In the story Alice In Wonderland, Alice follows a White Rabbit down a rabbit hole and falls into a curious hall with many doors. I sometimes think our situation with Isabella and living without a diagnosis is in many ways like this fictional tale. Alice could be myself and Paul and the White Rabbit could be Isabella’s medical condition. Now Paul and myself could have sat on that riverside and not worried about the White Rabbit but curiosity and the love of our Daughter got the better of us. So we followed the White Rabbit into the rabbit hole and fell a long way. We fell at varying speeds, but we landed together with a bump.
We have been in the curious hall a while now and we have been through several doors of varying sizes. The door which led to the MRI Scan, while it was painful getting in through the door, it led to nothing, except another door through to another MRI Scan. We have been given a leave pass for the waiting room. We are trying our hardest to be patient.
A few months ago we got through a large door which led to the Neurologist’s room and this room changed everything. He gave us some pointers on which doors to try next. He knew that some would more than likely lead to nothing, but he didn’t want us to miss anything along the way.
So on his advice we went through a large door which led through to a Lumbar Puncture room. It was an awkward door to get into and not very pleasant once we were inside the room. After waiting very patiently for what seemed like an eternity in the waiting room it too led to nothing and proved fruitless.
We then went through a door which led to the El Dopa room. There was a medical package in there for Isabella. It read ‘Eat Me’. So she did, but nothing happened.
Continuing down the hall we also went through a very small door, which no one likes to go through. It led through to the Rett’s test. Thankfully after an extremely nervous wait we came back out into the same hall. We were aware that if the Rett’s test would have come back positive it would have led through to a different hall with a whole new set of doors.
Back in the hall once again, we tried several door handles on different doors of varying sizes that led us through doors to varying blood test rooms. No sooner had we got through the different doors we were sent back out again. There apparently was nothing for us in these rooms either.
We have seemed to be wandering aimlessly down this hall for a long time now. Some door handles we try won’t budge, they are stuck, so we have to wander even further down the hall until we find doors that we can open.
We managed to negotiate the door to get into the EEG room. It was a bit tricky getting in and sadly we weren’t entirely prepared for what was inside the room, so we have to go back in a later date. On the upside at least the next time we go back in we know what to expect. We just have to hope we can find the door again.
Recently we got into the Geneticist’s room. It took some time and annoyingly we had to go back into rooms we had already been in. That was frustrating, as it took lots of time and time, as we all know is precious. Still nonetheless we are in the room now. It seems vibrant in here, a bit more colourful. Not as dark and dreary as the other rooms we have been in. The mood in here is brighter, more positive. The Geneticist understands why we want to follow the White Rabbit. She understands by getting to know the White Rabbit we will know what we are up against.
Unlike the people we have met in the other rooms she has given us a map. She has made things clearer, explained The White Rabbit can be tricky to track down but she will do her best to help us..
So here we are back in the hall with our map and we have now found the doors to genetics testing. We are currently sat in the waiting room, again trying to be patient. We have popped back to the MRI scan room and results aren’t in, so we continue to wait. This White Rabbit is most certainly elusive and we may never find him..but we will still continue to wait and we will keep trying doors until we do..