A little while ago I was asked if I would like to contribute to a new charity that are compiling stories from parents who are on the Down Syndrome journey. Of course I said yes! I would love to help be part of something positive and help change perceptions or even provide a form of support and answers for prospective/new families about what its really like to raise a child with DS.
So, why is it that 6 months later I am still trying to write our story and yet have managed to write other things. I ponder this a lot. Why cant I put into words how Ailbe has made a difference to our family. Why is it so difficult. Other parents have managed it. Why cant I??
Perhaps, 18 months is a huge amount of time to summarise? Or maybe its not always been a positive journey. Perhaps its a combination. Therefore, I am going to try today so please bear with me.
A brief introduction for those who don’t know us. I am Siobhan, I am married to Kyle and together we have three children. Conor (8yrs), Saoirse (4yrs), & Ailbe (19 months) who was born with a post diagnosis of Down Syndrome.
Ailbe wasn’t the baby we had expected. He had more health complications than my other 2 children put together. I found myself crying more often and found friends and family cried more often in those early days. I couldn’t share “the good news” with the world about our baby as I didn’t feel it was good news at the time.
I had a poorly baby with an unknown future. There was this moment on the NICU unit where the bounty lady was with us wanting to take photos. I hadn’t said my baby is different I wanted to feel normal like all the other parents. Although if their baby was there I guess we all had worries and fears about our children’s future.
So there we were in the NICU unit as a family wanting a siblings photo. The lady had this big trolley with lots of little accessories to put in the photo and one of those items was a little sign that had a different message on either side. The lady chose the message “special delivery” on one side. As she was posing Ailbe with this little sign the Consultant walked in to discuss one of the many ongoing health issues we had. During this conversation he mentioned as per usual about the DS. I noticed in my peripheral vision the lady hesitated and turned the sign over with a more neutral message. I just watched her and said nothing. I didn’t want to make her feel better by saying something, if I am honest I wasn’t strong enough to verbalise the words without crying. This was going to be the first of many awkward moments that I would and still share with complete strangers. The difference now is I am stronger and have more knowledge about Ailbes future. They haven’t all been negative. To give a nice balance to this. On our first outing to the big outside world I had Ailbe all tucked up in the buggy enjoying the feeling of no one can tell he is different. As we waited for the lift there was a woman with her son. As the lift doors closed this lady looked at Ailbe smiled and said “I see you have a special baby too, this is my special baby” and when I looked at her son I saw he was a teenager with DS. We had a brief chat and I left that lift a different person with a different attitude. It had also, given me a new term to use for Ailbe. He was my special baby. I do feel that every encounter we have had and thankfully most have been brilliant are there to make us stronger as a family unit.
So going back to our story. How has Ailbe made our world better? It feels cliché to say he is amazing and has opened our eyes to a new world. Its true but that doesn’t give it justice.
When Ailbe, came along we thought we knew how much we could handle in our lives. After all we have two children already and one of those is Saoirse!
What did Ailbe teach me? that I can cope with whatever you throw at me. He has brought a whole new family into our lives, a community that we would never have met without him. A community that is not based on socioeconomic status or what we drive, where we live, what we do for a living, and it is united by 1extra chromosome the rest is irrelevant.
We are here, living and surviving and we are LUCKY enough to have an amazing little human being who is teaching us a whole new world and what it has to offer. He has taught me that I don’t give up when life gets hard, he has taught me that I no longer care what you think of me.
I want the world to change for Ailbe I don’t want Ailbe to have to change for the world.
I used to be scared of the term disability because I didn’t understand it. I only knew about the negative aspects of a disability. Sadly, people will only know what they are told. That is not a criticism of other people. However, its time that we bust those myths and fears that surround the unknown.
I am so proud of Ailbe, his brother and sister love him and he loves them. We went through the stage like everyone else has about how to tell your other children about the diagnosis. Its very difficult to explain something that you haven’t got your head around yet. Kyle wanted to tell Conor almost straight away, He was worried that other children at school might find out and understandably he didn’t want Conor finding out that way. In trying to gauge his understanding of a disability I asked him some questions.
Mummy; Conor, why does that girl in your class use a wheelchair?
Conor; because she has a verruca mummy
That was all the answer I needed at the time. So one year later we were back at the dilemma of when and how to tell Conor about Ailbe. I had looked at books which we decided not to use. During the “talk” we were quite taken back at how Conor dealt with it. Conor looked at Ailbe and copied what he was doing and said “look, we aren’t different we are the same”
In that moment I felt my heart burst with pride. They say our children teach us. If my 7 year old could move past a diagnosis and see the brother behind then the world can too. As time moves on and we reach more milestones it gets easier and now I don’t even think about the Down Syndrome I just see my son Ailbe. Who by the way is amazing!
So our story isn’t just about Ailbe its about everything that goes with it. We have this wonderful support network of other parents that get it. They have all been there and know how you feel and sometimes know how you are feeling before you do. I wouldn’t change a thing!