The anticipation – will it be a boy or a girl, who will they look like, the dreams, the hopes, please God let everything be okay. I was ten days overdue expecting my second child and I couldn’t wait. I had to be induced, I was so nervous. It was a difficult birth but my son Daniel was born on the 28th March at 5.35pm weighing in at 12lbs 1 ounce, a big baby, a healthy weight they said. It wasn’t long before I knew that Daniel was different.
As his mother I had an innate sense that there was something wrong. His eyes alerted me to his problems. He wasn’t doing the things that a baby does. I knew this because he was my second child so I knew what to expect. He didn’t look at me, follow lights or move his head towards his bottle. Being a big baby he was very floppy yet he looked completely normal. This word ‘normal’ is one I would come to hate. My beautiful boy, my heart ached.
The journey begins, I was going to physio as his arm had been damaged at birth and I asked the therapist “Do you think Daniel can see?” She looked at me and my stomach was sick. I finally had said the words, she called the doctor and my worst fears were confirmed. I think your son is blind the doctor told me. My world fell apart, all I could think of was that Daniel would never see my face.
This is where all the tests, hospital appointments, meeting different doctors began. I was told we will have to wait and see and the term global developmental delay was often used – in other words they didn’t know. Another few months passed and Daniel could still not hold his head up, he wasn’t reaching those milestones that we are all told they should. I knew something was more seriously wrong. After many tests and seeing a geneticist we discovered Daniel had a condition called Sotos Syndrome, a rare genetic disorder, a break in his gene, all these medical terms but all I wanted to know was what would happen to my boy – what will he be able to do, will he talk, will he walk, the panic started to set in. I was crying inside but no one knew.
This is where my anxiety kicked in. I didn’t want to go out with him or tell anyone what was going on. My friends had baby boys around the same time. It was so difficult, it wasn’t their fault, how could I tell them? I was grieving for a baby I didn’t get. How could I tell anyone that? I felt people would think I’m mad – sure you have a baby, but to me I had lost the boy I thought I would have, the basketball player like his daddy or like me giddy and always being in trouble for talking. How would I ever get over this? I didn’t think I was strong enough.
The next steps, we were referred to a service to help with his development, then more appointments, more people telling me things. I dreaded every appointment as I could see Daniel wasn’t progressing the way they would have liked. It was only for one service that helped me see the positives in Daniel, focussing on the things he could do and not to give up, that kept me going. I realised very quickly I had to fight for Daniel. I had to make over 50 phone calls a week, send loads of emails to get everything for Daniel. I was so tired. Every day I would cry myself to sleep and I didn’t want to get out of bed but this little boy needed me so much.
The appointments and therapy continued, this was now becoming part of my life. To be honest it was taking over my life. I felt I couldn’t breathe. I went to the doctor and he put me on antidepressants. This was hard for me to get my head around. I didn’t tell anyone, I felt they wouldn’t understand.
Daniel was 2 years old and I still wasn’t getting answers. I went to see a doctor in Birmingham about his condition. He explained it all to me. The story was now beginning to unfold. Daniel had a severe form of Sotos Syndrome which causes severe intellectual disability, epilepsy, sensory processing disorder, cortical visual impairment, feeding difficulties and non verbal. I was finally getting answers which were good but I felt I had completely lost the boy I wished for, yet there was a lovely handsome boy smiling at me every day.
As time went on I felt I was losing myself. I was a carer now, a voice for a son and a Mammy became last. I went back to my doctor and said I didn’t want to take tablets any more as my situation was never going to change. I had to learn how to deal with it. I decided I needed to go to counselling and was lucky I was good at talking. This really helped. I started to run and then joined a fitness class. I started to feel well again but still I was grieving.
The years moved on, I forgot all about the milestones and started to look at things positively – focussing only on what Daniel could do, not what he couldn’t do – changing the impossible to the possible would be a hard thing to do but deep down I knew I had the strength. I grew a passion for fitness and qualified as a fitness instructor. I continued running and joined a running club as well. I realised that exercise really helped my mental health so it’s an important part of my daily routine.
I then started to run with Daniel and he loves it, pushing him in his running chair is one of the best feelings ever. We have done loads of the 5k park runs and 10k runs. The support and encouragement we get is amazing. I finally started to believe I had the strength to change the impossible into the possible. I decided it was time to tell Daniel’s story so I set up a Facebook page called Daniels Voyage. I post regular stories, all positive and funny. I speak for Daniel or as he is now known “Dan the Man”.
Daniel is nine years old now. We still have daily struggles and I still have down days but I know that it is okay. I know as much as I can about Daniel and his condition. I have finally accepted the world that I’m in and I wouldn’t change it. My heart still aches at times but keeping positive and making sure I give Daniel the life he deserves keeps me going. I will be running next year’s marathon pushing Daniel so this is the next step of our journey and to help Daniel get all that he needs in life. It will be where I will show my beautiful son to the whole of Dublin.
At the beginning of this piece I said that when I looked at Daniel’s eyes, I knew there was something wrong. Well when I look at his eyes now it’s our connection that moves me and his eyes tell me “Mammy you know you can”. It’s been a long road but one road I have learnt so much about myself and Daniel and together we have reached acceptance.
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