Cook for Love is a non-for-profit dedicated to the PKU community. Our mission is to empower members of our community to improve their health through cooking and education. Our goal is to dispel the myth that, given severe dietary restrictions, people on low protein diets must settle for less.
Cook for Love evolved out of sheer stubbornness (the Irish in us). As moms, we refused to accept that our children had to eat foods that we did not find palatable. Providing nourishment is one of the most basic responsibilities of any parent. The stakes are just so much higher and the road so much more complicated when your child is diagnosed with PKU. When we received that devastating phone call, we too were lost and did not know where to begin. The kitchen seemed like a good place to start. Cooking for a person is an expression of love. Never is that statement more true when your child’s ability to reach their potential is dependent upon the foods they eat.
Cook for Love is committed to creating low protein foods that taste delicious. We struggled in our kitchens when our children were diagnosed with PKU and by sharing our recipes we wish to help you avoid some of the frustration we experienced. We provide step by step instructions and videos for making meals and treats that you and your loved ones will truly enjoy.
Whether you love to cook or are doing it solely out of love, please join us as we share new recipes and our experiences.
When we first held Molly in our arms, my husband and I became a family. She looked just like the Gerber baby – chubby and the picture of health – and we were walking on air. Six days later we fell, and fell hard. We received a phone call from the Inherited Metabolic Disease Clinic at Westchester Medical Center. Molly’s newborn screening tests had indicated that there was a problem, and we needed to come in right away. It was a Friday afternoon before a holiday weekend, but someone, we were told, would be waiting for us – never a good sign. We were told that our baby had phenylketonuria (PKU), a rare genetic metabolic disorder, and that Molly would need to be on a medically restricted diet for life – or she would suffer brain damage. Our world came crashing down. Our daughter’s neurological integrity was at risk and what she ate (or did not eat) would greatly determine her future.
Like all parents of newly-diagnosed infants with PKU, I struggled to figure out what to feed Molly. I was taught how to carefully measure and calculate Molly’s phenylalanine intake on a daily basis. What no one taught me was how to cook for her. Books, articles and professionals all recommended introducing low protein foods early so a child could develop a taste for them – but did this mean Molly was condemned to eat foods that I would not find palatable? I looked into my baby’s eyes and promised her that PKU was not going to get in the way of her enjoyment of food. I soon realized that this promise meant that I had to take on a job I never expected (and, honestly, one for which I was not qualified): personal chef.
In the beginning, I had nothing to show for hours worth of labor except for a kitchen that was in a constant state of disaster. I had no room to put another pot on the counter, a child screaming from hunger and nothing for dinner. I cannot begin to tell you how many times my husband came home from work to find me sitting on the kitchen floor in tears. He would quietly do the dishes, put Molly to bed and pour me a glass of wine (definitely a keeper).
I bought every kitchen gadget ever known to man (after all, you never know when a two year-old might need a pizelle or a pierogi). If the television was on and it was not Sesame Street, it was a cooking show. Cookbooks and culinary magazines were my version of light reading. I became fascinated with the science behind baking. I thought if I could understand the “how” and “why,” it would help me in adapting recipes to suit Molly’s low-protein diet. After years of fiddling, hundreds of attempts and thousands of tears of frustration, I finally started to experience success.
While pleased with the progress that I made, I knew it could go further. I recognized that I needed the expertise of others. I enrolled in the Chef Training Program at the Natural Gourmet Institute for Health and Culinary Arts in New York City, one of the only vegetarian-based culinary schools in the United States. Our final ‘graduation’ project was a Friday Night Dinner, where the school converted into a restaurant that seated about one hundred people for dinner. We prepared a four-course gourmet vegetarian meal, and I adapted it for the PKU diet. As I stood in front of all of the diners and saw my daughter’s smile, I realized I could finally get up from that long, hard fall caused by a few drops of blood on a sheet of paper and a dreaded phone call. I had gained the skills and confidence I needed. I had let go of the resentment that I had at always being stuck in the kitchen, and re-established the love of cooking I once had. But most importantly, I honored my promise to my baby girl.
I still work every day to further my promise to Molly. But now that I have gotten this far, it is time to take what I have learned and help an underserved population experience the joy of food – a joy that most are able to take for granted. The organization is called Cook for Love, because as a parent of a child with PKU, that is what you must do.
Positive – This is the word that started the amazing rollercoaster ride that finds me here today on Cook for Love.
I experienced every positive emotion the day Liam was born. Love. Joy. Awe. Hope. I experienced every one of them when I looked into his eyes for the first time, held him close to my heart for the first time, and felt his breath whisper across my cheek for the first time.
Then ten days later, that one word from the doctor’s lips triggered so many negative emotions. Grief, fear, shock all followed the positive diagnosis of PKU. The doctor explained how my dreams must change. There would be no glass of milk with a chocolate chip cookie to dunk. No hotdogs shared with dad at the little league games. There would be no milkshake with two straws to share with his first girlfriend. No cold pizza for breakfast in college.
I wanted to silence that doctor. I didn’t want to hear what I would have to do. I was tired and recovering from childbirth so I wanted to feed my crying child and go home. But I couldn’t. I was intimidated sitting in that room full of medical personnel, clutching a crying child, a canister of low protein formula, and carefully worded instructions on how to manage this daunting task. I felt the dream was gone and in its sudden void a nightmare had begun.
In the following months and years Liam’s levels soared then plummeted and control seemed so far away. The worst days were the ones that I felt all alone. His smile and his chuckle were the only beacons of light on these very darkest of days.
I persevered and baked bread (I still haven’t solved the mystery of the Great Exploding Bread). I melted bottles trying to sterilize them and burned out more than one blender. My kitchen often looked like a bomb hit it and I looked like I barely survived the impact.
The moments that stand out on this PKU journey are the ones where I attempted to feed Liam. He gagged when he saw the rest of the family eat, and fought with a desperation that inspired panic in me when he saw his high chair. How could I control his levels when he wasn’t eating his food or drinking his formula? Only another mother of a child with PKU could really understand my fear. Everyone else could sympathize but they couldn’t truly understand.
When he was eighteen months old our clinic referred us to Early Intervention Services where I met Brenda. (Yes, that Brenda. Isn’t it ironic?) She was the speech and feeding therapist in our area and she told me what no mother wants to hear. This wasn’t typical behavior. Liam wasn’t eating at an eighteen month level. He would need professional help to overcome these feeding problems. Then she told me what I needed to hear. This was not my fault and that with help Liam would be able to overcome these issues. I accepted then that I could love Liam and love him well. However, I needed to know that I could feed him because, for me, that was the most basic expression of my love.
Eventually I began to experience success and when Brenda went to culinary school we became her test market. When I saw a smile light up Liam’s face then I truly felt that I had cemented my role as his mother. Liam now enjoys low protein choc chip cookies (though his favorite is snickerdoodles) with a glass of Rice Dream. Like most growing boys his age he devours pizza; his just happens to be low protein.
Life continues to improve from those first difficult years. Liam has grown into a wonderful person and I’m extremely proud of him. He has overcome every challenge and has such strength of character. I’m proud to say I survived also. The nightmare is over and the dreams are back in place.
Cook for Love is one of those dreams. By creating Cook for Love with Brenda I hope you’ll allow us into your lives, your kitchens and your hearts. I hope we can help you whether you are beginning this journey, or your babies have babies of their own. I hope that Cook for Love can be the girlfriend you turn to when the bread explodes, the sauce is runny, or the levels are high and you need more calories and less phe. Whether you need support or just practical advice, we’ve been there and we want to help.
Cook for Love is an invaluable kitchen tool to help in low protein cooking. It’s as important as the scale or the blender – and one of the perks of needing a blender to make formula is that it’s also handy for making frozen margaritas!
Bon Appétit and Welcome to Cook for Love!