So I am dusting of the cob webs and writing my post today for undiagnosed children’s day and you can check out what’s going on everywhere else today too #itsamystery
April 2006 just a normal day on the market stall when serving one of the stalls oldest costumers she said to me “This baby is going to be special and change your lives forever” I didn’t know I was pregnant we had only agreed to have another child a month before but by the end of day I had done a test and it was positive.
If I really think about it this is when I stepped on the rollercoaster for the first time as my pregnancy was not the kind of pregnancy you would want. Fast forward and Archie was born at 37+ weeks normal delivery. We had some feeding difficulties and he was born with a club foot at 6 weeks old there was concern due to his head circumference it had grown at an alarming rate.
Doctors after scans could not tell me why my son’s head was growing at an alarming rate and why he was presenting in this way, development was becoming apparent that it would be delayed and again he was tested for many things all showing normal or negative. I use to drive my self crazy sat on Google wondering and reading all about different conditions that my son may or could have, going back and forth asking doctors questions but even the medical profession couldn’t give me answers and this journey on the rollercoaster became a very lonely ride. Archie has profound and multiple learning difficulties, cortical visual impairment, Epilepsy, Archoniod cyst on the frontal lobe of his brain, mobility issues, gross & fine motor skills are impaired, sensory processing difficulties, but each part of the jigsaw puzzle didn’t add up and this was frustrating it was like tying to do a jigsaw puzzle but too many pieces were missing there for you couldn’t see the picture. The rollercoaster became a very scary & frightening place to ride on your own and I just wanted to jump of but I couldn’t this was my new life a life I had never asked for, a life that for some reason we were given. Many times I wanted to give up & give him back but I just couldn’t I had to face head on what was coming our way. Archie was a little boy who needed so much help and I couldn’t give him that help on my own, he needed support from the physiotherapist, occupational therapist, speech & language therapist, health care system, education system, visual impairment specialist, neurologist, paediatricians, dietitians the list was endless and this became so over whelming, while Archie was having all this support I felt I had non and we were the only ones going through this I only knew a few other people with disabled children and there children had a name for their disabilities.
Then 3 years ago I came across swanuk and all of a sudden I was not alone any more they’re was more of us with children that were undiagnosed my rollercoaster ride was no longer scary, frightening or lonely it became a ride I enjoyed was fun exciting and full of families sharing their experiences together. My rollercoaster journey will continue but at least I know we will share the highs, lows, dips, the big hoops together and it will never go back to feeling lonely again because I have my swan family to help me. please help this to continue by watching our video of lots of children having fun and if you can spare some time donate the price of a cup of coffee this will also help other families become less isolated and alone. http://youtu.be/XVQW1JY8JJ8