Christmas is a time for us, a time to simply be, to enjoy and remember. A time for gratitude, and for us, a time to recall receiving the greatest Christmas gift ever.
|Family Downs Side Up (I'm behind the camera)
My fingers can never quite manage to meet the keyboard, to tap out those precious memories to share in blog form. So many posts in my head but once in a while it's important to pull the online plug and focus solely on family.
This December, as always, my mind turned to our wonderful medical saviours over and over again. From the time of Natty's birthday on the 6th December until the anniversary of the day we were allowed to bring her home from the neo-natal unit on Christmas Eve, 8 years ago, I slip constantly into an emotional reverie.
I remember each of the days spent at our baby's side, desperately trying to encourage her to feed, expressing every precious drop of her milk. The worry that cannot be put into words, the nonsensical fear of loving her too much in case we lost her. The words of the song by Depeche Mode that played constantly on the car stereo as we drove back and forth from our new infant to her sister, at home in Grandma's care. The bottom had dropped out of her two-year old world. Why was her baby sister not at home? Where were Mummy and Daddy? Why were they crying so often? Her rocks were not looking as stable as they had until this point.
"Angels with silver wings
Shouldn't know suffering
I wish I could take the pain for you"
And so, while prepping vegetables with our daughter-in-law in the kitchen on Christmas Eve, I thought back to the moments we nervously brought our youngest home, still afraid and shocked by the unexpected diagnosis of Trisomy 21. How I held a vigil over her in the living room night after night, too afraid to sleep, waiting for the heart monitor to sound. How we felt so nervous bathing and dressing her. Just afraid of breaking our little doll.
As I topped the brussels sprouts Michael Buble's All I Want for Christmas played in the background and brought the raw emotions back. Of wanting our daughter home so much, but of feeling inadequate, that we weren't up to the job of caring for her, being her parents, for she was so very small and vulnerable, nose tube attached. The unknown future terrified us as we moved from the safety of the hospital ward, where others cared for us all, but where our baby didn't yet feel like our own. Yet the joy at bring her into our warmly decoarted house, showing her around, introducing her to extended family, held aloft in our arms. Our Christmas born Natalia was the greatest gift of all.
And as the festive music filled the room this year, how I wish we could all go back and live those early moments anew, knowing what we know now.
Ony days before Mia had expressed the same emotions albeit in the way a ten year old knows best. They flooded angrily forth in the very same kitchen, the heart of our home, as we had reminisced about the girls Christening ceremonies.
"Mummy, I really wish I could go back
and do it again.
I hate them for not letting me in to see her.”
The words of our 10 year old daughter sliced into my heart, where they met and mingled with my own raw emotions.
Such comments time travel me back in an instant to their arrivals in our world.
We all need to have family yarns knitted into our soul in order to plant our roots firmly, to know who we are, and to know we are loved. The conversation had begun, trying to remember whether Mia had cried when the holy water touched her forehead.
She hadn’t. She had looked serene in her faux fur trimmed cape and gown. She had enjoyed hugs with all the family and friends gathered in the church for her special day.
We had hosted a big party, a celebration of life for her younger sister Natty too. A Summer garden party as it happened, with sun-kissed guests who included medical staff who had been key in her journey. There was finger food and bubbles, music and dancing.
But her Christening had taken place months before. I don’t remember water touching her forehead. There was no frilly gown, no music, no gathering of family and friends. For Natty’s Christening had taken place on the neo-natal ward, wearing nothing but a nappy and a heart monitor as she lay in her incubator.
|Natalia comes home on Christmas Eve, the best gift ever
Mia’s angry outburst brought me right back to this place, standing sobbing a few feet away from a hospital Minister while he uttered words I will never remember, I probably never heard. My mother and husband stood beside me.
Little Mia, baby Mia, big brown eyed, soulful Mia full of cold and banned from the ward. She could not understand the danger her germs could bring to the babies within it. She watched on through thick glass from a viewing corridor with her Uncle Carl holding her firm. They watched on, spectators of the worry and fear in that room and I will never forget the pain on my brother's face, as he too was distanced from the support of our hugs. Read Uncle Carl's words here.
|Uncle Carl and Natalia at her naming party
And right at the heart of it all Baby Natalia. Listening, feeling, knowing she was loved and valued.
|Seeing the festive season through the eyes of our grandson Max
|Fun and excitement on Christmas day
A Frozen Castle, gathered Copenhagen by journalist Victoria Lambert who we had had the pleasure of meeting that Summer for Natty, and swish rollerskates festooned with rainbows for Mia.
"Put them on later Mia,
we'll all go outside and
help you learn to use them."
My words fell on excitedly deaf ears, and ten minutes later we were soothing a sobbing child and plying her with sweet tea. The roller skates had indeed been donned and used without supervision, while I stuffed torn wrapping paper into bags to recycle, and she had come crashing down on the cold hard tiles of our hallway.
Once again at Christmas we found ourselves in the care of jovial medical professionals. This time in Accident and Emergency at the Royal Cornwall Hospital where we sat amongst novelty slipper, sprout and skateboarding victims. We had to giggle at how predictable this all was but we were filled with gratitude for the welcoming good humour of the staff, how promptly we were seen and the fact that Mia' injury did not seem too serious.
As Mia is a keen pianist we were concerned about the greenstick fractures to her fingers, but assured they would heal themselves. Just rest, ice, support and no more skating for a few weeks.
Today, a week on, we sat in the Fracture Clinic watching the full cross section of of injured society wait around us. As we sat and hugged and chatted and talked about friends and school, a message popped up on my phone. It was a message of congratulations.
I am enormously proud to announce that I have been listed as one of 25 Rising Stars by the Health Service Journal.
All the other #HSJRisingStars are medical professionals going out of their way to improve patient experience. Described as inspirational and changing the future of the NHS.
For a blogger, a Mum with a pen and a voice to appear amongst those names is incredible. All at once I felt proud, humbled, embarrassed, a fraud even. I was taken back to my initial motives for beginning Downs Side Up... that new parents wouldn't feel the unnecessary desperation I felt in the early day through my own ignorance.
A key part of that is removing the assumption by many that Down's Syndrome is to be feared and eradicated. By reaching out to those in the medical profession and working together with them we can collaborate to make real differences to families moving forward, from point of diagnosis and for all the years after. If a few of my words here and there are making a difference, then it's worth all the hours glued to my PC.
"Hayley challenges the way I think as a professional."
I can't think of praise any higher than that. For many inspirational professionals that I have met change the way I think as a parent.
I can think of scores of people who should be on the list, and maybe next year they will be. Campaigners, patients, medical professionals, all doing their bit to improve patient experience and healthcare for all.
So with Christmas behind us we look the New Year in the face, and I am doing so with gratitude for our NHS in my heart.
Happy New Year to you all.
|Gratitude for our greatest Christmas gifts, those of health, love, care and security
Please do add your thoughts, hopes and aspirational posts for 2015 to our #TeamT21 linky below: