From the moment I knew that things weren’t quite right with Isabella until the day we sat nervously in the Pediatrician’s office, we were living in the dark. Then even after that eventful day we went from being in the dark, to being thrown into the unknown.
So there we were in the unknown. Although we finally had people on our side and we had a group of specialists enlisted to try to help Isabella, we still felt very much alone. It felt like we were lost in the jungle. This is actually where the title of my blog came from. The idea that we were ‘Down in the Jungle, where nobody goes..’ Like the nursery rhyme. Monkey is what we call Isabella. So we were ‘Down in the Jungle with Monkey’.
The Oxford Dictionary definition of Jungle :
1. an area of land overgrown with dense forest and tangled vegetation, typically in the tropics
2. wild tangled mass of vegetation or other thing
3. situation or place of bewildering complexity or brutal competitiveness
These definitions couldn’t be more true of our lives. We were stuck in a jungle. We were in this dense forest where we hit tree after tree and didn’t know where we were going and people didn’t know how to help us. We encountered the tangled vegetation of paper work, appointments, hospital visits, tests and phone calls. Suffered the heat of the tropics too, with temperatures rising and blood boiling, when people let us down and kept us waiting. Our once straight forward family life had taken a turn and the road was no longer straight and we could no longer see where we were going. We were most certainly in a place of ‘bewildering complexity’. Forget the wood, we couldn’t see anything beyond those bloody trees.
Then we came to a small clearing where we found another family like us lost in the jungle. They too had a child, a little older than Isabella but just as gorgeous and just as puzzling to the medical profession. It was nice as we no longer were alone. So we continued wading through the jungle, feeling better about having some much-needed company, the jungle can be a very lonely place.
On we trekked and waded through the jungle helping each other negotiate some of the really tangled vegetation. Then we came to a huge clearing and we discovered more families here, about 100 or so, all lost in the jungle also. The difference was they had set up a temporary camp. It was somewhere people could go back to, when the heat and the vegetation all got too much. A few families had ventured out much further into the jungle, as their journey had started earlier. They were able to give advice on how best to navigate around certain trees and particularly tangled masses of vegetation.
Our new companions very quickly became our new family. We decided to stay with them at base camp. We often sit around the camp fire and share our experiences of the jungle. Our highs and our lows. We celebrate our children’s achievements. We also offer each other care and support when we have been bitten by some of the nasty bugs that live in the jungle or had a nasty bump on the head from tripping over tree roots. Some of us have suffered from heat exhaustation and felt like quitting and leaving the jungle but a natter and some TLC around the camp fire helps us feel strong again, to face another day in the jungle.
Now that we have found a base and a new family, it makes the jungle all the more bearable. We now see the beauty of the jungle, the butterflies, the birds singing and the sunshine peeking through the tops of the trees. We still have to battle through the dense vegetation, but it is nice knowing we are not doing it alone.
The base camp has grown rapidly in the last year, quadrupling in size. We tend to have lots of small camp fires burning now, as it is hard to hear everyone sitting around a large one, but we all know we are there, looking out for one another.
This Saturday 13th April is ‘Undiagnosed Children’s Awareness Day’. Thousands of children in the UK, Ireland and around the world have severe developmental delays that are undiagnosed. Without a diagnosis families often experience difficulties in accessing help and support from various services including, health, educational and social services. They become lost in the jungle. Although we have ‘one’ diagnosis for Isabella there is still more to her condition that remains undiagnosed. We still have a lot more of the jungle to trek through and our unknown journey is still continuing.
There may be other families lost in the jungle and needing to find ‘SWAN’ Base Camp. Please on Saturday could I ask you to wear ‘pink’ or ‘blue’ to raise awareness for those thousands of children around the world living without a diagnosis. I am glad we found Base Camp and a new family and hope that any lost families in the jungle find us very soon…..