Half-Brained babies should cost half as much. It’s only fair.
There could be an equation. Something like:
(1/2 brain + seizures – arm control) ÷ the amount of crap we have to go through = one cheap baby
Instead, a disabled child costs a lot of money. A lot. In our family, even though May is not old enough to pine for expensive jeans or want a Disney vacation, she is draining us dry.
Let me rephrase: her condition is draining us dry.
Here are a few of the many ways that disability costs:
- I took a 20% pay cut when I went part-time to attend all our appointments.
- I stayed on maternity leave for six-months longer than we had planned.
- Gas in the UK costs about £1.30/litre (about $8.50/gallon!) and I have to drive to a lot of appointments some over an hour away. It is impossible to drag May and her stroller down the two sets of stairs and on to the train platform. Where do I set her down so I can close up the stroller to carry it down? She can’t sit.
- More expensive car seat. We bought one that swivels towards the door so I can get May in and out easier. Non-swivel car seat = half the cost.
- More expensive stroller. We are in the market for a double stroller. May can not stand so that cuts out half the strollers (that carry one standing and one sitting). The stroller needs a seat big enough for a five-year old child, since that is how long she will probably need to use it. The stroller has to move easily (it may surprise you to learn that many I tested out did not turn) because May is going to get heavy.
I think it is time to rewrite that formula.
I hear ya, we had to get a car to get to all Sebastian’s appointments and now we can’t afford all of them! That swivel car seat sounds nice, will have to look into that for the next size up. Double strollers with three wheels are popular where Seb goes to school, I’m pretty sure they are pretty pricey though. Have you thought about the possibility of slinging the new bub? I’m hoping for that as an option when we decide on a second kiddo. Sebastian wasn’t really into the sling much when he was a baby. Now he loves the baby/toddler carrier.
Stacie, do you get any help with May that is free to you? Here in the US they have Children’s services which give you speech and language and physical therapy to any child under 3 and then you can get social security disability payments as well. You get “minder” in pre school and elementary school. With all this help the parents can afford the necessities for getting around like strollers and car seats etc. Also, is their any type of service that gives out the above that are collected, cleaned up and then passed to kids that need the stuff? There are so many services (soon all to be cut by tremendous amounts) but right now the parents have to be the advocates for their children But we now have lawyers who will advocate for children for the free service. It does cost but at least they help them get into schools etc. I am amazed at how resilient you are.
Half the brain, perhaps. But twice the cuteness and adorability at LEAST!
I’m sure you’ve tried ebay… ?
I wish I lived closer (as in, in the same country!), and you could have my double chariot..
I know what you mean about the costs of things for those with disabilities! Say it is for special needs and the costs sky rocket up. When we needed a special car seat I was lucky to get a reconditioned Carrot Car Seat – which swivelled – but new prices are astronomical. We now have to use a wheelchair access van as she is too heavy to lift in and out of the car. Recently the van was in for repairs, and we stayed home, or walked, for the 2 weeks that it was off the road. I enjoy reading of your journey (and May’s). She is surpassing what she was expected to do, and that is wonderful. Congratulations on the new little one – I am sure that she will be a great help to May – it is amazing what the effect of a sibling witll do for a special child.
Thanks for all the advice!
I probably should have added that May’s grandparents are very generous people who help us out so that we aren’t driven into penury. May’s Nana covers the difference between a normal nursery and May’s (which, as the only one who would take her, is also one of the most expensive in the area. I should have added that to the list!), May’s Papa bought us that car seat and the stroller is a gift from him as well, and May’s Grandma buys her all kinds of sensory toys.
But, I wonder how people cope if they don’t have help in off-setting the costs? And, I guess my post was more of a comment about how terrible it is that in addition to the condition itself, there are other, unexpected, ways that disability makes life harder.
Stacie, i have been reading your blog for a while now but just silently lurking. May is adorable. My daughter has Down syndrome and I can relate to some of the difficulties you go through. I completely agree – things should be made cheaper and easier for parents of special children – not harder and more expensive! As if we need any added stress. But that said – our kids are worth every bit of extra effort we put in
Lurkers always welcome – especially when they agree with me – hahaha! And, you are right as well, our kids are worth it!
May’s Nana sends me photos of May and I love to see them, May just smiles in them all, and I feel so uplifted and make my worries are so small. Your posts are not only about May but I feel you are speaking up for others who are less able to fight like you. You have written one book I feel you should write another on Mya’s journey. All the best
My daughter also has special needs. Her care is more expensive, but her adoption only cost me fifty dollars….for her new birth certificate. May is beautiful! I’m glad I found your blog.
[...] adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health care like us in Canada. Where we get some help from government [...]
[...] adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health care like us in Canada. Where we get some help from government [...]
Stopping over from Circle of Moms.
Wouldn’t it be nice if half-brained babies cost half as much! I’m sorry to hear the UK doesn’t offer disability services as I’d hoped they would. I know for sure here in the U.S. we’ll be spending quite a bit on our twin with CP.
Also watched the video of May eating. She’s doing really well! How old is she? That’s amazing for how severe it sounds like her damage was!
May will be two this month – and we are as amazed by her as you. Thanks!
Hi
I’ve always loved reading your blog but not been on for ages! so was pleasantly surprised to hear you are pregnant again with no.2 ;0)
well done! xx
I have 2 boys only 19 months apart, my eldest has rightsided hemi cerebral palsy. We used 3 different prams over the last few years to get us by! lol
first pram – ace for around shopping centres etc was a Maclaren Twin Techno (side by side and can get through normal doorways) I used a baby carrycot snug from a previous Graco pram, yes I’m a sounding like a pramaholic, because I was! lol. the snug was great for the first 5 months or so, but then because I have very long babies and he was sitting by then he went in the normal buggy, with his brother. We to get rid of this because Daniel (elder child with cp) got to long but as he was skinny we got away with it for a while.
second pram – ABC Everest single buggy with toddler seat.
bought 2nd hand from ebay but was in brand new condition. THE BEST BUGGY EVER!!! lol I loved this pram. and i mean loved it. expensive but worth every penny, i also sold it for half the price i paid so still held it’s money. have a look here. http://adventurebuggycompany.com/videos.htm I had a fixed toddler seat and both boys would take turns in sitting up top, until daniel got too long (again! lol) and his head was too high up to work with the seat, used it without the seat and younger son would go on buggy board or they would swap. they do a baby reclining seat now. did this until daniel turned 5 years old. apparently there is a special needs seat you can buy from NZ which is deeper etc. very helpful company.
Third – was daniel’s swifty SN buggy. simply a FAB funky special needs pram/wheelchair! very easy to push with one hand, important as I’ve always got to have a hand on younger son as he runs at most opportunities! I attached a buggy board and they would swap and take turns to use the board or sit in the buggy. Younger son was getting a bit lazy, nearly 4 now so the buggy board ‘broke’ and he’s full walking now ;0) older son with cp is now moving onto a ‘big boy’ wheelchair, but think we’ll keep onto the swifty for a bit yet.
sorry realised my reply is mega, but you touched on my favourite topic…. prams! lol take care