Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

Ice Cream Dress!

28th January 2016

 

I first came across Living Dead Clothing when Madeline Stuart did some modelling for them last year. I brought myself a dress last year after Veronika’s surgery and every time I wear it I get comments on how awesome it is(I should post a pic in the comments)

Veronika was given some money for Christmas. Last week I was looking at the dresses and noticed they have some girls dresses. Veronika was sitting next to me and as soon as she saw this one she said ‘that one’ and then signed ‘ice cream’. I asked her if that’s what she wanted to spend her money on, and I got a huge ‘yeah’

I have one very excited girl today after the post arrived!

Dancing away with the fabric swishing around her 😊

‪#‎veronikawillwalk‬ ‪#‎livingdeadclothing‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎newdress‬ ‪#‎icecream‬ ‪#‎happygirl‬ ‪#‎madelinestuart‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Siblings…

26th January 2016

Siblings…..

Having a sister that has high care needs means that a lot of my time is taken helping Veronika….today I spent over 2 hours(over the day) sitting, helping Veronika drink from her cut out cup to try and get more fluid into her….this is along with the usual therapy we do each day, plus all the ‘usual things’ with being a mum.

For me it’s important to grab some time with Veronika’s brothers when I can….so tonight after dinner Jakob and I went out for a bike ride. I’m working on getting better at making time to do things with the boys, either individually or together….and this is one of my big personal goals for this year. Last year was incredibly tough with Veronika’s surgery and rehab, which meant Veronika and I were interstate for over 2 months, and when we were home it was incredibly difficult to get out.

So bring on more bike rides, more ‘time out’ with Veronika’s brothers….especially before they get to the age where they don’t want to do anything with me!

‪#‎siblings‬ ‪#‎veronikawillwalk‬ ‪#‎qualitytime‬ ‪#‎bikeride‬ ‪#‎timeout‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Journey to health….a reflection

22nd January 2016

When pictures of Veronika pop up in memories….I usually stop and realise just how far my girl has come.

When the 2 pictures in the top row came up yesterday one of the things I remembered was how irritated and red Veronika skin was when she was little….we have worked so hard with Veronika’s dietitian over the years figuring out what Veronika is sensitive to….if her skin is red and irritated on the outside one can only imagine how her gut health is on the inside.

Tonight as I was reflecting on the journey with her food sensitivities I look at how healthy Veronika’s skin is now compared to when these photos were taken.

It’s hard work making sure Veronika’s diet is free of the things she reacts to, but when I look at these photos and see how her skin glows and is so healthy it’s worth the effort 💖

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.
24th January

Helping Mum pick some veggies, and a strawberry from our veggie patch….home grown goodness…..

Check out that photo of Veronika squatting to reach into the zucchinis…..a little bit of therapy thrown in 😉

‪#‎veronikawillwalk‬ ‪#‎homegrown‬ ‪#‎veggiegarden‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Life Skills….a trip to Hill Street grocer

19th January 2016

 

This afternoon after our appointment we went to Hill Street Grocer to get some fruit, veggies and meat

I parked the car and turned and asked
Veronika is she was going in her wheelchair?….’no’

So I asked her if she was going to walk?….’yeh’

Are you going to have your own basket?….’yeh’

Veronika picked a basket on wheels(of course) and one for me to carry. Veronika kept trying to push her basket and I explained and showed her how she needs to walk and pull the basket….it took a while as each time we stopped she again went to push it.

We got the fruit and veggies we needed and went to the deli to get the meat….I love how the staff interact and talk to my girl, not at her or ignoring her but truly talking to her….they pass the meat to Veronika and she puts it in her basket….

As we go to leave the deli to go to the counter to pay, Veronika realised her basket was to heavy for her and showed me she wanted me to carry some of the things she had. So we put them in my basket and went and waited in line at the counter.

Life skills…..it takes at least twice as long to do the shopping this way, but this time is an investment in my girls future independence

‪#‎veronikawillwalk‬ ‪#‎veronikashops‬ ‪#‎lifeskills‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎hillstreetgrocer‬ ‪#‎walking‬ ‪#‎mygirl‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

WOW…18th January 2016 Veronika see’s her rehab specialist

‘Wow’

One tiny word that packs a punch…..

Today Veronika saw her rehab specialist….

He came out to the waiting room where we were, and my girl stood up and took off walking up the hall…..and her specialist stood there, watched Veronika and said ‘wow’.

He hadn’t seen Veronika walking independently since her hip reconstruction.

We had her appointment, and as we got up to leave he said it was good to see us both and great to see Veronika walking so well….and Veronika walked all the way back to the car

‪#‎veronikawillwalk‬ ‪#‎princesswarrior‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎hipreconstruction‬ ‪#‎rehab‬ ‪#‎walking‬ ‪#‎proudmumma‬ #oishim

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.
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Veronika Will Walk, our Ups and Downs with Cerebral Palsy shared Sunrise's photo. ...

"Hi there, I know we don’t know each other well but my son Sawyer and your child are in the same class. I understand that your child recently delivered birthday invitations to the entire class except to Sawyer, who was not invited. I also understand that this was not an oversight on your part, that it was an intentional decision to not to include my son. I want you to know that we don’t have an expectation of being invited to every birthday party. In fact, when Sawyer celebrated his birthday last year we only invited a few close friends as we wanted to keep it small, since it was over the Christmas break. But in your case, this is not the same reason. In fact, you have invited all 22 other children from the class except for my son. I know it’s not because he’s mean, you couldn’t meet a happier child. I know it’s not because he’s not fun, he has a great sense of humour and an infectious laugh. I know it’s not because your child and him don’t get along, he’s brought up your child’s name on several occasions. The only reason why you decided it was OK to not invite my son to your child’s birthday party is because he has Down Syndrome. I am sorry that you are not informed, maybe scared, or uncertain about what it means to have Down Syndrome. I know if you knew more about Down Syndrome you wouldn’t have made this decision. I am not mad at you. Rather, I think this is an opportunity for you to get to know my son better. You see, having Down Syndrome doesn’t mean that you don’t want to have friends. It doesn’t mean that you don’t have feelings. It doesn’t mean you don’t like to go to birthday parties. People with Down Syndrome want the same things that you and I want. They want to have close relationships, they want to feel love, they want to contribute, they want to have meaningful lives, and they want to go to birthday parties. It may be more difficult at times to understand my child. But the laughter and love that you share doesn’t need interpretation. I want you to know that I was also like you. I was scared, uncertain and misinformed about Down Syndrome before having my son. I was so worried that my other children wouldn’t be able to connect with him in the same way as other siblings do. But I was wrong. In fact, my children are closer than most other siblings are. Having a brother with Down Syndrome has helped shape them into compassionate individuals who know that just because you may be a little different that others, that it’s OK. They are not afraid to help when they see someone struggling. And they are not afraid to approach someone they might not fully understand. In return they have received so much love and joy from having their brother as their best friend. Maybe you are struggling with the words to say to your child because your child did not want my son at their birthday party. Maybe you let your child decide that it was OK to single someone out. I know it can be difficult to teach our children about something we may not understand ourselves. I struggle with this as well. But this is a great opportunity and life lesson to have with your child. They will remember the time that their parent said to them, it’s not OK to leave someone out because of their disability, race, or gender. I know you want the same things for your child that I want for mine. As parents, we want our children to be liked, to have friends, and to not be left behind. And how we do this is by setting examples ourselves and encouraging them to make choices that they might not be old enough to fully comprehend. But they will look back one day with understanding and the knowledge that you have shared with them. I am certain, that with a little encouragement, your child can develop a true friendship with my son that will leave a permanent, positive impression on them for the rest of their life. It’s only until this happened that I realized myself that Sawyer hasn’t been invited to hardly anyone’s birthday party this past year. The kids are getting to that age where they often only invite a few children to their parties and he hasn’t made the cut. Other parents I know that have children with Down Syndrome have often started the school year by educating the class and I haven’t done that. He’s always just been Sawyer to me and I haven’t felt the need to talk about Down Syndrome to his class until this moment. I realize now that I have let him down. I have let a year slip away where I could have done more to educate families. Perhaps then we wouldn’t be in this situation. I realize that it’s my obligation as his parent and advocate to educate people more about what it means to have Down Syndrome and how they are more like you than different. I now know how important it is to talk about it and it’s something I am committed to doing a better job of. Please know that I am here to talk if you would like. I may be a mama bear but I am not a scary person. I recognize that we all make mistakes and at the end of the day, I think we both could have done better. Thank you, Jennifer (Sawyer’s Mom)" Photo Facebook/Jennifer Kissengele

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Thanks Auntie Mel for the chocolate your made me.....I really enjoyed eating it! Can you tell 😊

#veronikawillwalk #trisomy21 #cerebralpalsy #downsyndrome #hemiplegia #epilepsy #sleepapnea #chocolate #handmade #70%cacao #family #auntie
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Sunday bowling.....Miss V loves her bowling each week 🎳

#veronikawillwalk #cerebralpalsy #trisomy21 #hemiplegia #downsyndrome #epilepsy #sleepapnea
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