My very best friend’s mum has Alzheimer’s. She’s 66 and was diagnosed with it just over 5 years ago now. As far as she is concerned, life is good. She is, for the most part, blissfully unaware that gradually she is slowly losing her memory, reasoning and judgement. For my beautiful best friend however, every day that she loses another tiny part of her mum, her life is falling apart around her.
Life isn’t fair.
You know there are those days, when no matter how hard you try, you can’t muster up the energy to be positive? Well today is one of those days. When I started writing my blog, it was always my intention to remain upbeat and positive. I am always delighted (if a little astonished) when I hear someone say how empowering they think I am or how if someone found out their child had Down Syndrome, they wouldn’t feel nearly as bad anymore, now that they know of my Oscar. When I hear things like that, well, that just makes my heart fill with pride. I figure I’m getting it right, I guess. But when I’m in this kind of mood, when someone posts that I’m an inspiration or that Oscar was given to me because I’m special, I feel uncomfortable with those sentiments and I’ll explain why.
Tonight, I’m writing this as my son lies next to me in his hospital bed. He’s having a sleep study done at The Royal Brompton Hospital, London, as after a routine heart check up, they found that his lungs are under strain and subsequently so is his heart. The study tonight will hopefully identify why and then we can go from there. And this isn’t about me being all “Debbie Downer” on you guys. It’s about being honest. For the most part life is great but sometimes (as my son lies hooked up to wires and I sit here in the darkness, eating my peanut m&m’s quietly so as not to wake him), I wish I could swap places with him. Now, I’m well aware, a sleep study is no big deal. We’ve been through worse and my gosh, I don’t even begin to think we’ve had it as bad as others but I want to be truthful and explain a few things to you. You see I struggle sometimes.
A few weeks after I had Oscar, whilst I was wallowing in my own (ridiculous in hindsight) self pity, I remember sobbing in my Mum’s arms. The reason I was sobbing wasn’t because of the worries I’d had initially. It wasn’t about what the future held for Oscar and me. Nor was it worrying if Chris and I would be able to cope. It wasn’t the ‘Could we love him?’ or the ‘POOR POOR ME, MY LIFE IS OVER’ stuff… It was none of those. It was because I felt guilt. Guilty for my inner-most deepest thoughts. A very well known celebrity had lost their baby. She had died. And I, while the whole country mourned, was pleased. I was pleased someone else was experiencing the pain and loss I felt. I was pleased someone else was hurting like I was, as I didn’t want to be the only one feeling pain. I couldn’t believe I could possibly think that. But I did. And there I sat, engulfed in my Mother’s arms, sobbing uncontrollably for my unforgivable thoughts.
That was the start of my guilt but actually it has never left me. I often feel guilty about feelings I have.
After I had Oscar, when friends of mine announced they were pregnant, I felt envious. Envious that they appeared to have nothing to fear. No worries, no anxieties. They were in that bubble of fluffiness, without a care in the world. Their world was perfect… But I hated that I felt this way. I wasn’t wishing them unwell or that they should have a child born with complications, it’s wasn’t that. I just felt envy and for that, I felt guilty again.
More recently as I was pushing Oscar and his brother Alfie, around the shops, Oscar was being loud. Very loud. His communication is coming along but when he gets frustrated he moans loudly. As we walked around, I felt self conscious. Conscious that people might be looking at us with disapproving eyes. It was more than that though… it’s times like this I get a flash of the future and worry that this is what we’re going to have to face forever. I feel ashamed of myself at times like these and then there it is. The guilt creeps in for thinking that way.
I’ve talked about it before but I am a member of a page on Facebook that’s a forum page for parents of children with DS. On the one hand it’s a great support. Fantastic for advice, but every once in a while I see something I wish I hadn’t seen. Maybe it’s denial but it upsets me that when I read a four year old started mainstream school this week and that he came home with cuts and bites marks on him and his TA and teachers couldn’t explain it. When I read things like that, panic about Oscar’s future sets in. But what is worse and what I need to stop doing is spending too much time on Google late at night.
Respiratory problem, heart defects, leukaemia, thyroid disorders, hearing loss, vision impairments, sleep problems, dementia, Alzheimer’s, other psychiatric disorders, lower life expectancy… aaaaaaaaaggggghhhhhh! I need to stop with the Googling.
I hate that no matter how hard I try, I make comparisons with Oscar’s friends. I know I shouldn’t do it but I do. Whether they have DS or not, I compare. I stood watching a mum with her two daughters the other day; they must have been around 8 and 10. As they walked along they were chatting away completely oblivious to my stares. I felt guilty that I felt sad about this. Would I ever have that with Oscar? How long will it be before I can have a conversation with him?
A few weeks ago a lady contacted me privately on my page to say that her 22 year old daughter had just found out that at 17 weeks pregnant her unborn baby had Down Syndrome. She explained her daughter was absolutely devastated, didn’t know where to turn and could I offer her some advice. I felt touched she’d come to me and so I poured my heart out in my message to them both, telling them how I felt initially but that two years down the line my feelings are different, life is good and that I most definitely didn’t need to be scared. I mean, I really put my heart and soul into my response. And then I waited. About a week later she came back to me and her response felt like a blow to the stomach. She said, unfortunately she felt that she wasn’t able to continue with the pregnancy as it was just too much to cope with. My guilt kicked in again. I wished I could have helped more. Maybe I didn’t say enough. Maybe I said too much. She had terminated the pregnancy and I felt hurt about it. I took it personally. Why wouldn’t anyone not want an Oscar? I wished them both well and said I understood but that still didn’t take away how I felt. I know I am only one voice but I guess I felt disheartened that I didn’t influence her decision or indeed change any misconceptions she might have about people with DS. I felt guilty I had failed.
But none of this is about wishing Oscar was any different. I couldn’t love my little boy anymore if I tried. It’s about my inner thoughts that I must face and confront. All I feel now when I think of that celebrity who so tragically lost their daughter, is remorse and upset. It was a passing feeling, that in the middle of my hurt and anger, I clung onto their pain, to make ME feel better. What’s the saying? “Misery loves company” right? As for friends who go on to fall pregnant, I wondered if I might feel differently now that I’ve had Alfie. There were no complications with his birth and seemingly all is well… But I don’t feel differently if I’m honest. I still feel my experiences with Oscar and his birth and delivery of diagnosis have cut deep and I’ll always feel I was stripped of those first few blissful moments with my new baby. As for Oscar and his outbursts when we’re out and about, I know what I’ve got to do. Hold my head up high and keep smiling. I’ve got to stop Googling health issues and stop worrying too far into the future. It’s not helping anyone. Oh and the comparisons, they’ve got to stop. I’m well aware of this on so many levels. He’s not a typical child so why compare and of all his peers who have DS too, I’d say he’s doing pretty well and I needn’t worry.
And my best friend? She’s actually coping brilliantly. We joke together, wondering how we ended up here. Her with her mum and me with my son? When we were younger we thought we were untouchable. That our lives were going to go a certain way and that was the end of it. But as we’ve grown older together, we realise there isn’t necessarily going to be that fairy tale ending that we’d always hoped for. We’re just happy we have each other and hey, life is 10% of what happens to you and 90% of how you respond to it, right?
So to all my lovely readers, who follow my blog and who say such touching things? I’m sorry if I’ve let you down tonight by feeling these things. My point being here is that I’m not all that inspirational, or empowering for that matter. I’m no more special than any mum. I’m just a girl, still trying very hard, to figure it all out, step by step. Life didn’t go the way I planned it to and you know what, that’s ok. Just forgive me if from time to time I need a minute or two, to take off my Down Syndrome cheerleading pom-poms, put on my onesie, eat my peanut m&m’s (quietly) and reflect.