It's about time we stopped treating disability issues as an afterthought

A couple of weeks ago I decided to take Daisy to an inclusive Dance & Singing workshop at the Royal Festival Hall on the Southbank in London.  I had seen it advertised the day before and thought it would be a fun thing for us to do together on the Saturday morning.  We live in London, we have an amazing mass transport system, except, of course, if you are disabled like Diasy, then getting from A to B involves a lot more planning and preparation.

22nd March 2016

Today I was supposed to be in Brussels.  Today was supposed to be a day just for me, a first chance to get away with a friend and have time to wander, shop, visit museums, eat, drink.

Today ordinary people were going about their business when their lives were shattered by terrorist bombs.  They left their homes, their loved ones, never to return.  All over the world this is happening.  Not just in Brussels today, in so many cities lives are being changed immeasurably, forever.

I could have booked onto an earlier train, I could have booked a flight instead of the train, I could have been in Brussels when the bombs went off.

 When the first messages began filtering through about a bomb in Brussels airport we were already on the Eurostar train, with five minutes to go before departure tweets started coming through about further bombs on the underground and we took the decision to get off the train.  This was all to the great surprise of our fellow passengers and the platform staff, seemingly unaware of what was unfolding at the other end of the line.  Being a parent of a child with special needs you think about scenarios that other people probably don't have to contemplate, my main concern was being stranded in another country and not able to get back for Daisy.

 As we go about our daily business none of us know what is around the corner.  Today I was fortunate not to be caught up in a terrorist atrocity, my children were spared the stress of worrying about where there mother was and when she would come home.

I spent a lovely day in London with my friend, rather than being angry that our plans had been ruined we were grateful that the sun was shining and we were able to enjoy time in our wonderful city.

Tonight I'm thinking about the families in Belgium who never got to say goodbye.

Don't leave things unsaid, don't live with regret, don't live with fear, life really is too short.

Memories, milestones & wishing time would stand still

So we're mid way through March, spring is definitely here in London.  Yesterday I did a 20 mile training run in preparation for the London Marathon.  The Thames towpath was slowly coming back to life after winter, hawthorn blossom, clumps of daffodils.

Easter is looming full of rebirth and new life, but I want time to stand still, I wanted time to stand still from December last year.

I'm not alone in this, a recent conversation with another woman  also widowed prematurely in 2015 confirmed she felt the same as me.  We both discussed how New Year's Eve had affected us, I wanted the year to go on forever because the chime of the bells at midnight meant that we were no longer in the year he had died, that it was already in the past, she felt the same, it was a relief to know I was not being irrational.

Bye Bye Daddy - Talking about death when your child has a learning disability

This is the makaton sign for sad

And this is the makaton sign for Daddy

Daisy uses these signs all the time at the moment, she uses them a lot when people come to the house because she wants to tell them about daddy.

She also uses her voice , at least 100 times a day she says “bye bye daddy” .

One Month. One Week. Bowie.

Today is a sad day.  One month ago today I held my husband's hand as he took his last breath.  I told my children that their daddy had passed away, I tried to help my learning disabled child understand that daddy was not coming back.

A week ago we held his funeral.  We struggled through my daughter's birthday, Christmas and New Year before we could say our final goodbyes.  We had an evening of celebration on Saturday 2nd January filled with laughter and stories, eulogies of hope and pride.  His funeral on Monday 4th January was when it hit me.  He was not coming back.

My Eulogy for Andy's Memorial Service

We gave Andy a wonderful send off, filled with friends, laughter, music, stories, just as he wished.  People travelled from all over the world to be there and it gave the children and I such comfort to see all these fabulous people from so many areas of Andy's life talking and sharing memories.  We held a Celebration/Memorial Service at Andy's former Drama School in London on Saturday 2nd January and followed it with his Funeral Service on Monday.

We played many of the songs that Andy had requested and friends sang, read and shared stories of time spent with him, we even had a singalong to Hey Jude at the end of the memorial!

Our children delivered incredible, heartfelt eulogies at the funeral, telling everyone how they would life the life their Dad had prepared them for, full of optimism and hope, fulfilling their potential and seizing the moment - I not have been more proud.

I spoke at both the Memorial Service and at the Funeral and here's the transcript of my speech at the Memorial - it is very lengthy so you may want to grab a cup of coffee before you start reading, it's just indicative of the full life Andy lived.  Thank you to everyone who has reached out to our family over these weeks, now we are going to have to learn to live yet another new life, this time the one without Andy.

Daisy has been amazing, just like the rest of the children and we will be releasing some balloons in the next day or so with her so that she can say her own private goodbye, I will also blog on what it has been like helping a child with a learning disability understand that their daddy has died as I have already learned a huge amount on what and what not to do or say.

Steph's Speech for Andy's Memorial Service - 2nd January 2016

Andy and I spoke a lot about funerals and celebrations, he was determined that his friends who knew him well and had shared so many experiences had an opportunity to share stories and have a laugh and reflect on a life well lived.  It was never going to be about mourning or regret, that wasn’t Andy.  The thing he really wanted you all to know was that he did not lose a battle with cancer.  For him it was about optimising the odds, science, drugs, knowledge a smattering of NLP to give him the longest survival time.  That time was just over a year.  It was in the end less than he had hoped for but more than we ever thought possible in November 2014 when we were told that he had advanced, incurable colorectal cancer.

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.

St Andrew's Day 2015

30th November, St Andrew's Day.

Andy was born on  on the 26th November in Kilmarnock , Scotland.  His parents registered his birth on St Andrew's Day, giving him the name Andrew Paul in honour of the Scottish patron saint.

So we thought St Andrew's Day would be a good day to tell you some sad news.

Last week Andy was told that the cancer that his medical team had worked to hard to make operable was now infiltrating the liver and no further active treatment options were available.

His care is now palliative, supporting his symptoms in order to make him as comfortable as possible during this final phase.

We always knew this time would come, we just did not expect it to come so soon - a year, five years, the outcome was always going to be the same.  The brilliant medical care Andy has had has given us a year.  And what a year.

When you know your time is limited you have to seize every moment.  We learned this early on with Daisy, we  knew that our time together as a family of 6 would be shorter than most, we just did not think that it would be Andy who would go first.  But as we always say, it is what it is and while it is so sad, Andy's diagnosis has created the most precious opportunity to say goodbye and plan for a good death.

We are enjoying this time together, seeing friends,  fitting in a 24 hour visit to family in Scotland, looking at old photos, sharing memories and having the biggest laughs as we remember all the incredible things we have done and the people who have been part of Andy's journey.

We feel privileged to have this time to prepare and say goodbye.

Seize the moment and take nothing for granted.

Sending all the love - it's a wonderful life.