Thursday, February 5, 2009

Enough?


Am I doing enough? I ask that question to myself on a daily basis. You see I have help with the kids now. It makes a tremendous difference in our family's lives. I am no longer completely wiped out at the end of the day and I no longer dread the next day. I cross things off my "to-do" list every day and boy is that satisfying. I make dinner almost every night for the family and I get to take a shower every day! If your a mom you'll completely understand that one. But there's a nagging feeling I've had for the last month or so. Am I doing enough?

Joe is in the second month of Dermot's Hyperbaric Oxygen treatment, that means he takes Dermot out of the house from noon to 3 p.m. everyday. It's weird, not hearing his singing or having to wonder when he's going to wake up from his nap.

Is the therapy working? Do we notice any differences? Not really. If anything, I've noticed his seizure activity has increased and he seems more out of it. I can't really explain the feeling I get when I think about Dermot except to say there's a silent panic in me. If I stop to listen it gets painful. So most times I keep my mind running. I glob on to things I can control, things that give me comfort. Chocolate chip cookies, running, friends and my other little boys(I know I can't control them). A strange mix hmm?

I have friends that try every new treatment, see multiple specialists and surf the internet looking for possibilites. I watch them I worry that I'm not like them. I don't have the energy or desire, I'm not sure what it is. But it comes down to the same question, am I doing enough?

We're still waiting for some tests to return from Mayo. We had them done in mid-December and we still do not have any results back. They were doing a microscan of Dermot's chromosones to check for deletions or abnormalities and a test for a male form of Rett's syndrome. Those results are in the back of my head all the time.

I know I love my family and ALL my boys with great intensity, I'm grateful for my friends, my husband, who does more for me than he'll ever know and my crazy life.

But am I doing enough?

5 comments:

Anonymous said...

At times it is all too overwhelming and then I read your blog and I am reminded that I am not on this journey alone!

We could drive ourselves crazy wondering if it is ever enough!?! I sit here commenting on your blog while feeling the guilt that I should be interacting with my daughter, continuing to work on her cognitive and developmental skills and researching pieces of the puzzle.

We need to support each other and the individual choices we make. Glad to hear that you have help now -- nothing feels better than knocking a few things off that to do list!

Talk to you soon...
Michelle

Anonymous said...

Sue and Joe,
There is absolutely no doubt in my mind that you are doing enough for your family! I am been so touched by all the love and strength you have shown each other--I wish we could find that elusive "cure" but one thing I have seen over and over -- TLC goes a long way! Enjoy your family and always take time for those hugs! Joan

Natalie and Josh said...

Hi Sue,
Reading this post reminded me of feeling similarly helpless (and asking "am I doing enough?") when Ezra was in intensive care. Perhaps the following blog entry I wrote might bring you some peace?

It's a bit too long to post here. If you have the time just copy and paste.

http://householddelarudes.blogspot.com/2008/08/resting-heart-swells-with-gratitude.html

Thinking of you, Natalie

Kate J said...

Really, the most important thing is to love him and all your family as much as you are able, and you are doing that. Whatever Dermot can or cannot do, he knows he is loved.

Fawn said...

Hi Sue -- I'm so sorry to hear that you haven't seen the results you've been hoping for with Dermot's latest treatment.

Do we ever feel like we're doing enough?! I'm about to get some help here and I have just two kids to your four!

When you get to the end of this treatment, if it looks like you have to find something else, I'm sure you will. If things start going better, then you won't have wasted your energy. Looking for a miracle cure can drive you crazy with all the what ifs involved. You have to give each treatment a chance to work first, right?

Sending you positive energy...