Clinic emotions

Clinic emotions

Today is clinic day for Matthew.  Clinic means multiple doctors, tests, needles and examinations.  It means so many unknowns. We have been lucky enough to have had an eight week break between visits to the Cystic Fibrosis (CF) Clinic.  Clinic for Matthew involves an hour trip into the hospital, a day of school and a day of waiting around.  We arrive, struggle to find a park and then race to get to our appointment on time.  As we approach the hospital we place a mask on our faces (largely to protect Matthew from dangerous bacteria) and dodge the multitude of smokers who line the pathways to the entrance.  We have NO way of escaping them.  Matthew often holds his breath just to get in.  I digress. It is a day where emotions bubble to the surface, many that surprise us.  For all of the physical obstacles that Matthew faces on clinic day there more obstacles that can’t be seen.  It affects each one of us differently.  Anticipation is often high, hopes higher and fears… well, I am sure you can imagine. Just entering the hospital brings the reality and gravity of Matthew’s situation.  At times it brings back memories that are still raw, of times gone by where Matthew has been so gravely ill.  For most the health care system often measures a persons’ health based on “numbers”. Numbers are often the difference between an admission or not.  That aside they give us a reality check on how Matthew is really doing.  For a person with CF, you can’t see what is happening on the inside. Over the years...
The most beautiful birthday gift!

The most beautiful birthday gift!

As parents we all feel a deep sense of pride, a heart overflowing with love and an abundance of special memories, don’t we?  We wonder where the years have gone and how in the heck they have gone so fast.  We smile.  For me, each year on the 10th of January, I have all of the above plus a very strong and very deep sense of gratitude. Today is my son’s birthday.  Matthew is 14 years old and every year on his birthday, I feel like it is my celebration, for I was the one gifted someone so special.   At 5 weeks old Matthew was diagnosed with the chronic life threatening disease, Cystic Fibrosis (CF).  CF predominantly affects the respiratory (lungs) and digestive systems, and produces a thick glue-like mucous. The mucous is an ideal environment for bacteria and infection to form, causes an in ability to digest fats and is the major factor in the resulting decline in health. At the time we were told his life expectancy would be 28 years.  28 years old!?!?!?!?! I beg your pardon?  How disgusting, that based on statistics alone, someone I don’t even know gets to put a timeline on my child’s life and to make that the focal point of his existence. This was my beautiful perfect little boy and here I was being asked to face the end of his life when his life was just beginning.  He was perfect!  All I could do was hold him.   For any parent, to have a diagnosis with a timeline put on your child’s life cuts to the absolute core....
The Diagnosis

The Diagnosis

Last year I was asked to participate in a Cystic Fibrosis South Australia (CFSA) fundraising project for the 65 Roses Ball.  I was asked to be interviewed on camera – no problem.  As it turned out, after all of the planning, the interview happened to fall on the 2nd day of what turned out to be a 3-week frustrating admission.  Perfect, because it would be real, I thought. The first question was up and I was asked “What is CF?”, a seemingly simple question for a normally well-spoken “have it all together most of the time” kind of mum.  Five words in and I was a blubbering mess!  I was mortified.  I thought, “what is wrong with me?”  I was really taken back at my uncontrolled emotion.  I have been asked this so many times that my responses are well practised and somewhat detached.  I normally provide factual and in-depth information, explain the emotional stressors but rarely connect with them.  Sometimes when I talk about CF it is almost in a clinical sense.  So now it seems that I am human! It took me back to Matthew’s diagnosis. Rarely do I allow myself to cast back and feel that emotion. It is simply to raw. My heart aches for that young 24-year-old first-time mother.  No one deserves that heartache, the shock, the immense grief and despair that any parent feels when told there is something wrong with their child and worse still when doctors state in a matter of fact manner that there is a life expectancy, a cap on your child’s life. I decided to show Matthew off for the first time...
Kate’s story

Kate’s story

“My advice would be ask loads of questions and stay off Dr Google!” Meet Kate, a ferocious hard working mother who would do anything for her children.  Four years ago she was diagnosed with Breast Cancer but refused to let this bring her down.  During that time her young son Josh was also diagnosed with an AVM (Arterio Venous Malformation) and had to undergo invasive surgery where he was and still is at risk of losing his foot.  This is a family who are true fighters, not only do they stick together but will do anything to help others in the community anyway possible.  This is Kate’s carer story. Cassie x My name is Kate and I am a working mum with two children Joshua 10 and Jenna 7. When Joshua was five he was diagnosed with an Arterio Venous Malformation or AVM in his left foot. Essentially this is an abnormal growth of blood vessels which causes significant pain, swelling, abnormal bone plate growth and grows rapidly without regular treatment. It can be life threatening. The impact and cost Being a carer has impacted on our lives significantly as Joshua’s medical treatment requires us to travel to Melbourne every three to six months dependant on test results. A few times we have had to do trips a couple of weeks apart as test results have not been good. This usually requires us separating as a family as financially we just cannot afford to travel and accommodate ourselves in Melbourne for long periods. This also has significantly impacted on our daughter Jenna who has developed anxiety around our family being...