park3 2

park2 2

park1 2

IMG_0835

Update on my health: 6 months post-transplant

April 7, 2014 at 22:21

Mama Lewis

5

A lot of people (yes, all two of you) have been asking about my health. As it is six-months post-bone marrow transplant, I thought I’d delight you with a little update.

The good news is I’m still in remission. So far, the bone marrow seems to be working its magic. I have a brand new immune system – that means I’ll need all my baby vaccinations repeated – but miraculously, despite my husband and the kids being sick at various points, I have managed to avoid being ill entirely.

The difficult part is that I’m still stuck at home a lot. I’m very tired and a long day with friends – as I had yesterday – can wear me out so much I need to stay in bed for the whole of the following day – as I did today. That is really depressing. And advice to “just rest” and “watch lots of television” or “take a bath” is much easier to follow in theory than in practice when that’s all you’ve been doing for almost a year.

Last week, my doctors told me I can’t return to work this school year. They said that, in my situation – without being vaccinated and with a compromised immune system – my job as a teacher is more dangerous than being a police officer. My school have been very understanding, but I really miss teaching. I miss the whole social network, studying literature and I especially miss forcing a room full of children to listen to me crack jokes all day.

So, what am I doing besides nothing? I’m learning to cook. I make a new dish or two every week and some of them are even edible. I’m writing a book. Actually, I’m writing three books. Which sounds incredible until you realize it is a completely unproductive method of finishing one book. I’m swimming again, about once a week. I’m ridding our house of clutter, which means I have created a wall of bags for the charity shop. Great insulation in the winter those bags, not so useful now that it’s April.

And – I’m spending time with my kiddies. This is the one blessing convalescing at home brings. I never thought I’d be a stay-at-home mother, but here I am. And I have to say, I love it. I get down on my hands and knees every day and play with blocks and read bedtime stories and sing and laugh and cuddle and it is absolutely the greatest.

May wants you to GET OUT. And here's why...

March 31, 2014 at 10:08

Mama Lewis

3

Special needs can sometimes feel like a cage. At times, don’t we all just want to dig our heals in and scream: MAKE IT EASY OR I’M NOT GOING.

Trips out don’t always end well. May hated our last visit to the Barbican. She screamed from the moment we arrived until the moment the ice cream arrived. It was awful. Both of us missed the entire performance and this was something she loves: music. That’s when it is really bad. When it is a sure thing and it still goes wrong.

So, what’s the best thing to do in such a circumstance? Get back on that horse, Mama.

Recently, I met two mamas who didn’t just get out, they got out of the country with their families. Kara from Free as Trees and Stacy from Noah’s Miracle both have children with disabilities – but that hasn’t stopped them or their children. These two inspiring women flew their families from Canada and America, respectively, all the way to Northern Ireland.

They were on my mind this weekend when the sun was shining and I wanted to enjoy Mother’s Day with my family. I love strolling around our local parks, but I wanted something less conventional. About six months ago, we discovered a new spot but haven’t been back since I was admitted to the hospital for my bone marrow transplant. And May has never been.

So, we took May’s wheelchair off-roading at the Selsdon Wood nature reserve. You know that feeling when your face aches from smiling so much. Yes, that. Not special needs, more like NEED IT.

20140330_170146 title

And May’s Mother Day gift to all the rest of you mamas is the same: GET OUT. When you expand your horizons, you push violently on the boundaries that contain you and say: I will not be caged in. I will not.

For more ideas on how to access activities with your child, try the Kids All Access series.

Doctors said her son wouldn't walk, and then this happened... (VIDEO)

March 30, 2014 at 10:46

Mama Lewis

2

Debby Elnatan was told her son, Rotem, would never walk.

Rotem has cerebral palsy and, like any mother, she was devastated – but she wasn’t broken. Elnatan invented a harness that would enable him to walk attached to her. Instead of the path he was meant to travel, one of severe physical impairments and eventual surgery, he grew stronger and – together – their walks increased from steps to miles, minutes to hours.

This week, her invention, the Upsee was launched globally by Leckey, a company that produces equipment for disabled children. Three families strapped their children in and, to the astonishment of everyone watching, the children began to walk. It was as simple as that.

One boy, Daniel, who has global developmental delay, walked towards a delighted crowd:

The story doesn’t stop with these first steps. Firefly’s Clinical Research Manager and occupational therapist, Clare Canale, said: “Short-term, the Upsee improves special needs family participation and quality of life, while research suggests it has the potential to help the with physical and emotional development in the longer term.”

The Upsee is also about having fun – children being allowed to enjoy what the rest of us take for granted:

My daughter May is disabled and we were told she’d never walk. This story isn’t just inspirational to us. May’s disabilities are so severe she will need reconstructive surgeries on her hips for much of her childhood. If the Upsee works, it may be the difference between a lifetime of therapy and pain, and walking.

The doctors told us our daughter would never walk, and now what does the future hold for her?

We are very excited that May will be trailing the Upsee soon. Stay tuned to see what happens. This article was originally published on the BabyCentre Blog.

You can also follow Stacie on Twitter @MamaLewisBlog or on the Mama Lewis Facebook page. More information about the Upsee can be found on www.fireflyfriends.com. Photos and video courtesy of Leckey. 

May has the answer to all your ills

March 27, 2014 at 23:14

Mama Lewis

0

A reminder that when the world is throwing a storm of misery your way, one little girl knows what to say.

From the archives, here is May, only a few months old. She severely physically and cognitively challenged and yet she knows what you should be shouting. It is the perfect and only response to everyone who is giving you grief. For when you want to play with your child but feel pressure to do therapy. When only a cuddle will do, but a mountain of work awaits.

Don’t mess with her. May says, “No!”

Warning: cute baby alert

May's amazing picture book GIVEAWAY!

March 19, 2014 at 09:00

Mama Lewis

2

Thanks for entering the giveaway – I randomly drew again after the original winner did not respond and congratulations – Fiona Neda! You are the winner!

To celebrate the creation of the Mama Lewis Facebook page, Mama (that’s me) and May (that’s her) are giving away three gorgeous picture books to one reader.

Up for grabs are:
Just Because by Rebecca Elliot, a sibling, special needs adventure story.
A First Book of Nature by Nicola Davies, a beautifully illustrated introduction to the delights of nature.
Baby’s Got the Blues by Carol Diggory Shields, an adorable rhyming tale about the woes of being a baby.

Here are some photos to tempt you:


All the books are hardcover and retail for £14.95 each. You can enter in several ways, the first being simply to “like” the Mama Lewis Facebook page. (Anyone who has already liked it is still in the running – just follow the same instructions and it will recognise your “like” exists.) Any shares will earn you an additional entry.

It’s that simple – share and win! Click below to get started:

RULES: All entries must be from the UK. The books will not be shipped overseas. The competition is not open to anyone in my family – sorry family. The winner will be chosen at random and be announced at the top of this post by midnight of the last night of the competition. I have not been paid to promote these books and all opinions are my own.