Reflections
My Chiari Story
If you’re wanting to learn even more about Chiari visit the sites below:
National Institute of Neurological Disorders and Stroke
Conquer Chiari
Mayo Clinic
“Vilomah" a name for parents whose child has passed away….
I am the mother to an angel. At the young age of 21, my husband and I lost our stillborn daughter. Her loss took us through the darkest periods of our life yet we are here, we don’t have all the answers but we have lived through the first few years of grief and am still making it day to day. My hope is that I can provide some little piece of comfort or support to another mom, another dad, another family member who finds themselves going through a difficult situation. We want our daughter to be remembered and we wanted to honor her memory by helping other families.
September is Chiari Malformation Awareness month, I'm taking a break from my "normal" posts to help spread awareness about chronic illnesses, especially Chiari Malformation. These invisible disorders are hard to cope with, hard to live with and unfortunately, are often ignored by the friends and family who should be there when they are most needed. A few months back, I wrote a post for Columbia City Moms Blog about my experience with living with a chronic disorder. In this post, I talk about the lessons I have learned along my journey, read the full story here. See past blog posts about my story:
Reflections My Chiari Story If you’re wanting to learn even more about Chiari visit the sites below: National Institute of Neurological Disorders and Stroke Conquer Chiari Mayo Clinic
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As a loss community, a family of parents united by the loss of infants who have left us too soon, one thing that can help to start the healing process is to share our stories. By sharing our stories, we connect with other families affected by loss, we bring awareness to our community and we honor our children each time we talk of them. Any time you'd like to share your story, know that you are welcome to share with me, with us here on this site, just email me and I'll help you with that.
Healing Grace Childbirth Services focuses on families like you, families in need of support. If we can help your family during a loss, please reach out. We're busy this month preparing for our second annual remembrance event on October 15th. See the event details here, if interested.
That's my short bit for today, but I before I sign off, I want to invite you to the giveaway below. I've teamed up with an absolutely wonderful group of bloggers to bring you today's giveaway celebrating the first "blogiversary" of Grace, Love Life. Take a look around her site and good luck! Grace, Love, Life's First Blogiversary GiveawayIn honor of Grace, Love, Life's first blogiversary I have teamed up with a few other amazing bloggers to give away an amazing prize package! We are giving away books, a journal, a coffee mug, and more! If you want to enter, all you have to do is fill out the entry form below. You can complete as many or as few of the tasks as you would like but the more that you enter the better your chances of winning will be! The giveaway will end on Friday, September 23 and the winner will be announced the following week. Please enter fairly. This giveaway is only open to USA entries only because I have to be able to afford to ship this to the winner!Grace, Love, Life - Craftivity Designs - Life.Love.Bittersweet Journey The Peculiar Treasure - The Accidental Country Girl - Avallon's Voice Here's what's Included:
First comes love, then comes marriage … but what happens when the baby carriage doesn’t come? Nearly a decade ago, I met my prince charming (or so he thinks!). We dated, fell in love, married and are living most of our time, happily ever after. Like most couples, right? Another masterpiece from yours truly! Read this short excerpt from my April post, "Love, Marriage, Waiting for My Baby Carriage." I talk about life's ups, downs, our journey through loss and what life has taught me in the process.
Read the entire post, here with the Columbia SC City Moms Blog. Life was good in the Pacific Northwest, my husband and I were just settling in from our cross country move after he was stationed there with the Navy. We lived on an island, found a cute house, I quickly found a job and things were good…that is, until the headaches began. After a nonstop two-week headache, I went home sick from work, barely able to drive. I realized something wasn’t right. The clinic diagnosed me with tension headaches, gave me some meds and sent me on my way. Nothing helped, nothing. A week later, I was back to see my doctor, practically begging for relief! My doctor was helpful, she listened and began sending me for a few tests. For nine months, I worked, dealt with daily headaches, and kept up appearances for friends and family. As the months went by, my overall health began to decline, I started having trouble sleeping, could barely walk and lost the ability to swallow without choking. Finally, nine months of testing had resulted in NO results. In late December, the doctor decided to try an MRI. I drove myself to the local hospital, hopeless that we’d find an answer from yet one more test. Sitting at home alone a few days after the MRI, a day before Christmas Eve, I got a call. “We’ve received your test results and you have Chiari Malformation, we’ll talk more at your next appointment but you’ll need surgery to get some relief….” I hung up the phone and quickly went to trusty Google to look up my new found diagnosis. What I found instantly had me in tears, I would need brain surgery, brain surgery is the surgery my doctor had mentioned. For months, my husband and I had downplayed my symptoms to family and friends (most of which were 2000 miles away) to keep them from worrying and now we were tasked with explaining why I’d need a brain surgery. I sat in my bedroom, nearly frozen from the call, I couldn’t find the words to tell my husband (who was on duty) about what I’d learned. Fast forward past a quite Christmas, I fought endlessly with the insurance to find a neurosurgeon. Five surgeons either didn’t know about Chiari or refused to take our military health insurance. My sixth try, we found a surgeon who not only accepted Tri-care but was also experienced with treating Chiari Malformation! I went in for my first surgery around Valentine’s Day. I remember this day because my husband brought me roses once I was in my room and he had to join mom and dad for a dinner since I was stuck in the hospital, but the cheesecake they brought me back, was the best I’d ever had! I spent three days in the hospital and then went home to recover. While still trying to recover, I had a CSF (cerebral spinal fluid) leak and needed the same surgery all over again. I had my second surgery, two brain surgeries in one year… I felt much better aside from the normal feeling of being hit by a truck. Immediately my problems with walking and swallowing improved. My headeaches were gone….for a short time!). Now, I’m not saying I don’t still suffer from my original list of symptoms, but the surgeries saved my life, they stopped the progression and eased a majority of my pain. I still have daily headaches, chronic fatigue and other problems, but I have my life and for that I am grateful. Coming up, a new post on What is Chiari? Stay tuned...
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Author:Just a girl, a wife, angel mother and friend... An infant loss parent, post menopausal 20 something year old and brain surgery survivor...I've been through alot and have a lot to share! Popular Posts
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