Mama's Haven

Georgie’s death taught us many things about life, about ourselves, about each other.

One thing we are adamant about now is making each moment count. Seeing Georgie getting so ill, so quickly and passing away a short two and a half months after diagnosis made us understand that life needs lived to the maximum each day, as there are no guarantees for the future.

As I wrote in my previous post, the Children’s Hospice has been instrumental in us wrapping our minds around the reality of now.

We have been adamant and intent in our determination to enjoy our lives and the country we live in and have made it into a goal to visit new places every time we can afford it financially and emotionally.

So far this year, we have travelled to Bray, county Wicklow, we have driven to France and seen a bit of Normandy, Brittany and Provence, and we have enjoyed Armagh and Lisburn (more on its beautiful eateries and local crafted beer soon, in a different post).

This weekend, Alex, our self-appointed but very able travel guide, decided it was high time we enjoyed a spot of county Fermanagh, known as the Irish Lake District.

We started our adventure with a wonderfully presented brunch in a star-studded, award-winning eatery in Enniskillen.

The Jolly Sandwich Bar is highly rated on TripAdvisor and known to be popular with celebrities finding themselves in the area. And, most importantly, it makes some gorgeous sandwiches and scones too!

While Emma and I stayed behind and spied for important characters enjoyed our gorgeous grub, Alex stepped next door and had a pampering haircut in one of the most unusual barber shops around, carefully redecorated to resemble a vintage train station!

At the Headhunters Barber Shop & Railway Museum, we found two jovial barbers, only too happy to pose for pictures and indulge our questions about their beloved place of work and souvenir collection!

A place worth visiting, for sure, especially for the contagious joviality,  pleasant work atmosphere and the beautiful collection of railway antiques!

We were only getting started on our adventures, little did I know, and our afternoon was filled to the brim with rain, intriguing discoveries and exciting exploits of the local area.

First, we visited the Marble Arch Caves Global Geopark.

We learned that limestone, water and time can make, when mixed together, in right amounts, beautiful things, like stalactites and stalagmites. Made me think that our lives, as well, when mixed with tragedy and given time, have the potential to produce beautiful results. Even in the dark. Or maybe, thanks to the dark….

Our next stop was Florence Court House, one of the National Trust gems in Northern Ireland.

Emma was impressed with the size of the house and the opulence of the furnishings but most importantly, with details about the house fire in 1955 and how the lady of the house had to run downstairs to wake the servants and raise the alarm. She was also extremely well-behaved and totally taken by the Oscar Wilde inspired play which followed , so whoever believes a five year old cannot enjoy a National Trust visit is gravely mistaken.

We ended our day in Lusty Beg, a tiny little island which can be accessed by ferry only and which features a restaurant/bar and accommodation in the form of luxurious lakeside cabins.

We enjoyed a lovely meal before making our way back to our B&B in Kesh.

Another change this year has brought has been the personalization of our travelling experiences. We used to like staying in big, impersonal but fancy hotels but we have started enjoying smaller, more intimate accommodation recently.The Tudor Farm suited our needs perfectly and we really enjoyed our home cooked breakfast and interesting conversations in the morning.

We couldn’t leave county Fermanagh without having visited the Belleek Pottery Centre. I had known about the fine china produced in Belleek since having moved here, almost eight years ago so I insisted on a visit. We weren’t disappointed as, again, we managed to view a presentation on the history and handmade process that characterises Belleek pottery that made us appreciate even more the delicate skill of producing it.

There is much more to write about regarding our visit but for now, I need to bid you goodnight.

We loved county Fermanagh, despite the constant rain and we have already made plans of visiting again before the summer holidays as there is soooo much more to discover and enjoy!

How have you spent your long bank holiday weekend?

Northern Ireland Hospice for Children have asked our family to be part of a very special series of events they will run in the weeks to come.

The events will include a series of interviews with parents that have experienced a stay in the hospice with a sick or terminally ill child. A beautiful photo exhibition in the Belfast City Hall of children who have enjoyed or benefited from a stay in the Hospice. A speech address to dignitaries about the vital role the Hospice plays in respite and end of life childcare.

Alex will speak in the city hall that day. Georgie’s name will resound in the same hall where so many important speeches and decisions have been made over the years. My mother’s heart is proud. My boy’s name will be spoken out loud and his story be known. But most importantly, the circumstances of his passing will hopefully inspire others to choose the hospice if faced with the unthinkable; to donate even more so that the place continues to exist and its services to bring comfort to many more families. My boy will serve in his death many others. His death will never be in vain!

What did the two last weeks of Georgie’s life we spent in the Hospice mean to us as a family?

Precious time together

The Hospice is not a hospital but has the feel of home. For us, it did become home for those two weeks. Thanks to the very deep understanding gained by the experienced staff over the years and the sensitive way in which they dealt with Georgie’s pain relief and feeds, we were able to relax and just be with him.

I cannot explain how paradoxically liberating it felt to be able to just enjoy our son, after those absolutely draining months in the Children’s Hospital.

I cannot stress the importance of those moments, hours and days we had creating memories, cuddling, listening to music, talking to him.

Although the nurses took the (overbearing for me) responsibility of managing the pain, they were nevertheless able to guide and assist us in a thousand wonderful ways of making Georgie’s last moments count. Nothing was seen as impossible, not even making the dream of swimming as a family reality.

Comfort and palpable love.

Love was wrapped around us tight in the form of cooked meals and a warm and clean room to crush in at the end of the day. And a day bed in Georgie’s room, especially designed to witness cuddles with him.The same bed on which we cuddled on the night of the 5th of July 2014, when our baby left us behind.

We felt loved any time we were offered the chance of a chat or a rant or a good cry and no judgement.

We felt love, oh so much love, in the way the nurses cared for Georgie, in the way they ever so carefully and respectfully treated his pain-ridden wee body. In the way they assisted me in bathing and dressing him and making him comfortable every single moment of every single day we were there.

We were loved through music therapy, counselling, art sessions(we did loads of family footprints paintings) and walks in the garden.

We felt love in the way they respected our pain once Georgie was away, allowed us to spend one last night with his little body and made the room in which the memorial service was held a haven of peace. The room was filled with the memories we had created together and never felt like a mortuary, it actually felt like a cozy family room.

We felt love in the way we were encouraged to spend time with Georgie even after his soul had flown away and how death never became a scary thing to Emma who wanted to be with her little brother until the very end.

We felt love in the way our baby’s existence was celebrated, mourned and is always remembered in the Hospice. I know for sure that there will always be someone in the Horizon House who will be willing to talk about him, cry with me and always, always remember his precious existence.

Thank you, Northern Ireland Children’s Hospice for loving my son like family, caring for him with utmost respect and compassion and making his passing bearable for us as a family.

Thank you for making every moment we had with him count!

Our gratitude will never be enough.

Exactly one year ago tomorrow, my baby boy stopped eating.

Within 24 hours, he had to be rushed to the hospital, from where he was never allowed to come back come.

Within 48 hours, he would have had so many medical procedures done and so many chemicals pumped through his wee body that he would stop breathing and he would end up in the NICU.

Hell on earth?

Most definitely. It was.

For us.

But most importantly, for my little baby boy.

The pain. The poking. More pain. More poking.

Looking back, there is a number of things that torment me out of my skin.

One of the worst?

Paradoxically, not having been told the truth.

We strongly suspect our very experienced oncology team knew from the very beginning that the chances of survival were slim.

We also knew that realistically, God wasn’t going to perform a miracle and that Georgie was headed for the exit before he had even had a chance to start the living.

But we chose to fool ourselves.

We chose to believe in something God had never promised us.

Were we fools?

Yes.

We were.

I have one very big regret and one single piece of advice for people finding themselves on the threshold of death with their precious little ones.

I regret not having had Georgie out of those four hospital walls as soon as possible.

I regret not having fought for his right to be home with his family.

To be out between chemo sessions, enjoying the fresh air, the birds, the sunshine, the salty sea breeze, a seesaw, hugs and cuddles with Emma, lashings of love from his granny and from us.

I regret not having given his the best of chances to enjoy this world when he still could have had.

When he was still aware of the world.

When he could still comprehend.

Before the pain became all-encompassing. Overwhelming. The only sensation.

I also regret being a coward and deluding myself with fantasies of healing and miracles.

I should have known better.

I should have known by the lack of evidence that these things happened a long time ago and are not the norm.

I should have looked the reality in the eye and accepted it.

You see, we fear death absurdly in our society.

To our detriment.

To our children’s detriment.

If only I had known that even the death of a child can and will be survived.

If only I had known that lies and half truths hurt much more than the reality itself.

Death is part of our existence.

I know it now.

And so is pain.

In my despair to avoid one and to deny the absolute reality of the other, I lost myself.

I lost myself in anger. In self-pity. In denial.

And I lost precious time I could have gifted my son on this earth.

Time that I will never get back.

But here I am now.

I have lost a precious son.

And I have learned a precious lesson.

A lesson I wish I could pass on to anyone who has children in this world.

You were not promised anything when that precious bundle of joy entered your life.

All we are given is today.

Make the most of now. Of this moment. Of the present.

Even if you are standing on the threshold of death with your precious little one.

The present is still yours to grasp, to enjoy and to make the most of.

To gift to your children.

The only and the most precious gift you could ever give them.

The gift of time with you, the gift of time basking in the beauty of this world and of your love.

Will you fear death less and enjoy life more?

In my son’s memory.

It would bless my soul much more than any words of comfort, than any gifts, than anything else on this earth.

Knowing that the world is being enjoyed as it should be.

Even from the threshold of death.