Being pregnant with Celtic Dingo was wonderfully sad, and sadly wonderful.

Joy at being pregnant, fear that I might lose him too. After all, I had already had 2 miscarriages, and a neonatal loss. How could I be assured that I would get to keep this one?

The thing is, none of us, when planning a family, think there might be fertility challenges, or take into account that the pregnancy may end early or end in the loss of a baby. Or an baby with challenges. Those experiences happen to other people, not to us.

We had bought 2 of everything, we had picked matching outfits. We ended up picking out a coffin and flowers.

It had happened once, maybe it would happen again.

We returned to the specialist we had for the twins. I was nervous and expressed my fear at losing another baby. It was at this point that J took out my medical file, opened it, and we saw circles on the page.

He pointed “Here, we were wrong.”

Next page, “Here, we were wrong.”

He explained how we were misdiagnosed and as a result how our pregnancy was mismanaged. He said how we should have been delivered at 32 weeks, regardless of how well the boys were doing.

He showed us heart traces over a period of 4 days which showed Finbar to be in fetal distress. As he did, he would say, “We should have delivered them here.”

The knot in my stomach, the fear they had done something wrong, started to loosen. I wasn’t nuts, God hadn’t punished us, God hadn’t ordained that my son slowly suffocate and starve to death.

Doctors had made a mistake.

We talked some more. J mentioned how if they had delivered the boys earlier, Finbar would not have died at 11 days. I misunderstood and said he was so brain damaged, we may have got another month with him. This is when J said “No, what I am telling you is that if we had delivered the boys on 25th June, both boys would be alive and well today.”

I can not put into words the freedom and the sadness I feel when I remember these words.

I know the truth and as painful as the truth is, it is also incredibly liberating.

There is no fighting truth. Facts are facts.

J continued to be my specialist for both Celtic Dingo and 6 years later for WGO.

I have total admiration for a man who showed integrity that J did, and had the courage to put his hand up and say “We screwed up.”

J also told us that they changed protocol.  Last year, I found this to be true.

Knowing the truth hasn’t brought Finbar back, it didn’t mend my broken heart, it didn’t change alot of things.

But there is an acceptance found by understanding, and I now understand what happened.

This, of course, then led me to question the ideas I had been taught and taken on board. They had always not sat right with me, and now I kind of had proof.

Coupled with many times of throwing out questions to GOMU, and being open to hearing the answers, my ‘faith’ or ideology has changed. They sit better with me. They make life more livable, managable and enjoyable.

I thank Finbar for that.

I said that when he died, who I was died with him.  Some of who I was, I am glad to have seen die.

I can’t say time heals. It hasn’t.

I was sharing with Kimmie poos a couple of days ago. We were talking about things that have happened in our lives and how they impact on us.

I said to her, I see Finbar’s death (and other stuff) as something that left me like a shattered clay pot. But I believe through different processes, I have been glued back together. But the cracks still show if you look close enough.

I still ache for my son. But not in the way it used to. It does get easier. The blackness that surrounded me has dissipated. Yet, from time to time, I can still briefly feel all consumed by the overwhelming sadness I know too well.

I have thought about Finbar everyday since he died. I talk to him in my head sometimes. I ask God to give him a big hug from me. On special family days, I ask God to part the veil between our world and the next, so Finbar can be a part of our day.

I do not fear death in the way I used to.

I do not see God in the way I used to.

I looked into the eyes of a badly brain damaged boy and ‘got’ what unconditional love is. I realised the conditional love my life was filled with, and knew it had to change. I ‘got’ how God/our higher power/whatever you want to call it views me.

I learned the power of a spiritual realm. If I had never believed in one before, this gave me clarity.

Finbar is as much alive to me today as he ever was.

Death has not changed that.

Nor does death change the fact that he is a part of our family.

Nor does it change the love we as a family carry for him, or the bittersweet joy that we feel when we speak of him.

I can not imagine not talking about him, or not including him in our lives.

I am fortunate today that we have friends who understand and even embrace this with us.

Jane and Jamie, who I met on the internet, in a wonderful group for parents who have delivered multiples and had one or more die. While I do not think anyone’s loss is greater or less than another, our type of loss brings a different dynamic. Jane and Jamie also are scrapbookers and it was these ladies who encouraged me to do a scrapbook for Finbar. We have also shared our survivors’ successes and achievements and have cried with each other and rejoiced with each other. It has been through these ladies and others in our group that I have realised that I am not alone, and have been able to slowly work through the intricacies of prem babies and the developmental issues they can bring, the stress that the death of a child can put on a marriage, the bitter sweet moments of joy for the surviving multiple and sadness their womb mates are not here to be a part of the moment, facing up to those around us who fall pregnant with more than one baby and get to keep all theirs.  Each of our stories unique, yet the ending the same, the loss of a much wanted, much loved, but all to briefly known baby/babies.

Anja and Bettina, who every birthday and anniversary for the last, at least 5 years, have sat patiently reading the emails I have hashed out again and again describing what happened, reliving each moment, somehow waiting for a different outcome that I know will never happen.

Little things like on my 40th, the ceiling was filled with purple and white balloons. J asked me to look up, and in the sea of purple and white was a single yellow balloon. Finbar’s balloon.

Purple and yellow are the colour of the flowers I take to his grave. Purple, my favourite colour, so I leave a little of me at his grave and yellow, the colour of the sun, which reminds me of the warmth of his wee body in my arms. It also reminds me of a song we played at the funeral.

Or the time when we had the house blessing for Tir na NOg and when we reached the boys bedroom, P prayed and remembered Finbar.

I do not expect people to remember and love Finbar in the way that we as his family do, just the respect and space to honour him as we wish to, without judgment or condemnation.

I wrote this, not only to ‘finish the story’ a little more, but also in order to hopefully give a widdle hope to those new in their grief.

It may not seem it, but there is a light beyond the darkness and loneliness that grief brings.

There are miracles to be found, friendships to be made, simple beauty to be found in what you may now see as a cruel world. While none of that can ever change the tragedy of losing a child, little by little, it goes towards the day when, in spite of the loss, you are ready to smile again.