One year ago today, after a feed, our beautiful three month old baby daughter Marigold suffered a terrifying apnea attack, stopped breathing for five minutes and went blue and limp in my arms. It was our worst nightmare. For a moment, we thought we had lost her. Thankfully, she started breathing again and was then rushed to hospital for a week of testing to try and work out what could have caused such a life threatening episode.
Pretty dramatic opening right??! Sorry to plunge right into the deep end, but that is the pivotal moment that life changed, that we changed as parents, and that Marigold started teaching us. So it is important to open with that.
I am not writing this with the aim of anyone feeling sorry for what we have or what Marigold has been through. This blog is to be a celebration of our beautiful unique daughter Marigold: about celebrating the love she brings to our family; about all she achieves, even though some things might be harder for her; about how she, together with her brother, have changed our lives, made us see more clearly. About how Marigold has helped us face our prejudices and fears, made us more accepting, made us better people.
If you are friends with me on FaceBook, you may have seen my Friday Marigold photos. I started posting them up the Friday after that week in hospital. The day after we were told she has a unique genetic condition, 3q11 trisomy mosaicism.
There is a story behind how we get to the genetic testing and that is a blog in itself. But that is for another time. Genetic testing is now so advanced, tests can show huge detail, micro deletions, micro duplications, every little bit of extra or missing genetic material. And this is wonderful. Science is of course wonderful. But what genetics doctors can’t say in a lot of cases, in what this means for a child’s future. A hard place to be for a parent and the sufferer of a genetic complication. I never knew until now that there is a whole world out there of children with unique genetic conditions, with parents desperately seeking answers about what the future might hold.
Genetics is a real mind bend. There are no hard and fast rules. Children with similar or the same duplications and deletions can be affected in very different ways. Sometimes a parent can be the carrier of something with no presentation at all but then pass on to their children with quite different and often devastating affects. What Marigold has is mosaic – that means that only some cells in her body are affected. How many we don’t know. How will this affect her? Again, we don’t know. Because a lot of children, like Marigold, are making medical history and forming the data which will inform future generations.
It has been a long journey from diagnosis to acceptance and now, to telling the world. For some time, we were in denial as to what it all might mean. But 14 months on and Marigold is an enchanting, beautiful, very special baby who captures everyone’s heart. There have a been a lot of health struggles, a lot of sickness and anxiety. A lot of time spent in hospital, at hospital appointments and at the emergency doctors. A lot of reliving that terrible night. Marigold is a delayed baby with weak muscle tone and we have accepted she needs extra support to reach some of her physical milestones. We know there are probably going to challenges ahead and throughout her childhood caused by that random extra bit of genetic material. But that is the same of any parent of any child, neurotypical or not. As my brother said very wisely “Maybe she will have to try a bit harder, but sometimes those are the people who end up doing well in life.” What a wonderful way to look at it.
I hope through writing about Marigold and our family life, I can make a bit of a difference to the world in some small way, whether that is to help understanding, provide support to those going through similar experiences, or to make people smile. Seeing how Marigold overcomes her challenges with such amazing positivity and strength inspires me so much.
Thank you to my beautiful Marigold, for helping me to find my voice.