With Thanks to The Board Meeting

Small steps is all it takes and every one helps build the foundations for the future. We received a grant for Faith to receive three months intensive speech and feeding therapy. This therapy will not only help in her improvement in speech but will help us build skills in feeding (with the support of the feeding clinic in Adelaide) that will prepare her for the feeding program later in the year or early next year. 

I dare to dream that this time next year she will be eating and progressing even further with her eating and speech. I know she will as she just keeps improving. Our speech and feeding therapy afternoons are filled with afternoon tea (trying not to eat too much, though tempting), bubbles, learning to blow and suck, silly songs, learning to drink from a squeezy bottle and learning that food is a friend and not a foe. 

Thank you to The Board Meeting for assisting us in building the skills needed to progress to the next step in Faith learning to eat!

Building the groundwork to eat again!

As I write this blog post I want to be honest with you about the daily struggle and challenge it is having a child that is tube feed. 

But there is hope, there is always hope. 

At last we have started a program with Lively Eaters in Adelaide to build the foundations for our little lady to learn to eat. 

It isn't going to be easy. There will be many challenges and road blocks but it is start. It is hope. It is a beginning of a journey Faith is ready for. 

Hope that her days are not filled with vomit and being fed through a tube. But days that can be enjoyed with tastes and textures and experiencing the wonderful social experience of eating. 

I take eating for granted. It is so easy for me but for Faith, it isn't. She has an oral aversion and no longer understands or knows how to eat. There are many reasons this has happened and contributed to this but dwelling on them isn't going to fix the problem. My thoughts have lingered too long on what ifs, we now need to look at solutions and steps forward not back. Looking to the future. So with the great invention of Skype we have begun. Small steps is all it takes and it easier than I thought to just start.

After several years of tube feeds, bad habits and survivals habits emerged and a few simple structural changes has seen such a change in Faith already. Not just in food but in her. First, no more iPad, TV or play during tube feeds. Meal times, as they are now called, are at the dining table and we all sit together to have some food. Our little man is a perfect meal time pal for Faith with his exploration for food, let's get messy approach and love of food. He is always offering or stuffing it in her face. Faith allows him to do this but not us. 

Meal times now have a piggy timer, so Faith understands when meal times begin and when it ends. We sing grace before we start, start the pig timer ( fifteen minutes to start with) and all tube feeds are done out of sight so she can't see them and only sees food. She will have a sense by seeing food and becoming full instead of seeing her tube and becoming full. 

There has been tears, tantrums, sobbing, anger of frustration but overall Faith has had fun. She has even started touching some food. She knows coming to meal time there is no expectation at this stage on her to eat orally. 

Practice and being consistent are the key. 

Words can hurt, words can heal - The Huffington Post

The reason I write is in the hope that I can somehow help others and connect with people. So I am always happy when I can share my stories outside my blog.

Today, The Huffington Post is sharing my story on Words can hurt, words can heal, please feel free to share my story!

Thanks again for stopping by and feel free to comment, I'd love to hear from you!

Words hurt, they come back at me when I am tired, depressed, sleep deprived or struggling with a hard, long day. Those days that you feel it is impossible to continue but you do and wonder how on earth it was possible. The guilt I feel that I could have done something to prevent my daughter’s disabilities or my son’s minor health challenge (now fixed) haunt me. I would do anything to fix either challenges and I do. It is late at night the words sneakily return and disable reasoned thinking.  The ceiling becoming a notice board for my thoughts all pushing for my attention. “Could I have done more?” Then, I tell myself “don’t torture yourself” but I still do over and over again. Continue reading

Words can hurt, words can heal

Laying blame on mothers seems to be an “easy” out when their children are born with varying medical conditions or disabilities. I have had the questions and statements “you must have done this when you were pregnant” or even “there was a study saying if a mother took this medication or ate this food it would explain what your child is going through right now”.

I’ve had so many well-meaning and rash comments like these ones. But what those people don’t know is the hurt, tears and guilt caused. When I was pregnant I choose to go to extreme measures with taking the “correct” vitamins, eating the right foods and following medical advice. During my first pregnancy I drove my husband crazy with my obsessed eating of the “right” foods. Second time round I learned more ways to adapt while eating what I felt was right for me.

Words hurt, they come back at me when I am tired, depressed, sleep deprived or struggling with a hard, long day. Those days that you feel it is impossible to continue but you do and wonder how on earth it was possible. The guilt I feel that I could have done something to prevent my daughter’s disabilities or my son’s minor health challenge (now fixed) haunt me. I would do anything to fix either challenges and I do. It is late at night the words sneakily return and disable reasoned thinking.  The ceiling becoming a notice board for my thoughts all pushing for my attention. “Could I have done more?” Then, I tell myself “don’t torture yourself” but I still do over and over again.

As I write, I await my son’s final minor surgery and words of “you should have done more” are stuck on repeat in my mind. I can even visualise the person who said it. It’s not worth the fight, I walk away least I say something I will regret. But then, I think of those people whose words bounce in my mind attempting to destroy my peace and I realise most of them would not have seen their child held done to perform medical procedures numerous times or seen the look of fear and questioning of “mummy don’t do this I trusted you” while the gas mask forces them to sleep for surgery. It never becomes easier. Or the missed moments of normalcy.

It is those challenging times my heart reaches out to love my children even more desperately trying to forget the words of hurt and striving forward. I know it is hard for outsiders to understand, comprehend the challenges we face but laying blame or sharing new ideas of research adds to the burden. I know I’ve done all I can as a mother but the words that fall off your tongue do affect and do hurt. People often look for a cause of a problem. They fail to see that sometimes it is just the way it is or just bad luck.

Words can hurt

Words can heal

What did yours do today?

Saying Thank you

Thank you Lismore City Lions Club

Saying Thank You!

It is not often we have the opportunity to say 'thanks' for helping. Recently The Northern Star ran a story about our delightful little lady and her journey in becoming mobile.

We are pleased to announce that little miss has her power wheel chair and loves it. She is learning to drive the power chair but particularly loves going around and around hooray!

The moment I watched her take control of her chair and explore was just amazing. For the first time in her life she went where she wanted. She explored, crashed, felt the leaves on the trees and delighted in her world.

Thank you to Lismore City Lions Club for helping our darling daughter reach for the stars!


Here is the story if you would like to read it Confidence Boost for Eleanor

No Negativity Journal in Womankind Magazine

I am feeling very honored to have my No Negativity Journal printed in this month's edition of Womankind magazine. My first story to be printed on paper!

You can buy the magazine from here http://www.womankindmag.com/

Day three: Negative thoughts are attacking my head. I'm putting up a mental red stop sign saying: "Stop, you are not allowed here". Check more out 

Now on Facebook!

Find me on Facebook

I have been debating with myself whether or not to have a Facebook page and I decided I would. So if you would like to keep up to date with what is happening with Faith and articles I have published I'd love to meet you on Facebook.

Hope to see you there!

Becky