Hope is a word I never thought too much about, just a word without much meaning. But since 2013 it is a word with a whole lot of meaning, but then written as HoPE.
On July 7th 2013 our daughter Kate was born. My pregnancy was uneventful except for a 33 week sonogram where they though her head was on the small side but after an extensive sonogram we were sent home reassured that she was fine. I never thought any more about it except that it might make her birth easier if her head was smaller.
When Kate was 3 months old we took her for a checkup at the clinic that monitors all Dutch children until they are 4 years old and also gives them all their inoculations. Her head had always been small but at 3 months it was getting alarmingly different from other 3 month old babies. Alarm bells started going off, why wasn’t her head growing normally?
So we went off to the hospital. Her fontanel was still open so she got a sonogram of her brain. Still no clear idea what was wrong, so she had a CT scan, still doubts so off we went to the Sophia Childrens Hospital in Rotterdam. (an academic hospital)
Here they did a whole load of tests on Kate. You might think this was an ordeal for her but she has always loved attention and loved all the attention the doctors were giving her. On day 4 an MRI was planned for the morning and we would get the results the same afternoon. By this time Kate was 6 months old already and it was becoming clear to us that she was behind in her development compared to other babies. When the specialist arrived that afternoon all she could tell us was that Kate’s brain wasn’t split into two halves and her corpus callosum was only half developed. This was the first time we broke down, the rug was pulled from right under our feet. In total shock we were sent home, this was on December 20th, this Christmas was very surreal, believe me.
On January 8th we were going to be phoned with the further test results and more explanations about what is wrong with Kate. I wandered around like a zombie all day waiting. Then the phone rang…..
A neurologist, a really nice lady, explained to us in layman terms what was wrong with her, Holoprocencephaille????What? What on earth was that? She sent us an email explaining everything and told us to call her back with any questions we had.
So that was how 2014 started for us, bewilderment, shock, acceptance, trying to deal with the situation. And questions, so many questions, will she ever walk? Talk? What kind of school can she go to? Will we have to move house? As a mum you want to know all these things but for a child like Kate all predictability is gone. For any other child it is predictable that they will sit, crawl, stand, walk, go to school, but for a child with HoPE nothing is predictable. And that was hard, very hard to accept. But once you do accept this and start living day to day you can start to find peace, enjoy life again and also sleep again, not unimportant. 😉
I am so proud of our family and how quickly we adapted to this situation.
We are sort of lucky with Kate because she is never sick (touch wood). Of course she sometimes catches a cold of gets a bit fluey but that’s all really. Okay, okay, she does have epilepsy and reflux but because we can control these totally with medicine I sometimes forget about these. She gets medicine twice a day and there is no trace of the epilepsy and the reflux, sometimes she doesn’t keep all her food down, but it’s not a big deal. We have arranged with the neurologist that if she is still epilepsy symptom free next august/September we will try cutting down her medicine. Very scary, but where 2 years ago I would have sleepless nights just thinking about that, I don’t now. I have learned not to worry about things you can’t control.
It may sound strange but having a child like Kate is also a beautiful thing, I have learned so much. To calm down, not to rush so much. To put things into perspective, don’t stress about the unimportant things. Plus I have met so many people I would otherwise never have met.
This month I started a new foundation, HoPe4Kate, who would have thought! I bake brownies that I sell for the foundation and we will be doing a lot more to raise money in the future. I just want Kate to have all possibilities, if a treatment isn’t covered by our insurance I want her to still be able to try it. She has had Horse therapy for the past few weeks and when she’s older I want her to be able to maybe try dolphin therapy (I know, I’ll have to bake an awful lot of brownies still!).
Kate is an amazing, happy girl, loves attention, loves people. She has the power to cheer me up if I’m having a bad day. She has such a contagious laugh! She really enjoys her life. Will she ever stand or walk or laugh, who knows. But it doesn’t matter, Kate is our daughter and we love her.
Of course it’s sometimes hard, I won’t deny that but if you just adapt to her tempo life is good. We love her and wouldn’t swap her for the world!
And then the word HoPE, Holoprocencephaille is HPE for short and if you add the O you get the lovely word HoPE. If you have a child with HoPE you always have hope. Nothing in life is certain. People ask me, what Kate can do and what the predictions are. There are no predictions, the doctors can’t predict because even though there are a lot of similarities between these children, there all develop in their own way. I always say, I have no idea but we do have HoPE.
Written by Jessica Terlouw