Harsh lessons for my chronically ill son

Harsh lessons for my chronically ill son

It is no surprise to me that my son who is now approaching 15, over the past few months, has been resisting his medications, treatments and physiotherapy that keep him well and maintain his baseline health for Cystic Fibrosis. What is surprising is that it has taken until nearly 15 years of age for him to do it.  I figure that some of the social delays he has, have contributed to this.  But he is most certainly in his teens, physically and mentally.  He is incredibly strong willed and stubborn.  When he has made up his mind about something, there is not a whole lot you can do to change his perspective. When my boys were young and as I was bringing them up, I tried hard to teach them to listen to what their body was telling them and to adjust their behaviour accordingly.  Sore tummies or headaches, and anything in between, always followed with a discussion about what led up to the event or the symptom.  Trying to identify the trigger. What I was trying to do was gift them self-awareness.  I knew from being a teen myself and reading literature about teens with Cystic Fibrosis (and chronic illness in general) that the teen years were going to be tough.  Especially for Matthew dealing with CF. My theory was to teach them to understand that the things we do, the food we eat, the drinks we consume and the environment in which we live can significantly affect how we feel and how our body performs.  By doing this, I hoped, no I trusted that they would grow...
3 Ways to Boost Your Energy & Clear Your Mind

3 Ways to Boost Your Energy & Clear Your Mind

Are you a carer or parent who feel’s like they are running on empty?  Not sure where the next burst of energy is or how on earth you will get through your day?  Perhaps you are surviving on regular coffee and sugary pick-me-ups?  It is such a common and easy pattern to get into!  I know, because I have been there. It is no secret that as busy caregivers we run the risk of burnout and exhaustion.  We have the best of intentions, trying to be and do everything for everyone.  Ensuring our loved one’s are taken care of, receive their treatments, medications and other therapies.  Taking care of the household, not to mention everyone’s mental health!  Many of us try to work full or part-time too.  The responsibility list can be unrelenting. Then BAM!! Out of nowhere you get sick, really sick.  It takes you a loooong time to recover, but you must keep going right?  Because no one will do the work for you. No one else can provide the level of care you can and do.  But when you are down and out, providing the level of care that you expect of yourself seems near impossible doesn’t it?  You tell yourself, I can’t afford to get sick.  Something has to give. YES SOMETHING HAS TO CHANGE!! In no uncertain terms, you MUST take care of yourself.  I know it seems impossible and a whole lot overwhelming.  It is ‘just another thing’ to put on your ever-growing list.  I get that, I do.  I have been there myself.  But I ask you this: While you are taking care...
NDIS complaints & Appeals!

NDIS complaints & Appeals!

Do you provide care for someone who is eligible to access the NDIS or do you yourself access this scheme? Did you know that under the scheme if you disagree with a decision you have the right to appeal or request review of these decisions.  In fact, there are 26 different grounds open to review. The Department of Social Services has commissioned a service to be provided nationally supporting people just like you.  This is a free service. Please see this excerpt from The Department of Social Services Website: NDIS Appeals Supports NDIS Appeals has been set up to ensure that all people with disability, and other people affected by reviewable decisions of the National Disability Insurance Agency (NDIA), have access to support when seeking review of those decisions in the Administrative Appeals Tribunal (AAT).There are two types of supports available via NDIS Appeals: access to a skilled disability advocate who acts as a support person, and access to funding for legal services, where a case raises complex or novel legal issues. Support Persons are National Disability Advocacy Program (NDAP) disability advocates. They are available in every state and territory. A Support Person can help by: explaining the review process, including what is involved in appealing to the AAT; helping to prepare documents; providing advice and skills so you can better represent yourself, or attending AAT conferences and hearings to help you put your case to the AAT. While the focus of NDIS Appeals is advocacy support, funding for legal services is available where a case raises complex or novel legal issues. Legal services are provided by Legal Aid Commissions, which determine eligibility...
Emotions for a child – a poem

Emotions for a child – a poem

In the days and weeks that followed my son’s diagnosis, no one could take away our pain or our grief. There isn’t really much that people can say or do to change it? You just have to ride the wave. A few weeks after the shock had settled I received a card and letter from my aunty. She, like all of our family, was hurting deeply for us.  She herself was hurting.  What does the future hold for our darling boy?  Her letter expresse her sorrow and grief.  She penned a beautiful poem. The words flowed from one parent to another. Words that simply could not be said.  Words that strike a chord deep inside. Words that are so special, so precious that they encapsulate every emotion we were feeling. A message I will never forget and always find comfort in.  She gave me permission to feel, feel everything. The parting words from her said simply: “The love just comes easy, you don’t have to try. Let little Matthew help you just live life and enjoy. He is wise beyond his years and will guide the way” Fourteen years later and it is still raw as ever.   Emotions of a Child is dedicated to all people affected by a life changing “diagnosis”.  I hope you find it as special as I do.     EMOTIONS FOR A CHILD by Kerri Trengove Sheer joy and wonder at the miracle of such a perfect, beautiful little bundle Shock and disbelief That your perfect little child has been given a ‘diagnosis’ “there must be a mistake” “I’m going to go to sleep...
Fuss free gluten & dairy free

Fuss free gluten & dairy free

Anyone will tell you, making major lifestyle changes can be overwhelming at best.  So when you are trying to implement sustainable dietary change for your whole family, who all have years of ingrained habits, it is no easy feat.  How do I know?  Because I would consider myself an accidental expert in change implementation on many fronts.  More specifically, we have evolved our diet significantly with many drastic changes over the past six years. You can read our back story here!  If you are considering a gluten and dairy free lifestyle, you needn’t be overwhelmed.  You do need to be organised and you do need support!  But fear not, I am here to help set you up for success!   Check out my 5 essential ‘going gluten and dairy free’ steps below… Have a strong reason why Plan, prepare, research and record Set up your kitchen Ask for support Bulk cooking and building your stock Have a strong reason why If you have decided to make dietary or lifestyle changes, they simply don’t happen overnight.  You need to have discipline, focus and determination.  If it is an off the cuff decision or a decision that is taken lightly, I am afraid you are setting yourself up to fall. If this is for a medical reason, my strong recommendation is that you be guided by a Naturopath, Integrative Medical Practitioner, Nutritionist or other specialised health professional.  We are guided by a naturopath who is passionate about realistic and sustainable good health & nutrition. She also undertakes diagnostic testing to ensure that my son’s health is being managed thoroughly and uses that with his...