“No amount of guilt can change the past and no amount of worrying can change the future”

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.

Oscar during his Sleep Study

Oscar during his Sleep Study

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.

image

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.

Pregnant with Oscar and in a bubble, blissfully unaware

Pregnant with Oscar and in a bubble, blissfully unaware

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.

IMG_0273

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.

DON'T go on google late at night Mummy!

DON’T go on google late at night Mummy!

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?

IMG_0216

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.

IMG_0213

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.

IMG_0221

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?

Best friends x

Best friends x

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.

IMG_0317

 

17 comments

  1. Margaret   •  

    Wow Sarah, that brought some memories and some tears. I lost my husband last year, from lung cancer. When he was in hospital I visited for 7 hours every day, fed him, massaged him, and lots of other stuff. Then when they said they could do no more I brought him home and he did at home holding my hand just as we both wanted it. So guilty YES, could I have done more, should I have pushed the doctor when he said he had problems, wondering about the “friends” who put cards in my letterbox having written “you are the strongest person I know” without knocking and offering anything. I am also grateful for all my lovely friends who just turned up and hugged me, cried with me and were just there for me. Yes I think why could it not be Him or Her not nice people, why my kind and considerate man. So yes you and I both and all the others who are suffering in whatever way should be able to be selfish and sob for ourselves, we need to do that in order to basically get on with our lives and realise how lucky we are, you with your lovely family, Chris, Oscar and Alfie and me because I was married to my best friend for 37 years, lots of people don’t have that much luck. My very best wishes. Margaret

    • Sarah   •     Author

      Margaret, you have made me cry… In a good way I promise. Thank you for sharing this. I am so sorry to hear about your husband but yes you should celebrate the 37 amazing years you had together. You sound like a very lovely lady and I wish you every happiness. Please please don’t feel guilty. There was nothing more you could have done for your husband. Lots of love to you and thank you for taking the time to write xxx

  2. Alison   •  

    All of us who have a special needs child, those who are related to one or have a close friend who has one, totally understand your post. Actually, anybody with any empathy will understand it. You are doing a fantastic job of opening up the world of a Down Syndrome family, and Oscar (and Alfie) have adoring fans all over the world. We’re all allowed to have wobbly times, when we stress and worry about the future. We do that about our “regular” kids, so it’s going to be worse with our special needs kids. My son has a rare genetic condition and in his 19 years of life has scared the bejeezus out of us more times than I can count. I, too, was a Google junkie, haunting websites for mortality stats and spending countless sleepless nights thinking what if….. I also worried about behaviour issues once my son had lost the “cute factor”, and actually that came home to haunt us on holiday this year; parents don’t like a 19 year old, 6′ “man” throwing their kid’s bucket into the sea because the kid dared to bump into him! My son looks fine, they don’t always take in the fact that he’s wearing an epilepsy helmet; I should have studied advanced diplomacy to help me wriggle us out of awkward situations with irate families! But, to counterbalance that, all who meet and get to know my son fall under his spell very quickly – and so they should! He is a delightful, complicated, loving, Strictly Come Dancing obsessed ball of fun! I have 2 other children. One excelled through school and university and looks set to do very well in his chosen field. He hasn’t got the common sense of a hedgehog. The other went to mainstream but has lots of learning issues that made school a nightmare. Many times, I think that my so called difficult one is actually the one that I stress about least! I love reading your blog and following your Facebook page, thank you for sharing your lives with us.xxx

  3. Holy Crap! SO much truth and emotion in one post, you must be exhausted.
    I am only one voice backatcha, but here we go ->
    #1 Oh my, *please* don’t feel guilty for another woman’s choice. I know that you know what’s right for her is right for her and fear is powerful, sometimes too powerful to reason with.
    #2 Yes, you are right. Google is not your friend. NOT. In my day (oh god I sound old now) there were outdated books I could choose not to open, or better yet, throw (which I did). You and Oscar and your family are on your own journey, no one else’s. I know, you know this too, After so many great words I swear I can’t stop myself from sharing some back.
    #3 Keep sharing this journey. Honesty and Love and Hard and all are what will, eventually, take over the Google count. That’s what I tell myself anyway. Let’s try it, eh?

    • Sarah   •     Author

      Thank you thank you thank you. I’m really up for taking over google. Hahaha! Brilliant x

  4. Sarah Suggitt   •  

    Hiya,

    Wow, that was such an amazing read. Let me introduce myself, I am Sarah I am 37 and I have a soon to be 6 year old little girl named Brooke who has DS.

    I am also a member of many DS groups. As I flick through Facebook I read various posts written by other parents. Most are great, some are sad and some mums I feel just worry to much.

    I have never posted a picture of Brooke, or made a comment I just read, learn and kept my opinions to myself. However your blog was just amazing. Your little boy is Totally adorable. You appear to think very much like me.

    I did not know of have any idea that Brooke has DS until about 1 hour after she was born. I think I dealt with it ok, I was obviously slightly shocked, upset but not for me, for her, I just felt sorry for her. I did not know too much about DS then.

    Today however she is at main stream school. She enjoys school, she is loved by everyone. She has lots of friends, a one to one and things are good. Yes she is behind on learning but we must remember that she has DS and her piers that I compare to, do not!! She is however in my eyes doing just great. She is reading, counting, sorting but refuses the threading!!

    Please do not worry, I’m sure all will be fine. I hope the results give you the info you need to move forward. Enjoy your m&m’s. If you are not inundated with emails and manage to reply. I will be happy to share a picture of my little Brooke with you.

    Kind Regard
    Sarah x

    • Sarah   •     Author

      Oh Sarah, thank you so so much for this. To hear someone is enjoying reading my blogs is always lovely, but when I hear a parent of a child who has DS is, well, that just makes my day. I pride myself on saying it how it is… Most days are fab but some not so much. I think it’s important not to sugarcoat things. And to hear about your Brooke doing so brilliantly is just fantastic. Thank you for taking the time to write, I would love to see her pic xxx

  5. And another thing – This is from a blog I just read (didn’t write) but says what I am trying to say: “When you write about your fears, you are letting someone know that they are not alone facing those fears. When you write about overcoming difficult obstacles, you are giving some hope to someone out there that it is possible to do the same for themselves. When you write about your victories, you are making an example out of yourself — hey let’s aim for the stars, they are possible to reach sometimes.” (Blog here: https://medium.com/@wynlim/the-power-of-your-writing-c235ee82e603) (edit or do not show if you want, it’s for you really.)

  6. Susan   •  

    I think you are very wise to acknowledge your feelings. Parenting children isn’t easy. No child comes with instructions. We just soldier on, asking God to grant us wisdom and strength. I cannot understand the young woman’s choice, but I do know that she made her decision, not you. God bless you, Oscar, Alfie, and your husband. He’s your little boy, and he happens to have DS. When I see his pictures on Facebook, I see Oscar, a little boy with a big smile. God be with you all.

    • Sarah   •     Author

      Thank you Susan, that means so much xxx

  7. Kirsty   •  

    Thank you for writing this, it made me feel better on so many levels. My 6 year old has Cerebral Palsy and my 11 month old has Down Syndrome and life for me is pretty scary. I feel scared about everything from their futures to mine, I’m only 29 but will I live old enough to always be able to look after them? I’m terrified about my middle child (who does not have a condition) but her brothers diagnosis have made me incredibly scared to trust that she is ‘ok’ so instead I sit and stare at her and worry over every trip and fall. Thank you for showing me that I’m not the only one who does this, I too need to leave google alone. My hairs falling out with stress and even though my babies are growing I’m not getting to enjoy it all properly. I love reading your blogs they are inspiring to me, I hope you follow your own advice and worry
    less, enjoy more xxx

  8. jo   •  

    Hi sarah
    just read your recent blog. I think its great you share how you feel. I think its very important for educating others eg when you spoke about the lady who terminated her baby, that almost had me in tears. I think when people arent aware of what support is out there they panic and as you said, think life would be over, when its just the beginning of a new and different journey. sounds to me like you are doing really well. Being a mummy is hard enough. Even though my children don’t have DS i can relate to some issues. We all have moments of guilt where we find ourselves comparing our child to others or when you feel your not coping or that question, am i a good parent? I find tiredness makes this worse…so don’t be on google all night

    • Sarah   •     Author

      Jo, this has absolutely made my day. Thank you for speaking so honestly. I will be thinking of Harry tomorrow. Where is he having the surgery? He will be fine and you needn’t worry but of course you will because that’s what you do. Please please let me know how you all are. Sending you lots of love and here if you need anything. Thank you also for saying you can relate to what I’m saying. That honestly means so much xxx

  9. vicki montague   •  

    What an amazing post. Honest. It is not often that I read such honesty. Sometimes I say things, honest things, and people stare at me as if I am saying something terrible. The truth is people dont like to admit the truth. They hide from their inner thoughts because they can be scary. What you have done here is faced them. So many people think things but bury them away…even with a child without downs syndrome, all parents think bad things about their kids…most wont feel guilty because they wont admit they thought them…but I bet they did. Thank you for being honest and try to feel a little less guilty. You seem like an amazingly strong and wonderful person to me x

    • Sarah   •     Author

      Thank you Vicki. That means a lot to hear as i almost didn’t publish the post for fear of people being shocked i had even dared think such things, let alone blog about it. Its strange though as this post has been one that i’ve had the most private messages about… all saying Thank you for being so honest and they too at times, have felt similar things or had similar thought. Pheeeeew! Glad you enjoyed it and thank you for taking the time to message me about it xx

  10. Downs Side Up   •  

    I had that email too. And part of me wonders why on earth they came back to tell us of the termination. and Tom. Was it perhaps a hurtful hoax even.
    Heartbreaking either way, but we can only save one starfish at a time.
    Hayley

Leave a Reply

Your email address will not be published. Required fields are marked *