My sweet Hope is now 13 years old. She’s a funny, loving girl who constantly wants tickles and loves to hear stories. She adores her daddy, her mom and her brother. It’s not at all unusual for her to approach with a twinkle in her eye and yell, “Tickle me!” And then she runs in the other direction, hoping to be chased, while her giggles fill the air. Hope is a gift from heaven, and I see so much potential in her.
But when she was almost 2, I was terrified for her future. Hope had no words, zero. Her only communication was through crying. She didn’t respond to her name and she would not interact with us. I could walk up behind her, clap my hands and shout her name, and she would have no response. Nothing. Not a cry, not a laugh, not even a startle.
We wondered if she was deaf. We knew the chronic ear infections that had started at just 7 weeks of age could have taken a toll. And yet. She could hear the TV being turned on from any room in the house. And she could replicate tunes perfectly. A hearing test at 19 months confirmed that her hearing had not been damaged. So, we had to look for other answers.
Two days before she turned 2 years old, beautiful Hope was diagnosed with severe autism and our lives changed. Irrevocably and forever. Our dreams, our hopes, our 5 & 10 year plans were all out the window. And I was so very, very afraid for my girl. How could she have any kind of future when she was so locked away inside herself?
And thus began the first of many, many years of therapy. Behavioral therapy, occupational therapy, speech therapy, physical therapy, vitamin therapy. Diet changes. And then there were the many kinds of therapies doctors and others so helpfully recommended that weren’t covered by insurance and we couldn’t hope to afford. We should try music therapy, buy special squeezing beds, try intravaneous detoxing of heavy metals, swim with dolphins, try equestrian therapy. All of them prohibitively expensive, all of them sounding so promising. We had to pick and choose, and we couldn’t choose them all. And the question that haunted me for so many years: What if the one we rejected was the one that would have helped? What if that one could have made her better?
And then came the medical diagnoses. Because my sweet girl doesn’t just have to contend with autism. She also has gastrointestinal disease that has required several surgeries and daily interventions. 14 hospitalizations in just over 4 years to get this under control. There is the chronic pain that is a result of years of GI disease.
And now there is the Turner Syndrome. Praise God that my girl so far doesn’t have the heart, kidney, diabetes and bone density problems that come with this syndrome. Although, we will have to monitor her for this for the rest of her life. But the deformations of the ear canal and growth and hormone issues. Check.
It’s so easy to sometimes be overwhelmed with all that is wrong and all there is to monitor, to worry about, to grieve over. So believe me when I tell you that the miracle is that when I look at my daughter, I see joy. I thank God that she’s a part of our family, just as she is.
Do I understand why she has to suffer so much? No. I have no answer, and I have prayed and raged to God to heal her. To take away her daily pain. To give her words to express herself. It kills me a little each time I see her groaning with pain or coping with the ugliness of her illnesses. I truly would take it on myself in a moment if it would spare her. I’ve prayed and begged God to allow me to suffer instead of her, but still she is the one who suffers.
I don’t know why God allows little children to suffer, or why this is Hope’s path. But, I have to trust in his goodness and his perfect love. I have to believe that there is a purpose and that we are in his care. I see the small miracles and the way he’s held us all, even when the situation seems unbearable. I’m learning, slowly, to trust in God’s heart and to believe that he has a perfect love. And that my little sparrow, Hope, is not outside of his sight or care.
And on the days she feels well, that girl can slay with her smile. Her giggle could brighten any day. Is she a typical 13 year old? Oh no, not even close. Would I trade her? Never, ever. Hope has taught me more about life, love, uniqueness, compassion and my own prejudices and my own strengths.
The girl who wouldn’t respond to her name now comes running when I call. She constantly wants attention and her hugs are legendary. While she doesn’t have many words, she has some. She understands most. She tries harder than anyone I know. At anything I ask her to do. I am so much richer because I know her, and beyond blessed to call her my daughter. Every child is a miracle, but with some the miracle is just a little more apparent.