It was a Tuesday.
Looking back now, I can see it was the first Tuesday of the rest of the rest of my life. On that day, when my daughter’s preschool teacher pulled me aside and said “I wonder if you had a few minutes to talk,” I would begin to understand that in my child, I did not have what I thought I had, and that my motherhood experience was not going to be what I thought it was going to be.
Before that day, I thought my almost-4-year-old daughter was just quirky. She was in speech therapy because she spoke half-English, half-jibberish, and she definitely had some social delays, but I chalked that up to extreme shyness combined with the speech delay. But after that talk with her teacher and a phone call to her speech therapist, who revealed that that results of her recently-completed testing were pretty dismal (“Her delays are significant,” she said, and that word significant bounced around and pounded the insides of both my brain and my heart, “She will need speech therapy for at least three to four years.”)
Three to four years. And here I was hoping that the 20 visits a year my insurance would pay for would be plenty.
I hung up the phone and cried. A lot. Did I mention that I was 7 months pregnant at the time? And that this occurred the day before my beloved Grandpa’s funeral? Best week ever. But as much as it pained me, I had to make the consequences of that Tuesday wait until Thursday, Because Wednesday, we had to bury my grandpa.
I sprung into action as soon as the funeral activities were done. A pediatrician visit and OT evaluation confirmed Sophie was terribly behind in both her fine and gross motor skills in addition to her communication and social delays. A wide range of emotions –headed up by guilt — washed over me as I realized my sweet, funny, feisty girl was more than two years behind in these areas. Why hadn’t I seen it? Well…possibly because she could already read many sight words at not quite four, knew all her letters and colors, and did a variety of other “school type” things well. I hadn’t realized the importance of all the things she couldn’t do.
So…we got busy. In addition to speech, Sophie started OT. I made a million and one phone calls to get her evaluated by our local public schools so she could go to special ed preschool and get speech and OT at school as well. She would go to a class with “typically developing” students as well as kids like her that had various delays. She started her new school just 10 days after she turned 4, about 6 weeks after that fateful Tuesday.
And then, we worked at home. Anything her speech language pathologist or occupational therapist told me to do, I’d do. I got a million books from the library, bought games and puzzles that would help her, and Pinterested the HECK out of her delays. Every day we had the brilliantly-named “Mommy-Sophie Time” where for 20-30 minutes, we’d work. Much to my surprise, Sophie LOVED it. Sometimes we did it twice a day. Our dining room quickly filled up with books, games and activities.
But it wasn’t all THAT simple. In-between helping Sophie, caring for my older child, being a wife, and cooking a new baby, I had quite a few breakdowns. We had evaluations for her that were painful. We sat across the table from professionals who told us a bunch of stuff about our kid that we did NOT want to hear (and some of it, thankfully, was dead wrong.) It was an overwhelming process, and it all happened VERY fast (thankfully, as my due date with my 3rd child approached).
But it was HARD.
One day when I couldn’t find a form I needed to get Sophie qualified for some service or the other, I just lost it. I LOST MY STUFF. I cried, I wailed, I KEENED. “Why is Mommy crying so much?” my 6-year-old asked. “Because Sophie’s having trouble learning, and that makes Mommy sad,” my husband tried to explain. I couldn’t tell my son the real reason: I was crying because I was terrified she couldn’t learn, and even more terrified that I couldn’t TEACH her. Because let me tell you, friends: I didn’t know how to do ANY of this. I was a communications major in college, not an education major. I barely knew what speech and occupational therapy WERE, much less how to do them at home. I had no idea how to teach kids, especially kids with learning troubles, and frankly, avoided most children that were not related to me.
I told my husband, “She should have a better mother. I don’t know how to do this.” I told my mom, “I don’t know how to give her what she needs.” Surely God had gotten something messed up here. How could I do right by my child?
My mother responded with a simple sentence that really sent me down the path I took next. She said, “Jenny, the Lord made her and the Lord is going to take care of her.” What she didn’t need to say is that the Lord gave her to ME to mother. To ME. And that surely had to be just one of the ways He was going to take care of this child.
So I ran with it.
But before I ran too far, I had a baby. My faithful mom (who happened to also be a preschool teacher) kept up the work with Sophie while I recovered from my C-section, but I was back at it within just a few days. Those days were a blur of nursing a newborn, little sleep, and working with Sophie on her speech and OT activities. After Christmas and then the New Year, I began to realize that Sophie was really improving. After about 3 months of hard work, we were seeing RESULTS.
So we kept up the work. It wasn’t always easy…Sophie is a stubborn girl and when there was an activity she didn’t want to do or was frustrated with, we would often both end up in tears. There was plenty of “stepping away” and coming back to it a few hours later. I drove her to speech, I drove her to OT, I drove her to preschool. In the summer, I drove her to a social skills group. My poor baby guy spent the first year of his life in my minivan and in waiting rooms, on behalf of his big sis.
Long story slightly shorter…Sophie came through these hard delays. Instead of three to four years of speech and occupational therapy, she graduated from both therapies in just 18 months. She went from severely delayed to totally caught up in all the ways.
It was a miracle, my friends.
A miracle that looked a LOT like hard work.
It was also the absolute HARDEST year and a half of my life—but I’d do it again and again if I had to. And here are three things I learned during our journey.
1. If God calls you to it, He will equip you for it.
Friends, I had no idea how to be a teacher, a speech therapist, or an occupational therapist at home. But I learned. God helped me to learn and even get good at it. He was NOT going to leave me hanging. He called me to be Sophie’s mom and helped me give her what she needed.
2. God knows what we need way better than we do.
Did I WANT a child with special needs? Nope. Did I NEED one? Yep. Because of Sophie’s delays, my heart became softened and my mind opened to the special needs and disability community. I am now active in advocating for and raising money for people with disabilities in our community because of all I experienced with Sophie, and I am also now aware of what an AMAZING and ESSENTIAL part of the kingdom of God people with disabilities are.
3. You are the expert on your own child.
Throughout my journey with Sophie, I had to attend and receive results from multiple kinds of testing and evaluations, some psychological, some medical. Sometimes professionals would try to tell me and my husband things about Sophie that we knew in our hearts and our GUTS were not true. Just wrong or misinterpreted results. In this situations we advocated for her, and we were proven right each time. Yes, she had deficits that I could see and admit, but I was also committed to making sure she was not misdiagnosed or labeled in an incorrect way.
That Tuesday was truly the first Tuesday of the rest of my life, but despite all the worry, red tape, and hard work that came after it, six years later I am beyond thankful for that day. Because my daughter is better for it…and so am I.