I have a few more hydro mom blogs I've been saving in my back pocket. Even though it's not National Hydrocephalus Awareness month anymore, it's still so neat to hear these lady's beautiful stories.
Meet Lindsey of Musings of a Hydro Mom. Lindsey blogs about her family and adorable little Marlena. I love her openness and honesty about some really tough subjects (see the last question in this interview, it will make you cry). I also love her heart for advocacy and spreading awareness. And her Hats for Hydro are such a great idea and are so cute!
Tell us about your family. If your child has multiple diagnosis, feel free to share them.
I have a family of four, including myself, husband of ten years, and two beautiful children. Vincent is my rambunctious two-year-old and Marlena is my sweet 9-month-old girl living with congenital hydrocephalus.
Tell us about the moment you were told your child had hydrocephalus.
We never heard the word "hydrocephalus" from a doctor on our diagnosis day. We were sent home with the words "massive ventriculomegaly." We were able to see a maternal-fetal-medicine specialist on the same day, which was supposed to be a routine, uneventful fetal anatomy scan at our OB's office, which to me was only being performed to know the sex of my perfectly healthy child. I was oblivious to the fact that it was really being done to seek out flaws in our baby. I just wasn't prepared to be called back into a back room. What the doctor said it a blur. "Concerns. The baby's brain," to which I replied, "Should I be crying right now?" The seriousness still hadn't hit me. I just wasn't grasping it. I wanted a name for what was wrong. The OB couldn't tell me his thoughts, but on the order for our level II ultrasound, were scribbled the words "possible holoprosencephaly." Holoprosencephaly, or HPE, is a condition where the two hemispheres of the brain fails to separate to some degree if not completely. Marlena was found to not have this diagnosis a couple months later via fetal MRI. We were offered termination of our pregnancy the very same day of our level II ultrasound. After I went home, I began researching "massive ventriculomegaly" on the internet. I found support that very same night when I found pictures of many smiling faces of happy children living with hydrocephalus.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
Of course there are therapy appointments and neurosurgery follow-ups that weren't there as my son went through infancy, but the appointments become routine quickly. The only thing I haven't been able to completely shake is the constant anxiety of a shunt malfunction or sudden onset of seizure activity.
Share a moment when you were frustrated or discouraged
So far, pregnancy was the hardest part of our journey. There is just so much unknown. There are so many wide possibilities and so much fresh information. A moment when I discouraged was when I was told that it would probably be best to not have a baby shower until Marlena was born.
Share a moment when you found joy or hope
I felt such amazing joy in my heart when some girls at church threw Marlena a surprise baby shower just weeks before she was born. Their faith never waned.
What do you do to keep your sanity? How do you take a break?
I love to crochet! The repetition is soothing and I just love being creative. I also love that Fall is just around the corner and taking a brisk walk is always good for a mind break.
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
Never lose hope. There is never a reason not to have hope!
I would strongly suggest they visit this website, created by Michelle Higgins:
How do you deal with difficult questions from onlookers?
I stay open minded. Marlena's head is different, but I've become so used to it, I don't usually realize how different it is until she's next to a baby with an averagely sized head. Living with hydrocephalus definitely shapes a new version of what's "normal" to you, and possibly not so "normal" to others. If someone asked me about Marlena, I would be more than happy to explain what she has and how it affects our family.
What is one thing you wish families with typical situations realized about families dealing with special needs?
Children with special needs aren't so different than children without special needs. They are loved, fought for, and kissed goodnight just like any child should be.
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
I absolutely love Cherokee, NC during the middle of Fall.
What is your child's favorite toy/therapy tool?
Marlena's favorite toy is her wipes case! Closed, of course, but the particular brand we usually buy is encased in a crinkly plastic. She loves to hear the crinkling noise.
What is your favorite coffee (or coffee alternative) drink?
I personally love a Dunkin Donuts Caramel Iced Latte, no sugar, with whip.
Tell us about Hats for Hydro
Hats For Hydro is something that I'm just now trying to lift off the ground! My goal is to provide every little one facing hydrocephalus at birth a cozy crocheted hat. One of the most noticeable side effects of fetal hydrocephalus is often, but not always, an enlarged head size. Often times, there aren't any baby hats that will fit a newborn with hydrocephalus. I wish to change that for all of our miracles. I was inspired by a pretty pink knit hat in our NICU that stretched around my darling 36 wk newborn's 42 cm nogging.
One theme on your blog is "divine appointments". You had a major turning point during your pregnancy where you went from considering terminating your pregnancy to wholeheartedly wanting to sustain it. Can you tell us about that decision process? Tell us about the moment that changed your mind.
The worst three days of my pregnancy were the three days that I contemplated termination. I was a hypocrite. It went against everything I always proclaimed. The decision really does feel a lot different when it directly concerns your personal real life matters. I felt like a murderer by thinking about it, even though I hadn't yet allowed anyone to harm my child. I asked many questions on our diagnosis day. "Will she be able to walk? Talk? Form relationships?" The answer to all of my questions was, "I don't know." Except for one. "Will she have any chance to have a normal life?" The answer to this one was, "No."
During the night of that third day, I was driving back to my mom's house to pick up Vincent after dropping my husband off to work. I was having such a hard time. I was so lost, in such absolute despair. I saw a church with a lot of cars. I was crying hysterically when I drove up, parked my car, and walked up to the doors where some men were in a group talking. They looked at me, with concerned expressions, and escorted me inside. Tears still stained my face incessantly, one after the other, as if they were racing gravity to get down my face. I was hurting. I was alone. I was crushed. My baby, who we thought for those euphoric fifteen minutes in the waiting room was perfectly healthy, was sick. Her future was uncertain.
I found peace that night, as a woman took me into a room alone. She took both of my hands into both of her hands. As I continued to explain what was going on with my baby's brain, she stopped me mid-sentence and said, "Sweetie, that's called hydrocephalus. I'm a nurse." I was a little bit shocked. Looking back, I view this meeting as a divine appointment. I looked up to her, in the most girlish, painstakingly hoarse voice, "If I abort this baby, is that murder?" She paused for a moment and said,
"God breathed life into your baby."
I felt like these words were being spoken through her by Jesus himself. The conviction in her soft, pleasant voice when she spoke this sentence flowed into my soul. I didn't just hear these words, I felt them. She took me into the main area of the church where they were having a special guest speaker that night. I cried the rest of the night, holding both hands on my big belly, praying for a miracle. My family was pretty angry with me after I got home, because I didn't exactly tell anyone where I was or what I was doing. I just had to go. I had to find out more about the only One I had to turn to. Now I know that He is real. Miracles are still happening. Jesus is still working through people to help us. I am so, so thankful.