With all my blog posts on Hydrocephalus, I’ve been contacted by a few people who either have the condition themselves or someone they love has it, more specifically…babies/children.
This got me thinking…We all seem to ask the same questions and go through the same emotions, even though our bodies handle the condition differently at times. Offers of prayer, support, reassurance and advice on what to do are never far behind when someone posts in a Facebook group.
Until recently, I’ve had a few parents reach out to me asking the same questions and then some. Unfortunately, I’m an adult diagnosed at age 29 so can’t really give much input to someone who has a baby/child diagnosed with this condition. However, I am a mother of 3 children and can relate from that point of view. When I put myself in that parents’ shoes, there are a few things which come to mind. It’s about Compassion and Empathy and, because of this reason, I decided that I am going to reach out to the groups on Facebook and ask for input into an eBook.
I have not worked out exactly how I am going to do this but I figured, if I could write Hydrocephalus: Floating Faithfully, then surely I can do this too. Regardless of the fact that I work full-time, have a busy life with home and family and have a few bad days typical of a Hydrocephalus Hangover
This is what I posted today (for anyone who follows this blog but is not a friend of mine on Facebook):
“Hi everyone. I’ve had an idea, which I would like to put together, for all Mum’s and Dad’s of babies/children with Hydrocephalus.
We all know that at diagnosis, it can be a very daunting time and there are so many questions, which come to mind. My aim is to put together (depending on the number of responses I receive) a blog post/eBook of advice from those who have gone through this. A source of knowledge based on personal experiences. What I need from you, since I’m an adult diagnosed at 29 and can’t really answer from this perspective:
- Any advice you can give to a new parent of either a full term or preemie, newborn (so this will be broken into 2 categories) upon diagnosis.
- What other (if any) medical conditions was your baby diagnosed with at the time of birth and how did you cope with this?
- What surgical options your child had (at what age) and what worked best for them? When they had their first op, age now and how many they’ve had since also what was the healing process like?
- Any concerns or strategies you implemented in terms of care from family/friends and how they helped you. This could even include when/if your child started daycare/school and how you prepared others, if necessary.
- How were teachers prepared and informed of your child’s condition? Did you get support and was your child limited in anyway in terms of physical activity.
- What challenges have you experienced and how did you manage them?
- Milestones you looked forward to and how their development has been affected.
- What telltale signs to look out for and suggestions of what to do?
- What strategies for communication you put into place with your little one so they could let you know when they weren’t feeling well.
And, when did you start doing this.
- Coping mechanisms you found useful. Support groups you joined, etc.
- What “normal” emotions can be expected on this journey?
- Any advice, comfort or reassurance you can offer would be great as well.
I’m thinking up to an age where you felt comfortable that your child could effectively communicate when their Hydro needed attention.
This will be a free resource to be shared between everyone and all newcomers to the Hydro family.
What do you think?
If you would like to contribute your knowledge and experiences, please use the guidelines above (feel free to suggest anything helpful I might have missed) and e-mail it through to me, using the link at the end of this post.
If you are a parent who has just been told your child has Hydrocephalus, and there’s something else you would like to include, let me know too.
Lastly, please re-post, share in other groups you belong to or copy and e-mail to anyone who could contribute.
Thank you for your input…and hopefully making a difference in a little one’s life.”
If you feel in anyway that you can contribute or would like to help, please follow the instructions above and let’s do this!
The success or failure of it all depends on the input I get from others…I cannot do it on my own. I have challenges with my Hydrocephalus as well, especially My cognitive whirlpool but I am going to give it my best shot.
Let’s make a difference to the Hydro world…it might not be a cure but it’s a way to help make a change, at least for the more vulnerable and voiceless.
I’m super excited to get started!!! Aren’t you?