PKU Awareness Day

Today is National PKU Awareness Day. I embrace anything that provides an opportunity to educate more people about PKU, especially because it is so rare. Most of the people in my life and others I come in contact with have NO idea what PKU is or have even heard of it. I had only read about it in a book while I was pregnant. I never dreamed it would become a part of my every day life. I really want people out there to be able to learn more about my boy Carson's experience and know what kind of restrictive diet he has to be on and just to be a little more sensitive and aware. I always try to put myself in other people's shoes and I just ask the same courtesy of those around me. There are a select few people out there who do make things more difficult, not knowingly, but they just don't think about others. I also think it is great to raise this awareness up to our insurance companies and the government. In some states there is a good bit of assistance, while others are lacking. Here in Alabama, my husband and I both work, so we do not qualify for any government assistance due to our income. My insurance covers Carson's formula, but we have to pay 30%. It is still very expensive. We get ZERO assistance on his special foods. I have to pay all of that myself (except when we are so blessed to share with a friend!). This is also very expensive. We are managing fine now, but what about the future? How are we supposed to save for our own retirement? for our children's future? These are difficult times and difficult questions for everyone, even those who do not have to consider special medical expenses.

If you are one of our loved ones, family or friend, or anyone who just wants to know more info about PKU, please take a look through my blog archives and read about our experience. I am SO swamped with work right now that I do not have time to write more, I just wanted to raise some awareness for my boy. And also check out my friends, the Austerman's, who have a blog listed on my Favorite Blogs list. She also posted about PKU Awareness Day. If you know of someone with PKU, share their experience today! Tell them you are thinking about them and their struggles. And feel free to write your representatives and senators! Have a blessed day!

There's Always Somebody Else

One morning a couple of weeks ago I woke up feeling fine. I felt more awake than I had in a couple of weeks. I felt better physically than I had the last couple of weeks. But by the time I got to work, I didn't feel fine anymore. I can't explain why. Perhaps I got up too early and it just caught up with me. Or perhaps I was given the news by my well-meaning significant other that we received an email that someone we know just found out their new baby has PKU. Well, my question to myself is, why am I so emotional about it?

I shed more tears that day than I saw clients or got phone calls at work. I don't know why, but the start to that day just put me into emotional overload unsuspectingly. Here I would like to hash out the reason.

Carson's Third Birthday...with Friends

Wow! I can't believe Carson is already 3!!! Carson's third year of life was yet another year of ups and downs. During this year, Carson presented with a delay in his speech and had to go through much testing. He had his hearing tested, his speech, language, and cognition tested, and even a blood test on some of his genes. The only action being taken at this time is that he was enrolled in the Early Intervention program to receive speech therapy. A therapist came to our home and worked with Carson every 2 weeks until his recent birthday. Now we are waiting for the school system to take over his therapy on a weekly basis.

"I AM WOMAN..."

...hear me ROAR!" (Helen Reddy, 1971)

Although it was Father's Day weekend, that weekend carried a very strong theme for me about the empowerment of women. Strange, yes indeed, yet very powerful and inspirational for me. It all began with an episode of Andy Griffith. The TV show ran during the 1960's, which was when the Women's Liberation Movement, or Second-Wave Feminism, began. In this particular episode that was on Saturday night, Andy was meeting with a lawyer about a case, and the lawyer happened to be a woman. Andy was very shocked to discover this, and so was his girlfriend Helen! There were many comments made throughout the show about how unusual it was for a woman to be a lawyer. Helen even commented that there were only about 2 or 3 in the whole state. That made me begin to think about how far our society has come, how drastically and quickly things have changed. I could name several female lawyers right now off the top of my head. Women do just about everything. I can't imagine living in that world when it was rare for a woman to do any job.

PKU Awareness

Since today is the last day of PKU Awareness Month, I wanted to do a blog post and share it on facebook to remind everyone I know and just get the word out about this rare occurence and how it affects real people...people you know. If you have time please be sure to read as many of my posts about PKU as you can, as well as the description on the right side of the page. Even if you've already read it, read it again. Everyone who cares for my Carson or anyone else with PKU needs a reminder once in a while.

I want to reflect for just a moment on the purpose of this blog. When I first started writing on this blog a few years ago, I was desperate for a connection, to find anyone out there with whom I could relate because I felt like we were so alone. That was a successful endeavor. I have happened upon several blogs of people and families who also deal with PKU. One of the first people to send me a message was Shane Austerman. He and his wife and son live in Iowa, many miles from my home here in Alabama, and their son, only 4 months younger than Carson, also has PKU. I have connected with this family, with Jackee, I follow their blog, we have communicated by email and send Christmas cards each year. For that, I am so thankful. To have other people's experiences to read and to share means so much to me.