Ilustration by Jennifer Yanok
It’s funny how unexpected changes in life can set you on a course into the unknown. It turns out that how you deal with those changes determines how your life will end up. Like many of today’s graduating seniors, my life as a fourth-year in 1989 was full of endless opportunities; nothing bad had ever happened to me.
I was in a sorority. I was a cheerleader. I wasn’t rich, but that was fine. I loved the small classes and the beautiful campus. The cocoon of USD left me certain that I would continue on this road toward my own perfect life, or at the very least, a normal one.
After graduation, I got a good job and began my career. I soon met a great guy, got married, and gave birth to our first daughter, Paige. In 1997, we had another happy and healthy daughter named Laina. Things were wonderful; I’d kept most of my college friends, and they were getting married and having kids too. We were all in this together.
Everything was great until — between the ages of 2 and 3 —Laina started to lose speech and her fine motor skills decreased. When she gradually stopped talking, that was the first indication we had that something was wrong. Friends said that Paige was talking for her and the doctor said that this wasn’t uncommon among younger siblings. But when Laina started getting the words “Mommy” and “Daddy” mixed up, that felt really wrong to us, and the doctors agreed.
After a year of searching for an answer — a search that included three neurologists, an MRI, an EKG and several blood tests — we found out that Laina had Rett Syndrome. It is a neurological disorder on the autism spectrum that affects the X chromosome, and is seen almost exclusively in girls. I was distraught, to say the least. We found out that not only was she never going to speak again, but that she could lose her ability to walk, develop seizures, have repetitive hand movements and irregular breathing.
Rett Syndrome affects about one in every 20,000 female births in the United States. Nothing, not even a college degree from USD, could have prepared me to deal with this. For a time, nothing could break me from my despair. I kept asking, “Why me?” Just seeing other children younger than Laina talking and playing normally made me feel ill inside.
During that time, my husband and I tried everything we could possibly think of to try and “fix” our precious little girl. We tried prescription drugs, occupational therapy, physical therapy, speech therapy and a gluten-free/casein-free diet.
We even tried unconventional therapies; in one, a doctor from India told me to rub the back of her neck in a circular motion and that in three months she would be fine. As much as I hate to admit it, I actually bought into that one. I was a desperate mom willing to believe anything, I suppose.
I don’t think there was any one thing that helped me through that time. Certainly faith and a special needs support group helped, and there were some old friends from college who really stepped up to the plate and were there for us. But when I think about it, time is what has really healed me. That, and choosing to look at the situation differently.
My daughter’s diagnosis was a life-changing experience for all of us, and my own life has turned out far different from what I expected when I graduated from USD. I finally decided that it didn’t have to be all negative;
I just needed to look at it in a different light.
Laina is 8 now and a beautiful little girl. She communicates in her own special way, and although she has many challenges to face, she is still one of the happiest kids I know. I don’t know of any other child who will happily go in the car on errands, eat anything that you give her without complaining, give you hugs and kisses all day long, and never whine in a toy store. (The truth is, if she pays attention to a toy for longer than a minute, I buy it for her.)
We are going to enjoy every minute of her life, and have promised to provide her with a comfortable home and a life full of interesting adventures.
This child has taught me the meaning of unconditional love. The girls with Rett are nicknamed “silent angels.” I’m very proud to say that I have one.