I based my creative piece on a mother Mrs Adams who has recently given birth to a child with Downs Syndrome. I asked Mrs Adams to tell me her story. I learnt that neither Mrs Adams nor her husband had any reason to believe that their child would have Downs Syndrome they were in a low medium risk category and nothing was picked up in the scans Mrs Adams had during her pregnancy. It therefore came as a huge shock to both of them when their baby was born and it was noticed that she had the characteristic almond-shaped eyes, excess skin on the back of the neck and down-turned mouth of a child with Downs Syndrome. This genetic condition is caused by the presence of part or all (as in this case) of an extra 21st chromosome. Mrs Adams was not previously aware that Downs Syndrome was a genetic disorder. She showed me a copy of her daughters karyogram which highlighted the additional chromosome. She felt, and I agreed, that this was quite quirky and I felt I’d like to include her daughters trisomy in my creative piece. I have placed these chromosomes in a central position in my work to demonstrate that everything that is different about someone with Downs Syndrome stems from this one source.

Mrs Adams then described the feelings she had experienced when she was first told that her daughter had Downs Syndrome. She said that her first emotion was anger. How could anyone say that her baby was not right? Understandably, she did not want to believe that something was wrong. From speaking to Mrs Adams, I could tell that she has found it difficult to come to terms with the diagnosis. This has partly been because up until quite recently, there has not really been a noticeable difference between the development of her baby and the development of other normal children the same age. She said that she was constantly waiting for a sign that her baby was not developing normally and that until that happened, she couldn’t help but hope (she admits, in vain) that the doctors had made a mistake and that there wasn’t really anything wrong. I imagine this denial was a coping mechanism that allowed her to get through an extremely emotional time.

She also described to me her fears about the future, for example, how her daughter will get on at school and whether or not she will be able to get a job later in life. She recalled someone reassuring her that adults with Downs Syndrome can often get a job in a shop but to Mrs Adams this idea was not at all comforting, she doesn’t want that to be the limit for her daughter. Her words made me really stop and reflect on just how quickly a medical diagnosis can turn your world upside-down; how all your hopes and expectations for the future can be placed in jeopardy.

Although Mrs Adams clearly had difficulties in accepting her daughter’s diagnosis and has many concerns for the future, it is obvious that she very much loves her baby. They have a close bond and in my opinion, her daughter is very lucky to have a mother who seems so caring and patient.

Although it was clear that in the weeks following her daughter’s birth, Mrs Adams experienced a whirlwind of different emotions, there were three feelings which were prominent throughout; denial, fear and love. To incorporate these into my work I used the three chromosomes and assigned them different colours: red for the denial and anger which she first felt; blue for her fear of the unknown; silver for the love she has for her child and the special bond that they share.

Mrs Adams mentioned on more than one occasion a situation which makes her feel very uncomfortable, even now. When she meets people, she doesn’t know how to introduce her baby. She doesn’t want to say. This is my baby. She has Downs Syndrome, which is understandable because there is so much more to her daughter that her disability. However, at the same time she feels that if she doesn’t tell people, it may be awkward if they then find out later on. They might feel that she was trying to hide it from them. This is a real concern for Mrs Adams who when her daughter was diagnosed, much preferred to tell people by texting them rather than by phoning them or speaking to them face-to-face. It is almost like carrying a secret around with you every day that you want people to know but you don’t want to have to tell them. I reflected this in my work by placing the three chromosomes, her secret in a pocket.

Mrs Adams felt that after the diagnosis she often had to hide her true feelings. One such time was when she was with her parents-in-law who adopted a very think-positive approach to the situation. I think she found it difficult to be with them because when she was, she felt she had to pretend to be ok with everything – when in fact she just wanted to cry. She described feeling relieved when she returned home and was able to be alone and just let her emotions overwhelm her. I think it was important for her to do this because in a way, she needed to grieve the loss of the child she thought she was going to have, before moving on and embracing her new situation. I decided to write a short poem about her feelings and place this in the pocket as well. I did this to indicate that her thoughts and emotions also felt like a burden that she must constantly bare and conceal.

Having chosen to place the chromosomes and poem in a pocket, I felt that it would be suitable to use a pocket from some jeans due to the fact that Downs Syndrome is a genetic disorder… So it is all in the genes.