“My husband, Jeff, and I had been married almost three years before our first child. We always wanted to be parents and finally found the ‘right’ time. When we welcomed our first daughter, Kenley, in 2014, she was more than we had hoped for. Her sister, Blake, came a short 17 months later in 2015. She was as perfect as her older sister but always so calm and sweet. Blake quickly acquired the nickname ‘Blakey,’ as we all affectionately called her. Life was hectic back then with a newborn and a toddler but it was good. It was a blissful and easy time before everything changed.
It didn’t take long for us to notice Blake’s muscle strength challenges. She was unable to hold her head independently. We mentioned our concern to her pediatrician. Her response was a light, ‘She just needs more practice. I’ll see you in 2 months.’ After searching and demanding for what felt like an eternity, we were told when Blake was nearly 6 months old she had a disease called Spinal Muscular Atrophy (SMA). Due to her age and lack of reaching milestones, she had SMA Type I, which is the most severe.
We heard the words no parent ever wants to hear: terminal. No treatment, no cure.
Our world shattered and hearts completely broken.
Why her? How did this happen? Why did this happen? What do we do? How do we live? The questions never ended. We were terrified and completely lost. Our job was to protect her and we couldn’t.
Weeks later, we knew we had to get up and keep on living for our daughters. There were so many tears shed as we slowly made the conscious choice to find joy where we could. Our little family of four did everything we could think of: parks, beaches, camping, parties, trips. You name it, we tried to find a way to do it. We learned to live a life full of love and laughter while carrying fear and heartache.
I remember spending countless nights wide awake with Blakey laying in my arms. I would stare at her for hours and hours. Some of the time, I watched her out of fear she would suddenly stop breathing. Most of the time, I stared at her because she was beautiful and perfect. The house was quiet and it was just us. I know we were meant to be together, she and I. I could feel it then and I feel it now. None of it was easy but it was amazing.
Blake died one week shy of 11 months old in her daddy’s arms at the park while listening to music. I am forever thankful for Blakey’s life and the time we got with her. She gave me courage, strength, and kindness I didn’t know could exist in me. Blake taught me to fight to spend the rest of my life living the way she would want, loving my people hard, spreading kindness where I can, and enjoying today instead of looking towards tomorrow. I learned from her how to be a better mom to my children. To her, Jeff and I vowed to love without limits and make her proud. We will never stop telling anyone and everyone about her spirit, love, and all that sunshine she radiated every single day.
After Blake’s death, there is a solid period of time I really don’t remember. I went through the motions of the day to care for Kenley and try to remember to breathe. Losing my child destroyed me. It destroyed my husband. I felt like I was underwater, constantly fighting to reach the surface but there wasn’t one. If you’ve been there, you understand the emptiness and the darkness. Without the support of my parents and siblings, I sincerely don’t know what we would’ve done.
Just 6 weeks after Blake’s death, we were very shocked to find out I was pregnant. There are some who may consider getting pregnant reckless. To those I would say, you have no idea. I was constantly terrified we would lose that baby while I was still just trying to function. At 10 weeks along, we were able to get a test that confirmed our third daughter, Ayla was unaffected by SMA. She was born 11 months, to the day, after losing her sister. They have opposite personalities but look so much alike. Her middle name is Blake, after the strongest girl we know.
Almost a year later on a sleepless night, I had been scrolling through Instagram. I came upon a post about adoption and for whatever reason, felt compelled to read it. It wasn’t long before I fell into a whole section on foster care. That night, I stayed up reading and watching videos. It was then I discovered the horror that is an immense need vulnerable children have for a safe home. I literally thought to myself, ‘I can’t not do something.’ After many long talks and research, we decided to get our foster license. We would offer our family to a child who needed us along with support for their family (when safe to do so). We would, hopefully, help a child get back home.
After a 4 month process, we became licensed on a Friday. As many new foster parents can attest, we had no idea how things would happen or what we were in for. It was an email saying, ‘Congratulations, you are licensed.’ And then we waited. Monday came, which was Blake’s third birthday. We stayed together as a family that day to remember and honor our girl.
On Tuesday, I got a call from a social worker. ‘Hi, Stephanie, how are you doing today?’
‘I’m doing okay, how are you?’
She said, ‘Well, I’m doing alright. I have a baby. We are looking for a long term placement for her. Most likely an adoptive home. We don’t know much at this point….’
‘A baby?’ I said. ‘Wow. Okay. A girl you said? How old did you say she was?’
‘She is one day old.’
I took a big deep breath. ‘So, she was born yesterday?’
‘Yes, she was born on Monday, the 17th.’
The conversation ended with me telling her I would call my husband and call her back. I cried when he answered and gave tiny bits of information. I told him she was born the day before, on Blakey’s birthday, ‘Wait, what? Are you serious? Well, let’s go get her!’
That day, we got to meet our fourth gorgeous daughter, Everly Joy. She seemed so tiny at nearly 3 pounds lighter than my firstborn. I snuggled her up and got to feed her right away. It took just over a year to finalize her adoption but we are so thankful she got to stay. Today this girl is FULL of spunk, curiosity, and so much joy. It’s been a learning curve but we’ve had eight little boys come and go since we met Everly.
Someone once asked if Everly sharing Blake’s birthday makes me feel better or lessens the pain of her absence. Everly could never replace her sister, of course. It doesn’t work that way. I do believe she has a special connection to her big sister and somehow we were meant to meet. I know without loving fully and being open, because of Blake, I wouldn’t have met her littlest sister.
My life as a mother, my family, does not look close to what I pictured. I never thought I’d be grieving my child forever. I never imagined being a foster parent or adopting a child born to someone else. There were days I thought I could not and would not survive. Through that, I never forget my promises to Blake. Love sustains us through the unbearable. Being able to love all of my children, and their daddy, every moment is my greatest blessing. I am the luckiest mama to four perfect girls, one I carry in my heart. Today and every day, I am so damn proud to call them mine.
Deep down you know what matters. Embrace that, hold on to it, and never ever let it go.”
This story was submitted to Love What Matters by Stephanie Reid. Follow their journey on Instagram here. 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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