A few months ago I thought about writing a blog about our youngest son Ailbe who was born with “an extra gene” and how our life has changed.
Yet when I sit to write anything it all comes back to Saoirse. So rather than try and blog about Ailbe I have decided to write about what we experience everyday. Life with Saoirse.
Saoirse is amazing, funny, fast, clever, beautiful, headstrong, and cunning. Unlike Ailbe, Saoirse looks like a typical girl within her peers. What you don’t see is the struggle Saoirse has with life and family life.
When Ailbe came along, everyone knew what was different about him as they did a blood test and it came back as trisomy 21. With that test result came all this support with a plan of care in place. I won’t lie and say it was easy. It was far from easy. The last 18 months have been very hard. What did happen when Ailbe came along was make us realise that we were a family in crisis trying our best to manage. All this support and help was being put in place for Ailbe yet what we really needed was help with Saoirse.
We didn’t have a blood test to tell us what was different about Saoirse. The journey with Saoirse has been long, hard and difficult. To date we are still nowhere close to a diagnosis.
It has felt like a fight from the very start.
As health professionals don’t know why Saoirse is like she is they have waited for things to either get better or get worse. I am not talking about a couple of months duration. This has been officially going on for the past year with a Paediatrician, unofficially its been going on since she could walk. To start with they assume its our fault. It must be the parents lack of boundaries and consistency. They don’t look at the fact that Saoirse has an older sibling who is twice her age and he doesn’t present with challenging behaviour. However, it must be the parents fault as the nursery don’t find her a problem. Yes they say she has all the attributes you want in an adult…just not in a 3 year old. So the paediatrician listens to the nursery staff as they obviously know our daughter better than us.
I have no idea where to start with our story. Should it be the beginning, when it started or where we are at now?
Saoirse was born on time and arrived 4 minutes after my waters broke. The medical term is a shock delivery. The birth was very traumatic as when she was born she stopped breathing and had to be resuscitated for a significant amount of time. Saoirse spent her first 12 hours in the Neonatal unit. However, Saoirse grew stronger and stronger and we have always been lucky health wise. Fast forward approximately 10 months. At one of the Health Visitor checks I point to Saoirse who is sat leaning against the door frame and banging her head. I say “is that normal?” I am told yes it is fine and all babies do that. Then another 6-8 months pass. Saoirse is continuing to bang her head on anything she comes into contact with and isn’t speaking. I once again raise my concerns. The Paediatrician tells me its nothing to be concerned about but he organises a Audiology appointment to make sure. At this appointment is when I first start to realise that all is not OK with Saoirse. I can hear the sounds through her headphones but see that she can’t hear them.
As I sit there silently crying and feeling scared about the future I realise a important point. Doctors are not always right. As a parent you must follow your gut instinct.
Due to the hearing loss we let a lot of behaviour go. We would always blame her hearing loss for anything that seemed unusual. In a way I still do.