Well its been a long time since I wrote anything on this blog. I tried a few times to post and gave up as it was all just too hard to write down. This past year has been the worse and best of my life in so many ways.
Zakk our beautiful son has gone, but he has left a legacy that has taken on a life of its own and has overwhelmed us so many times and brought wonderful amazing people into our lives who without him we never would have met.
There is no loss greater or more painful that the loss of a child and though after a while I began to feel that I should be doing better than I was as Zakk was not with us long enough for us to even get to know him, a wonderful woman pointed out to me that the loss of a baby is in many ways worse than other grief as parents are left with so few memories to keep them going and the whole future of their child and all his potential has been torn from their life.
In April this year I met Sharon Russell for the first time when I went to Scotland to a memorial fund raiser for her son Lucas. We had been put in touch some months before by Prenatal Partners for life, a wonderful website helping people like us with a negative prenatal diagnosis. Since then we have met up nearly every month for one thing or another and in June we began Angelversary together, a charity in memory of our 2 sons, sending out gifts to bereaved parents to help them through the tough days and let them know their Angels are not forgotten. We've done some fundraising with the help of friends, family and work colleagues and we hope more people will look for us on face book and join our mailing list. We have both been in touch with other families near us with similar stories to our own, and we are doing all we can to raise awareness about Trisomy 18 & 13.
I decided too some months ago to complain about the awful lack of care I received for Zakk because of his genetic "label" and that is something that is ongoing as unsurprisingly those involved are doing all they can to deny and lie about this. Its a hard decision to make and I have spent my time feeling like I am banging my head against a brick wall and I am not up to the fight, but then I just remind myself that my experience and time with Zakk could have been so much better had he received any life support at all, and he deserved so much better... Why should he have been less worthy of help than any other baby just because of a diagnosis, and some of the things that happened to us were so awful they still haunt me all these months later.
There is no monetary gain to be made by this, but there is a chance albeit a slim one that maybe something could change, maybe a doctor might think twice before they tell another mother "you wouldn't want this baby to live, it would ruin your life" !!! or before they continually tell parents "this baby is incompatible with life" or for me the worst of all, before they tell you only part of the truth about why they want to conduct tests and don't tell you up front that if they get a particular result all plans for treatment and even the most basic care for your baby will be denied him at birth and he will be handed into you arms and you will be left alone with him to die.
So I push on in the hope that maybe something might change, I have so many issues that to even get some small changes in basic treatment (the right to have a normal crib provided for my baby in hospital) would be an achievement.
On 11th August we remembered Zakk in a special way on what should have been his first birthday but what was instead his first Angelversary. We had a service in the morning followed by a balloon release and party for our friends and family to celebrate his short life. Its was a sad but lovely day and we did our best to make it a positive one and remember how his legacy lives on and he inspires us so much to keep going and do all we can to honor his memory.
This weekend Sharon came over from Scotland with her husband Andy and yesterday we all attended a sponsored walk for Cathal Cartmill organised by his Mum Annamaire to raise awareness for trisomy 18 & 13 and to raise some much needed funds for our charity and two others. Cathal was born on 8th July this year and lived for 8 hours. Also there was another friend Roisin who lost her little daughter Cerys in 2008 to the same condition. The fundraiser was a great success and Annamarie raised over £6,000 which is just amazing. It was lovely for us all to be together and there is definitely strength in numbers. I think we are helped by spending time together and knowing we are not alone.