‘There was no sugar-coating it. Her brain was bleeding. We we warned, ‘She may end up blind, deaf, or mute.’: Daughter born with hydrocephalus, ‘I find joy in every single second’

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“I always dreamed of being a mother. I met my husband in high school, marrying after he graduated from Marine Corps boot camp in 2004. In April of 2004, our oldest son, James, was born. A year later in May of 2005, we had our second son, Shawn Jr. Just a few months later, we discovered we were pretty far along with our third pregnancy and a sweet little girl was on her way! On April 14th, 2006, at 29 weeks’ gestation, Michelle came into the world screaming, weighing 3 pounds 1 ounce with the most amazing red hair you can imagine. Being premature, we knew she had a fight ahead of her. I just never imagine how her fight would reshape us as a family and as individuals.

Courtesy of Tara
Courtesy of Tara

Here we were with three kids under three! It was crazy to think about. We were shuffling from the hospital 45 minutes away and home with two toddlers who couldn’t meet their sister yet. We updated family on her progress and just tried to settle in. Michelle was about a week old when we were invited to a meeting with the NICU staff. In that meeting, we were met with the neonatologist, neurologist, social worker, case manager, and nursing supervisor. The moment we walked in, I could feel the air. It was heavy, as were all of their faces. Her brain was bleeding, more so on the left than the right. We were warned she could be blind, deaf, mute, in a vegetative state, and suffer from seizures — if she made it through the next 48 hours. The even more pressing concern was her head circumference was rapidly growing and they wanted to take some fluid off by doing a lumbar puncture to see if it would make a difference. There was no comfort or sugar-coating in what they were saying, Michelle was in for a battle and we were going to be by her side fighting with her.

Courtesy of Tara

My husband, Shawn, and I left the hospital that day and made the long, silent drive home. We visited her every single day. Talking to her. Caring for her. The nurses showed us how to take her temperature, change her diaper, measure her head, and even weigh her. They encouraged us to bond with her as the days turned into weeks and it was obvious she was not giving up. The morning she turned 20 days old, our life turned upside down again for the third time in a month. There was another battle she needed to overcome. Her brain was severely under pressure. She needed immediate brain surgery. I can remember every word the pediatric neurosurgeon said to me that day. I remember the looks on the nurses faces when we arrived at the hospital. I remember the darkness that took over that day. It felt as though I was being suffocated. I couldn’t breathe. I couldn’t think. I remember dialing the phone number to my husband’s command to get a message to him I needed him to get to the hospital as fast as possible. I remember screaming at the Marine on the phone he needed to stop asking me questions and just needed to find him.

It took three days after she got back from surgery before we could hold her again. It was another week before they came to us and told us before she went home, she would need a shunt. She had hydrocephalus, an abnormal accumulation of spinal fluid within the ventricles of her brain, and the only treatment options available came through the form of brain surgery. She needed to make it to 5 pounds in order to get one placed. The thought of a second brain surgery was overwhelming, but we were there to support her in whatever it took. She was fighting, we were still fighting with her.

Courtesy of Tara

I found strength in social media as it has evolved over the years. Joining support groups on these conditions. Learning from other parents and those going through things first-hand. Building friendships all over. Researching on the internet at all hours of the day and night to know every single thing I can and asking her providers for clarification on the conditions. For the longest time, I carried around a notebook filled with information and questions as I wrote it all down, never missing a single thought or concern.

As the years have gone on and Michelle finally left the NICU, she learned how to smile, track items, roll over, sit, walk with assistance, and talk. Everything they warned us she probably wouldn’t do. She was the easiest baby. Content to be held, fed, changed, and just loved. That reigns true today. The years haven’t been easy on her. She is able to ambulate with a wheelchair, walk assisted in a walker, even ride an adaptive bike.

Courtesy of Tara
Courtesy of Tara

She’s faced infections in her brain due to surgical complications. She’s had over 100 brain surgeries. Her hydrocephalus has been the one thing that has been the most difficult challenge for her, and us. It’s robbed her of normalcy, time with friends and family, siblings’ birthdays spent in the hospital, holidays missed with family and friends. It’s weakened her body so much after surgeries or infections, it has taken her months and years to get her strength back. It’s caused irreversible damage when the pressure builds and isn’t released quickly enough when the shunt malfunctions. It’s left me sitting alone in a waiting room in the middle of the night after signing consent forms for emergency brain surgery, not knowing how she was going to be when she made it out. If she made it out. I’ve also sat in the waiting room with friends and family there to offer their support and felt more alone than I could ever explain. I have literally sobbed on the shoulders of nurses and stood silent and stone-faced as words are spoken to me. It’s left neurosurgeons confused on the correct course of surgery for her and them making recommendations to see other surgeons within the field.

We have traveled to other states, even moving our family 1200 miles for what would be the 5th opinion. We have had discussions on the best non-surgical and surgical approaches.

The close calls she has had over the course of the last couple of years have challenged us. They’ve lit a fire that cannot be extinguished, making it where ‘we don’t know’ is no longer an answer. It’s also caused us to pause. A stop and smell the roses. Feel the sun on your skin. Breathe the fresh air in kind of pause.

Courtesy of Tara
Courtesy of Tara

I have watched the pain across all of our faces as we watch as a family the struggles. We have deployments for Shawn to other countries, friends moving away who are now family. We have had hospital stays where the nurses and doctors become friends. I have watched them feel the pain and joy associated with caring for such an amazing girl. They have encouraged and educated me along the way. I have watched her siblings encourage, push, cheer her on. Even her younger siblings as we expanded our family. Where the pain has been etched across our faces as we fight for her, there is so much joy. There is laughter. There is love. There is kindness.

Courtesy of Tara

When I became a mother and wife, I never imagined it would be the way it is today. I never imagined being a strong advocate. I never imagined I would need to research and question everything to become their expert. I never imagined learning about hydrocephalus, cerebral palsy, epilepsy, adrenal insufficiency, or a brain aneurysm. I never imagined my two oldest sons would be the fierce protectors that they are. The kids fight and argue just like siblings do. But they also have a bond that cannot be replicated. As sisters, Michelle and Abigail have such a difficult time being separated. FaceTime helps to give them the communication they both crave so much, and Hunter joins right in to make us all laugh. But nothing replaces the physical connection. I never imagined my husbands and my relationship could be closer, yet here we are 15 years later, closer than ever.

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It’s been a different life than I imagined for myself and my family. I get told regularly people don’t know how I do it. But when it’s your child’s life, you do not get a choice. I will always be there for all of them. Holding their hand when they need me. Reminding them we can all do this. No one ever looks forward to the next hospital stay, but we prepare for it. It’s always there in the back of our minds. We live our life with our family prepared for the next one. Because there will be a next one. We just hope and pray we get longer together at home.

I feel differently about things which have happened throughout the years. In the moment, there is confusion and anger. A kind of ominous cloud hangs over your head and follows you around. Watching doctors resuscitate and stabilize your child for hours will make that cloud hover. But when their eyes meet yours and you can see beyond the dark cloud, the outlook is different. It’s almost brighter. Because there is a new meaning behind all of this you never could have imagined.

Courtesy of Tara

I see the light at every struggle. I see the strength they all need from me. I see the constant love and support from family and friends. I see the sacrifices my husband makes to care for our other children so I can stay by Michelle’s side at all times. I see it all. I feel it all. The emotion when my kids’ faces light up when we come home. The worry in the text messages when they ask where I am when they don’t see my car and Michelle isn’t home. I feel the pain. I feel the anger. I feel the confusion. I feel the defeat. But I see the light because I know it’s there. My journey with my faith at times is tested but I know even when I waiver, God is listening to me and helping me along our journey in life.

My life as a mother is far different than most, and it’s okay. I find joy and love and strength in every single second.”

Courtesy of Tara

This story was submitted to Love What Matters by Tara. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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