We are not a typical, conventional family, but i would not change it for the world! We are probably not what people imagine as a 'perfect' family - but there is no such thing. 'Perfectly imperfect' is what we are, just like you.
Our first born (Austin) was diagnosed with severe haemophilia A at about 7 months old, and we knew we wanted to extend our brood past one child.
Part of our plan to have a large family stems from the fact that i do not have much family close to me, nor does my husband, and when i look at other families, where there are aunties, uncles and cousins around, i see so much support. This is not to say that i do not have wonderful friends, who i am greatly thankful for, because i am blessed. But i want my own children to support each other when they are raising children, through to when they are in their old age. Other people that will care, and advocate for them, when we cannot. That if any of them do not marry, or have children of their own, that there will be a network of family around them. i want for them to always have someone close, to call. Surely there is nothing worse in this world than loneliness or feeling unloved.
We did not jump into having more children without looking at all our options, and in this country, we had the choice of going for PGD. (pre implantation genetic diagnosis) We would have been, at that point, the first to go down that track in NZ, and as they did not have a 'formula' per se, our option was to create embryos, which could then be tested for haemophilia, but just to be sure, they would 'discard' all the male ones.
Up until this point, the options previously available were to test baby up to 20 weeks gestation in the womb, and it was, and still is, legal to terminate that pregnancy in New Zealand if haemophilia is present. Personally i have huge moral and ethical concerns about that, but that is my own personal view point.
So going back to PGD, we again felt that - for us, it did not sit well with our own beliefs, and chose not to go down that path.
So naturally, our daughter Eden came to us, a beautiful wee girl, who lights up the room.
After spending time in Starship with Austin, there had been a small boy (9 months old) in the bed next to him, and as haemotology and oncology are on the same ward, all the other child patients were fighting cancer.This small child had been left alone after stomach surgery, leaving him with a scar that stretched from one side to the other. His parents (and grandparents) were at Ronald mc Donald house, and i only saw them once with him, in the week we were there, when they came to pick him up. I had witnessed something that confused me greatly, and it had the effect of wanting to reach out to these children in what ever way we could as a family.
We went through the process of becoming caregivers for 'child youth and family', and within a short while, we had placements of two babies, during this time we were approached about adopting, and within 8 days, our son Cormac came to us. He is our 'little miracle'.
The following year, John was born, he was diagnosed at birth with haemophilia, like his brother Austin. For us, this is a real blessing. Austin has no one in our city to share the ups and downs of haemophilia with, and so having a brother going through the same things, means he is not alone. There is someone close to him that will always know how he really feels. (and vice versa)
We knew we wanted another child, and we went on to look at international adoption, it was after we had finished the courses needed, that we found we were pregnant ! The ultra sound showed this baby is another wee girl! (due in July) Which is so wonderful in many ways. That is 5 kiddies, not huge, but big, by today's standards.
So while for others, they could look at the base facts and say ' i would not have any more children' - for us, we would not have it any other way. Our genetics are a part of us, and we choose to trust the natural process. We do not take for granted what others may do. We cherish the small things, we appreciate what a true miracle life is, and we intend to make the most of it.
I do not judge others for their choices in life, and where i can, i will support people. We want to teach our kids that whatever the circumstance, you can always do something to make another persons' life better. Which is part of the reason we started running a breakfast club every morning of the school term, over a year ago for our local school. My kids see children who are sent to school without breakfast and without lunch, they see kids come in with swollen lips and black eyes some days - 'from playing' ... and they see there is so much need out there if we stop focusing on our own problems, i hope to show my children a glimpse of how Christ loves.
Having children with haemophilia has changed us - for the better. Our marriage has solid foundations, openness in all things, and with each joy, and each hurdle life has, we get closer. I am blessed to have the wonderful relationship i have with my husband, and i am thankful in many ways to haemophilia, as it has brought us down a path we at first did not want to be on, but has brought out strengths in both my husband and myself, that we would never have known otherwise. So i can trust that with the new diagnosis of an inhibitor for John, it will all work out for good. Certainly we hold on to hope for a cure, but we will also insist on
The cord of 3 strands is not easily broken:
"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."
This passage from Ecclesiastes 4:12 illustrates the importance of Christian companionship. Two Christians that are bound together in Christ are stronger than the individuals themselves.
This is so true for us, and as a random bit of info - the healthy umbilical cord that a baby is connected to its mother, also has 3 'strands', i find that really significant, but you may not :)