Some days as a mother I wonder if I did it right…..

Some days as a mother I wonder if I did it right.  I worry that I damaged my three daughters by any of my actions surrounding them having PKU.  I worry I was too mean over them drinking their formula, and how I approached it. I worry they felt separated or segregated due to their modified diet at meal times. I worry that I pushed them too hard to manage their diet on their own. The worry of a mother never ends.

Now that being said I know in my heart that I am not perfect, but I did the best I could at the time and with the knowledge that I had. Of course, with each of the girls came more knowledge and more confidence.  I also learned from my mistakes. I learned what to be more laid back on and what I did right, and what I needed to continue doing.  Of course, I still had and have doubts and worries. 

Recently there was a post in a PKU group where a member was asking to hear from adults with PKU and wanted them to reflect on what helped them transition into adulthood. It was there that I read what my oldest daughter had to say, and her words brought tears to my eyes.  Apparently all the pushing that I did as she was growing up trying to get her to understand and manage her PKU on her own is what she found helpful.  She talked about how when she was little I implemented a system where she would monitor her own phe intake using a point system. I still remember that system. My husband cut out a bear shape out of wood and we had hooks on the bottom of the bear. She had a certain number of plastic markers and as she ate foods she would take a marker and put it on the hook.  When all the markers were gone for the day she knew she had all of her phe intake and then needed to choose phe free foods.  At the time, I thought she hated doing it, but I pushed and apparently she actually found it helpful.

Another thing I did as her mother was push her to make her formula every single day.  To me this was important because I knew someday I wouldn’t be there to make it for them, so they needed to know how to make it and needed to be responsible enough to drink it. This was super important to me because I saw so many teens and adults who fought their parents on making and drinking their formula. I needed to make this process normal to them. I needed them to see it as something they just needed to do…..no different than their siblings drinking milk. I know at times they hated it, but to become independent meant making and drinking their milk on their own. 

I also helped them learn to cook their foods at a very young age. To me this was super important because at the time I saw far too many adults whose parents were still cooking their foods and calculating their intake.  I knew this wasn’t what I wanted for them.  I wanted them to grow and develop and have independent lives just like their siblings.  So I pushed hard to make sure they were able to do it.  At times, I was sure they hated me for it (but apparently in my oldest daughter’s post she is grateful…..but that doesn’t mean she liked it at the time). 

You might be wondering why I am writing this blog, and it is because I want other parents to know the importance of helping prepare their child for adulthood. They need to be treated like any other child, because as parents our goal is to help our children grow and flourish and become the best they can be.  So help them understand the importance of their diet by helping them learn how to cook, learn how to calculate their own phe/protein intake, and how to make and drink their formula.  You can do these things in a fun and informative manner.  It doesn’t have to always feel taxing or like a chore.  Find ways to make these things fit within your life and theirs.