us and should serve as a reminder of what is important.

We took Daisy back to Disneyland at Easter, flying is no longer an option with all her increased risk factors (so we are so grateful we were able to go to Florida in 2010 and make that happen), this time we went to Disneyland Paris.  The sun shone, our plans fell into place, Disney worked it's magic and we had the most wonderful time - as you can see







Yes it was incredibly stressful for Andy and I - 4 nights away from home, no nurses, a full on medical regimen plus two other children to look after (Theo didn't come with us), we knew it would be hard, and it was, we barely got time to speak and tensions were high but one look at Daisy's face when she met one of her heroes reassured us that it was all worthwhile.  It's all about these precious moments, family time together when Daisy is well and we choose to focus on these (even if we did end up having to rid the Buzz Lightyear Lazerblast ride 7 times!)


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Behind the scenes in our lives are plenty of difficult times, arguments, stress, worry, fear but we try to focus on the positives and only show these. Some days I am sick with worry as I see Daisy in agony or worry about yet another down turn in her health.  A couple of years ago Andy described our lives as being like sitting in a car, knowing it is going to crash but not knowing when or how it will happen. We are learning to stop bracing ourselves and look out of the window and take in the view, we are trying to live for the moment.

With every curveball throw at us we are adapting, even our nemesis, epilepsy, will not define or limit what we can do with Daisy.

One day I want to look back and know that Daisy's short life was still a life well lived and a full life.

Recently I have been thinking about how I can help Daisy fulfil another ambition, she loves Tom Thomas, the search and rescue pilot from Fireman Sam .  She would love to ride in a helicopter like Tom's and gets very excited when she sees one flying over the house.

I guess I had better take the advice of one of my heroes.......


3 comments:

Looking for Blue Sky said...

inspiring, should be read by every special needs parent xx

Lucas James said...

Beautifully written Steph, and the photos are great! I loved the bit about looking at the windows now, even though you're still waiting for the crash - I hope that when that happens the memories of all this treasured time with Daisy will...well, I hope they will hope dull the pain a little but that sounds really clich├ęd - I trust you'll know what I mean.
Thank you so much for sharing
Take care
Lucas

Twinsplustwo said...

A wonderful post Steph, and I wholeheartedly agree with you. You are definitely an inspiration!

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