My name is Celeste, author and creator of Skyewaters, a pen name I chose when I decided to start this blog. I chose it because of this picture I had. See how the Angel looks as if she’s playing with water…?
It, together with the photo below, speaks to my soul…It encompasses so much of what I love in this world. God, Angels, the ocean and the sky (especially the night sky).
Here are some of the reasons why these mean so much to me:
- The night sky. When I was younger, I would sit outside and just marvel at the stars in the sky. I could get lost in them forever and imagine a happier life far away from this earth. You could call me a dreamer…
- The ocean. It resonates with me in so many ways, I just love the sight and smell of it. Beautiful, powerful and calming to my spirit…it’s the essence of me. I feel a close lingering affiliation whenever I am at its side.
- Angels. I love the thought of having a guardian Angel at my side. Nothing is more beautiful to me than knowing they have my back no matter what. Do I believe in them? Well, yes I do…my name means Heavenly coincidentally 🙂
- God (most important of all). I firmly believe in the existence of a higher being, the Trinity. Having been through what I have had to endure in my life, I don’t see how I can not. There is no way I would have been able to survive or come out of the times in my life, which have defined who and what I am, without Him. Ultimately, it has shaped and determined the purpose of my life.
Much of these experiences are shared on this website with you, my dear reader. My aim is for it to become my legacy…my mark on this world but more importantly, a place where my children can connect with me (long after I’ve gone).
I’m just an ordinary person with views, ideas and opinions on things that make this world go round. Expressing myself doesn’t always come easy but when it does, I write it down here. I have a husband, 3 kids and some lemons handed to me on the journey of life…Some have been surprisingly pleasant tasting (probably more of an orange) and others NOT!
At the age of 29, I was diagnosed with an incurable condition called Hydrocephalus. From this point forward, my life took on a new journey filled with many challenges but also new beginnings. It was also a point in my life, where my faith blossomed from one single flower to a garden of unending beauty. At times beautiful buds will blossom and other times, they will just wither away and die as the tides of emotions sweep over me and life happens. In the end, I stand strong with God as my helper.
Realising what a lonely world Hydrocephalus creates, feeling lost, confused and helpless, I wrote my book, Hydrocephalus: Floating Faithfully, with the aim of raising awareness. My intention is to update my story with a sequel to this book however, most of it is shared on this site.
I enjoy motivating people and making them feel good about themselves and life in general. When I see someone else affected positively by something I’ve said or written…Well, let’s just say, it nourishes my soul in return.
Have a read around…you might just find something you’ve been looking for.
Thanks for your time!
Celeste
Amanda
April 19, 2024 at 3:48 pmHi there, I just found you. I had a shunt failure and ETV three months ago. Recovery has been slower than expected and I’m still not 100% and not back at work yet. It’s such an odd condition!
Anonymous
April 19, 2024 at 7:52 amHello, it’s been a while since your last post, just wondering if everything is ok?
Anonymous
April 12, 2023 at 9:41 pmSkye you have made me feel that I am not so alone! Your beautiful posts and sayings are amazing! I love them so much, some of them I have saved on my camera roll, and some of them I have hanging on my walls! I LOVE following your pages! Thank you for all you do!
Skyewaters
April 12, 2023 at 10:55 pmThank you! That’s humbling to know.💙
Michael Robertson
February 16, 2023 at 11:37 pmMy name is Michael Robertson. I am 54 years old.I live with Hydrocephalus all my life. I work as a Legal Courier for 30 years & I am also a Public Speaker I join Toastmasters 10 years. I love my life
Skyewaters
February 16, 2023 at 11:40 pmHi Michael. Thanks for sharing💙
Michael Robertson
February 16, 2023 at 11:31 pmThey there all good comments
Lisa
December 3, 2021 at 2:47 pmI wrote this 6 years ago when I had 1 shiny.
I have accepted the debilitation of my condition is here to stay and I choose to live with it and embrace it and at times show it that I can outrun it but accept it and love it as it becomes a part of who I am for the rest of my time on earth. I will not beat it, it is not my adversary it is now part of me and some days will be diamonds and some days will be stones but on the stone days I will build structures that allow me to keep on and know that eventually the diamond days will be more frequent and the stone days are there just to remind me that no human is beyond suffering it is what one chooses to do with it that is going to define who I am going forward. I am perfect in myself and accepting of God’s plan for me.
I wrote this 2weeks ago. Now living with 4 Shunts.
6 years later my diamonds shine brighter and I now paint my stones and place them in my beautiful garden which has become my haven and a place to reflect when I need to push through the tougher times.
I remain blessed that I can continue living life to the best of my ability with 4 VP Shunts forming part of my everyday existence and although it remains a challenge how grateful am I that I am here, I am alive and I am loved and able to love in return.
My family and friends continue to be my pillars of strength and I thank God everyday for each and everyone of you. God has his plans and my life remains in his hands.
I will continue walking this journey knowing that my will to survive is stronger than giving up and that I am blessed to be exactly where I am right now in this moment.
Always remain positive that no matter what life throws at you that you can honestly say that you did your very best to live each day to it’s fullest.
Skyewaters
December 4, 2021 at 12:25 amThank you for sharing 💙
Lesli Chinnock Anderson
February 13, 2018 at 6:10 pmPerhaps we are something like soul sisters, Celeste. I wrote a book about my experiences with Hydrocephalus, and I will be starting a blog this year. I was diagnosed in 2006, at the age of 45 years. My website is http://www.lesliandersonbooks.com. We both have an affinity to water, but I live in Minnesota, so mine is freshwater and the Boundary Waters Canoe Area and our many lakes.
Skyewaters
February 13, 2018 at 7:50 pmThat may very well be Lesli?
Your journey sounds much like mine. Though I was diagnosed at age 29, also wrote a book and started this blog.
I would love to read your story and will visit your site.?
Marcy Marks
August 16, 2017 at 5:21 amI have had hydrocephalus since i was 3mths old.
Skyewaters
August 16, 2017 at 5:23 amHow old are you now and how have you been coping Marcy?
Bill Meyers
December 21, 2016 at 12:34 amHi Celeste… I’m Bill. I was directed to this page ::somehow::, 2 or 3 minutes ago. I was likely reading a post on a Hydro blog or something, but can’t recall, thanks to short-term memory loss. (My short-term memory has about a 10 second span, sometimes less than that.) ANYWAY, I wanted to say hello. I’m 55, and was born with Hydro in 1961, when plastic (nylon? whatever) shunts were just gaining popularity.) I’ve had 3 shunts, (my current shunt is a V.A., which has lasted 35 years now) as well as bilateral subdural hematomas at age 19, following placement of a VP shunt. Those hematomas eventually had an impact on my memory, so I was forced to retire in my late 30’s. (I was a Medicaid Med-Waiver provider, teaching living skills and social skills to developmentally disabled adults, and teens with behavior disorders.) When they began having to remind ::me:: of things, I called it quits and applied for SSDI, which I’ve lived on since then. The government pays for my Medicare and my drug plan, so I just pay a small co-pay of $2.50 per drug. I wanted to address the parents of young kids that have Hydro: I attended public school, graduated high school early, went to college at 17, living alone in an off-campus apartment 100 miles from home. I was able to do that because my parents ::never:: treated me as “disabled”, never made things “easy”, taught me to embrace life for what it had to offer, work my hardest, never give up, and to ::get back up:: if I got knocked down. Above all, taught me about God, who has carried me more times than I can count. (When I had the hematomas at age 19, I actually prayed for death, or to be cured… “God, either let me die, or get me better…” I was out of ICU in 5 days, home and ::driving:: in 10 days. I went on to marriage, career, (in the mental health industry), and homeowner. In my 30’s I took an IQ test, at the insistence of my Neurologist, and I scored in the “Superior” range. (It was a 2 day “Weschler Adult Intelligence Survey, Revised” test.) Not the most fun you can have in 2 days, but it gave me something I could bore people with. 😉 ANYWAY, if there are any parents out there with questions, feel free to ask and I’ll do my best to give you (or get you) an answer. Hydro is different for all of us. The more voices we have, explaining it to new parents, the better, in my opinion. We can relieve some of the worry that they have. “What will my kid be able to do?” “How will his life be different?” “How will she ever be able to get married?” Every parent has their own set of questions, and each of us with Hydro have a specialized set of answers. We should share those when we can. Sincerely, Bill Meyers (billwithmanycritters@gmail.com)
Skyewaters
December 21, 2016 at 3:48 amHi Bill.
Thanks for stopping by and sharing your story. I will most definitely keep your details. I fully agree that we should share, which is why I post my blogs.
I will e-mail you something a little later regarding addressing parents of young kids?
Duncan Salloway
July 2, 2016 at 10:39 pmI too am a Hydro survier 15 years ago I slipped on some ice 5 years latter I was diagnosed with Hydro, just prior to getting on a plane which would have killed me, I was lucky then 30 Brain Surguries latter I consider myself lucky almost everyday. I just wish the Dam headaches would go away.
Skyewaters
July 3, 2016 at 2:15 amHi Duncan
It sounds like it took a long time for your diagnosis to come through. I can’t even imagine having 30 surgeries but glad you were able to get through all of them. The headaches are no fun and I sure don’t wish them on anyone. I pray you get some relief and have more good days than bad.
Thanks for commenting.
Delray Williams
June 21, 2016 at 9:56 pmYou’re such an inspiration! Congratulations on your website and many blessings for the future.
admin
June 22, 2016 at 5:28 amThank you kindly Delray.
Mrs Minion
June 21, 2016 at 8:42 pmJust saw your recent post on the old blog and of course, I’m coming over here too!
admin
June 22, 2016 at 5:28 amAwesome! Thanks for the support 🙂
Jacinda Thomas
June 21, 2016 at 7:15 pmDearest Celeste.. I’m so proud of what you have achieved. You are a living witness with so many testimonies to share. I look forward to reading your blog. May it be a huge success. All the best.
admin
June 22, 2016 at 5:27 amThank you very much JT 🙂 I would love to take the credit but it’s not mine to take. There is only one who can be in control 😉
Bronwyn Daniels
June 21, 2016 at 7:07 pmCongrats Celeste so proud of you my sister by the law ??
admin
June 22, 2016 at 5:26 amThank you Bron
Denise Philander
June 21, 2016 at 12:54 pmCongrats, haven’t read all yet, but some thought provoking articles, keep it coming!
admin
June 22, 2016 at 5:25 amThanks Denise. I most definitely will do that 😉
Jennifer Adams
June 21, 2016 at 8:46 amBeautiful Celeste (Skyewaters)- So proud of you. All the best
admin
June 22, 2016 at 5:24 amThank you Jenny 🙂
Christine Cormack
December 19, 2015 at 2:00 amSkye, you are such a philosopher! Thank you for sharing your wise thoughts with us so eloquently. You’re right: life has handed us lemons, so the best we can do now is to make a lovely big jug of lemonade for hot days like we have now here in Queensland, Australia, some yummy lemon curd tarts, preserved lemons or whatever else takes your fancy. And enjoy the process, and the results!
skyewaters
December 19, 2015 at 2:51 amI love your comment Christine ? Thank you! I’ll be enjoying those hot days soon too…looking forward to it.
Andre Blaauw
October 25, 2015 at 6:31 pmThought provoking…
skyewaters
October 25, 2015 at 8:19 pmThanks for your comment Andre