I recently completed and self-published my book Hydrocephalus: Floating Faithfully. This is a book that I had to write not because I was forced to. On the contrary, it was driven by my realization of, what I believe to be, my life purpose…To effect change, no matter how big or small.
It serves so many purposes:
- Introducing others to a condition many have never heard of,
- Educating some to get a better understanding of what it’s like to live with this condition,
- It highlights the need for education…even among the medical professionals themselves,
- It is my way of trying to help raise some money towards research for a cure as funding is limited, and
- More importantly, it is a reminder to me of the journey I have travelled and bears witness to the power of the faith I have in a living God who carried me when I could do nothing for myself.
I have found so many people (through the support groups I listed in my book) who have this condition, going through the same things. We all have the same fears, concerns and joys. Yes…joys.
Hydrocephalus is a condition which, left untreated, could cause death. So it would be natural to assume that it must be a depressing thing to face…and that it is too (we all have our moments). However, there is joy in knowing that your shunt or ETV is working as it should and there is flow. In the words of my fellow Hydro Pioneer, Ron Patrick Kelleher, TGIF (Thank Goodness It’s Flowing).
There is joy in knowing that you passed another month or year without surgery to replace your shunt or redo your ETV. We can share milestones in a child reaching a certain age when doctors gave them little hope of survival or achieving something academically. And, more than anything, thankful for a day without any headaches or symptoms. There are many joys…you just need to choose wisely what it is that matters and is important to you. Sure…these joys won’t mean anything significant to a person who does not have Hydrocephalus…and that’s OK.
When asked the question “How do you cope? How do you do it?” My answer is simple. I smile and say “Through faith” and I mean that with my whole heart. I have failed many times and without hesitation prayed for my life to end because the pain is just too bad. It didn’t matter at that moment that I bargained with God before, to allow me to see my daughter’s wedding day and know that my kids are grown and that I’ve raised them to the best of my ability. That they can stand on their own two feet and not be left without a mother at their young age. I’ve since realized that it’s not a matter of negotiating but a matter of trust.
In that too lies some joy for me. I get to spend another hour, day, week, a year with the people I love most in this world…my husband and kids. I know that it doesn’t always appear that way to them because I have more bad days than I care to have and my mood is foul. I fail them bitterly in this regard and wish with all my heart that I could change and not be that way with them…I would flip the switch if I could control it. I do try though…
I find joy in being thankful and say…