From the beginning

Ok, here we go..

Cayla was born in March 2009 in week 39 and both pregnancy and labour was without any problems. The labour was fast, only 1.5 hours from the first contraction until she was out! The first few months were ok except that she was screaming a lot and had silent reflux, she also only slept 4 x 40 minutes a day so no time for any ‘mummy naps’. After nearly ten months of no sleep at night time it all settled and with medication for reflux and visits to the chiropractor Cayla slept through the night – yay!

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Cayla started crawling just before she turned one and cruising along furnitures shortly after so we thought that she was going to start walking fairly soon. However when she was about 18 months I took her to our GP (general practitioner) as her left foot just didn’t look right and she was still not walking. The doctor didn’t say much but sent a referral to an orthopaedic specialist who told us that she had Metatarsus varus (club foot) and it should sort itself out in time and with some light stretches. However, a few months later when Cayla was about 23 months we had an appointment with another orthopaedic specialist in regards to some sort of brace or splint for her foot. This lady took one look at Cayla, squeezed her foot a bit and told us that she was pretty sure that Cayla had Cerebral palsy. We were shocked to hear that and I was crying my eyes out in the cafe next door afterwards…. We knew very little about Cerebral palsy and what it really meant, we were terrified of what the future would hold for us and little Cayla. All sorts of thoughts went through my mind… is she going to be mentally disabled as well as physically? Will she go to school, will she talk, walk….. it was just horrible….

The following day we managed to get an appointment with a pediatrician with experience in this field and we were still hoping that this pediatrician would send us home as there was nothing ‘wrong’ with our little girl. Unfortunately this wasn’t the case… she also gave us the diagnosis of Cerebral palsy, left hemiplegia which means the left side of her body. 
We were asked tonnes of questions about Cayla and some of them were really weird and uncomfortable for us. We answered ‘no’ to most of her questions. After that it was time for her to examine Cayla and she approached in a really odd way, like Cayla had severe autism and would run away any second or I’m not quite sure.. The lady tried to take Cayla’s box of sultanas away from her and also tried to remove her favourite Dora crocs to have a look at her feet…! Not a great idea and Cayla was not impressed. After a while and with some help from us she did what she had to do with Cayla but without saying a word to us during this time. She measured her head, checked her reflexes, compared the strength in her left versus the right arm/hand and so on. Then she sat down in her chair, made some notes and slowly turned around towards us… and with her hands in her lap, she looked down and with her tiny horrible annoying voice she said – yeees, there is something not quite right….
I will never forget the feeling I had in my chest when she said those words….. I felt so angry with her…… Thousands of thoughts running through my head, what did she mean about ‘that something wasn’t quite right’? Explain yourself you stupid doctor my mind shouted inside my head…! Unfortunately this doctor couldn’t answer any of our questions and even though she could see that we were in shock and knew absolutely nothing about cerebral palsy ( I was in tears and my husband asked lots of questions in regards to Cayla’s future and so on). I know that it must be difficult for anyone to say what will happen in the future but I think it would have been great if we were at least presented with some sort of information about Cerebral palsy. But no, nothing…  but she did say that Cayla was like a 1-year old (she was nearly 2 years old), that was a hard one to swallow. She also spoke a lot about carer’s allowance, MRI scan on Cayla’s brain, Medicare rebates and so on.. Whatever… I think I just blocked out what she said after a while.. There was just no way I would let anyone do a brain scan on my beautiful daughter… I just didn’t care about the organic reason for the cause of her cp.

So what happened next, well, we hid away in our house for five days and just cried and spent the whole time kissing and hugging our kids. All these questions.. how could we have missed that there was something ‘not quite right’ as the pediatrician nicely put it after her short consultation a couple of days earlier. What is going to happen in the future..??? Maybe I didn’t spend enough time playing with Cayla as I did with her brother,  maybe I should have bought more educational toys for her, all these questions and I was totally blaming myself…..  A mother’s guilt……..

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2 thoughts on “From the beginning

  1. I have just found your blog and am reading back to the beginning. My little girl has just been diagnosed with mild CP (2 weeks ago so still in shock and frantically researching), and there are many similarities in our stories. Thanks for sharing!!! xx

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