Recently more and more people have commented on how Aiya is starting to look like me and I’m not sure why but it makes me feel sad. Maybe it’s because I can see what an alternative future may have looked like for her, if fate had delivered her a different hand. She would have been a force to be reckoned with, but then I stop and remember my daughter is exactly that. She is walking a different path to me and I’ve got to let her make her own mark on this world, in her own special way.
On her first day in this world she showed everyone that she was not going to do what was expected. She breathed without assistance and continued to show the doctors that the odds were not right in her case. In those first few days all I felt was relief and gratitude that my little girl was with me, and I knew she was a fighter from day one. She may have been the smallest baby in the NICU but she was the loudest. Aiya struggled to process breast milk in the first few days, so she was being fed very small amounts and not fed again until the nurses knew she had digested it all. This meant she was getting very hungry and she would scream until they fed her. The fact that she was swallowing and feeding was amazing enough given the outlook we had been given, but then she was actually showing she was displeased. I knew from that moment that there was more to this little fighter that anyone could imagine. Even to this day, when she does something that she’s not in theory meant to be able to do, there is a part of me that wants to say to the world I told you so. To those who looked at me with pity when they saw in my face the hope I held for my daughter’s future, I will always believe that she will achieve whatever she wants to achieve and no amount of medical precedent will make me believe otherwise.
You really cannot force Aiya to do anything because after all she is my daughter and we come from determined (stubborn) stock. She decides what she wants to do and it’s my job to give her the tools to help her achieve what she is focused on achieving. I keep being asked ‘Is she rolling regularly yet?’ and my answer is always ‘No, there is nothing that is interesting enough for her to want to roll for (iPhone/ iPad aside)’. As her cognitive ability improves and she starts to interact with the wider world around her (rather than what is immediately in front of her), that desire to move will come, until that day she will choose not to. To most professionals this is a hard fact to understand – she chooses, ‘but she’s got to be taught to do it’. Somewhere in-between there is the force of personality. There are some things only a mother knows about her child and as Aiya’s mum, I know my daughter’s personality and I know intrinsically who she is, as she is a little part of me. Aiya has the determination to achieve whatever she wants to, which may be limited and baby steps for most, but they are giant steps for my little fighter. And I am proud of every leap she makes.
Project Aiya 