Living with Fear
February 20, 2007|
It's a part of my life. I have lived with this for over 10 years now. Living with fear has given me a chance to get to know many things about myself - some I like, some I need to change. But I live with 'Fear' as a close acquaintance.
10 years ago my son was diagnosed with Stage IV Rhabdomysocarcoma, a rare pediatric cancer. Now, he's a 13 year old young man who I admire, love and often shake my head at in response to his typical teenage behavior. He's the source of great pride for me and great fear.
Today, I realized that sharing that fear is a community thing!
I got an email from another mother whose son just finished his chemo and is moving on. Moving on is not easy for Chemo kids. The physical repercussions of the disease can be hard on these kids. My son can't play contact sports - which for a boy is every one of them! No football, lacrosse, basketball, baseball, soccer - you name it! Any sport that puts stress and torque on his hip/leg is out for him. This even includes swimming and golf. I am, thus, responsible for ruining his life as a teenager!
Last month, we noticed a bulge on his back. I, of course, curled up with my old acquaintance "fear" and had a great screaming session one-on-one with the good Lord! Felt really good, too! I knew that 10 years out of diagnosis, it probably wasn't the return of the disease, but it didn't diminish the fear. The feeling that I couldn't handle it again, that I wasn't prepared for this anymore.
Turns out the bulge was a malformation of his back muscles due to his limb length discrepancy! Not a recurrence of his disease. You just can't get ahead of the side effects some times!
But when I received the email from my friend whose son is a recent graduate of cancer treatments, my mind started wandering down the path of memories she's just beginning to make for herself. She's wondering how to live with the fear, the heartache, the trials. I realized that I'm not alone in this bizarre friendship with fear. That there is an incredibly healing touch in the bond we make with others who share this fragile life of a child. (Although, if you ever met my son, the word fragile wouldn't come right to mind!) Friends are such an important element in support for families with special needs, as is family.
When we were going through chemo, we had to PCS in the middle. I told my husband that we were moving on base. I wanted to be around family. My parents were in TX, hubby's family was in MN - so where was I going to get family in CO???? Jeepers, we all know what comes into play in times like these.....
All of you are part of that huge family we call the MILITARY. You sustained me through so many hard times and kept Fear at bay. You have provided the stability and sanity that comes from sharing in one another's lives - and I am truly grateful. Never underestimate the good a pair of empathetic ears can do for another person!
I'm sure I'm not the only one who has benefited from the military family experience due to the illness of a child. If you have had an experience with the Military Family aiding you in times of need - please share!
You and your son are my heroes.
Posted by: Andi | 02/20/2007 at 17:31
GB, you and your family are some tough folks!! and ya know, I ruined my son's teenagerhood, by just existing... so don't sweat that one. I have been incredibly fortunate, except for the usual stitches and chickenpops, nothing major with him. I will keep you all in my thoughts... dang, you folks really are TOUGH! Gives all of us in your Military Family someone to look up to.
LAW
Posted by: LAW | 02/20/2007 at 19:24
GB, you and your family are some tough folks!! and ya know, I ruined my son's teenagerhood, by just existing... so don't sweat that one. I have been incredibly fortunate, except for the usual stitches and chickenpops, nothing major with him. I will keep you all in my thoughts... dang, you folks really are TOUGH! Gives all of us in your Military Family someone to look up to.
LAW
Posted by: LAW | 02/20/2007 at 19:24
All that AND you don't let them wear hats in the house AND you make them answer the phone politely?
You're the mom of the year, you know. You totally are. :)
Posted by: airforcewife | 02/20/2007 at 20:00
I preface this story by saying I was 21, he was my first child and my husband was deployed when he was born. He spent the first two weeks of his life in an incubator with severe jaundice and pneumonia. About 3 weeks after he came home he woke up screaming with a 106 degree temperature and I took him straight to the ER, where they without even asking what the problem was sent me to Pediatrics, once in Peds I was informed he could not be seen cause I hadn't filed his paper and thru Tri-Care Prime, I reached in my purse pulled out the paper date stamped three weeks prior and asked for him to be seen and was told with a shrug of the shoulder NO! Well I went off my rocker, he's screaming, he's burning up and they were refusing to see him and trying to send me somewhere else. I might have screamed a little and called a few people idiots between my rant of my husband serves his country, I have an ID and you will see my child. According to them I became very hostile and was asked to leave the hospital and told my husbands Command would be notified. As I stood there dazed trying to figure out what to do my husbands former CO’s wife who was now the Base Commander walked up and told me she would handle it and to have a seat. She made two phone calls, one to her husband who was in the hospital for a ribbon cutting ceremony and arrived within 2 minutes leaving the ceremony w/o cutting any ribbons and the other to the Head of Pediatrics who happened to be her neighbor. While her husband dealt with the nurse, the Head of Pediatrics personally took care of my son. As a new Mom, and new to the Navy community they made me realize the importance of not judging people based on rank. My husband at the time was an E-4 but the Base Commander and his wife took care of us like we were family. Not only did they know my name but to this day we’re still their Christmas card list.
Posted by: mismysailor | 02/21/2007 at 08:24
Air Force Wife, with you around, I live with fear and laugh in the face of it - thanks! Did I tell you that I make them put their dishes in the dishwasher too????? Now, if I could just get the husband to do that too!
mismysailor, your story is truly inspirational and tells of the wonderful people available in the miltary organization! I'm sorry that you had to jump through the hoops though. Good for you for being an advocate for your child!
Posted by: GBear | 02/21/2007 at 08:32
LAW - just went back and read your comments...truly there are so many heroes in our military families! I'll try to remember that I join a long and illustrious line of parents ruining their teenager's lives and be proud!
So many of our military families are going through really tough times right now. I have a friend who is seeing her four year old boy through cancer treatments now and is doing it with more grace and love than I've ever seen. She's depending on her military family - together we make it possible for them to get through! There are many who are relying on the heroes and saints around to survive adversity and hardships!
Posted by: GBear | 02/21/2007 at 08:48
mismy--- good for you! I would have done what you did. the whole "bureaucratic nightmare" we go through is just mindboggling, when all you want is for someone to look at your baby! did the hippocratic oath get replaced by swearing on a stack of insurance forms?? sorry, my personal bugaboo.
GB: teenagers are a sub species, I'm absolutely sure of it.. somewhere between Neanderthal and alien.
LAW
Posted by: liberal army wife | 02/21/2007 at 12:20
GBear, you know I love you and I would do anything in my power to help you through the tough times. And after we e-mailed each other and I read your story and heard more about your son (while we were in TX), you continue to amaze me with your strength. Hey, we all gotta have a good cry now and then!
As you know, the military family was a HUGE source of comfort and survival whenmy DH was wounded. And the "blogosphere" became another family for us as well. As I have mentioned before, I miss the military community - but I know I have SB and my many military friends all over the world who continue to support us by just being our friends.
Posted by: Joan D'Arc | 02/21/2007 at 22:52