The hardest period of my life was definitely the first three years following Virginia’s birth. I was still in shock, the wound was fresh, and Virginia’s brain injury left her completely miserable. But the most difficult aspect was the uncertainty over her future. I agonized constantly about how smart she was going to be. About whether she would eventually learn to sit up, walk, or talk. Every appointment with one of our therapists or doctors was like an emotional roller coaster because I was desperate for information. I hung on every word they said, good or bad, and would replay the conversations over and over again in my mind. It was very difficult to see other babies out in public because I compared them to Virginia. One Saturday when Virginia was about five months old, I ran into the pool store to buy chlorine. I saw a baby in his car seat carrier and he was lifting his head up off the back of the seat.
“How old is your baby?” I asked the mother, anxiety slowly taking hold of my heart in anticipation of her answer.
“About three months,” she said.
“He’s really cute,” I somehow managed to blurt out before walking away, devastated and on the verge of tears.
I left the store without the chlorine and ran back to the car where Findley and Virginia waited. Virginia wasn’t holding her head up yet- not even close. Even once my mother’s heart realized something was definitely wrong (when she was only six weeks old), I was still hopeful that the effects of her injury would be mild. Every time I saw a child who was developing normally, fear would rise up inside of me and own the day.
From a physical standpoint, Virginia’s outcome is about as bad as it could have been. We are just weeks from her seventh birthday and many of my fears have been realized. Virginia can’t talk, walk, chew, or use her hands at all. We went to Pittsburgh in 2006 to see a neurosurgeon who is an expert in the field of dystonia and he said, “I have never seen a patient with so much involvement in her mouth and arms. She is one of the most severe cases I have ever treated.”
The irony is that I am in a much better place now than I was during the first three years of her life. It doesn’t make sense to me because at least then, I had hope. I had hope that Virginia’s cerebral palsy wasn’t going to be this debilitating. Now I face the reality of its severity every single day.
But what I have now that I didn’t have then is the knowledge that God will give us the strength to handle whatever comes our way. Over the last six years, we have been through trials I never dreamed possible and what I have realized is that fear of the unknown is much worse than the reality. I don’t compare Virginia to children her age anymore. I know the differences are vast. But I am free to love her for who she is and I now know with certainty that our family will have joy regardless.
As much as I theoretically embrace the need to quit worrying, I am clearly a slow learner. I struggle greatly with the application of what I have learned. My biggest hope for Virginia’s future is communication. I desperately want her to be able to tell me how she feels and what she needs. I want her to be able to tell her own story one day. When things aren’t progressing well with speech therapy (which focuses on learning to use a speech device), I tend to get overcome with anxiety.
“Findley, what if she can never communicate? What if things don’t ever progress past this point?” I whine.
“Well, even if things don’t ever get any better, she has a great life,” he reminds me. “Ninety-nine times out of a hundred, we can figure out what she wants. Even if things stay exactly the same, we are ok. We really are.”
It is hard to admit that the toughest part of my life is still the anxiety I have over my children’s lives, but it is. And that anxiety is not just isolated to Virginia. Do I pay enough attention to Wills? Am I too hard on him? Will Eliza feel like she has to take care of Virginia? Will she feel guilty participating in things Virginia can’t be a part of? And, the monster question always lurking in my mind, will my children love the Lord all the days of their lives or will something cause them to turn their backs on Him?
The amazing thing is- and I really do believe this is true- I have the power to get rid of the toughest thing in my life. No, I can’t heal Virginia or trade places with her, but I can learn to let go of all the fears in my life. Most of my them won’t materialize, but even if they do, God will give me the strength I need to handle them, just like He has with Virginia. Whatever hardships lie ahead for my family can’t possibly be as bad as I imagine them to be. Can you imagine what your life would feel like free from worry? Honestly, I really can’t, but I am going to try to move in that direction.
*None of these pictures are related to the post. Just thought they were worth sharing!