|Me at 3 months old|
Beth stopped eating at 5:30 a.m. and by 1:30 p.m. I was calling doctors. Talked with Dr. S* and he said she probably had indigestion. For some reason, perhaps because I feared an ear infection or because Beth had even stopped sucking, I called the Hanscom Clinic and they said bring her in.
People tell me that I'm a good mother. When they do, I smile and nod and say thanks, but I don't really believe them. Why? Because I had a great mother. I compare myself to her. She was a military wife. (Military wives are tough cookies. They are alone a lot. And they live in fear that their husbands will never come home.) She took care of me, my sister, and my brother. She read to us and played with us. The house was always clean. We had home-cooked meals and snacks (I didn't know what a Twinkie was until high school). She drove us to music lessons and swim practices and doctors appointments...
After checking her out, Dr. H called the pediatrician to come in. After he checked her out they took an X-ray and thought something was the matter with her intestines so they sent us to Emerson Hospital. There, after a Barium X-ray, they discovered a tumor and we were sent to Mass. General.
I never really noticed what my mother did...until I became a mother myself. She made motherhood look easy. Every single time I have taken either of my children to a doctor's appointment--whether it was just for a routine check-up, for an MRI, for an EEG, or for surgery--I think of my mother. I think, "If she did this, with a potentially dying baby, I can too. My child is not dying. He does not have cancer."
We were admitted Sunday at Mass. General and Monday and Tuesday Beth had an Ultrasound IVP (Intravenous Pyelogram) X-ray. (It checks kidney function.) She was scheduled for surgery Wednesday at 2 p.m. and after starving her from 5 a.m. they cancelled surgery at 2:30 p.m. and we got to do it all over again on Thursday. I thought I would keel over. She was finally operated on from 4-6 p.m. and they found a neuroblastoma (cancer) in the retrorectal area. It had pushed aside her rectum (inability to have normal bowels) and in a few more days she wouldn't have been able to urinate.
She must have been tired. I'm sure she was lonely a lot. We moved every 2-3 years, so it must have been hard for her to make friends. Yet, I don't remember hearing her complain. Maybe she complained to others--but she didn't take it out on her kids. We were her priority. She taught us that possessions and material things were not important. A house is just a house. As long as you have your family with you, you can live anywhere. And we did. We once lived in an Air Force Base hotel in Massachusetts for over a month.
June 25th, 1978
We can't get over the change in Beth since the operation. Of course, she is a month older, so that contributes to her abilities to smile a whole lot, to learn to laugh, to kicking her feet, and generally being happier. She is "talking" a lot, too.
She had her check-up June 20th with both doctors and everything appears normal. She has only gained 6 ounces since May 16th, but she grew almost 2 inches. The doctor said she was constipated for about a month...so she had lots of discomfort, gas, cramps, etc. and that contributed to her being so fussy. I wish we could have discovered her problem sooner. The poor kid has been through a lot.
This whole thing makes one realize the fragility of life.
My life has turned out to be much different than my mother's.
I'm not a military wife. My family has lived in the same house for almost 8 years.
We live in a small town where everybody knows each other.
Instead of music lessons and swim practices, my days revolve around therapy schedules, IEP meetings, and trying to get my child to eat.
My house is never clean.
And frozen pizza and chicken nuggets are a staple in my house. Home-cooked meals are rare.
The only traces of what she has been through is the bald hair around her head from being tied down for 5 days in the hospital and her scar. She is also small (4 1/2 months old and weighs 12 lbs).
Her brother is scared of being left now and afraid of having a tumor or Beth getting another one. Poor kid--he understands but not enough to forget about his fears.
After my cancer scare, I was a relatively healthy kid. But does one ever really recover from a scare like that? I doubt it. Cancer is Cancer. When your child has a brush with death, or health problems of any kind, it changes things. It changes you. Nothing is ever taken for granted again. I never thought I'd be able to say that autism and cancer have any similarities. But they do. They make you cherish the little things in life.
Mom, this post is for you. I'm sorry if I took you for granted as a kid. I never realized how much you did--how much you continue to do for everyone you love. Happy Mother's Day.
*Names have been changed to protect the privacy of doctors.