We share a common element that brings us all together. We have children who have PKU. We all can vividly remember what that phone call was like when we were told that our child had PKU. I will try to open my heart and pour out what it feels like to be a mother of a PKU child.
I remember the phone call as if it were yesterday; however, it has been 28 years since Doctor Roscoe and McLaughlin's office called me to tell me that my third born child, my only daughter, the first girl born into my former husband's family in 3 generations. Her blood work had come back from the lab and she tested positive for PKU. I was crushed my pretty little girl had something wrong with her. The words "PKU can cause mental retardation if not treated" still rings in my ears. I was breast feeding. I had to IMMEDIATELY stop. In those days you were not allowed to breast feed a PKU child. The next day we went to the PKU clinic in Philadelphia. I didn't sleep that night. And there were many more sleepless nights to follow. There were many nights when I cried myself to sleep. I use to think, Why me?
The diet days began: mixing that horrible smelling formula called Lofenalac, counting and measuring (there were no scales to use). The diet list consisted of about 10 pages of foods allowed. In those days nutrition labeling was not mandatory, so it was non existent. We counted kernels of corn, bugles, etc. Weighing was not an option. Why me?
I had no support from my former husband (that is a completely different story). I felt like my daughter's future intelligence was sitting in my hands, and what a big responsibility that was for someone to take on. I felt like I was carrying a huge weight on my shoulders. Why me?
My daughter has two older brothers who were not diet restricted. It was hard for a little girl to understand why her brothers could get ice cream from the ice cream man but she couldn't, and it was even harder for her mother to deal with. Those tears and sad eyes are still a memory I will never forget. There were so many things that she couldn't have, and she was too young to understand why. Why me?
I can't tell you how frustrating it was to take her to parties or family functions and have to tell everyone not to feed her, because she was too young to fend for herself. And then have to tell the whole story about PKU: what it is, why she has it, why I have to deal with it. Why me?
There were many times that I felt sorry for myself. I would wallow in pity, wondering why I had to carry this burden all by myself. I hated the words PKU and everything associated with it. I hated that people didn't understand. I hated that I had to take her out of day care because on the second day they messed up her diet. I hated that I had to tell her that she couldn't bear children of her own (that is what they told me to tell her back then). I hated the thoughts of her dating and having to tell her boyfriends that she couldn't have children (would they understand or break her heart and leave her high and dry?) I hated that I and my husband carried the ugly gene that gave my precious daughter her PKU. I hated that I couldn't leave her with a baby sitter because I couldn't trust anyone. Why me?
Jennifer was taken off the diet at age 5. That is what they did back then. The medical community said that at age 4 the brain is finished developing and PKU only did damage to the developing brain (found not to be true. . .). So at age 5 they were taken off diet. I remember that day very vividly. We stopped at McDonald's on the way home so she could eat a burger just like her brothers. I felt like someone had lifted that very heavy cross off my shoulders. It was a happy day. Little did I know it was the worst thing that could ever happen to my daughter.
After many problems (again, that is another story for another time) she returned to diet when she turned 20 years old. All I will say about that is that ALL of her problems were resolved within a couple of weeks after returning to diet. The years she was off diet were ugly. She had so many problems, but I never made the connection that they were because she wasn't on diet. I thought I was raising a difficult child. We had lost contact with our clinic because of a divorce and a few moves, so little did I know that she should have been back on diet.
Jennifer returned to diet and is maintaining excellent blood levels. When she returned to diet I thought to myself, I can't do this again, I just can't. So I said to her, You are a woman now. The first time you were on diet your brain was in my hands. This time you have the responsibility in your hands. She can do with it what she wants, but she has chosen to take the responsibility seriously. And that when she does. I am so proud of her because she is so good at it, and is so driven and so focused. I give her so much credit. Dieting is so hard! I have been battling with weight and just can't stay focused or dedicated like she does.
So why me? Because God wanted me to have a Jennifer in my life and he felt that I could handle it. And I guess I did because she has grown up to be a beautiful woman with high ideals. I am so proud of her, of who she is, and what she stands for; a woman so motivated, so courageous, so driven, so talented, so smart and so caring. If I had it to do all over again, I wouldn't change a thing!
It took me a long time to feel good about PKU. There were always so many negative feelings. But when Jennifer was about 3 years old we moved into a neighborhood where a neighbor had 2 children with Muscular Dystrophy. I became very close to that family. It was sad because they knew that their children wouldn't live much past age 18. That mother watched her children become crippled. She watched them not be able to breathe anymore. She watched them not be able to roll over in bed by themselves. And she watched them die. She used to say to me, You are so lucky. I wish there was a diet that my boys could follow that would stop this from happening. It was then that I realized that I was VERY lucky . . . and I stopped saying, Why me? And now I thank God for what he has blessed me with.