Hope is a dangerous thing

Violets care was now under the community pediatrician. Our first impressions were good. An MRI was ordered immediately. I brought up my thoughts on a possible diagnosis from researching all of Violets symptoms and struggles. Cerebral Palsy was a very real possibility, she didn’t shy away from discussing that as the previous consultant had. We felt relieved that we were finally being listened to and had great hope that the long awaited MRI may shed light on the mysteries surrounding Violet.

Violets MRI was carried out under general anesthetic. Both myself and my husband were with her while she was put to sleep. It took about 4 mins for the gas to knock V out. It felt like the longest time in the world, she was distraught. Strangers holding a mask over her mouth while I had to hold her tight in my arms as she thrashed about in her frightened state. When she went under my husband burst into tears and had to walk out the room. Although I had held Violet against me, I hadn’t had to watch it play out, to see the frightened look in her eyes and for her to suddenly go limp as she dropped into unconsciousness. The was only the fourth time in ten years I had seen him cry.

That day aside we were full of hope. We would hopefully have answers, it was all pointing towards cerebral palsy and once she had her diagnosis we could put a proper plan into place. For any parent or individual going through a diagnosis journey, all you want is to know, the not knowing is such a stressful and depressing reality.

The results were received a week later and we had an appointment to meet with the new consultant to go through them. What she told us at that appointment wasn’t what anyone had expected and started the worst eleven days of our lives. It was the 31st January, a date now etched into my mind. You see, the MRI had shown brain damage. But not the kind expected. The interpretation of the images by the radiologists indicated two possibilities, a metabolic disorder or leukodystrophy. I had to literally prize a copy of the MRI report from the consultants hand, she didn’t want me looking these conditions up with the detail of Violets brain damage. It became apparent why when i did google the later condition that evening. The majority of metabolic disorders are life limiting, meaning most are progressive and the individual will die as a child or young adult. With leukodystrophy the life expectancy was 2-8 years. Violet wasn’t even 2 yet.

IMG_3845

I cannot tell you the despair we felt. The thought of losing your precious child, potentially very quickly. The utter shock. My mind would swing between being strong for everyone else and trying to get the neurologist appointment in London in place as quickly as possible, to not being able to even look at Violet without crumpling into a sobbing mess. We discussed my husband taking a break from work, we would travel and make as many memories with Violet as we could. I started making a rough ‘bucket list’ of things we must do with Violet, things she would love to experience. Sleep evaded me completely, how could i possibly sleep when i didn’t know if my little girl was going to live long past her upcoming birthday. We received incredible love and support from our families and friends. Its what helped us survive that dark, dark time.

After alot of chasing we were offered an appointment at the Newcomen centre at the Evelina childrens hospital in London. We drove up, our hearts in our mouths. I felt calm momentarily and a constant, frantic kind of fear that just bubbled under the surface. The neurologist explained he had discussed Violets MRI results with a panel of colleagues. They all agreed that Violet did not have a metabolic disorder or leukodystrophy. That her brain damage is not life limiting. I took in a deep breath, it felt like i had been holding my breath for such a long time. As he went on to explain that Violet has quadriplegic cerebral palsy, both my husband and i sat there with the biggest smiles on our faces. he looked at us in complete bewilderment. he couldn’t understand how he was telling us that our daughter had the most severe type of cerebral palsy and we were happy. we weren’t just happy, we were ecstatic! She wasn’t going to die. The appointment was long with examinations, lots of information shared and questions asked.

As we walked out the consultation room i immediately rang my mum. She, my dad, my brother and sister in law were all waiting with our little Henry for the outcome. as she answered i can remember just saying, “shes got cerebral palsy, its not the other things! she is going to live”, that was all that mattered.

We had something to eat at the hospital restaurant, the first real meal either of us had eaten in a while. I honestly had a smile plastered to my face. The relief coursed through my body. We finally had an answer, our daughter has cerebral palsy, she is classed as quadriplegic and profoundly disabled. But that does not define her. She is the funniest, bravest, cheekiest, most beautiful little girl in the world. She will achieve great things.

I will never forget, as we walked along the embankment my husband turned to me and said “we get to keep our pickle”.

Left – In the restaurant straight after the consultation, Right – On our walk back to the car via the embankment

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s