My daughter turns 14 tomorrow. It was a little over 10 years ago that I put it in my head it would be the birthday I could finally put everything behind us. I would put in 10 years of really hard work and dedication, and 10 years later she would be better. She would enter high school like a regular kid. That’s what I really believed.
For the first few years, it definitely seemed that would be the case. After receiving the official diagnosis in February of 2005, I launched into warrior mode. I had already been researching for some time, so I was ready to go. We began treating her underlying, co-morbid medical conditions; hired private therapists; purchased technology that would help her communicate; and sought alternative therapy. You name it. We did it.
Within a year, our improvement was remarkable. She went from testing in the lowest 20th percentile of skills for her age to the 85th. She was so improved, in fact, that she was released from the Early Intervention program and mainstreamed into kindergarten without an aide.
I couldn’t believe how miraculous her improvement was and thought for sure if we could come that far that fast, there was no way we wouldn’t be 100% recovered by high school. I felt blessed and anxious. Now instead of worrying if she could get better, I worried she could retain it.
For two years, she seemed to only be on the up. I started to use the word “recovered” because to me, she was. The serious physical issues that had plagued her… constipation, eczema, insomnia, night terrors, seizures, the inability to speak, drooling, sound sensitivity, and repeated and chronic illness… had all resolved entirely. They weren’t just better. They were gone.
In their absence, her personality emerged. She began using imaginary play. She understood jokes and wanted to play with her siblings. At 5 years old, she finally asked her first “why” question. She even wanted to play with friends.
That said I wasn’t oblivious to the fact we still had some obstacles to overcome. Her gross and fine motor skills were still off. Her ability to understand complex abstract ideas was limited. Her conversation was also limited. Although she had no problem understanding receptive language, and although she could speak in full sentences, carrying on a conversation was challenging for her. It still is.
And then around the middle of first grade, the serious academic deficits began to appear. Eve could do wonderfully with concrete information. The “who”, “what” and “where” of any story wasn’t difficult. But as the “how” and “why” became the questions, she was lost. Her teacher recommended she participate in a resource reading class.
From there, her academic needs only became more intense. I thought I would die during second grade. Homework was taking us 2-3 hours per night. She would quickly forget skills she had just learned. Retaining complex information was challenging at best.
And slowly, as much as I didn’t want to admit it, I began to come to terms with the fact she might never get these skills back. Her brain swelling and damage occurred very early, beginning at 5 months of age. Perhaps no amount of therapy could ever fix that.
For the next few years, we took steps forward and back. At her 8th birthday, she had a sleepover with tons of little girls. All of them seemed to genuinely like her. They danced. They played. They giggled. I still remember it as one of the best days of my life. All of the fears I had for her, not fitting in, not having friends, not being included, seemed to be unfounded.
They stayed unfounded through fifth grade. Although she was now in more intense special education classes for her academic needs, she still had several good friends. She called them on the phone. She arranged play dates and sleepovers. And even though it was becoming obvious to me she was falling behind some of the little girls, there was at least one girl with whom she had a true bond.
They called each other daily. They went to church events together. They had sleepovers whenever they could. I was sad that some of her other friends had moved on without her, but I was grateful for that one good friend. That’s all that mattered.
And then that good friend moved away. Right before seventh grade, she left the state. It’s hard to put the devastation she and I both felt into words. I was truly angrier with God for that than for a whole host of other things. How could He do that to her? Take away her one true friend! I am still heartbroken over it.
It was also at that time I started to realize that 100% recovery before high school would be hard to come by. In junior high she became more separated from her peers academically. She was put in a class with an aide for everyone. For the first time, she had an aide! I was freaking out. How could this happen? How could we go so backwards?
The aide is no longer with her class, and I’m grateful for that. But something happened in the last two years that has me heartbroken all over again. Something changed. It feels like everyone stopped believing in her.
It seemed to happen right after the school asked us to stop having her participate in standardized testing. As a teacher, I understood why that was. She is a terrible test taker. Her scores were bringing the school down. They knew it. We knew it. And her tests really didn’t give us good information about her abilities anyway. I agreed to have her opt out.
But an unexpected side effect of that was the sudden feeling of no one really caring any more about her growth. Instead of school being so challenging, which it had always been, it now seemed like a past time. Homework was rare and not hard, busy work more than anything. She wasn’t being asked to read 20 minutes a night. We rarely had to study for tests.
It wasn’t in every class, or with every teacher, but it was with a lot of them. The school had given up on her. And I had basically given them permission to do so. Chalk up another tally in the “Bad Mom” column.
With the loss of her best friend and the discovery of Minecraft, I now have a child who would rather be on the computer all day than anywhere else. She loves her sister and her cousins dearly, but outside of them, she has few friends that she is ever interested in playing with. She hates to go outside, and in spite of the fact that we have purchased as much play equipment as we can to get our kids outside, she just isn’t interested. Getting her to do so is no less than a fight.
Everyday I am faced with the choice of forcing her to participate in the real world or allowing her to participate in the virtual one, in which interestingly, she has the most authentic, normal, natural communication I have ever heard from her. The part of her brain that seems to have over-compensated for the deficits in the others is her ability to do 3D spatial visualization. She has repeatedly tested superior in her ability to do this kind of work and design.
And so Minecraft is like heaven to her. She communicates with kids who can’t see her and enjoy the same thing she does; she feels safe and welcome there. Better, as she is building and creating these amazing things, she is feeling great about herself and finally feels good at something. Better than that, her speech comes completely naturally, as if because she is so immersed in the creativity of it, she doesn’t even realize she has to think about what to say.
This is our life 10 years later. It’s not what I thought it would be. It’s not what I hoped it would be for her. I see her former friends in the neighborhood in their fashionable outfits and carrying their phones and talking about boys, and I die a little bit at the thought of what she would have been like next to them.
I think about what she would have looked like if she cared about her own hairstyle, clothing, and makeup, which she does not. I wonder what her body would have been like if she hadn’t have developed hypotonia and had participated in dance, soccer, gymnastics, and sports these past 10 years like her younger sister. I wonder what clubs she would have been in and if she would have been in the gifted program like her sister.
And then I think about the future, the next 4 years, and how we were already handed a piece of paper with the local resources for transitioning her guardianship to us at age 18. Another school has already determined that will be the case.
And so now my next set of questions to answer includes: is that good enough for her? Are we doing enough? Did we do enough? What else can we do? And my least favorite…is 10 years enough?
Is it time to stop and just accept what is? Should we just be happy with how far we have come? Is it enough that we have this beautiful, loving, happy little girl who participates meaningfully in our lives…who can dress and care for herself… who isn’t sick anymore or in pain… who loves her cousins and her siblings dearly... who can talk…who may have to live with us forever, but who still may not?
Living with Eve the rest of my life is hardly a punishment. It’s just not what I ever wanted for her, especially when she asks me out of the blue about what it means to be a teenager, and why she’s not like other kids, and if she’ll ever go to college or drive. Those are moments no parent should have to have, I think.
I don’t have any answers yet. I’m still coming to terms with the fact tomorrow is a very bittersweet deadline, and perhaps more so, an important new beginning. I take comfort in the words of the spiritual therapist I met via Uber who asked me to consider she is here to teach the world… on a journey she was fully aware of choosing before she even took her first breath… one where she knew exactly what she was getting into for the expressed purpose of helping us all.
When I consider that, I find some peace. The unfairness of what this beautiful soul has been put through and what was taken from her is at times all encompassing, as is what was given back to her and all of us as a result of it. The dichotomy is a bit dizzying.
And so I’ll celebrate tomorrow as I always do, with a hopeful heart, a mind full of gratitude, and a spirit full of joy for this amazing kid in my life. I’ll make her a Minecraft cake and watch her happily blow out the candles with all of her family around. Then I’ll hold my breath as she opens her cards and gifts, and without any social filter for just politely smiling at something she didn’t want, watch her face tell her gift bearers exactly how she feels, good or bad, while I correct her rudeness and apologize for her.
And then later, after everyone has left, and maybe some cousins have stayed over and all fallen asleep, I will do what I did 10 years ago. I will sit in the quiet of a room with a piece of paper and a pen, and I will think about the next 10 years. I’ll write out some goals… driving, holding a job, maybe starting a business for her, making sure she has self-protection skills, where we’ll travel… and I will map out a way to make them happen to my best ability.
And then I’ll look at her picture next to my bed, my favorite one from 10 years ago, and I’ll say, “Happy Birthday, Eve Elizabeth. I love you with all my heart.”
And finally, I'll then turn out my light, fall asleep, and get up tomorrow to move forward and break down barriers for her once again. Ten years from now, thousands of dollars more, and countless hours more, I have no doubt that will still be the case.