Christmas

We’ve had some interesting, and quite frankly horrible, Christmases since our daughter was born. Her first Christmas was spent in hospital. She was tormented. We were tormented. Not exactly the Christmas we had hoped for (Read about this and where our journey started here).

At just turned two our daughter was with us when we were involved in a fatal road accident just weeks before Christmas. We were powerless to avoid the girl who stepped out in front of our car travelling at 50mph. Her family’s world fell apart that Christmas – as did ours. tree The following Christmas remained a sleep deprived blur, but it felt different. We enjoyed hosting for eight and, although life was not easy, it felt like it might actually be ok. Although concerns about our daughter remained we were hopeful that the New Year would hold good things and that whatever traumas we had experienced we could perhaps overcome them.

We couldn’t have been more wrong.

Our daughter’s fourth year brought her further struggles. We watched her gradually deteriorate until her difficulties culminated by the autumn in what can only be described as a ‘breakdown’. We watched our sweet, darling girl disappear. She had gone. What remained was a frightened, anxious and angry child who was in constant ‘fight or flight’ response.

Old feelings, reminiscent of our daughter’s first year, enveloped us once again and we watched helplessly as the girl we once knew became unrecognisable. She was pale and her eyes sunken with dark circles. She began to refuse the drink and few foods she once enjoyed. Her clear speech that had always been in context became gibberish and she developed vocal and motor TICS. Sensory struggles became overwhelming, her hyperactivity hit the roof, she stopped playing, was governed by obsessions and compulsions and suffered extreme, angry and violent meltdowns, triggered by seemingly ‘nothing’.

Separation anxiety consumed her. She could no longer manage church or nursery or things that she once enjoyed such as soft play, toddler groups and parties. Simply moving to an adjacent room in the house would result in hysteria. We rarely got further than our street corner before a panic attack ensued and I would have to carry her home again.

Words continually distressed and tormented her and we spent the months running up to Christmas whispering and sat in darkness as our speech became ‘too noisy’ and she fought to keep curtains closed each day. She became deeply distraught by these and other trivial and irrational things.

She would roll on the floor, wrapped in blankets, pleading with us not to look at her. My husband recalls the previously happy child, who once ran up to greet him on his return from work each day, curled up on the sofa shouting at him ‘Go away’ and ‘Don’t look at me daddy’.

Her sleep became increasingly disturbed and restless and she would wake shrieking at me to be quiet as I slept. I felt such huge waves of grief as I lay next to her, studying her perfect and innocent face. I wept while pleading with God to tell me what could possibly be tormenting our beautiful girl so much?

She didn’t want to be ‘Me’ anymore. She wanted to be ‘mummy’, a ‘teacher’. Someone bigger. Someone more powerful. Someone who could control the overwhelming feelings. She would plead with me to help her and I couldn’t.

And no one else could either.

I felt so very frightened – terrified in fact. And once again we found ourselves amongst the panic and desperation, the appointments and trips to A&E, and the blood tests and medication. She was treated for Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). (Learn about what these are here)

We still to this day do not know exactly what happened to our sweet baby girl. What we do know is that anxiety came and it took her. She was no longer there. So very frightening…and the grief…it was painful…a deep, deep groaning pain.

Christmas was so very hard that year. We had considered going for a walk on Christmas Eve but our daughter wasn’t able to. After a truly disturbing Christmas Day morning we somehow made it to our friend’s house for lunch. The meal was quickly cut short as, leaving my husband, I had to bring our dear girl home again, kicking and screaming, overwhelmed and panic-stricken. I spent the day cradling her in a dark room, with a Thomas the Tank Engine film on repeat. God how I’ve developed a love-hate relationship with that little engine over the years.

So, as this Christmas approached, I was confronted with an overwhelming mixture of emotions. As the Christmas lights appeared, memories of the terror hit me – grief and trauma over what has been and gone, and all that is here to stay.

But amongst the pain has been thankfulness. Not only for those who stood with us through the darkest hours, but for the strength and resilience of our daughter which has carried her to the place she is now. Little by little she is regaining her feet and we have been learning afresh how to live our ‘norm’, which is so far removed from most others. This means letting go of what we once thought was within our reach and realising that it is unattainable. It involves a lot of grief…and acceptance.

Our girl is strong but she is different now – and so are we. There are some things, like our daughter’s first year, and her last, which do something irreversible – damage which can never be repaired. At least this is how it feels right now. We cannot re-assemble the broken pieces of our lives. We lost them on the way. They are gone now. But we can build a new life, however that may look.

So, once again, Christmas wasn’t about the presents, food or lights, or how we celebrated it. It was about whether we did – whether it was do-able. It was about protecting our daughter. And she surprised us. We spent the day with some faithful and loving friends who reminded us of what Christmas can look like. And she coped.

The day was ‘different’. Our daughter was fixated on us opening our presents to each other rather than her own – strange, but endearing all the same. We laughed as, having declined her dinner, she sat under the table squawking the rubber chicken that Santa had brought her. When asked which present was her favourite she replied ‘The one I gave to you mumma’…and my heart melted.

As we watched the New Year fireworks together from her bedroom window, our daughter clung to me, squealing, gasping and pointing in delight. And I was reminded that our struggles are not with our kind and loving daughter, but her condition.

So, I am left wondering what the next year holds for us. Life is no bed of roses. Actually it’s bloody hard. And I will admit to feeling fearful. I have been hanging on by a thread for a very long time and it won’t take much for it to snap. But what I do know is that our daughter is strong – and so are we. So we enter into 2019 head on, knowing that what will be will be. And we are ready for it.

We are already experiencing the backlash of the festive season, but one thing this Christmas has brought us is hope of a better future – something we once thought we had lost.