Our family - two years on (written in 2001)
We really can not believe that Joanna has been gone for over two years; the memories still seem so fresh, the rituals and routines that we followed in looking after her fo familiar and normal. Yet so much has happened since July 18 1999.
In late October 1999 Judith became pregnant for the third time, and what a mixture of feelings that produced. We were obviously happy, but it had not been long since we had lost Joanna. And of course, we knew what a new pregnancy could mean.
We had an agonising wait over the New Year holiday into 2000 for the results of the CVS test which would tell us whether or not the baby had Type I Spinal Muscular Atrophy. What would we do if it did? The worry was intense but we were lucky - the results showed that the baby was in the clear as far as SMA was concerned.
On June 23 2000, Judith gave birth to a baby boy weighing nine pounds exactly. We eventually decided to call him Edward Joe, the second name being a tribute to his late sister, Joanna. But for about a week or so he was simply known as 'boy'!
At the time of writing, Edward is now 14 months and Rhianna, his big sister, is nearly five and about to start school. Joanna would have been three in October and not a day goes by when we don't think about her. I often wonder how she would have been now, and what she would have become as an adult.
We have had a hard time in recent years because of SMA, but we have also been very lucky to have two healthy children, and we know couples who have not been so fortunate. If you are reading this having been through the pain of discovering that your child has Type I SMA, and you are wondering whether to try again, then we can't really advise you other than to say that from personal experience it was worth the worry.
We are now a Contact Family for the Jennifer Trust for Spinal Muscular Atrophy. We felt that as we had been helped through by the JTSMA, we wanted to put something back into the organisation. Visit the JTSMA website for more information and contact details - see the link on our home page.
Alternatively, feel free to email us if you have a question and if we can not answer it we will endevour to put you in touch with someone who can, for instance someone at the JTSMA
In late October 1999 Judith became pregnant for the third time, and what a mixture of feelings that produced. We were obviously happy, but it had not been long since we had lost Joanna. And of course, we knew what a new pregnancy could mean.
We had an agonising wait over the New Year holiday into 2000 for the results of the CVS test which would tell us whether or not the baby had Type I Spinal Muscular Atrophy. What would we do if it did? The worry was intense but we were lucky - the results showed that the baby was in the clear as far as SMA was concerned.
On June 23 2000, Judith gave birth to a baby boy weighing nine pounds exactly. We eventually decided to call him Edward Joe, the second name being a tribute to his late sister, Joanna. But for about a week or so he was simply known as 'boy'!
At the time of writing, Edward is now 14 months and Rhianna, his big sister, is nearly five and about to start school. Joanna would have been three in October and not a day goes by when we don't think about her. I often wonder how she would have been now, and what she would have become as an adult.
We have had a hard time in recent years because of SMA, but we have also been very lucky to have two healthy children, and we know couples who have not been so fortunate. If you are reading this having been through the pain of discovering that your child has Type I SMA, and you are wondering whether to try again, then we can't really advise you other than to say that from personal experience it was worth the worry.
We are now a Contact Family for the Jennifer Trust for Spinal Muscular Atrophy. We felt that as we had been helped through by the JTSMA, we wanted to put something back into the organisation. Visit the JTSMA website for more information and contact details - see the link on our home page.
Alternatively, feel free to email us if you have a question and if we can not answer it we will endevour to put you in touch with someone who can, for instance someone at the JTSMA
