When Life Gives You Lemons: Debs Aspland

When Life Gives You Lemons is my blog series profiling some of the incredible people I have met during my journey.  People who, like me, have faced adversity but refuse to be defined by it.

Next up is Debs Aspland.

I first met Debs very briefly in 2012 when we both attended the Britmums Brilliance in Blogging Awards.  We bumped into each other again a couple of years later when were invited to meet with and give feedback to the Minister of State for Children and Families.  However it was over drinks on the Southbank that I really got to know Debs and recognise her for the kindred spirit and fellow warrior she is.  She definitely shares my rebellious streak and I couldn't wait to ask her to be the subject of an interview for my When Life Gives You Lemons series.

And then she was gone

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan

I have written a book

"You should write a book"

I've lost count of the number of people who have said that to me over the years.

So I did.

https://www.stephnimmo.com/buy-the-book

I promised Andy I would.  I promised I would capture our story and share it so that people could understand that we really are ordinary people thrown into extraordinary circumstances.  I was no different to thousands of other working mums in the UK, trying to juggle a career with childcare.  Until Daisy came along, and my world changed overnight.

It's experience that has shaped me and given me the resilience to face the challenges life has presented over the years.

That's why the book's strapline is "It's not the cards you're dealt, it's how you play them"

Andy played poker and he knew all too well the game was more than the hand you were dealt.  I hope I have done our story justice.  The people who have read early edits seem to think so.

My book is being launched on 12th September on what would have been our 25th wedding anniversary.  It's my gift to Andy and a legacy to our children.

You can pre-order a copy before the launch date and receive it the day before.  For all pre-orders I will donate 5% of the rrp to our hospice, ShootingStar-Chase.

The book will be available to order from Amazon and all good bookshops on the launch date.

 International orders and ebook orders will be available from that time too. An audiobook is in the pipeline for release at a later date.

In the meantime if you are based in the UK and would like a copy, please click on the link below.

https://www.stephnimmo.com/buy-the-book

Andy Nimmo. 26/11/62 - 14/12/15. RIP.

The moment we heard the news that Andy's cancer was now inoperable we knew that the clock was ticking like never before.  We went home and booked flights to Scotland to see his family but first was a very important date, one that had been in the diary for a long time.

Even though Andy had been told he only had weeks to live it was really important to him, and me, that we attend the premier of a film which told the story of a dear friend, you can read about Danny's story  in the piece I wrote a few days later, on World Aids Day http://www.independent.co.uk/voices/growing-up-in-the-home-counties-as-a-child-with-hiv-clinics-with-codenames-and-secrets-from-a6755496.html.

We flew to Scotland the next day and had a wonderful 24 hours with friends and family - how joyous to have the privilege of saying goodbye and making sure nothing was left unsaid.  It was a bittersweet flight back to London but we came home to a wonderful week with family and friends, spending time with our children, spending time with our friends and spending time with eachother.

Last Saturday we ticked off the last bucket list item as our friends at Believe in Magic and Arsenal Football club organised the best day ever - a box at Arsenal to watch a premiership match.

 If you were told you only had a few weeks to live what would you do?  We filled every day, we saw friends and Andy was able to say the things he wanted to say. Friends flew in from all over the world, we shared the happiest of memories, we cried many tears.

But the most difficult thing was to think about the loss in our little family unit of six.  Every time we thought about him leaving the tears came and it was too painful to think about.  In a way last week we were saved from having to think too much by another Daisy curveball.  Andy had to go into hospital on Monday as he was dehydrated and needed iv fluids, 24 hours later Daisy was blue lighted to our local hospital as she was having multiple seizures and needed to be started on her second line rescue medication.  I was caught up in just being the plate spinner and had little time to thing of what was to come.

Daisy was stabilised and came home.  There was hope that Andy could have a palliative procedure to his liver that would maybe buy him some more weeks, maybe months.  But it wasn't to be.  Andy became too poorly and last Friday I moved heaven and earth to bring him home to begin his final journey.

He sat in his chair at home, had a few sips of beer , watched some TV, enjoyed the chaos of a typical Friday evening in our home.  Then, the fatigue overwhelming him, we managed to get him upstairs and into bed.

We spent the weekend camped in our bedroom, the children coming and going, stroking his hair, talking to him and telling him how much they loved him as he slowly deteriorated.  

Andy passed away peacefully at home at 1pm today, Monday 14th December.

He waited for Daisy to leave the house safely on her way to the hospice  before he died, knowing how upsetting it would be for her to be in the house at the same time.  I told him he could go and could not understand why he was still fighting and lingering on. And then it clicked, even though he had been unconscious since the night before  he raised his hand and tried to speak as Daisy shouted goodbye through the door.  He needed to know that she was safe in order to be free to leave.

In control until the end he took his last breaths while I held his hand , he looked at me one last time and peacefully passed away

 I am heartbroken but so thankful for 27 amazing years we shared together, we did not take a single moment for granted, he was and will always be my soulmate.

His legacy lives on in his four incredible children. What an absolute honour to have been able to give him a good death and to have been part of his life.

I am sitting here tonight, reading all the wonderful messages and tributes that have been sent to Andy.  He touched so many lives and it is giving us such immense comfort to know how much he was loved, we knew he was amazing, to hear others reflect it back in their anecdotes warms our hearts.

Daisy is safe in her hospice tonight, as always they have been our safety net in times of crisis.  Tomorrow I will go and tell her that this time the doctors could not fix her Daddy.  Then we will look at all the lovely pictures of things we have done together as a family, we lived so much, we seized every moment, we took nothing for granted.

Thank you Andy, for everything.

Rest in Peace, my love.

Do I inspire you?

I heard this week that my blog has been shortlisted in the the Inspire category of the equivalent of the the blog oscars, the Brilliance in Blogging Awards or BiBs (some of you may remember that two years ago I reached the final of these awards).

Another brick in the wall

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support for special education needs - that's 3 out of four of our children who learn differently, who need support to help them access education and achieve their potential.  Realistically though it should only be one of my children who needs this extra help - Daisy is the one in special school with a learning disability, visual impairment and highly complex medical needs which limit the time she can spend in school.  It's completely logical that she should have a statement and funding assigned to her to help her reach her potential.  But my boys, differently wired, with their own unique learning styles, they have high IQ's, they are eager to learn, they just learn differently - the way they do things, their idea of success and achievement, it's totally out of kilter with our modern day, sausage machine education system.

Happy 5th Birthday " Was this in the Plan?"

Today is 5 years since I started this blog.  5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay which eventually lasted for 12 months.  5 years ago this month she had her first central line inserted into a main vein into her chest, the tip of which rests near her heart, and she started on the intravenous nutrition (TPN) she still needs, 5 years on, to keep her alive.  I started this blog as a way of recording what was happening in our lives at the time, over the years it has evolved and changed as we have had to adjust and change to the constant challenges being thrown to us.

Getting it into perspective

We seem to live in a time of competitive parenting, and nowhere more so than London.  It's all about getting your child into the right school, playing the right sport, attending the right clubs, having the best parties, what grades they get, what they are learning...it can drive you crazy and make you feel insecure. Sometimes those insecurities then leak into other areas of my life - I blog for me and the people like me, so why do I feel the need every now and then to engage with the (insert your own adjective here) community of Mummy Bloggers, it only makes me feel inferior that I am not listed in the Tots100 blogs, or ranked as one of the best Special Needs blogs, or that I just don't have the time to sit for hours on end tweaking the look and feel of my blog.  Really all these pressures make me forget my number one rule, focus on what you have, not what you don't have.

Why do I do it?

So why do I write this blog and bare my soul to thousands of strangers week in week out?

I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years.  I wrote my first  post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.

Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome.  Similarly, Theo, our oldest son,  was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four.  We had no inkling of what was to come.  A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable.  It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post