Oh, By The Way….

In honor of National Kidney Month, I asked my daughter Nima Beckie (blogger extraordinaire at Is What It  Is) to guest blog explaining what it’s like to be the grown child of a Chronic Kidney Disease patient.  I think she’s outdone herself (of course, I might just be a smidgen prejudiced, but I don’t think so.)nima kidney

Several years ago my mom, Gail Rae-Garwood, came to us all and told us she’d been diagnosed with Chronic Kidney Disease. At the time none of us had the first clue what that meant (Actually, at the time I might have thought it was a distant cousin of an EKG.) and couldn’t quite put two and two together.

I’m caring by nature and want to help, almost to the point where it can become overbearing. From my uneducated fear came wanting to make sure my mother was getting enough rest if we were out when I was visiting and asking all the time, “Have you had enough? Do you need a rest?”

laIf you’re an adult child with parents who have kidney disease…DON’T DO THIS!!! What I learned along the way is that while your parents and loved ones truly appreciate your care and concern, they don’t want you babying, coddling, or suffocating them.

Here’s what you CAN do instead. Ask questions and educate yourself. Get involved in the kidney community when you can. Show your support that way.

I got involved because my mother wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I helped out by acting as a reader for her, and then helping her approach the somewhat awkward (for her) task of Social Media.

The more I went back and read her blog, or helped out with Facebook, or Twitter, or read chapters of the book, the more educated about Chronic Kidney Disease I became.

I know that too much information thrown at you once can be like “Whoa?! What?!” Honestly, I still refer to the blood test I get to check for kidney disease as a BUN (the kind you eat) as opposed to a B.U.N., and am still not in the least bit fluent in medicalese.Book Cover

Last October, I took a big step—actually about eight miles worth of them. It was important to me to not just be an activist for the kidney community online but in person as well.

I made my way to Foley Square in New York City near where I live (close to my Mom’s hometown), donned an orange tee-shirt, and spent my morning volunteering for the GNYKF (Greater New York Kidney Foundation).

I helped others who were there to walk sign the banner that would be carried in front of the walkers. I’d ask each person, “Why are you here?” “Who are you walking for today?” So many faces, and so many stories and there isn’t one that didn’t touch my heart.ny pix

A lot of people were there for there for their family members, some who sadly didn’t make it. One was a dad whose 12 year old son was waiting for his second transplant, as the first one didn’t take. He was so proud of his son, but you could see the fear and hurt for his son in his eyes.

Another woman looked at me, and said, “I’m here because I’m waiting for a kidney. Is that a good enough reason?” I quickly walked around to the other side of the table to give her a big hug. I told her, just like, I’ll telling all of you. “I want you to know you are my hero. I know how hard you fight everyday, and I know it’s not always easy. I see you.” She said her husband told her that all the time, and she never believed him.

Another little girl was there because a girl in her class “…was sick with kidney disease” and she wanted to help her. I asked her if she knew where her kidneys were… (Sort of…). I showed her, and told her, “You are doing an awesome thing for your friend and should be so proud of yourself.” Then I made her give herself a pat on the back (and may have whispered to her mom that there was a face painting table in the corner 😉 )GNY

Lastly, I walked with so many people all wearing orange all the way over the Brooklyn Bridge and back – all in support of the same cause, all hoping for a cure. On the way back, I managed to snap a picture of a man taking his orange bandana from his head, and tying it at the halfway point of the Brooklyn Bridge for people fighting kidney disease everywhere.

There really are no words for moments like that. I’d worn the bracelet my mom bought for me not long after she’d moved to Glendale so she’d be with me. As I got to the finish line, the song “New York State of Mind” by Alicia Keys was playing, which was just so perfect, since I was walking for my mom in her home state. I crossed under the balloons, and called my mom.

She couldn’t pick up because she was having a bad day. Severe bronchitis from a weakened immune system. I left a voicemail, “I want you to know, this is for you. I see everything you do. I know how hard you work, even on days when it isn’t always easy, because you don’t feel well. I know how much you help people. You are and forever will be my hero. I love you.” I’ll let her tell you what she said in response…I still have it saved on my phone.sad

Here’s my last piece of advice, and it’s a biggie. Get yourself tested. Every time you go to a doctor, it’s up to you to mention to your doctor, ”Oh by the way…I have a family member that has kidney disease,” and request both your B.U.N and creatinine levels. This is simple blood work that takes two seconds but, in the end, could save you a lot of heartache.

Actually, I want to take that back a second, EVEN IF YOU DON’T have a family member with kidney disease, you should be getting checked regularly and educating yourself.

kidney-month-2014-v1More than half the population in this country is at risk for kidney disease and many of them don’t know it. That’s an awfully big number, and it doesn’t need to be. A smart lady who you may know raised me to believe that knowledge is power.  Educate yourselves, educate your friends, and get tested…Happy National Kidney Month!!

Well done, honey.

Until next week,

Keep living your  life!

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