Saturday, November 10, 2007

Dealing With the Diagnosis

I cried a lot in the first couple of weeks after Logan was born. Eventually, I considered a day a good one when I could last all day without crying. One of my favorite artists is John Mayer. Some days (still) I do very well until I hear this song. (I should really ditch this CD, but I love it too much)

The Heart of Life
By John Mayer

I hate to see you cry
Lying there in that position
There's things you need to hear
So turn off your tears
And listen

Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But I know the heart of life is good

You know, it's nothing new
Bad news never had good timing
But, then your circle of friends
Will defend the silver lining

Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But I know the heart of life is good

Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But I know the heart of life is good
I know it's good

I made a list that has been ongoing since Logan was born. I never thought I would share this list with anyone. I feel very ashamed of it, but I felt like I needed to write them down to make sense of what I was feeling and so that I could remember this time in my life even though it was the hardest time of my life.
Here goes....some of these lasted moments, some lasted for weeks, some I still feel today
A series of emotions from the beginning to the present
1. Shock
2. Trapped in a nightmare
3. Can I please rewind my life...can we just go back to the way it was?
4. This can't be my life, where is my life?
5. I have let my family down
6. I didn't ask for a lifetime commitment, isn't 18-20 years enough?
7. He doesn't look like us
8. Mourning the boy we were supposed to have
9. I let Devin down
10. This is not fair to Devin
11. A GREAT fear of the future
12. A fear of the school years
13. He's not developing fast enough

I believe Logan was given to us, by God, on purpose. Besides looking into my beautiful angel's eyes, that is what gets me through each day.

Well, that is where I am at now. I do feel I have come a long way. Each day is different from the last and I do feel a bit more healed everyday, but I also know that it may take a lifetime to heal completely.


Laurie said...

I've never heard this song before. I'm going to have to get it and put it with my songs-that-make-me-cry. The one I listened to over and over and over on my way to and from the NICN for a month when Chase was born was Stand- Rascal Flatts. I'm not even really a fan of theirs, but it came on the radio one night on the way home and I could barely drive through my tears.

I think music is healing.

I also think that every parent in our situation has felt each and every thought on your list. I know that I even thought that Chase may be better off if he didn't make it through surgery. I hate that I felt that. I don't even think I have ever admitted that one before now.

I think that my biggest fear/frustration is that I let Ian down. That I was trying to give him someone to share his life with, and though, yes, I know that Chase will enrich his life...blah blah blah...he will also be a responsibility for him, no doubt.

I think the only thing that has put me at peace with this is convincing my husband that we should have another child. I just think that Chase and Ian would both benefit so much from having another sibling...and it puts my mind at ease.

This turned into a really long comment. Sorry! You just hit a nerve...:)

Emily said...

Oh how those emotions are so similar to what I felt! Sometimes it seems hard to believe that I thoughts some of the things I did after my daughter's diagnosis (such as she would have been better off to have not made it to birth and lots of thoughts of adoption) but I have come to accept that I felt these things because of the natural fight or flight response humans tend to have when placed into a stressful situation. I think it very "normal" to want to "flee" or get out of a stressful situation we are presented with unexpectedly.

So, I have to be able to cut myself some slack on the guilt issues and forgive myself for thinking and feeling things that I NEVER thought that I would feel about my own child, afterall I am sure most of us had previously thought that we would love and accept our child no matter what.

Fortunately time is a great healer and we as humans have a great ability to adapt. I really am beginning to believe that our children will show us the way and give us the strength and determination to face any challenge, one day at a time (and I'm really starting to believe that the challenges I expected at first probably won't be THAT bad, and maybe even non-existent). Yes, it is still hard to swallow some times but now I "see" my baby and not just the worst case DS scenerio.

I guess that turned out to be a long blown-out babble, but honey I hear ya! It's tough and it's an issue that takes a while to work through. And we all have to do it in our way, just know that you are not alone! It has helped me SOOO much to know that there are people that "get" what I have gone through and are still standing tall!

By the way, I still can't get over how unbelievably CUTE your baby boy is!

rylie's mom said...

Yeah, the lifetime commitment thing is what scares me still, especially when I am having a bad day. I also remember feeling like I wish I could hit a rewind button.You already know all your feelings are normal. Some get easier w/ time or completely go away -some will always be there unfortunatley. You are so new to this-It's great you are reaching out and have support. I'm just starting to reach out now and Rylie is almost 5.

Chris said...

I have felt everything on that list and I probably could even add a view. John is almost a year, and I still have days when the tears still come. I know I shouldn't do it, but sometimes I just think of what might have been.
The only thing that gets me through it is looking at was IS at this moment. It really is pointless to look to far into the future. As we know, life can change drastically in an instant. I am worrying about 20 years from now. So many things could happen. Just look at your children for today. As far as Devin, he looks like he adores his baby brother. I was worried about my girls too, but so far they have been very accepting that their brother is different. I do worry that as John gets older and the difference get more pronounced; I will see disappointment where now I see only devotion. I think that is just my fear talking. We moms don't like thinking of our children in pain. Oh, I'll stop rambling now.

Anonymous said...

Thank you for this honest and brave post. So many blogs by parents of DS kids are unrealistically saccharine. They talk about their children being perfect, they wouldn't change a single thing about them, they're grateful for their babies having DS and so on. Comments like that just make people like my cousin feel bad. Her baby has DS and much as she loves him, she has a heavy feelings of sorrow and fear for the future. I showed her your post and she said reading it helped. She didn't feeing so guilty.