The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…
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I actually have two sons.

I have two boys you know? You might not have realised that.

I have Little H - my wonderful, beautiful and very time consuming Swan (Syndrome without a name). And there's Cheeky too.  He's just as wonderful and beautiful and cheeky (as his name suggests) and charming and cute . . . and a little bit neglected.

Everything in our lives revolves around Little H.

~Cheeky woke at 6:30 Christmas morning and came in to our bed. Little H's feed didn't end til 7 (he's NG fed) so we didn't tell Cheeky it was Christmas til then.
~It's Cheeky's 3rd birthday soon.  He'd like to go swimming but we can't take H to an ordinary pool, just in case he has a seizure.  So we contacted the local hospice and they will fit us in for the day and we can use their pool.  If H has a seizure then there's nurses near by.

Every single simple day to day activity is altered and organised and changed to accommodate H's needs.  Cheeky just has to fit in with them.

Cheeky isn't quite 3 yet but he has had to grow up so fast. I compare him to friends' children of the same age and older and can not believe how babyish they are in comparison.  Cheeky is definitely wise beyond his years.  He tells me when he grows up he wants to be a doctor so he can "give the babies tubes [NG tubes] to make them big and strong" and "help the babies breathe with oxygen".  How lovely.  And how very sad.

Tonight I was saddened to realise just how much my baby has been forced to grow up.

We returned from a friend's birthday party very late - gone 10 O'Clock. I don't normally go to things on my own with both children but I knew I had a lift home and it was at a house I feel very comfortable in.  Cheeky was very very tired and at his age that also equals very very cranky and very very clingy.  He was already upset because he couldn't sit on my lap on the way home.  Leaving H downstairs, I carried Cranky, I mean Cheeky, up to bed, assuming I could tuck him in and go.  But he wanted cuddles and was fussing - just as any tired toddler would do - but I was worried about H.  Was he still breathing? Was he having seizures?  I had to get back downstairs to check.  Cheeky wanted me to stay and give him cuddles but I had to explain I needed to check on Little H.

H was fine thankfully.  I was only away for 3 minutes, but with H's condition that is long enough.  I came back up to check on Cheeky who seemed sound asleep. I kissed him and told him I loved him.  He turned and said  "I love you too Mom.  It's OK you can go and check on H now. I'll go to sleep".

It brought me to tears that comment.  He's not yet 3 but already seems to realise the way things are and the way they will be.  Most 3 year olds see themselves as the centre of everything but Cheeky, even tired and cranky and wanting his Mum realises that H needs me more.

It saddens me he has had to grow up so much.  He is still, after all, only a baby himself.

Comments

  1. I think Cheeky sounds like a cutie. Yes he probably will grow up a bit faster than his friends and yes he will learn how damn hard life will be at a far too young age. BUT, the experience of having H as a brother, for looking out for him and helping you do things for him will help him to grow into a lovely man who will have so much compassion for others and will no doubt play a part in making him the terrific man he is to become.

    Lots of love.
    Zx (@mummyofsam)

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  2. Yes I have the same with Angel, who had an idyllic life until the first of her sp needs siblings arrived when she was 4. And she grew up really quickly too - and asked Santa for an incubator for Christmas for her doll (who already had an NG tube thanks to the nurses). Angel is now 19 and her experiences have enriched her life I think and I'm sure they will do the same for Cheeky x

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  3. Thanks Zoe - I think he will become a terrific man, he is already an amazing brother.

    Thanks Blue Sky - how lovely and how sad that she asked for an incubator, but I suppose it is there way of making sense of it all, through play. Fireman Sam and his friends are often having trips to the hospital in our house! Nice to know that Angel's life has been enriched by having special siblings, I do worry so much about Cheeky so it is nice to know when things turn out OK for others further along the line.

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