Wednesday, 28 October 2009
We have been granted a Blue Badge for Elin. I am excited about this, as it will make our life that bit easier when out and about, especially as Elin hates travelling so much. I went to the council offices today to pick it up- in the middle of a sneaky bit of half term Christmas shopping lol- spoke to the lady who was great and had sorted it out for us (kids aren't supposed to have them until they are two) and had a nice chat with her. She said Elin was gorgeous. I told her I really appreciated her help and how much easier it would make things when we are out and about with Elin. I left to continue my shopping and had a little look at my lovely helpful badge. It was all shiny and new. Good, I was thinking, we really need this it will be a big help we were lucky to get it. I turned it over and there was Elin's photograph ( a close up of her beautiful face) staring out at me with the words 'Parking card for people with disabilities' and 'Wrexham County Council' next to it. I burst into tears and cried into my scarf all the way back to the shops. You never know when it's going to hit you, but when it does you have no chance. You just have to cry, dry your eyes ...and then go and spend some money (or maybe that's just me ;-) )
Tuesday, 27 October 2009
We have been away for a couple of days and Elin was SUCH a good girl! Going anywhere can be stressful with Elin as i have previously mentioned- but going away from home is even more stressful. Before we went i had a list as long as my arm- and a sick feeling all the way there that i had forgotten something- happily i hadn't and we had an amazing time in Llandudno seaside town. The best thing by far was that Elin sat in her pram for a good 80% of the time without screaming- this meant we could walk around the town, stroll up and down the pier and even take a tram ride to the top of the great orme mountain without having to get ourselves stressed or break our backs carrying her- huurah- could this be progress??!! We have also recently noticed that when out in bright light and wind up the mountain -even though it wasn't that sunny-she kept her eyes tight shut- her brain cannot signal to her pupils to dilate properly to accomodate the light so she literally cannot open then against the bright light. Whenever we went inside her little eyes would ping open as if to say 'ahhhh thats better'. Very cute bless her .She was also full of smiles and slept on cue in her pram when we went to the hotel restaraunt for dinner and breakfast! Good girl! I was so proud of her this holiday and what a treat to have such lovely family time together.
Thursday, 22 October 2009
Recently there are babies everywhere, pregnancies amongst friends , newborns smiling out at me from Facebook. It makes me feel weird. I love baby news, I know how precious a healthy happy baby is and Im genuinely happy for everyone. But if I really look inside and am honest, every single piece of news like this is tinged for me ever so slightly. Because I will never, ever be able to get my head around how EVERYBODY but me can fall pregnant (without 4 years of trying and horrendous, expensive IVF that is) and 9 months later go home with their baby safe and well. There is a column in the local paper written by a new dad on the joys of fatherhood. I can't even read it- once I read it and he was talking about how he watched his baby pull himself up to standing for the first time in his cot and then smile with joy at his own little achievement. It made me feel sick with jealousy. And believe me, I hate myself for that, it's not something I like about myself or I like feeling AT ALL . But it's there. I can't deny to myself it's there. It's there in photo's of other people's babies. It's there when there are babies on the telly younger than Elin doing things I can only dream of for her. It's there when I watch my friends babies develop and change at lightning speed. It's there when the other babies say 'Mum' (or say anything at all). It's there alright and it's bloody hard work to make yourself immune to it, when your heart is still broken and you're wonderig if it will ever feel fixed again.
Saturday, 17 October 2009
Just read my last post, it seems so negative- but then sometimes that's how I feel. I am especially badly affected when Elin is ill and I didn't particularly relish spending the day on children's ward last week after our GP made us go in because he thought she wasn't breathing properly (Elin never breathes properly, lol). Happily the antibiotics we got sent home with seemed to have done the trick, and we met a lovely new Indian doctor on children's ward to add to our list! He was really thorough in his examination, which was good and expressed delight when Elin batted his hand away with BOTH of her hands when he tried to look down her throat. He said it was really good, it showed she can move her arms with intent. I am just praying now that Elin doesn't break out in my chicken pox! Though if she avoids it, it will be a miracle! She looks so cute today (see above!) sometimes I can't believe there is anything wrong with her perfect little being. Bless you Mummy's baby.
Thursday, 15 October 2009
I feel like shite tonight. I hate Cerebral Palsy for what it does to Elin, I hate Wrexham Labor Ward for doing this to us with their lazy care and I hate God, or whoever the hell it is up there, for taking the piss out of me. I just wanted to be a Mum like everyone else, not dealing with heartbreak every single day. Sometimes I swear my heart actually hurts. Sometimes, it's just too much. But what else is there to do but to keep going??
Tuesday, 13 October 2009
Just saw a story on the news about a woman whose son suffered fatal brain damage at birth after a lack of oxygen when two doctors and midwives refused to act on the fact that her baby was in distress during labor. DESPITE the fact that the CTG was clearly showing foetal distress, and the woman was only 32 weeks pregnant, doctors kept her in labor so long that when he was eventually born he was taken strait to intensive care (like Elin) but his brain damage was so severe that 10 days later she had to turn off his life support. My heart goes out to this lady, it was her first and much-longed for baby. She says she simply could not understand why they weren't doing anything to help. The first doctor even disputed she was in labor, suggesting she may be constipated. She should have been given a c-section hours earlier (sounds familiar). The lady has been awarded £160,000 compensation but would trade it in a heartbeat for her son's life back. This is happening ALL TOO OFTEN it makes me feel physically sick that so many women across Wales are putting their trust in labor wards full of staff who are too lazy or inexperienced to do their job properly. No one can ever imagine what it is like to give birth and not hear that cry you have been dreaming about for months (or in my case years) and to go through months and months of hellish news only to discover after an inquest that things could've been different, this was not meant for your baby- you just happened to go into labor at a time when there were a handful of staff on who didn't read your notes, didn't monitor your baby, didn't look after you. This woman will never get over that lack of care, and neither will we- though our outcome, happily, was that we at least got to bring our baby home.
Friday, 9 October 2009
I think Im going to get Elin a 'medical passport'. It's a little thing she can carry around with her, it says 'Hello, my name is Elin and I have cerebral palsy' etc etc with her likes and dislikes, then it goes on to explain her condition in non-medical jargon terms- like that she has a feeding button in her tummy etc. We were out in the car the other day and I suddenly had this morbid thought that what if we crashed, or actually, what if anything happened to me when I was out with Elin. People might not realise what was wrong with her and what if they tried to give her a drink? They would be choking her without even knowing it. Apparently you can get these passports from Cerebra. I won't even think about the fact that it's probably the only passport she will ever need ;-( I am also in the process of applying for a blue badge so we can park in disabled car parking spaces- might make life a bit easier. God, the things you have to think of......
Tuesday, 6 October 2009
In our 3-monthly consultation today with Elin's doctor there was nothing much to report. Except, as we were leaving we mentioned that she is starting to babble a bit. He then told us, conspiratorially , that when we first went in he had written down 'Vocal!' in his notes and stressed it was with an exclamation mark because he was surprised to hear her making baby noises. I am so happy- could it be that there is a ray of light in her predicted world of silence?
Sunday, 4 October 2009
Why doesn't anyone manufacture special seats for trolly's for disabled children? I recently saw in the Cerebra newsletter a mother had written to them asking them to design something she could take to the supermarket to put on the generic trolly seats that would support and restrain safely her daughter who was 3 and had C.P. They came up with a fantastic easily trasportable foam and velcro add-on for a trolly seat- why cant something like that be available widely for all disabled children? Elin is far too big now for the baby seats attached to the trolly's and cannot sit in the plastic fold-out toddler seats in the trolly's as she is completely unable to support herself. This means I can only ever go shopping when Paul is at home as I cant take her with me. Really frustrating! I know the supermarkets do online deliveries and thats great for us but sometimes I just want to get in the car and nip out for a few bits. I think i will e mail cerebra and suggest mass production of their trolly seats..i cant be the only one with this problem.....
Thursday, 1 October 2009
Bradley was the son of the first Mum I ever contacted on the internet after having Elin. He was born after a horrendous labor, where he got stuck in the birth canal and suffered profound brain damage, giving him massive and complex problems like Elin such as C.P . He also had a particularly nasty form of infantile epilepsy called Lennox Gastaut Syndrome as a result of the brain damage. When I contacted Suzanne, his Mum, through a forum about kids with C.P she was amazingly strong and gave great advice. She became my friend on facebook and we shared birth stories, anger at the hospitals following the shocking mis-management of our labor's, photo's of our babies etc. etc. A few months after I found Suzanne, Bradley passed away in Derian House, a children's Hospice after battling several infections and constant fits. He was three years old. Tomorrow would have been his fourth birthday and I have just read Suzanne's memorial page to him. It is, needless to say, incredibly moving and I wish this did not happen to people, I wish everyone who ever got pregnant could have their baby, just as they had dreamed . I wish a lot of stuff, but just for today, I wish I could help Suzanne in her grief over her beautiful boy, but nothing I could ever say seems appropriate. I do know I will never forget Bradley. He was the first baby I saw who was like my baby and he made me feel like I wasn't alone. God bless you, Bradley.
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