If you read my post from last week, you'll know that my dad wrote an entry about the early days of PKU management. He mentions that during that time, my mum and dad had only been parents for a month and a half, and they had to go through a whole lot.
I don't know about you but I felt a multitude of emotions reading it including sadness, pain, hope, guilt, empathy, and joy. So here's my response!
If you're a new parent of a child with PKU, I want you to know one thing: I don't remember anything from that last post. I don't remember getting blood tests at the hospital, having to drive down once a week and spend time surrounded by nurses getting needles in my arm. I don't remember not being able to eat and being admitted to the hospital and I don't remember refusing my formula so much that I had to almost get a tube in my stomach to get my nutrients.
Of course I remember things from when I was a bit older, like trips to the blood lab and all the other psychological, neurological, physical, mental tests I had to do. But don't feel bad about forcing your child to eat when they don't want to or for taking them to hospital once a week to get lots of tests done. My parents are awesome and made it as bearable as it could be, but I honestly don't remember any of that stuff. What I do know that I can look back on now, is how much my parents loved me and how much they sacrificed to make me healthy.
Once I got a little bit older, we tried the lab thing again, and I found a lab that I was with for at least 7 years. They loved me in there and they were just as friendly as the hospital staff was that my dad was talking about in the last post (I think. I don't remember the hospital staff). I would waltz in like I owned the place, sat in my chair, held my cotton ball on my owie like a champ, and let myself in the backroom to get myself a sticker on the way out. It wasn't a disease to me, it was a routine; I got a sticker and I got to be late to school. Bonus!
My doctors wanted me to try doing finger pokes so that I could draw blood onto four circles at home and mail it in to the hospital, but for some reason my fingers never wanted to let go of my blood. We tried different needles, different needle depths (ew), jumping up and down, running my hand under warm water, standing on my head, everything! Finally when I got to high school, I couldn't be late to school anymore and we had to do something. I talked to my dietician and she suggested I try these small lancets that slice your finger instead of pricking it (also ew), but it actually worked way better. Since high school, I have been doing at home finger pokes with slicey needles instead of pokey needles and I mail in my blood and get results emailed to me within the week. I do this once a month...OKAY FINE. I SHOULD do them once a month.
Do I get jealous when I see diabetes commercials about instantly checking blood sugar levels? Yes. What a weird thing to be jealous about right? I feel like I would be able to keep on track with my diet so much easier if I could check in on myself with an instant blood read or a scan of my arm, kind of like a mid day and end of day cash out (customer service jokes).
Although that would be easier, I'm thankful for what I have. But this is why this blog happened! To raise awareness, and comfort families going through similar situations. We will be seen, we will be heard, we will be known, but we need your help. Don't give up, and know that your child will remember the love you show them more than any amount of testing and force feeding they have to go through.