Monday, 29 September 2008

so many mixed feelings

Its been a tough day today,didnt start out well I suppose because I was up from 1am...for a change it wasnt with Seraphina.On the contrary it was me...horrible vivid flashbacks of her traumatic birth,then the ventilation at 4 months,seeing her turn deep blue and rescusitating her...just loads of images that wouldnt go away,like I was replaying it all in my mind all over again. Made me feel so totally sick.I know why this has started again...its aways the same before she has surgery...Im not as bad as I used to be though,it used to be that every time I heard a siren and saw an ambulance with lights flashing I would just go cold and want to cry.Now its not so much.

Anyway then out of the blue I had a phonecall from the neurology specialist who has agreed to take over as Seri's local consultant.She had her notes in front of her and we had a long chat about the fact that I had a long list of symptoms but no diagnosis for Seri.She then went on to explain (very nicely) that Seraphina had Cerebral Palsy but generally neurologists dont like using that term as its so broad and so instead just deal with the separate conditions such as stiffness, developmental delay etc etc.
I have to say that during this conversation I felt physically faint,like I was going to pass out.I think it was just that on the one hand you have your suspicions but when someone actually confirms them then it suddenly seems so 'real' in a wierd kind of way.
Literally 5 mins after that conversation the speech and Language therapist and the Community Nurse turned up.........that was the most surreal thing,just having these appointments and chatting about possible extensions to the house to accomodate a downstairs bedroom and bathroom and that Seri may need a hoist eventually.I could hear myself speaking but as if from a distance,like an onlooker instead of a participant.freaky.

I still dont think its sunk in,I know it hasnt I suddenly have a thousand questions.....WILL she walk,talk even eat like other people?.Will she be able to look after herself? Ultimately only time will tell I guess but i so feel the need to know NOW, at least that she'll do ok.

and ultimately WHAT IF Id managed to keep her inside a little longer?,what if my body had done what it was supposed to?...................................I feel I have let her down.


Siobhan said...

Oh Caroline.. I am so sorry this has hit you so hard this week.. but please please don't be so hard on yourself. I completely understand the sinking feeling before operations and doctors appointments - it still gets me, even when I just have an appointment for myself.. usually I am so nervous and stressed my blood pressure is alarmingly high (even when I am just asking for a repeat prescription..hehe). So I totally understand. I am sorry you have such mixed feelings about Seraphina's diagnosis.. but don't blame yourself for anything! You've done a fantastic job with her, and ultimately it is the love and caring for a child which will help that child reach their maximum potential, whether they have disabilities or not. God does not make everyone "perfect", firstly because our idea of perfect is skewed anyway (there are plenty of criminals and evil people who are perfectly intelligent and able bodied), and also to show us how precious and special life is. This was brought home to me by the child of a friend from church, who has some brain damage due to severe epilepsy - she couldn't walk or talk at the age of five, but was the sunshine of everyone's life who met her. You couldn't help but love her the instant you saw her, even if you didn't know she was disabled. She enriched everyone's lives around her greatly, as I am sure Seraphina does also. We all have our purpose in life, immense strength of will and a great joy for life can in fact often be found in those that society classes as the weakest. I have found children generally end up surprising their doctors by beating their diagnoses and making the absolute best out of what they have, so I am sure Seraphina will surprise them all yet. We all make the best of what we're given, ultimately, anyway.
Please don't blame yourself for not being able to keep her inside longer.. that wasn't your choice and not your fault. I used to say with Niamh, when she was tiny and we didn't know what would happen with her.. I didn't care what would happen, as long as she could be happy. And Seraphina's lovely smiles certainly make her look like a happy child.. I'd say you're doing exactly the right things with her ((hugs)). Make sure you take care of yourself too though.. find a support group of parents with differently-abled children, talk to a therapist or councellor to work through your grief and the immense stress you've been under.. and accept any help you can, so that you can rest sometimes too.
Thinking of you all, Siobhan

Hazel said...

What a lovely message from Siobhan. I can't really add anything helpful. I can only reiterate the fact that none of this has been your fault and you have done the very best for Seri. You are the best Mummy she could ever have chosen. xxx