Published April 23, 2012 by swanfreddie

I’ve been wanting to write a post for a long time but it’s quite a hard subject  & something that i think I am worried that a lot of people probably won’t understand. It’s quite a hard subject to talk about but something that i’ve heard being discussed in the special needs community before.

What I want to blog about is grief. Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away.

Some people may be thinking why I would have anything to grieve over? My son is still alive? Which yes, he is & for this I am extremely grateful! But there will always be a part of me that will feel grief for the child I never had…

I fell pregnant with Freddie when my daughter Evie was 5 months old. Me & my partner were over the moon. At our 20 week scan we found out we were having a boy! It seemed perfect. One of each. I spent ages buying things to give my unborn son the perfect boyish bedroom. We went for a dinosaur theme. Dinosaurs everywhere, a proper little boys bedroom. I then started buying lots of gorgeous boys clothes. Then I did what I suppose any parent would do & imagine what sort of things my son would do & what he would be like. I’d go & watch him play football and then of course he would go on to be a top football player. He would love playing with toy cars & dinosaurs & would get up to all sorts of mischief. I would sit & look at all the toys I could buy for him & I would sit and stroke my ever growing bump falling more & more in love with my son, who was already named as Freddie before he was born, everyday. I was just generally excited to experience what having a little boy would be like.

So when Freddie was born on the 1st June 2010 our lives were turned up side down a bit. Not massively at first though. He had a suspected genetic syndrome but I must admit I didn’t really believe them. It’s the sort of thing you hear happening to other people but would never happen to me. But unfortunately the doctors were right.

For his 1st birthday I wanted to buy him a big toy garage & lots of cars but Freddie couldn’t sit up or hold toys in his hands so it seemed a bit pointless. So I thought i’d save buying that until Christmas, but Christmas came it it was becoming more & more obvious that a toy garage just wasn’t for Freddie.
As time went by Freddie developed more and more problems . And the boy I used to imagine when I was pregnant I would seemingly never meet.

Freddie has severe learning difficulties. He doesn’t meet his milestones and even tho hes coming up to 2 years old hes still very much functioning at a 3-6month age. It is very likely that Freddie will spent his life in nappies, when hes older he will probably never be able to leave the house alone, it is possible he will spend his life non verbal & may never walk. This is a far cry from the mischievous, football playing, car loving boy I thought i’d have.

The little boy I thought i’d have wouldn’t need 8 doses of medicine throughout the day or have feeding problems, he wouldn’t see countless doctors, he wouldn’t need a physiotherapist to come to the house to try & encourage him to do things like roll onto his tummy or sit up & he wouldn’t need an occupational therapist to come out to help provide us with specialist equipment to help us care for him.
Back in summer last year it was mentioned that when Freddie turned 2 he would be able to get a specialist pushchair if he wasn’t walking, I never imagined for one minute he would actually need it, of course he would walk by 2! But on Wednesday we are going to be fitted for one, as Freddie can’t even stand without support let alone walk. Freddie needs constant supervision to stop him hurting himself as his sense of danger is so low. He needs encouragement with the most basic things like playing with toys or sitting up. As Freddie’s understanding is so low he struggles with things such as laughing & isn’t able to give kisses or cuddles.

The thing with grief is that it in’t just about the death of somebody. There are two different categories, first being physical or symbolic. Physical loss is more easily recognisable because it means that  it is tangible and it is something that you can touch, like losing your spose through death. Other types of loss are abstract and cannot be touched – they are aspects of a person’s social interactions.

We have been offered counseling in the past for Freddie, which we have declined but this feeling of grief does stay with me. That doesn’t mean I don’t totally adore Freddie & I would do anything for him but there will alway be a little piece of me that will think back to the little boy I imagined i’d have when i was pregnant.  I look at Freddie sometimes & I do wonder what he would be like if he did have a syndrome. Would he be funny or mischievous? Would he be a mummys boy or prefer his dad? Would he play nicely with Evie or would he prefer playing alone? Would he love to kick a ball and play outside?


28 comments on “Grief

  • Thanks for sharing this Hayley. What you’re feeling is natural. It took me years to realise that I was grieving. When Chrissy was born she was so perfect & I felt so proud then everything started to go wrong. I couldn’t love her any more than I do now but the grief never goes away while she continues to suffer. For me, it’s also about the loss of the family life I envisaged x

  • Thanks for sharing this Hayley. What you’re feeling is natural. It took me years to realise that I was grieving. When Chrissy was born she was so perfect & I felt so proud then everything started to go wrong. I couldn’t love her any more than I do now but the grief never goes away while she continues to suffer. For me, it’s also about the loss of the family life I envisaged.

  • As I read this I felt the tears start to fall as each and every word rings true in my ears. As I write this comment my 3 year old son is lying in my arms after yet another seizure. He’s not playing with cars or running around the house or even watching tv. I took it for granted that after having 2 healthy girls, my son would naturally be the same. Like you I imagined what he would be like and still at time wonder about it now. Thankyou for this post it was heartfelt and brave.
    Sarah x

  • What a beautiful and honest post. Thank you so much. I think we all feel it but are scared to acknowledge it. I find it hard to acknowledge the grief without feeling guilty. I love my son, but I wish he had it easier, and I wonder who he’d be if he was “normal”.

  • Thank you for sharing your story with me. I have 3 children, 1 of which has a heart condition, thankfully she is now 4 and is relatively unaffected by it but I remember those early days when we just didn’t know what the future held and I remember wondering if she would make it to the milestones as all the other children would and it broke my heart to think she might not. I can’t begin to really understand what you are going through but I am sure of one thing if Freddie could tell you he would tell you that you are a fantastic mummy and he loves you very much.
    Sending you and your family much love xx

  • Oh Hayley, I felt so sad reading this. I understand completely. Something you didn’t mention but which saddens me so much is the lack of interaction between my two boys. Like Evie and Freddie there’s just 14 months between them. It wasn’t supposed to be like this – the gap in their development getting ever bigger as H remains a perpetual baby. Where are the rough and tumble fights, the squabbles over toys, the games of tig and football? It wasn’t supposed to be like this. xxx Big big hugs to you xxx

    • Thankyou! The lack of interaction is very hard. I want them to get up to all sorts of things together, to argue & fight & to love & play with each other. It’s so hard and unfair. Sometimes i watch Evie playing alone & feel so sad for her. I want to give her somebody to play with but i know another child is just not possible right now. Thank you for understanding xx

  • I understand exactly where you are coming from, people sometimes assume that as a Swan’s Grandmother I am probably a bit removed from the feelings of grief and loss after all I am not the child’s Mother, but this could not be further from the truth, not only do I have these feelings because of my Granddaughter but also for my Daughter too as this was not how I envisaged her life would be and I only ever wanted the best for her. Having said that I believe that as in the loss of a loved one it is very important to come to terms with things and to accept the situation as it is only through acceptance that we can move forward and turn a negative situation into a positive one. If we could wave a magic wand we would put everything right but we cannot, so we do the best we can and because of this our children ( and Grandchildren) are loved and cared for and there is no better gift we can give them. Take Care xx

  • You wrote this beautifully, I often wonder what Pheobe would be like if she didn’t have a syndrome and it still breaks my heart. I don’t think the grief ever goes away you just learn to live with it xxx

  • do you mind if i ask…has a professional ever actually told you that freddie won’t talk,walk or do things independently??? i only ask because i too have a son with an undiagnosed genetic syndrome and like similar to your wee freddie didn’t walk,talk sit up on his own until much,much later than you would expect.he was born with complications and every time we attended a hospital appointment a new problem would come to son is now 8 years old,he obviously will always have additional needs but he now walks,talks etc and gives us so much joy…..with love and encouragement our children can suceed x

  • I understand how you feel. I went through exactly the same emotions. People not in our situation don’t understand the grief and a lot of parents in our situation don’t recognize that they are experiencing grief.

    I’m glad you understand your feelings, it will allow you to deal with them so much more easily.

    As the years go by the grief is easier to deal with but it never goes away and different milestones will affect you and make the grief worse for a while.

    Sending you a big hug. Your blog post will help others to recognize their grief and to cope better. It always helps to know that others feel the same way as you.

  • Lovely post – you have put a very difficult topic into words so well.
    For me with my daughter the grieving process took a long time – hampered I think by the fact that people almost won’t let you grieve as they find it so hard to watch you go through it. But it’s something you have to do and you can’t put a time limit on how long it takes.
    Because it’s a topic nobody discusses (because people are like – what do you have to grieve for? Your child didn’t die! They don’t understand that the child you have is not the child you were expecting, the one you dreamed about), it’s good to hear what I have felt is “normal” and that I am not a bad person for wishing things were otherwise whilst at the same time fiercely loving my daughter more than I ever thought I would love another person.

  • This is so touching. Even with an extremely mild diagnosis (one of my kids has Aspergers) there is that same sense of losing what you had hoped for and not being able to enjoy certain things that you assumed would be possible. In your case this is so many more times the case but because you love your son so much you don’t want to say anything negative about your situation. But it is a struggle and a whole other reality is lost to you. A while back my very vibrant, young mother-in-law suffered a severe stroke and while miraculously she pulled through, there is still a sense of loss of the person that she isn’t any longer. I read a wonderful article on a similar topic by an irish times correspondent Brendan ? about his daughter’s Down’s Syndrome. He expressed what you are going through very well. If I find the link i will comment back.

  • I know exactly how u feel…my little lad is 6 and has the developemental capabilities of a 12 to 14 month old. It took me years to try to deal with my grief and acceptance is so hard. Just when u think that u r over it something hits u . I used to avoid being in the company of people with a child his age unless they had a special needs child. It just hurt to see that child and think that should be how my son is and like u I often wonder what he would be like without all his needs. I often find myself staring at kids his age and be in complete amazement of their capabilities even though I have 3 other healthy kids u forget how they were at that age. Do u ever get over the grief really…I just don’t know. No matter how much we love them, the fact they will always depend on others makes me so sad. It becomes better when hugs and kisses come in play. My son sticks out his tongue to lick me and on his good days lets me hug him and it makes it all worthwhile but he only started doing this last year so u r yet to feel this experience…it will come to u 2…a look, a smile, a lick, a hug can do such amazing things to us special needs parents. Before that I felt that he didn’t really know that I was his mother and that I loved him. My love and best wishes to u and all ur family x

  • Wondering what might have been is very hard, but it does get easier over time, and you’ll be amazed at what your child will achieve: my 15 year old finally learned to kiss my cheek a couple of years ago and it was lovely to realise that she understood that I kiss her to show I love her and that she reciprocates xx

  • It took me two years to comes to terms with my son’d diagnosis. Like you, I absolutely adore him, but I was grief stricken for a long time.
    Now he’s 8 and the sadness is gone. But as they say, there’s no going around grief, you have to go through it.
    I wish you all the best. be gentle with yourself. I promise, it will get betterXXX

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