What feels like many moons ago, Brandon and I went to the same small high school as our Mom Next Door, Ashlee and her fiance Josh. So we've known each other for a long time, but never more closely than the February of 2012 when Ashlee and I both had daughters. Ashlee's daughter, Taylor was born just two weeks before our Gemma and for reasons only the universe could possibly understand, our Gemma was born healthy and mostly worry-free...while Ashlee's 'Miss Tay' was born with hydrocephalus; a condition that allows excessive cerebrospinal fluid to build up causing harmful widening of the ventricles and pressure to the brain.
As a Mom, I know that Ashlee has surely endured more sleepless nights, more worry and stress than I have over the last two and a half years as we have each watched our daughters grow and learn. And despite the difference in our daughters' physical health, we have also simultaneously celebrated our girls' milestones, quirky and funny personalities, and terrible two's. We are mothering our two year old girls parallel each other but also travelling on two very different paths.
September is Hydrocephalus Awareness month, so I am so honored and happy to be able to introduce you this week to Ashlee and her family, including the brave and indomitable Miss Tay.
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Who are you? My name is Ashlee, and I'm 32 years old and I live in Johnstown PA. I am currently engaged to Josh and we, collectively, have 4 amazing kiddos. Brennan is 13, Chance is 10, Elliana is 7 and Miss Tay is 2. We also have a cat named Flynn, a dog we call Hank (or anything that rhymes with Hank lol) and a Box Turtle who goes by Bowser.
What do you do for work? I have been a stay home mama for the large majority of the last 13 years. Very recently though, I decided to try to have the best of both worlds and I became an Independent Beauty Consultant with Mary Kay. I get to be home whenever I want, or whenever I'm needed....and I get to get out and "hang with the girls" and make some extra money when it fits my schedule.
I also maintain a public facebook page where I keep people updated about our daughter, Taylor, who was born with severe hydrocephalus. www.facebook.com/prayfortayurban. and bring awareness to other families who are fighting and living the same battle.
What was the most difficult Mom moment you've had (so far)? Definitely being told that our unborn baby 'wouldn't live and if she did she would be unable to do anything, even breathe on her own.' Despite the news, we knew we would still continue with the pregnancy, and so then came the preparation for our other children of the possibility of them having a very sick sibling.
Which chore is your least favorite? Laundry, by far. With 6 people in a house...including a toddler and a teenager it just never ever ever ends. Ever.
Taylor was, after our initial diagnosis of "no brain, no hope", diagnosed with hydrocephalus. Hydrocephalus is also known as 'water on the brain', and is a lifelong condition where cerebrospinal fluid has no way to exit the ventricles of the brain. They swell and cause the brain to be pushed against the skull, which can cause numerous complications.
The most common way to treat Hydrocephalus is the placement of a shunt; a siphon-like device that drains the fluid from the ventricles of the brain in the peritoneal cavity where it is reabsorbed by the body. Taylor had her first shunt placed when she was 1 day old and had a revision at 2 months old. Since then we have been very lucky, as shunts have the highest failure rate of every other medically implanted device. We joyfully celebrated our 2 year "shuntiversary" in April!!
What would your pre-mom self be surprised to know about motherhood? Everything. Really, I thought that the vast amounts of babysitting I had done had me ready to be a mom - boy was I wrong! Even just in terms of the emotional side of it! It's not a thing you can comprehend until you become a mom. Also, I should note...pre-mom me would never ever wipe someones snotty nose on a shirt cuff (in a pinch) and just roll it down like nothing ever happened!
What keeps you up at night? Fear of seizures and fear of shunt malfunction. The fact that either can happen with literally no warning whatsoever keeps me awake long after I should be asleep just listening to Taylor breathe and praying we have one more day without either surprise.
What big projects, worries, or events have you busy right now? Summer in general keeps us busy; football and cheerleading is starting up and that's always a crazy time of year. Also, we are trying to find the time and money to renovate our attic so we can move the boys up there for their bedrooms and finally get Taylor out of our bedroom and into her own. We've been working on this awhile now and are finally making bits of headway.
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| a recent overnight EEG |
How do you unwind or re-charge? Unwind? Recharge? What are these things you speak of? :-) Really though, mostly I read. I try crafts, but find I don't have the time or money to dedicate to the really cool things I "pin." An occasional night out with Josh, or with the girls does wonders too...when its possible.
What do you feel like you wish you were better at being a mom? I wish I was more fun....sometimes I really need to stop and remember that cleaning can wait!
What has become (at least for now) your parenting mantra or guiding principle? Enjoy this day; this moment, because you can't ever have it back. Only God knows what tomorrow will bring.
Please take time in honor of Hydrocephalus Awareness Month to learn more about Hydrocephalus and how you can help by visiting www.hydroangelsoveramerica.org and at www.fetalhydrocephalus.com
Remarkable! God bless Ashlee, Josh, Tay and their entire family! Their love for one another is so evident and each of them are blessed by experiencing the real meaning of love: the desire and ability to care for one another.
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