Today is Connor's first birthday, so I thought I'd share my insights, what I've learned, and how I'm dealing with PKU.
Connor is a beautiful and extremely bright baby. He is far ahead of his brother at this age, and is growing normally. When I first heard the diagnosis of PKU, I was so worried Connor wouldn't be "okay." I cried for weeks. Now I know that Connor is more than okay; he is thriving.
I no longer look at my son anymore with the thought of PKU coming to my mind first. When I look at him now, I just see my beautiful and easy-going son. Yes, he has PKU, but this is only a small part of who he is.
If you have a newly diagnosed baby and are new to this world of PKU, ask your clinic to give you names of other parents to talk to. I spoke with two moms within the first 3 months of Connor's life. It was the best thing I ever did. They put me at ease, shared their story with me, and helped me believe that everything was going to be okay.
Get involved. We live in a state (Wisconsin) where formula and some food is provided by the state. Others are not so lucky. However, with budget constraints, nothing is guaranteed forever. Share your story with your legislators, get involved in your state organization if there is one, meet with PKU adults, learn your rights. You are the best advocate for your child.
I've learned a new "normal." I now carry a pocket scale in the diaper bag, a smaller version of the food list, and lots of snacks. I spend one night a week cooking meals for Connor and freezing them in individual portions. The first thing I do after picking up Connor from daycare is figure out how much more phe he needs for the day. Ask your favorite restaurants about preparing low-protein food. So far, I have only had one restaurant refuse to cook low protein pasta for me. These things are a part of my routine now: this is my "normal."
I always remind myself that no, this journey will not be easy. But I am blessed. I have a beautiful boy who will have every opportunity available to him in life. His PKU will not slow him down, and it will not slow me down. Yes, I worry. I worry about what he'll eat on his Prom night, or when he's at a business luncheon as an adult, or if kids will be mean to him because he's different. But, I also know that his PKU will give him compassion, an appreciation for diversity, and an inner strength. Because of his PKU, he will develop many gifts that he wouldn't otherwise have. This will be his mark on the world.
Most of all, during this past year, I've learned to put my worries and fears aside and celebrate my baby. He will only be little for so long. In him, I have so much to be thankful for.