Peace of Mind
29 Mar 2013
I think I have been avoiding the blog.
It wasn’t completely intentional (dot dot dot).
However, I did knowingly shoo away a thought last night about Hello Sunshine and when typing in the web address for a Bloomingdales gift registry, I felt a twinge of guilt when I saw www.blogger.com begin to appear, then quickly vanish from my Google search history quick click bar.
It’s always hard as a blogger when you feel as if you can’t (or are scared to) share parts of your life. I really strive to keep it real, but sometimes anxiety and my overwhelming inclination to quadruple-guess myself takes over. Fortunately, my passion for writing usually wins out (at some point).
Wild passion – 1, Unfounded worry – 0
* * *
About two months ago, Chris and I placed Aiden’s portable DVD player on the edge of a narrow glass-topped table. I pushed back a hard plastic flyer holder and moved a pile of brochures. We sat him in a worn maroon-colored chair; the kind with little fabric cushions on each arm to make the metal frame morecomfortable. Aiden was happy as a clam once a paper plate of salt & pepper pistachios landed in his lap and Word World appeared on the tiny TV screen in front of him.
I sat next to Chris and began rubbing my right index finger over my right thumb. It’s a nervous habit, but calms me down. Cold winter days mixed with excessive amounts of hand-sanitizer, though, made my hands overly thirsty which caused this stress-reliever to offer little relief. Chris just starred straight ahead as if the ecru-colored walls were trying to tell him something.
After sitting down to face us, the genetic counselor began speaking.
Below is my summation:
The type of cancer that Aiden had is linked to a specific genetic disorder; the disorder (and therefore the linkage) is very, very rare. It is caused by a gene mutation that is hereditary, though it can be spontaneously created by the index child. This disorder greatly increases the risk of developing several types of cancer. It is not likely that Aiden will present with this gene mutation as our family history does not offer a reason for concern. The age of diagnosis, though, of the index child (under 12 months) can sometimes indicate a small increased risk.
With all that being said, Chris and I have decided to get Aiden tested as the results can potentially impact his health-management moving forward as well as our desire to grow our very young family. (Note: The other day Aiden actually informed me that he would like there to be a baby in my belly. My eyes grew very large and I patted him on the head three times. He then continued to paint at his easel as if the preceding mention never occurred.)
* * *
Now, rewind to earlier this January.
“So have you and Chris started trying to have more kids.”
“No.”
“Why not?”
“I cancelled the genetic testing appointment last October.”
Aiden’s oncologist is great. She always gets right to the point and on this day in early January she was no different. She informed me that she would be reaching out to the genetics department again and that I need to schedule the appointment. She is not at all worried that Aiden will test positive for the gene mutation, she simply wants Chris and I to be able to move forward with our lives. She is right, though, this unknowingness has been a barrier for me; a colossal-sized wall of worry. I thanked her for the push and said that sometimes I just need a swift kick-in-the-ass. With a smile and hug, she happily obliged.
Every time I meet one of Aiden’s new specialists, I ask the same questions. Maybe it is my healthcare marketing background or my crippling need for information, but I try to research every chance I get. Now, I am not haphazardly Google-ing, but I do frequent abstracts from medical journals, white papers and call up physician-friends for advice. I am not only Aiden’s mom, but his advocate. No matter how hard life gets, I know in my heart-of-hearts that ignorance is not actually bliss; at least not for me.
Peace of mind, peace of mind, peace of mind… That is what people keep telling us.
The results will offer peace of mind. I sure hope so because waiting a month+ for findings is offering very little in terms of peace. Fortunately, life goes on. We are still waiting to hear from the genetics department, but I am determined not to let anxiety whisper sour nothings in my ear any longer.
I love my Aiden more than I can even exponentially express. He is a fun-loving, curious, insanely stubborn, amazingly empathetic little man and he needs his mommy and daddy not to be crippled by worry. (Note: Chris will likely want me to edit this sentence to read “he needs his mommy not to be crippled by worry” but I see it as a team sport.)
So here we are today…
Yes, I already called the genetics department. No, I have not yet been added to their “transfer straight to voicemail list.” And no, results are still not in.
You know what?
It doesn’t matter.
In this moment I am grateful for my faith, my family, our health, our home and our love for one another. Truly if you have all that in your life, nothing else really should matter. Right?
Looks like the final score is in…
Unwavering faith and love – 1; Sneaky, ill-hearted anxiety – 0
Tiny Moments (and one REALLY BIG one) – Since My Last Post:
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| This smile gets me every time |
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| Yummy pre-Easter chocolate from Memaw Gigi |
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| Aiden’s celebratory sundae after meeting Washington Redskins quarterback, Robert Griffin III! |
I do plan to write an entry about our amazing “dream day” at Redskins Park, but I am waiting to get the professional pictures from The Gold Hope Project. The Gold Hope Project helped make the visit possible and we are so very grateful for all that they did. We can’t wait to share the pictures and experience with all of you. For now, though, be sure to check out the story written about Aiden on the Washington Redskins Blog: http://blog.redskins.com/2013/03/28/aidens-dream-day-at-redskins-park/. The Washington Redskins organization has been amazing and their kindness truly touched our hearts. HAIL!
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| iPhone shot of Aiden giving Robert Griffin III a high-five 🙂 |
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