I can still remember over 29 yrs ago when I gave birth to my first child with PKU. Her diagnosis was so frightening for me, and the treatment felt so foreign. I remember wondering what life would be like for this tiny little person. I spent a lot of time worrying about how she would fit in, and how she would manage, and you know what? Times have changed so drastically, and so much of what I worried about never came to be.
For example, I remember when I gave her that very first bottle of formula. It smelled so bad. I can remember equating the smell to rotten potatoes, and wondering how she would choke it down for the rest of her life. I worried about the smell that was left on her breath and what people would think. Of course, I never told her this, but it was a fear in the back of my mind. Thankfully now there are so many options for formula. There are powdered formulas that are mixed with water, but they no longer smell like rotten potatoes. In fact, my youngest daughter with PKU drinks one that smells like chocolate. There are ready made formulas, and formulas in containers that look like juice boxes or pouches. There are even formulas in solid and pill form. As I sit here typing this I think about all of the time I worried over this and completely put myself into a state of stress, and for what? Things improved!!!!
I remember worrying about how my child’s friends would react to her having PKU. I worried she would be teased or taunted about “drinking a baby formula.” Now all these years later, my youngest with PKU just tells her friends “hang on I have to make my medicine” and no one thinks twice about it or even questions it. They don’t tease her about drinking a “formula” and no one even thinks twice.
I can also remember worrying about things like how she would fit in when she went to parties or friends houses. I worried about how I would tell the other parents that my child needed a special diet and couldn’t eat what they were serving. I worried the parents wouldn’t understand, or would get it wrong, or wouldn’t want my child over. All these years later.....everyone seems to be on a special diet. There are allergies and gluten free, paleo, vegetarian, vegan, low carb, and the list goes on and on. All these years later I think back about all the stress I put myself under and times have surely changed. Now when I say my child is on a special diet people just nod, ask how they can accommodate, and they do not see it as odd in the least bit.
I remember stressing over the fact that I had to order so many special foods, and worried about those foods being delivered on time. I worried about how I wouldn’t have enough variety in their diet, and now not only do I easily modify recipes to fit their diet and ours, but most of their foods come from the grocery store. In fact, with so many different types of diets out there I can now buy a good majority of low protein or adaptable low protein foods at the grocery store. And don’t get me started on how easy it is to order food nowadays and have it delivered to your home within a matter of hours.
I remember being told that she most likely wouldn’t be able to have a healthy baby, and how that made me feel. I was so sad for her that she would never be able to experience the joy of having her own child grow inside of her body, and never know the feeling of giving birth if that was something she wanted for herself. Now all these years later my oldest is married and is planning on having a baby of her own. All of that time I spent worrying and living in fear over nothing. Times have changed and this philosophy no longer exists. They now know with diet management females with PKU can have babies of their own.
Then there is the creation of new medications that help with compliance and maintenance of the PKU diet. Kuvan has opened up an entire world to my girls.....increasing their tolerance. Again, I remember spending so much time worrying about how they would survive for the rest of their lives on only 6 grams of protein. Nowadays not one of them eats only 6 grams of protein.....the three girls tolerances are a bit different, but they all definitely eat more than 6 grams or 300 mg/phe. (This doesn’t even touch on the fact that there is Palynziq....which my girls are not on but which makes diets normal for most people.)
I write all of this to get new parents thinking.....what you are stressed out over today might not even be an issue for tomorrow, so enjoy and love your baby where he/she is at right now and relax and let the future evolve. You never know what tomorrow might bring, so why stress over it?! Just my two cents as someone who has lived as a parent to people with PKU for the past 29 1/2 yrs.
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