Thursday, 25 March 2010

Life with baby

Husband and I constantly fighting, intimacy is a dark and distant memory. Both exhausted in different ways. Am super stunning at min with huge great cold sore and massive spot under nose. Joy. 9pm is late to bed for me at min. What kind of a life is that??

Saturday, 20 March 2010


Amelie and I are poorly
sick. Bloody awful tummy bug, sickness and diarrhoea. Not nice. She was sick all day y'day and today. Think she's on the up. I haven't been sick but horrible tummy.

We've done really well, it's the first time we've had to take her to see a doc. Not bad for 9 months. Is horrible watching your little honey be so sick and miserable when all you can do is watch, comfort them and follow doctors advice. Is all part and parcel of life tho.

Thursday, 18 March 2010


Just needed to post that I passed out a couple of nights ago and am completely and utterly exhausted. Feels like I really have nothing to give at the moment yet I must still give to my husband, daughter, parents, friends. I hope it will stop soon. It just hit me like a bullet from nowhere. I have to have bloods done by my GP. I hope it's nothing bad. I don't have the energy to worry right now. Please God, let me get better soon so I can function again, as a wife and a mother.

Saturday, 13 March 2010

Impatience and solutions

Ok, remap look very cool and will hopefully bear some fruit but yesterday I was having a look at the Disabled Parents Network equipment list and ended up finding something called a comfort carrier which is basically a papousse for babies from 3 months up to 2 years. Check it out here The nearest stockist to us is JoJoMamanBebe in Hale who have ordered one in for me which should be in at the end of next week. I had to pay for it upfront and at £130 it's not cheap but I explained my situation and they said I could try it and if it's not right they'll refund me straight away. Let's just hope Amelie's not sick in it when we try it out! Maybe I should create a new career in reviewing disability aimed independence products with a heavy slant on parenting and cooking aids.

I know as Amelie gets bigger she'll be moving around more and more and probably want to be strapped in less and less but I figure we can use it as an alternative to a pushchair when we need it. Trial and error is an expensive business, especially as a disabled person buying products to help increase independence but I figure as long as it's not extortionate it's worth buying in the vein hope that it really will help in just the way I need. Am hoping my optimism will pay off in spades :-)

Friday, 12 March 2010

Friday feeling

Looking forward to the end of the day so we can spend some time with Scruff. Been a successful week but will be nice to have him home for a couple of days. Drive still being done, nice workers have said they can make me a makeshift ramp if needs be. We can just about manage to get in and out without it for the weekend.

Mother's day on Sunday. Is a very special first for me. Becoming a mother makes you realise that it is important for a lot of people that these things don't just go by unnoticed, even if Scruff does think such events were invented by Hallmark to boost sales between two more significant dates in the calendar, such as Valentine's day and Easter.

Have also written to a charity called Remap who are a bunch of very clever engineers who design one off equipment for disabled people, the type of stuff not to be found on the market. I've put in a request for them to make me something that fits to my chair that I can use to take Amelie out in and that is more comfortable than a sling. Let's see if they get back to me. Fingers crossed.

Thursday, 11 March 2010


Ok, bit stumped now. The sling worked really well with the electric chair but am not needing to use it so much anymore as I can now drive from my manual chair etc. So for the most part I am much preferring using my manual chair. But, as in everything in life, it has it's downsides. The sling catches on the wheels and because I'm not just pushing a little joystick to zoom around the place and am actually physically exerting myself, Amelie feels heavier in the sling hence it becoming an unsustainable option for more than a couple of hours at a time. So, back to the non pushable pushchair it is for us. Am trying to think of more satisfactory options for the future as I would prefer to have her with me when we're out and about, naturally, as her mother.

Other current focus is our drive is being resurfaced. Normally that wouldn't cause all that much disruption but they have had to take my ramp away until Sunday which allows me access from the house to the outside world to let the concrete set. Joy. Never a dull moment when living with paralysis.

Monday, 8 March 2010


Went out to see a friend today with my gorgeous girlie on my own for the very first time. Driving to go and meet her with amelie in the van made me smile and grin lots. Was the bestest feeling ever. Know I won't be able to do it all the time but as much as we can would be totally fab. Thankyou so much hugsband for playing such a pinnacle role in all this. Love you heaps and heaps.

Sunday, 7 March 2010

Big news today....actually got in van and drove with Amelie in van, just me and her, for the very first time ever. I was far more nervous on the run up to the whole thing than when I actually did it, but then one almost always has more time to think on the lead up to important events than during the event itself. Did feel very freeing though and is definitely a great confidence builder, the hardest thing was just having the balls to do it in the first place. Now all I need to do is just keep calm and hold it together.

Saturday, 6 March 2010


At the moment I need all the sleep I can get. Being a mother is strange at times. You spend a lot of time in the very early days wishing your child would have proper periods of sleep lasting 4-5 hours at night and more. We don't have a clock in our bedroom so when I wake up in the middle of the night, I never know what time it is. Last night I woke up and couldn't go back to sleep for ages because amelie was so quiet and I got really
anxious and worried as I couldn't hear her. I had to wake
Scruff up because I was so worried but he just went straight back to sleep (I can't blame him, it's not like he hasn't waited long enough for her to start sleeping better!) It's the little things like that that remind me what a pain it is being paralyzed. Most mums would just be able to get out of bed and peek round the door, consider their neurosis and then just come back to bed and drift off. Must remind husband to bring baby monitor up tonight so I can see her on camera if I need to be reassured.

Thursday, 4 March 2010

Quite a busy day today, well, last couple of days actually. Getting things sorted in the independence department. Fingers crossed, I will be totally fine to drive my van from my manual chair as from tomorrow which is great as I won't need anyone to help me transfer into my electric chair when I go out. Does mean am going to have to be more organised and take a spare battery with me when I go out as although my chair is manual, it uses assistive technology which helps me push. Must get out and about pushing all over the place to get my stamina up and try to stay ahead of Madam once she starts walking. Scary biscuits. So van main thing on agenda this week. Next week work should hopefully start on our drive so they can redo it and flatten it so I'll be able to get onto my tailift and into my van without any help. So by end of month, if all goes according to plan, I should be able to use the same chair all the time, let myself in and out of the house, get into my van and go out totally unaided, just like most 35 year olds do most days without thinking. Question is, whatever next...........?

Tuesday, 2 March 2010

Great inventions

Used the sling today properly out and about with Little Miss for the first time and it worked a treat. Went to quiet park to try it out as didn't want people staring but now have my confidence with it and am raring to go! Maybe I can start concentrating on being a better wife now for a bit! Wifedom and motherhood are both relatively new and demanding roles for me and I recognise the opportunity for growth and improvement in both areas.

Was s beautiful day today and I enjoyed breathing in some good, fresh air with my little girl. Let's hope there are many more good, sunny days to come. Roll on summer!