Tag Archives: marie

“It’s simple solutions that make all the difference”: Marie’s story

At three foot six and with brittle bone disease, Marie is constantly adapting to looking after her growing baby Mark. And Marie and her husband Dan are finding often it’s the simplest adaptations that make the biggest difference to family life.

Mark is nine months old now and we simply do not know where the time is going. Every day is magical and he brings us so much happiness. Mark has recently started feeding himself finger food and is really enjoying meal and snack times. He will walk over to me when he is in his walker to high five me, a new trick! It won’t be long before he is walking independently and we have already started moving things up, which is where the seat riser in my wheelchair comes in handy.

We recently had some building work done to improve our bungalow. When we bought our place four years ago we were refused any help with adaptations and alterations from the Disabled Facilities Grant.

Marie in a wheelchair, holding Mark, on their outside decking
Marie and Mark on their new outdoor decking

So we have had to save up for this work – and now the back end of our home is completely wheelchair friendly. I can now drive my chair out from our lounge straight onto the decking and then down into the garden, as we now have full level access. To keep costs down we used standard building materials, standard French windows and lots of inventiveness to make it all work. This now means Dan, Mark and I can make the most of the rest of the summer and start planning garden toys and sandpits and things for Mark next year as a toddler!

Also our local Remap charity (who are awesome) made me some ‘steps’ from plywood covered with soft foam and fabric, suitably sized to push up against our sofa. This very simple contraption now means I can climb from my wheelchair onto the sofa and then from the sofa independently get onto the floor to play with Mark. The ‘steps’ are then moved out of the way so Mark can’t climb up and down them, the cheeky little monkey that he is! Being able to get on and off the floor has been really good and Mark enjoys having mummy play on the floor too. Such a simple and elegant solution to one of life’s problems when you’re 3 foot 6 and can’t stand!

Marie sitting on a soft step next to a lounge
Marie on her new soft lounge steps

We’ve always found that it’s simple solutions like this that make all the difference. It just takes a bit of determination and lateral thinking and you can overcome most of life’s obstacles – that’s something having Mark is making me realise more and more.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons.

For simple tips on adapting your home, check out the new tips feature on our online community.

“I love exploring the world with my son”

Last November, Marie and her husband Dan became proud parents of baby Mark. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. But the new family are finding inventive ways to enjoy time together.

Mark is now seven months and is developing fast. It has been amazing seeing him flourish and the satisfaction of knowing Dan and I are doing a great job is incredible. He is now onto three solid meals a day, plus his milk of course. He seems to enjoy everything that is put in front of him, but banana and broccoli are definitely his two favourites!

Marie feeding seven-month-old Mark in a park
Marie and Mark enjoying their local park

It is still very difficult that I can no longer physically lift Mark. He is now a third of my body weight and sitting down we are the same height! Even though we always knew this day would come, I sometimes wish he was a tiny baby again so I could relive being able to carry him.

We are, however, getting inventive and starting to see our local area in a whole new light. Our local play park has baby swings, which the designers have accidently put at the perfect height for me to push and play with Mark! He giggles and grins his head off the whole time. It is also really nice to be at eye level with him in such a care free ‘natural’ environment. Needless to say, this is now on our regular walking route!

Milton Keynes was clearly designed with all young families in mind, including ours. We have a comprehensive cycle network, separate from the roads, and you can guess what this means: complete safe level access, city wide.

To make the most of this, I have just got hold of a frankly awesome, new power chair. Provided by the local Wheelchair Service, it took a considerable amount of fighting and battling to get but it was worth it in the end. The new wheelchair can go up to eight miles an hour, which means once Mark is on his feet, and especially on his bike, we can have a brilliant time exploring the area as a family.

My new chair also allows me greater freedom around the home and is enabling me to do things faster, which comes in handy when Mark wants his breakfast! Mark loves the new wheelchair too, using the lights as a homing beacon if I am in it while he’s in his walker.

Dan and I are finding different and amazing ways to play with Mark together as a family. Mark’s favourite game at the moment is for us to sit at opposite ends of our 15 metre laminate hallway, while he runs between us in his walker, laughing his head off. Just that simple act of him running towards me on the floor, mouth agape, giggling like mad is enough to melt anyone’s heart!

We are now planning more adventures, trips away and places to visit, while life goes on in general. We are still completely overwhelmed by the positive attitudes we see and even complete strangers simply adore our little family.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons

He’s going to tower over me in a few months

Last year Marie and Dan became the proud parents of Mark, via a surrogate. Every parent wishes their child wouldn’t grow up so fast, but for Marie and Dan it brings greater challenges. At three foot six and with brittle bone disease, Marie must adapt quickly as Mark is likely to tower over her before his first birthday.

Marie holding her baby Mark
Marie and her baby Mark

Mark is almost six months old and he is getting bigger every day. It is so exciting to see him growing and all the things he can do now, but it also means I can’t support him on my own as much as I did before. I mean, he weighs over a stone now and I only weigh three stone nine myself!

In the first three months or so after his birth, I could pick him up by myself and give him a cuddle. Whilst I can still sit him up, wind him and dress and change him I can’t physically lift him anymore. This is where team work comes in and he is actually learning to help mummy move him already, smart little guy!

He is going to tower over me in only another three or four months. It was inevitable, but I am surprised how quickly it has happened. It’s been hard because I want to be as close to him as possible and when he’s upset (he’s teething at the moment), he wants his mummy to pick him up to comfort him.

But we are already finding ways to adapt. My Personal Assistant (PA) or Dan will put a big ‘V’ shaped bolster cushion around me so that I can support Mark while I’m comforting him or feeding him. They will also help to lift him when I am changing his clothes or giving him a bath.

I can still manage to feed him and change his nappy. He does kick me in the ribs sometimes though, which we have to look out for because of my condition. I have had a slight rib fracture since he was born. Although I don’t know for certain that was Mark, so I won’t blame him!

Nonetheless it is going to be a challenge, as he gets bigger and he starts kicking and falling about even more. But that is something we will just have to deal with and hope that, as he gets older, he will understand that there are things you can do with Daddy, but you can’t do too near mummy.

I do feel frustrated sometimes, like when Mark is in pain with his teeth he likes to be walked around and that’s something I just can’t do. I can’t get up on my own two feet, let alone hold him and walk around. But there will always be things that I won’t be able to do, so I just have to focus on the things that I can do.

I don’t think people realised I would be able to do as much as I am. Even Dan’s dad said “What are you going to do if he hurts you?” Well, if he hurts me, it’s just something that’s going to happen. I could go to the toilet and break my arm. I can’t stop helping Mark just because he might hurt me. You just get on with it and deal with it if it does happen, like any other mum.

Marie with Mark
Mark is now six months old and weighs more than a stone

I don’t feel different from other mums, and I have been accepted wonderfully at the local children’s centre where I take Mark for baby massage. All I need is a strong pair of arms, so if I drop Mark’s nappy bag, Dan or my PA will pick it up, or if I need to move Mark, they’ll lift him for me. I change Mark and feed him and sooth him and know when he needs to be burped. Dan’s mum said that I was a natural mum, which was quite nice.

I just want to be the best mum I can be for Mark because it does go too quick. It feels like only yesterday that he was born and soon he will be bigger than I am. I am treasuring every moment and just doing what I can to be the best mum I can, and it feels like I am doing a great job.

Marie is blogging about being a disabled mum for Scope and has been raising awareness by talking to That’s Life! magazine and Sunday People

This Mother’s Day is going to be tough

At three foot six and with brittle bone disease, raising a baby was always going to have its challenges. Last November Marie and her husband Dan became the proud parents of Mark, via a surrogate. As Mother’s Day approaches, guest-blogger Marie reflects that one of the hardest things is not having her own mum around.

Marie holding her baby
Marie with her baby Mark

This Mother’s Day is going to be tough. It will be really happy because it will be my first year of being a mum, but it will be difficult because my mum won’t be there. My mum died in October 2012, so this will only be my second Mother’s Day without her.

I think about my mum every single day. For some reason, when I am giving Mark his feed at about eight o’clock, I think about her the most. Mainly I think about how sad I am that she didn’t get to meet Mark and that she’s not here to experience what we’re experiencing.

Mark is growing every day, getting bigger every day. He’s doing more, like he started giggling in the last few weeks. It’s amazing, but there are two sides to it. At one end of the spectrum, I’m so happy because it’s our first baby, but at the other end, my mum’s not here to experience it.

I am glad that my mum knew what we were doing, that we were trying to have a baby. She was a bit worried at first about how we would cope physically, but when we explained that there would always be someone with me, she was fine.

She knew I just need a strong pair of arms to enable me to do things, because she was that strong pair of arms for so long. Now, my personal assistant and my husband Dan do the lifting for me: lifting Mark on to me, lifting him into his buggy, or lifting him from his cot. Once Mark is within my reach I can pretty much do most of the tasks for him on my own. But when something happens in life you naturally want to ring your mum and I can’t do that anymore.

It’s difficult, but now I just have to focus on being a mum to my little one and do what she used to do with me, with him. Sometimes when me and Dan bath him, if it’s a bit chilly, I put his clothes on the radiator to the warm them up and that’s something my mum used to do with me.

And if I’m ever feeling down, Mark is always there to pick me up. One of the best things is his smile. His eyes are so big and blue. As soon as I wake up in the morning I look over at him and he just smiles. And that just makes me happy all the time.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People

There are still people who believe disabled people shouldn’t be parents

Guest blog from Marie, who thought she may never have children because of her disability. After six years of waiting and exploring different options, Marie and her husband Dan became the proud parents of Mark in November. Thirty-one-year-old Marie has brittle bone disease, and in the words of her husband Dan, “could break her arm reaching for a kettle”. Marie’s brother died from the same genetic condition after falling from an unsuitable wheelchair. A wheelchair user herself and with a fused spine, having a baby was never going to be straight-forward for Marie.

Marie holding her baby Mark
Marie with her new baby Mark

When Dan and I first got together I was quite honest that I didn’t know if we could have children. Some women, even with my severity of brittle bones disease, can have a baby without a problem. But I have a severe spinal curvature and a heart condition as well, which means it would be dangerous for me to carry a baby to term.

We always said that we would adopt, but when we looked into adopting, we discovered they make it really hard if you’ve got a disability. I felt devastated. I thought that was it; we’re not going to be able to have children. But it was always at the back of my mind that we wanted a child. I even, at one point, thought about risking it and trying to carry a baby myself, but I knew it would have been too much for me.

It was a friend who suggested going to a surrogacy organisation. When we first went to talk to them I was worried; I thought they wouldn’t touch us because of the disability. But they were great! They didn’t give us any indication that it would be more difficult as a disabled person. I thought we would have to wait years and years for a surrogate to choose us, but we waited about 18 months.

Obviously there are things that have been and will be difficult. The surrogacy has been quite emotionally difficult for me. I feel guilty sometimes that someone else had to go through all the pain and sickness for us to have a baby.

Marie and Dan pushing Mark in a pram
Marie and Dan taking Mark for a stroll

I’m also anxious about what people might think. There are still people who believe disabled people shouldn’t be parents and we’ve had some really strange reactions from people. When Dan and I went to John Lewis to buy the cot, for example, they didn’t know what to do with us. They were like, “Is it for a friend?” They didn’t know what to do when we said it was for our baby. They were stood there staring at us for like 30 seconds.

There are so many things we don’t know as well, because we’re first time parents. We had a few sleepless nights, before Mark was born, worrying about things. We went on a First Aid course, so we know what to do if he’s choking or something. We’ve wanted a baby for a long time but it doesn’t quite prepare you. Your life changes so much.

Like all new mums, I’m exhausted, but having Mark in our lives is just so amazing. Dan and I are learning more about Mark and being parents everyday – it’s an adventure!

Marie is going to be blogging about being a new mum over the coming months, and has been raising awareness by talking to Sunday People