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?