here’s a little background info…
In 2011, my husband and I began the process of adopting our precious daughter, Abiella. Prior to meeting her, we knew her medical report read “Cerebral Palsy and Microcephaly”, but the wide spectrum of symptoms and abilities that correlate with these diagnoses meant the majority of her needs were still unknown and undocumented. Our adoption coordinator explained that most of Abi’s needs, including any additional diagnosis, would remain a mystery until she was home with a family who was advocating for her medical care. Three weeks after inquiring about Abiella, we were on our way overseas, eager to meet her for the first time.
Abi was in a large government orphanage and we were never allowed beyond the office doors. So every day of our first trip Sean and I would take a taxi to the orphanage, let the staff know we were there, and then go take our “assigned places” in the plastic chairs under a tree in the parking lot. Before long, we would see a caregiver walk outside with our tiny bundle of joy wrapped in blankets . We would eagerly hop up and go grab her, and then for hours we would sit there rocking her, memorizing her every feature, and telling her about the life waiting for her. Her room, her dogs, her family. We would sing and laugh and just be together. No phones, no tv, just the three of us under a tree in the middle of a land that felt so very foreign. It was an intense way to begin parenthood, but when I look back on it, it was some of the most sacred spaces of our lives.
After a week of observing her reaction to us and her environment, we felt that she was partially (if not completely) blind and deaf. She did not move her limbs much, had zero head and neck control, and other than touch, she responded very little to any outside stimuli. There was one moment, however, near the end of our trip that a car parked next to us and when the driver slammed his door Abi jumped. Sean and I looked at each other and cheered. She could hear something! It was a big moment.
Despite any of the challenges, however, Abi was exceptionally happy. She loved being held and when you rubbed her head she would light up in the most beautiful smile. If you look back on those first videos, there’s a lot of Abi smiling and Sean and I absolutely bursting.
The adoption journey was intense and complicated but after three challenging trips to Ghana, a million and a half on-your-knees-begging prayers, a few Class-A Miracles, and one excruciatingly long year, she came home.
The first few months were spent in and out of the hospital and our vocabulary was soon infiltrated with words like feeding tubes, medicines, aspiration, joey pumps, ng tubes, diastat, swallow studies, EEG’s, EKG’s, splints, braces, AFO’s, medical formula, wheelchairs, and so much more. We kept our heads down and moved towards the target of “as healthy as possible” with vengeance. As good nutrition finally flooded her tiny frame, her hearing improved drastically and her ability to track objects strengthened as well. She wasn’t blind or deaf! Our precious Abiella (who came home weighing 14 pounds at 2 years old) was getting stronger every day.
In an effort to shield Abi from a desperately bad flu season, I found myself locked in the house with drive-thru windows and afternoons spent driving long country roads as my only access to the outside world. There was one time I stepped out onto the back porch and realized I hadn’t had a breath of fresh air in nine days. NINE DAYS. While we were so very, very happy- the days were spent tending to the fight at hand and the nights were spent sinking into the sleep deprivation that threatened to swallow us whole.
Around this time our adoption social worker came for her last visit. At the end of the visit she asked me, “Have you connected with any other families in your situation?” “My exact situation? No.”
I knew this was a necessity but it was at the very bottom of my list. Truthfully, I didn’t know how badly I needed it. All I knew was the idea of finding a “parent’s group” let alone attending a meeting felt totally out of the question to my already exhausted and introverted spirit.
On that day, however, I took a step in that direction and asked her “Do YOU know anybody who looks like our family?” “Actually, Yes. It’s a family that goes to my church. I’ll give them your number if that’s okay.”
I didn’t think much of it. I was very happy to know this family was out there but my mind was elsewhere. We were packing up our house and moving to a county with better resources for Abi and more room for our family of three.
The next day my Facebook account “dinged” and I looked to find a message from the woman our social worker had spoken of. Here name was Alison. I can still see myself sinking into the couch and feeling my lungs opening up a little wider. Her family DID look like mine. Feeding tubes, adoption, wheelchairs, everything. And you know what else? She knew my husband! They had connected through Sean’s music years earlier and one of his songs was even in their adoption video. Let me repeat that: One of his songs was even in their adoption video. The connections were crazy. The next day I spent an HOUR on the phone with her. G-tubes! Walkers! Physical Therapy! I had a place to talk about all that had been happening in the confines of our tiny flu-season-sheltered home. She got it! She understood! And beyond that, they were living life and thriving. She was super honest about the challenges (one thing I strive to do on this site) but she was simultaneously joyful and at peace.
The story continues- but the point is, this connection helped skyrocket me into a world where special needs was the norm, not the exception. I was no longer the only person in the room giving my daughter a snack through her g-tube.
Since then so much more has happened. I’ve made friends with people in many different situations and I’ve plugged into a community that is wide spread, generous, and brave. I’ve found friends online (or they found me- thank God!) that have been my saving grace in the wee hours of seizure scares and emotional challenges. Some of these friends even adopted their daughters from the same region we did. These connections are powerful and I can’t imagine my life without them. Actually, I can. I think there would be a lot of lonely and scary moments.
Today, we live in a community where Abi is thriving. Little did I know when I was packing up those boxes that I was moving to a home only 10 miles from my new friend Alison’s house!
Alison introduced us to equine therapy and now our girls even ride horses at the same place every week! My world has been opened to the amazing community of physical therapy, special education, occupational therapy, speech therapy, and even FEEDING therapy (who knew?). It’s been an incredible joy to get to know this community and the amazing fury within it. My daughter and I spend all week getting to see the people we love while working on our skills in a “play” format, riding horses, and even going to school.
Prior to my journey into parenthood, I was a middle school teacher. I loved every second of it. During that time I got my Master’s in Curriculum, Instruction, and Assessment and prior to Abi coming home I had started working on my Doctorate in the same field. After Abi came home I took a break from school. I needed time to assimilate to life as a new mother and an even newer nurse. After we were settled in the new house and Abi was in preschool I decided to go back and finish my doctorate. At this point, however, my passions had shifted. I was still interested in curriculum, but wanted to apply that knowledge to my new heart for special education. So I took a deep breath, switched my degree- which meant switching schools- and started over. IT WAS SO WORTH IT. I’m continuing in that journey even as I type this. My coursework is done, my comp exams are over, and I’m now in the final stages of my dissertation. (Deep breath.)
To conclude- Yes, Abi is in a wheelchair. Yes, Abi is on a feeding tube. Yes, we have 170 appointments on the books (seriously… that’s the real number…special needs mamas you know what I’m talking about) and Yes, Abi is considered ‘non-verbal’ but MY GOSH we are happy. We are thriving. The hard times are hard but the joyous times are infinitely richer than I ever knew possible.