Skip to main content

Medical: Real Talk, PKU

Medical: Real Talk, PKU

Guest post by Jackee Austerman

Total amount raised: $7,287.58 (as of spring 2021)

Their goal is simple.  They want to raise awareness about PKU and help fundraise for a cure.  See what she has to say about having two kiddos with PKU.

Well, that hit me like a ton of bricks! Shane happened to call me and thought something crazy had happened! So many tears! I was completely sobbing! Two of my friends posted about PKU Awareness Month today. Totally unexpected. Totally out-of-the-blue. For our kids. For our family. For me.

PKU Month is something I have totally championed the last couple of years. I post pictures and videos. Fundraisers. Thoughtful stories of my kids. PKU Month is so IMPORTANT for spreading awareness!

But this year, I’ve just felt overwhelming guilt. I haven’t been creative. I haven’t been vocal. I haven’t had great ideas or posts. I haven’t even shared last year’s awesome videos, pictures, and awareness spreading!

Like every other Mom, I really want to do this job right. I’m confident that I can mess up a lot of things in my life, but I do not want to mess this ‘mom thing’ up. I will try my hardest to give absolutely everything I have to my kids. 

But I have to tell you.

I’m so tired.

Not like ‘I’m tired today or ‘I’m tired this week’ …I’m like 7.5 years tired.

I remember the exact moment when Zay was 6 days old and I held him at UofI Pediatric Specialty Clinic. I tear up every time I recall my exact thoughts…I looked at my brand new baby and thought…’ We made a broken baby…this baby, that is ours, is broken’ Do you even realize how hard it is for me to admit that I had those thoughts? I described my own son as ‘broken’ when he was only DAYS old. Newborns are flawless and innocent and perfect. How in the world could the word broken come to my mind. But all I knew was what the doctors were telling us and we couldn’t fix this problem with our baby. We just had to learn to live with it. A reality that I still wrestle with 7.5 years later.

I’ve spent so many days since that moment trying to help everyone else in our world understand what I didn’t understand that day. What PKU is. What it means for our family. What it means for Zay and Ellie. The research. The setbacks. The hope. The struggles.

From the moment I became a Mom, I became a PKU Mom. I know nothing different. But I think most Moms are tired. I’m just going to throw it out there that sometimes PKU Moms are reeeally tired. And then we cry a lot…or maybe that’s just me.  (Anyone feel free to tell my husband that it’s not just me)

I just feel so much pressure to help my kids navigate their school life, their friend life, their church life, their sports life, all while carrying this extra burden. I have watched my kids be left out at so many events, and it’s my job to not feel sorry for them, but to teach them to deal with it. I have to teach my kids to politely refuse cookies, candy, food, and drinks offered to them. I have to make two meals at every single meal and I honestly do not enjoy cooking…like at all! And then I think I’m totally inadequate when I’m not more creative with my kid’s meals. Or when we don’t eat as a family because I can’t for the life of me-time their meal and Shane and my meal together. I have to check ingredients and then look into their sad eyes when they can’t eat something. I feel a constant state of indebtedness to the 3 people that can cook and provide food for my kids. Yes, my kids literally have 3 places (other than home) they can find their PKU food…school, the Carnes, and at grandma's. That’s it. But to these 3 people…I’m unbelievably thankful. You provide a safe place for my kids to be.

And Shane… Shane feels the pressure to provide…not in a normal way, but in the way that his job provides health insurance. It’s never just a job and you can find a new one anywhere…it’s undeniably our kid’s lives and health. Our kids would be in an institution without these things. (I will spare you the videos of untreated PKU). I seriously get concerned about the stress Shane endures for our family. He is our kid’s biggest advocate!

There is absolutely nothing I would change about our life. PKU or not, we are so blessed. But today I realized more than ever that I really do need the help of others on this journey. And God blessed us in great big ways in the friend department. I am literally brought to tears that others remember and post and spread awareness for us…especially when I am exhausted and don’t feel like I can do it all on my own. There is no better feeling than a friend loving on your kids.

My heart is so thankful if you are still reading this. If you feel called to help us spread awareness, feel free to share this little part of our story to spread awareness. If you feel called to support, we would be so grateful if you wanted to make a CAUSETEAM purchase through Zay & Ellie’s Fundraiser…everything goes to the National PKU Alliance for Research.