What do you do when you're told there's nothing more they can do for your son, you know he's fading away and you believe that he may die?
This photo was taken just before I landed at a major children's hospital, with my sisters voice (acute care nurse) ringing in my ears "Get him to hospital Leonie, if he catches a cold he could die."............we were turned away.
I had 20 odd specialists on my list at the time and none of them knew what to do.
What do you do?........You cry a great sobbing cry, one only meant for private. You curl up, lay your head on the ground and howl until your eyes and lungs are empty. You use every tissue, hanky and face washer you own until you have no energy left and every muscle fiber in your body aches. You reach a point of despair that you never thought imaginable.....and then you hear something, it's him crying...and you realize.....he's still alive, right now he is still alive.
I had no other choice than to live with what ever it was we were living with. I had to get up, wipe his bum, be his mother and nurture him back to life. I had to think out of the square, differently....like none of the specialists I had met before....I had to think holistically.
I laid Finny down and had a good look....What was there? What could I see? I know it sounds a little basic but the human body is pretty self contained, so I had to look at it for what it was.
Bones, Muscles, and Internal Organs.
Modern medicine tends to have a specialist for EVERYTHING. Ears, nose, throat, kidney, heart, lungs, muscles, brain...it goes on and on. But in our case nothing was linking, we had many smart and intelligent helpers but no answers.
I knew I had to OWN the "Roller-coaster" called Finn, I knew I had to step up to the plate and drive the control panel. So with all my gusto (which was bugger all...I was exhausted), I headed to the pediatrician (2nd one) and tabled my ideas. Well actually to tell the truth......there was no tabling it was more "I'm going to do this, and I'm going to tell you every step of the way and you're only to open your mouth and tell me not to do something when you have an absolute REAL concern rather than a half hearted...oh...I wouldn't recommend that there is no research to support what you're doing". Fortunately he had a little age and years of experience under his belt and said...No worries Leonie...I WANT to be kept informed every step of the way and I WILL tell you if my concerns are REAL and what have we got to loose...NOTHING!
So it began, I found the best I could in 3 fields and landed on their doorstep with a very sick baby in my arms. I entered many doors, asked many questions and got BUZY.
My number one supporter and team player was (still is) this bloke .....Dr Neil Davies. It's often frowned upon to take children to chiropractors and it was defiantly not the "norm" 10 years ago but I had to try, as long as he was gentle and effective, I could see no harm. (And he was, very gentle, supportive, kind, extremely informative and invaluable. There was no more "left in the dark" with this guy!)
Number two was muscles. I new I needed to get active, active like FIT! I needed to make Finn strong and flexible. Finn couldn't lift his head or straighten his legs. We were told that he'd never walk or talk and his body presented this. His hands were cupped up under his chin and his little crocked legs were all bent and couldn't be straightened. At one stage my wish was, that he would be able to scratch the back of his head. Something so simple that most of us take for granted. Mr Yu - Point Percussion Therapy was discovered and we got busy......super busy. This was one big job. We did hours of physo at home and in the clinic....and boy oh boy did it pay off!!!
Then the last of the "big 3" was Robert Claridge a naturopath. Finn needed "juicing up". He required lots of additional nutrition to overcome the "failure to thrive" problems. He was prepared for surgery and post opp recovery. It was vitally important that Finn be in the best condition he could possibly be and to over come any obstacle that may present itself.
Then things started to change, he began to respond to all treatments.
Finn began to thrive, live, play and love. Over the next period of time Finn would be on the highest level of prescription formula, have 4 operations on his Bilateral Undescended Testicles and undergo very tricky Achilles Release Surgery.
So when I'm now asked..."Leonie.....which direction would you go.......or......what do you believe in, complementary therapy OR modern medicine?" My only answer will always be BOTH!!! There is no OR!!! There should never be OR. Both of these worlds are amazing in their own right. We need specialists in all fields but it's also absolutely essential that we take the larger holistic view and work together.
Without the support of these people, Finn would not be what he is today. Happy, healthy and whole!
I thank them all for helping create a life worth living.
Further information. Finn was eventually diagnosed with Costello Syndrome which affects 1 in 100,000,000 children. I don't tend to follow all the info to closely but it's a random "luck of the draw" thing. I have no anger towards those people who sent us home from hospital, because on that day, with the little information they had, they just didn't know what to do. And sometimes life's just like that.