Life was not meant to be this hard. When I used to wonder how life would be as a mum I didn’t expect it to be like this. I see other parents complaining about small issues in the grander scheme of things. How they are dealing with a phase right now and it’s exhausting. However, it’s a phase and it will pass.
When I had Conor it took me about 8 months before I realised that it would be ok as what he was going through was a phase and it would get better. I don’t seem to have that with Saoirse and Ailbe. I really hate the fact that I have to think really hard about how to parent my child to be able to survive the day. It sometimes feels really unfair that my children don’t respond to normal parental boundaries or that my youngest isn’t keeping up with his peers due to global delayed development. I see people look at us in the supermarket, town, car park, or basically anywhere in the public eye when I am out with the kids. It’s not all bad and 90% of the time it’s amazing. But that 10% is bloody hard work.
It was suggested recently by Saoirse new teachers that I should reach out to the parents so Saoirse could get to know her classmates out of school. I stopped short of snorting with laughter. I realised that it’s not the parents that keep away from me in the playground. I keep away from them. I just don’t want to hear about their life and what they perceive as difficult right now. I know I am distant to others so I don’t have to make small talk about things I have nothing in common with. My child isn’t like theirs. I see their side ways glance when Saoirse isn’t follow the rules and yes it breaks my heart when I see her sitting on the edge of the floor mat when all the other kids are together. When I chat with other parents I enjoy it I just don’t really show me. People don’t actually want to hear about your day. It’s not a criticism it’s just how life has become. I tend to reflect quite a lot and on one occasion i wondered:
How do you deal with the mummy and her amazingly advanced baby?
This happened a year ago when Ailbe was 6 months old, he had no head control and no upper body strength so if I sat him on the floor he would just fall in to a laying position. I just walked out and cried in the car. Leaving amazing baby to bum shuffle and hold her head up high with her drooling mouth from teeth coming through.
Our babies were the same age.
I felt physically sick, please don’t give me your sympathy or empathy just be normal and don’t try to understand what it is l am going through. I am sure this new mummy would be mortified with how she had left me feeling.
Some days I can feel myself slipping in my mental well-being. This is something new I have had to get used to since Ailbe came along. Actually that’s not entirely true. Since Saoirse came along I have experienced good and bad days. Everyone has different names for it. It’s not something I find easy to talk about as I have always been a strong woman and still am. I get a lot of support from family and friends who say “don’t be so hard on yourself, look at what you’re dealing with”
This isn’t really a consolation to me as I see myself as a failure as a mum. I constantly berate myself because I feel I am not doing enough to help my children achieve in the areas they need, or that they are sat at home instead of being outside exploring nature, learning ballet, playing cricket, or joining a competitive team sport. Or the times that I don’t respond in the best way because I am tired, stressed, worn out, or generally having a bad day.
On these days I find it so hard to see anything positive. I can’t quite shake it off. I also can’t pin point the exact cause so I can deal with it and make it better. I hate those moments. I feel miserable and agitated. I don’t want to feel like this and don’t understand why I feel like this. I become snappy at Kyle. The majority of the time I am ok and deal with everything life throws at me. However, some days or not even days but moments I can’t handle it.
Last week we met the new community Consultant for Ailbe. I was a little nervous as we sat in the waiting room. It turned out to be a positive experience, she was amazing, thorough, and most importantly not dismissive around our concerns. Despite being 19 months old he has delayed development. Where I don’t usually torture myself by comparing his milestones to others. This time I did.
Why isn’t he speaking, walking, or eating food that hasn’t been chopped up or cut into tiny pieces.
I looked at my gorgeous boy and wanted to cry, feeling that life is unfair. As we tried to have a discussion about Ailbe it was evident we couldn’t stop him from making the noises he does. Fearing, what if he never progresses from this stage.
I have recently been looking at him, his gestures and thinking how cute they are. But what about when he is older. Will people still look at him doing these movements and noises and think ahh look at how cute he is. Or will they judge him.
All my fears were validated today when I was out, sat talking to some ladies I have known for 3 years. Alibe was doing his usual chattering being his normal noisy self. I didn’t take much notice of it until one of the ladies got up and started saying bye to everyone except me. I said bye to her and she blanked me. One of the other ladies asked why she was leaving. She turned around and said “I am just really tired and that is irritating me” she made a point to stare at Ailbe then walked off.
It didn’t sink in at first and I initially laughed it off. Then I couldn’t laugh it off. I was furious and really upset. I found myself trying to work out why she said that. Was she upset with the noise he was making, was it due to his Down Syndrome, or was it both? The other ladies were very upset for me and tried to make me feel better but I had to leave.
Sadly, I know I will have many more negative experiences but this was my first direct one. I got in my car and the positive was I didn’t cry!
Despite the challenges of having children with complex needs and my roller coaster of emotions as I try to process everything. I feel lucky. I have three beautiful children who brighten up my day. Just before the meet up with the ladies I had been at the hospital with Ailbe to have his hearing aids fitted. Whilst waiting, Ailbe engaged the people sat around him and they all started talking together, laughing, and reminiscing about childhood cartoons. Ailbe has this ability to bring out the best in people. So when I have a negative experience I know deep down in my heart that its not about my son. Their reaction is about their issues they have in their life.
When my kids call for mummy, or give me a smile. Or we have snuggles on the sofa and watch a film, when they all play nicely together, and when one of them does well.
I wouldn’t have any of this without them. So as much as I struggle at times, I wouldn’t change a thing.
These are the little things that make me realise I am lucky.