One Year Later

It has been one year since we received the phone call diagnosing Brooklynn with PTEN Hamartoma Tumor Syndrome. Depending on the day, sometimes I can't believe it has only been a year, and other times I can't believe it has already been a year. In this last year, I have learned a few things about myself and my family.

1. Those who care about you will stick by you through everything. Even when you are at your worse (because believe me, I was very emotional in the beginning), they understand you and allow you to not be at your best at all times.

2. Sometimes having a diagnosis does relieve some of the stress. Not being diagnosed, Brooklynn had to be at the doctors at least every month. Now that we have a diagnosis, we are going months between appointments. November is our thyroid ultrasound, and the only other appointment we have that we know of coming up is cardiology in April. To us, that is amazing. Any month we can go without doctors appointments really is a blessing.

3. Sometimes having a diagnosis really really sucks. I am glad we know what to look for. But I hate that we know what to look for. That we have to watch for signs of overgrowth. That we have to be aware of neurological symptoms that can indicate growths in the brain. That we have to watch for signs of GI polyps. And so on and so forth. And no matter how much time passes from the time of diagnosis, it will still be difficult knowing that this is her life...

4. At times, I am glad that I have a medical background. But there are times where I can turn everything over and just ask Brooklynn's doctors to be 100% responsible for knowing all of her possibilities. I hate carrying that load on myself. I want to look at her like my daughter, not like she is a patient. I am getting a little better at not "examining" her all the time. But I know I always have to look for things.

5. Brooklynn is truly an amazing young girl. I knew this before we had a diagnosis, but I know it even more now. Because even the barriers she has had to overcome, such as speech delay, muscle weakness, illnesses - she is still the HAPPIEST girl I have ever met. She throws fits, yes, but her overall demeanor is happy go lucky. It's pretty amazing to see.

6. I am very glad we have Izzy. Their sisterly bound is amazing. When Brooklynn has tests or any doctor's appointments, Izzy is right there telling her everything will be okay. She wants to make her better. She doesn't like to see her sad. I think this is going to have the been stronger as sisters. Brooklynn will need her support, and Izzy will enjoy Brooklynn's positive attitude. (I pray she keeps that positivity through everything).

7. We are stronger than we think we are. And life does really go on. I can sit here and dwell on everything that can happen. Or I can sit here and think of all that has not happened and how every day is truly amazing. I am trying to enjoy life every day with my kids. I take in every second that we go without any illness or fears of something being wrong. Because I have learned it can be taken away quickly.

8. I am still pissed some days. I am pissed that all of Brooklynn's life, the opportunity for her to be a young girl was taken away from her. My opportunity to look at her like "every other kid" was taken away from me. And I also am extremely happy to learn that her uniqueness and the fact that she is not like "every other kid" is what makes me love her even more.

9. Genetics testing really does stink. Because you open the door, and you can keep on going. We spent a whole year drawing labs. One year! That is a long time to have a lab drawn, get results, and decide which lab to draw next. And that you find out a piece of information, how it can truly effect every part of your being and your thoughts about where you were going with life. And you know, insurance companies and medical bills - they are not fun to deal with either. You have to stay on your toes.

So it has been a year. And as a family, we are stronger. And I am learning to not allow myself to dwell. I still stay up to date on journal articles. But I don't stress out about them like I did before. Because one day you can read an article that states cancer risk can be up to 85%, the next day you see an article that says 50%. So, they are still learning. And hopefully by the time cancer is a possibility in her life, we will be hundreds of miles ahead of where we are now, and cancer will no longer be such a scary word because there will be a cure, a preventative medication, something, that decreases her risk. So my hope comes in a lot more than it did when we received the diagnosis.

So far, this diagnosis has not reared it's ugly head. So far, it is allowing us to get the services Brooklynn needs to thrive and continue to grow. I am grateful for that. And while I wear my "medical hat" a little more than I would like, I know that I will be as vigilant as I can. And I know our family will continue to become stronger. I am curious as to where we will be in one year...