Saturday, March 10, 2012

Decisions...

There are so many decisions in life that have to be made and when one has a chronic disease like rheumatoid arthritis, the decisions begin to mount up all too quickly. And often these decisions can come with consequences that no matter how hard we try to determine them, they are like fleeting shadows that we just can't see or get a hold on.
I have two children. One is thirty and one is twenty. When I was in my twenties and thirties I was fortunate. I didn't have ra. I didn't even know that ra existed. We had no relatives that were infected with this disease. I had no clue.  I was first diagnosed when I was 42. My children were already born, I was well into parenthood and enjoying it immensely.
Recently both of my children are showing signs of a chronic inflammatory disease. It may not be ra but I know those sneaky relatives love to come in and take over lives. The genes have been put into place, the dna turned on somehow, their fate sealed. It breaks my heart just thinking of this possibility and it angers me too. I had no clue! I had no way of knowing I would pass on a set of possibilities if I didn't know I was carrying the detonator inside my DNA!
Decisions. Always decisions to be made. I often ask myself now if I would have allowed myself to conceive if I had known I was carrying this broken DNA. Would I have knowingly brought children into this world with the possibility of inflicting them with the pain and yes suffering I have endured. This is such a personal decision and I know of many ra patients that are actively seeking to get pregnant. I pass no judgement in this post as all decisions are personal ones and ones that we all contemplate long and hard. We search our souls deep, we question the medical knowledge out there, we turn over the decision like we are looking at a precious polished pebble. We make that decision carefully and toss the pebble. The ripples begin…
I love my children without question. I have had such a rich life, such a meaningful life because of them.  In my case the decision will always linger in my mind and often in my torn heart like a wisp of smoke. Something I was not given the choice to make, something that I can't quite grasp, something that slowly fills my soul with trepidation and sadness.
Decisions…. 

12 comments:

Anonymous said...

I try not to think about it. Daughter seems to be having symptoms to me as well and like you I had no idea. Atulli

Wren said...

I understand your sadness, Deb. My daughter has also had RA flares off and on since she was a teenager. She's 30 now. They haven't been nearly as debilitating or frequent as mine, and she hasn't been diagnosed yet. Nor have they had a big influence in her life, so far.

I wish, I wish she didn't get this autoimmune disease. Thing is, maybe she won't. And if she does, and it becomes terribly painful and chronic, should I be sorry that I ever brought her into the world in the first place? I think we need to consider the many other things and circumstances we experience in the course of our lives. Certainly, not all of them are bad--and most are wonderful. RA has definitely had a big influence in my life, and I've experienced and continue to experience a great deal of pain and disability because of it, but I wouldn't give any of it up. Life brings the good and the bad, the sorrowful and the joyful, the pleasant and the pain. I wouldn't want any of that taken from me, and I sure wouldn't want to deny it to my daughter, either.

One other thing to consider: Just because you have RA, it doesn't mean that you, personally, passed it on to your daughters. There are many autoimmune diseases; they DO run in families. I always wondered where my RA came from, as we know of no one on either side of the family who had it in the past. But my mother and my grandfather both had pernicious anemia--an autoimmune disease. My sister has allergic asthma--an autoimmune disease. It may be that I have lots of ancestors, both recent and wayyy back, on both sides of the family, who had a variety of autoimmune diseases, including RA.

In which case it may not be my fault that my daughter may have rheumatoid arthritis.

It's not your fault, either. It's simply genetics and the luck of the draw.

Sending you all the warmth, comfort, and care that I can. Walk in peace.

Deb aka AbcsOfra said...

Atulli....I am sorry to hear that your daughter has ra. I do remember reading it on the about board and my heart was breaking for you.

Wren...I truly get what you are saying. I am not even sure if I had ra if I wouldn't still have conceived. Children can be such a blessing and as with all things, their is chance. A chance that many things can go right too! I keep hoping that a cure comes one day. I knew that we have breast cancer in our family and I still conceived. I keep thinking that more needs to be done in the way of researching for a cure. Perhaps one day....perhaps one day.

Christine said...

For a variety of reasons, this post hit home for me both as a 4o yr. old woman without children and who has a significant autoimmune disease and as a daughter whose mother possible carries the BRCA gene and has had ovarian AND breast cancer...sometimes the guilt overwhelms her.

That being said, there are so many different illnesses that can be passed down that are not autoimmune and so many possible causes (viral,environmental) for autoimmune illness that you will never know. I know it is easy for me to say, but rather than worry and look back, cherish them....

Theresa said...

I, too, have daughters that have been affected by these diseases. In fact, one of my twins has a heart condition because of a particular antibody I passed to her in the womb. It's odd maybe, but I have never even contemplated the question of whether or not I would have still had children had I known then what I know now. For those who have yet to have children - I cannot imagine the difficulties this presents. But like Christine suggested, I have much more to cherish than to fear!!!

Deb aka AbcsOfra said...

Christine....I so cherish my children. I have always believed in celebrating life every single day and I will continue to do just that. But I still hate to see anyone having to deal with these autoimmune illnesses. I just wish a cure could be found. In the meantime I will go on cheerishing the time we have together.

Theresa...Wow! I hope all is well with your twin. And yes we need to celebrate that they are alive and enjoy each and every moment together. I have learned that life is precious and we need to use every moment the best we can. And at the very least, they have a Mom that can help them in their journey should they need the help.

Carla said...

Deb: My heart aches for you. Take heart in the joy you've shared over the years and the joy you'll continue to share. My thoughts go out to you and your children.

MakeThisLookAwesome said...

Off topic, but I think you'll enjoy... I've given you the Leibster Award! http://makethislookawesome.blogspot.com/2012/03/liebster-blog-award.html

adrienne said...

Deb, I am sorry your children have been showing signs of pain. It is really difficult to see people you love in pain. They know you love them and that is the most important thing.

Deb aka AbcsOfra said...

Carla...bless your heart for such kindness. And I do...always will enjoy them.

Make This Look Awesome...an award :-) I haven't gotten an award now for several years. How sweet of you. As I mentioned my computer konked out but I will do my best to beg,borrow and borrow...lol others to try and get a post up in recognition of others I love to read. I would give it right back to you but don't think I can. I have enjoyed your blog alot!

Adrienne...just breaks my heart and also gets my blood pressure arising. I have high expectations for our medical community but so far, they have let me down. My daughter hates going to doctors because as she says...all they do is write a prescription that most likely will give her the side effects of the dang disease she already has. She is trying to approach her issues naturally.

tharr said...

I had the same fear when I was first diagnosed. I DO NOT want my daughter to have to live with this disease. We have a lot of similarities. No one on either side of my family has had RA (although some have had other auto immune diseases) and I was officially diagnosed at 44. So sorry to read that your children are experiencing symptoms. Does it suck ... yes, is it fair ... no, but it is not your fault.

Deb aka AbcsOfra said...

Tharr...No autoimmune in mine either. Weird! Wow, we do have alot in common....I was diagnosed at around 42/43. And thanks for reminding me that it isn't my fault. But...I still get angry and upset. I am sure I will cycle through the emotions and just have to learn to live with them...kinda reminds me of living with ra too.