Alright y’all this is a long time coming. About 2 years ago, I sat down and made a list of things I want my special needs kid to know. That list turned into research and that research led to chapters. I played with the title and landed for a while on “Raising Jack in a world of Johns.” I was pretty proud of that one because my oldest is named John but he goes by Jack and of course he is my
Here’s the deal. I want to encourage other parents who are raising special needs kids (or even kids who have endured loss or trauma, its own form of need) to consider certain truths as they shape the way their children process their stories and move forward. The second part of this deal is I’m tired of procrastinating and I don’t want to wait to publish another book to share those thoughts with you. I still don’t love the title, but I don’t want to wait to perfect that either. If you have a better one, I am always open to suggestions.
So here we go...
Introduction: Why do I get to Speak on the Topic of Raising Special Needs Kids
My goal in writing this is to encourage other parents who are on the journey of raising a special needs kid. I don’t have all of the answers, but I do have personal experience, professional experience, my faith, and access to good research as I navigate this road and share my insight. If you are going to take this journey with me, I think it is good for you to know a little about me and how landed where I am.
It was the late 80’s or early 90’s and I was a young teenager. I wish I could remember the exact date, but I can’t. What I do remember is that I was spending the week with my aunt because I was sick and my widower father had to work. My Aunt Mary is a saint and she stepped in to play a mothering role for me after the passing of my own mother when I was nine. I am confident that the seeds of my faith in Christ were planted in her home by her example and her teaching. She was the first example that I saw of someone investing in another child (me) and loving them as their own.
It is no surprise then that God placed His call on my life while I was resting in her home. I remember clearly that I was lying in bed and watching a documentary on the orphan crisis in Romania. I remember scenes of children sitting on the floor and splashing in their own urine. The journalist told of how the parentless children were lined up and then scanned to determine if they would be placed in a better orphanage or in an institution to live out their days. Those children who were clearly handicapped were separated out first to be institutionalized and then the line was scanned for anyone who had the slightest disability such as a lazy eye and then they too would join the others. I was in tears. In that moment, I told God that I wanted to give my life to serve children like that. I wanted to be a part of the solution, wherever that path took me. What I was seeing on that screen was NOT okay and even as a young kid, I knew that God was calling me to be a part of the solution.
I spent the next several years and the first semester of my time at Baylor University on the path to being a pediatrician. My plan was to go to medical school and then into foreign missions. One day when I was in the thick of hating Chemistry and the talks of managed care were fueling the uncertainty of physician futures, a friend recommended physical therapy. I have to confess that the initial hook was the realization that I could wear tennis shoes and comfortable pants to work every day. I am just keeping it real. My entire story is not one of heroism and faith but also has a little self-service worked in. I shadowed some pediatric PTs and knew that God was opening the next door for the promise that I had made Him so many years before.
Fast forward a few years that were lost in days of difficult classes and long nights in coffee houses and I was finally a licensed PT. As a bonus, I was also now married to a man who shared my faith and was willing to embrace my passions. I followed him to complete his schoolwork and practiced PT where the jobs were available. Don’t get me wrong; God opened some amazing doors during that time and never let me forget that when the season was right, He would open more doors to bring me back around to that promise. During those early years of marriage, Trent and I met a couple that had adopted a little girl from China. We wondered if this was the direction that the Lord was leading us in. When I was pregnant with my second son, Sam, I felt his tug on my heart that any future children would not come from my body but most certainly from overseas.
When Sam was old enough for us to qualify, Trent and I completed our dossier to adopt a special needs girl from China. We were matched with the most perfect little face that I had ever seen on a computer screen and we would go on to name her Ruthie after the verse in Ruth that says, “Where you go I will go. Where you stay I will stay. Your people will be my people and your God my God.” The Chinese diagnosed Ruthie with “both hands endoduction abnormality.” Needless to say, that was Chinese for, “Something isn’t right with her hands but we have no idea what it is.” Go ahead and Google “endoduction.” You will get that prompt that starts with, “Did you mean: …” With a little more research and the help of some American physicians, it appeared that she most likely had a condition called Arthrogryposis.
Finding out your are pregnant with a child with a special need and saying yes to adopting a child with a special needs start out as two very different emotional journeys. I say that because our story with Ruthie may not look like yours at the beginning. I never grieved Ruthie’s condition because I never hoped for anything different. Once Trent and I felt like we had a diagnosis, we were able to skip straight to preparation. That said, I still understand the grief and fear that you may have experienced as a first response if your special needs child is your biological kiddo.
While we were waiting to travel to China, my oldest son, who was four at the time, started standing up from the ground by walking his hands up his thighs or the wall. There is a name for that (unlike endoduction) and it is called a Gower’s Sign. It indicates muscular weakness and is most often the first sign of Muscular Dystrophy. We took him to Texas Children’s Neurology Clinic and they ran a battery of tests and came back with a diagnosis so rare that few had ever heard of it. Those of you with biological special needs kids will appreciate this next detail. Apparently I must have been hard to reach on the day his tests came back because the Neurologist called and left me voicemail that said that he wanted to let me know that my son’s tests had come back and he was diagnosed with an extremely rare condition called Hereditary Spastic Paraplegia which means that he is going to become a paraplegic and there is no treatment. So bio moms, I get it. We grieved for the unknown and the change in script that had been handed to us. We had one motion picture in our head for this child and suddenly there had been a rewrite that we did not get to vote on.
We now faced the reality that we were bringing home a child with special needs while one of our children already at home was progressing in a special need of his own. I believe this is the point when Trent and I really started the conversation on how we wanted to raise these kids and what we wanted them to know. Like you, we talked about our fears of how the world would treat them and how that would affect them emotionally. What we knew most to be true is that how they perceived themselves would be most influenced by how we perceived them and that had to be grounded in how the Lord viewed them. We would have to fight back competing motivations like fear, anger, hurry, and even sympathy.
In July of 2013, my passion for special needs kids overseas took me to Boaji, China to work with nannies in an orphanage there. My initial instruction was to offer training but, in God’s perfect timing, the agency that sent me received a large group of referrals on kids from that orphanage the day we arrived. They now needed me to evaluate those kids from a developmental standpoint so I could help advocate for their adoption when I returned. Most of the assigned children were in the toddler room. That is where I fell in love with the cutest dimples and sweetest smile that I had ever seen. That entire story, along with the medical challenges that followed, are detailed in my book, Conquering Mountains. To sum it up, 6 months after returning from that trip to China, I went back to adopt that dimple faced beauty. We named her Maggie and strapped in for the roller coaster that came next.
Maggie has a single ventricle and single atrium heart defect. In plain English, that means she has half of a heart. Three months after joining our family, Maggie had 2 massive strokes that made us long-term residents of Texas Children’s hospital (TCH). A year after she came home from the strokes, she had a single-stage Fontan procedure and suffered multiple complications which renewed our “lease” at TCH. She is thankfully stable now with just a handful of residual complications from her strokes and heart condition. Her life expectancy is unknown so we approach our days probably like most of the audience reading this. We cherish our moments with her, try as much as possible to slow down and appreciate the little things, give lots of grace for her behavior in light of the neurological component, and do our best to live by the motto, “You can’t put a price on a good time.” We adopted that phrase from my late cousin who loved life and unfortunately passed unexpectedly in his 30s. We don’t know how many days we will get with Maggie so we try to embrace and live each one we have to the fullest.
Finally, it turns out that while Jack is the first to be diagnosed (and at the time, the 16thperson in the nation with his diagnosis), he is not the first member of our family with HSP. Shortly after Jack’s diagnosis, we began recognizing the symptoms all around us. My father and my brother are both significantly affected by the condition too. My sister and I are carriers and will display the symptoms to a lesser degree as we age.
I share all of this because I want you to know that I approach this subject from myriad of directions. While I started this journey as a called and compassionate believer, I have now approached it as a pediatric physical therapist, a biological parent, an adoptive parent, a daughter, a sister, and a patient. I am some version of most of you and I would imagine that if you were sent here, you can see yourself in some part of my story. I am not just looking at disability but it is also looking back at me at every turn. Like you, I have hopes for my child as they encounter this world with the challenges that have been placed before them. Some of those hopes are motivated by Scripture, some are motivated by experience, and some are motivated by research. My plan is to outline that for you and give you some tangible framework for thought and application.
I see the world in layers and I tend to relate to it by digging deeper for greater understanding. In this book, I am hoping to flatten those layers and bring the foundation to the surface so we don’t just consider what we currently see but relate to the entire picture. If you are a photography junkie (like I am), you are appreciating my Photoshop illustration. 😀
So let’s get started…
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