The best gift you can give them

Over the years I have had a lot of people come up to me and ask me how I raised such well adjusted daughters with PKU who actually follow their diet. I have had clinicians ask me to talk with other parents to help give them a positive perspective and give them advise. Each time this happens I sit back and think about what I could have done to make them so well adjusted....I definitely was NOT a perfect parent. I made my fair share of mistakes (some days I felt like a complete failure as a mother, and there were even some days I cried myself to sleep at night when they were not around). That being said I know one of the best things I could have ever done for my daughters was to encourage independence in them. What does this mean? It means helping them learn how to manage their diet on their own from early on. I encouraged them to make their own formula/milk by the time they were 9 or 10 yrs old. I encouraged them to track their own food intake, making wise food choices, and even serving themselves their own food (yes, that means they measured and weighed their own foods).  
How did all of this start? It wasn’t an easy path, and it was one that I learned via experience. At first when Breanna (my oldest with PKU) was diagnosed I was so terrified I would screw something up. I met adults and teenagers with PKU who told me stories of how they fought with their parents or how their parents still made their formula and weighed and measured their food. I struggled with the path I needed to take because I wanted to have control so she would stay healthy, but I also didn’t want to have to make formula and weigh foods for my teenager/adult. At first, I weighed and measured everything, and second guessed everything that I did. Was it a good idea to introduce this food or that into her diet? Was it a good idea to allow my daughter to continue using a bottle or sippy cup? At times I drove myself (and probably my whole family insane). My husband always told me to relax a bit, but how could I when her health was so important?
I was so controlling, and when Breanna was little I fought with her over formula on a very regular basis. It was a power struggled. The doctor and dietitian gave me advise.....telling me to starve her until she drank her milk, or make her sit at the table until she finished. I had adults with PKU telling me to do the same. It was heartbreaking watching my daughter struggle with this. At times I hated myself for doing this. We spent many years being pretty darn miserable when it came to the subject of formula. Thankfully when we weren’t dealing with formula my little girl still loved me to pieces, and I her. But formula was another story. I would bargain, and beg, and plead with her. I would yell and holler, and threaten to punish......nothing worked until one day I made a huge realization. I wasn’t helping her by forcing her to do these things....instead I needed to teach her to do them herself. She wanted to have control, and that was what we were really fighting over. I knew then that I needed to teach her how to make her formula, make wise food choices, and track her own diet. Strangely enough, when I released some of the control and put it into her hands then suddenly everything changed. She was making her own milk and drinking it. She was choosing the foods she wanted to eat which meant making good and bad choices, and learning from her mistakes always with me watching over her and helping. This experience with her really opened my eyes and made me realize what needed to change when my next child with PKU was born. It made me think a lot more about how I needed to create independent children who would become independent adults.
When my next daughter with PKU was born right from the start.....from very young on I encouraged her to help me make her own formula. I encouraged her to help track her intake, and how to make wise choices. By the time she was 9 or 10 yrs old she was doing it all on her own.....making her own formula several times a day, and drinking it without me hounding, begging, pleading, or hollering. She even counting her phes (at the time we counted phes).
Then when our youngest with PKU came along I was very confident in what I needed to do. I rarely second guessed myself and right from the start I encouraged my daughter to help, and to make choices that were right for her. She is now 11 yrs old, and makes her formula 3-4 times a day all on her own, and takes her Kuvan on her own as well. Some days she has milk four times a day, and some days she has three cups of milk and a formula bar......she chooses what she wants to do on her own. We have an Alexa in our house and four times a day Alexa announces “Gena make your milk.” When she hears it she goes to make it. Once in awhile she doesn’t hear it, and I have to say “did you hear Alexa?” She immediately knows what that means, makes her milk and drinks. She also calculates her own protein intake (we are now doing the simplified diet), and she feels such pride in herself when her blood tests come back good. Again we never have to fight with her, and we have never had her sneak food that isn’t allowed on her diet. She is happy......I am happy, and our family is happy.
Over the years when I have told people about how I teach them to make their milk on their own early I often get a lot of questions such as “isn’t it messy?” Yes it can be messy, but that is okay. It only takes a wet washcloth to clean up the mess. Why sweat the small stuff? As they grow you teach them how to clean up too. I have had people say “well I can do it faster” and yes that might be the case, but these very same parents say they don’t like to do it, or they don’t want to be doing it when their child is a teen. If that is the case, then my suggestion is take the time now, have the patience, let them learn how to make it, and in the long run you will all be better off.
I have also had people ask me how I can trust that they are getting their intake right, and the reality is it is a learning experience. When they are first born and little I definitely weighed and measured and calculated, but as they got older I started to teach them how to do it. It started as toddlers asking them if they could eat this or that....”is this a yes food, or a no food?” It was easiest to do this in the grocery store while shopping. As they got a little older asking their opinion on what we should have for dinner or what they wanted me to put on our menu plan (those with PKU, and those without give input). Then it progressed to them starting to measure with supervision, and as I saw they could do it I transitioned out and did less and less overseeing.
So parents.....encourage independence in your children, let them have a voice, and teach them how to make wise choices. Involve them in their diet as much as they can understand at the age they are at, and trust in them while watching.....if they make a mistake help them understand what the mistake was, and instead of yelling and hollering and fighting teach them how to make a better choice next time.
Hang in there moms and dads.....you can do this, and your children will be just fine. My girls are now 28, 21, and 11 yrs old....all three are following their diet and drinking their formula, and all three make me so proud to have them as my daughters. I feel so blessed to be their mom!!!

About the author:  Michelle Hardy currently lives in Wisconsin and is the mother to nine children (3 with PKU).  If you would like to contact Michelle directly you can email her at PKUOrgofWI@gmail.com