Thursday, October 10, 2013
Finally Some Good News......
And it has nothing to do with Baby Brother....
But we'll take it!!
Actually, we don't really have good news. We just haven't had any bad news and that, in and of itself, is good news.
This has been a good week. Blogging and sharing our story with our loved ones and friends has been very cathartic for me. It has allowed me to talk about this in a way I couldn't before with the people I want to lean on.
My emotions are running high. So very very high. I just never know when it's going to hit me. In the beginning I couldn't start this story without the tears coming on full force. Now I can get through 2/3 of the story before they let loose. This is progress! I'm finding great comfort in knowledge. You know the old adage Knowledge Is Power, well that's exactly how I feel. Interestingly I have found for Jason it isn't exactly the same. He wants to know about the procedure and about length of stay and those sorts of things but feels he doesn't need to know about the things that don't matter. Now, don't get him wrong, everything matters, but what he means by that is I got some advice to ask about a particular part of Baby Brother's heart and it's condition because that *should* tell us if this will be a very serious case or a normal serious case. So I want to know that information. Jason doesn't. Because knowing the answer won't change the fact he will need surgery or that there may or may not be complications. When I sit back and really think about it he's right. The answer to that question doesn't really matter. BUT - I still want to know the answer. Now that I know about HLHS I want to become an expert. I know there are many of us like that out there. There is a point where you know too much so I'm toeing the line. Making sure I learn enough but not too much.
I have had so much support from the heart community. They all say the same thing - not really the club they want to welcome people into but one of the best communities there are. I feel very fortunate to have the friends and family I have who then connect me with even more people in this community. I have had some really wonderful advice. One woman even wants to help me put together a health binder. Said it really helped her going through the process. I have a shopping list! Binder and 2 packs of dividers. It makes me feel like I'm making progress and really preparing myself for what's to come.
As a final note I want to address a very sweet friend's concern. She was brave enough and loved me enough to admit she felt conflicted reporting her good news about her baby girl due in November while I am going through such a hard time. I can't tell you how this touched my heart. Here is my friend who has struggled for 10 years to have a baby and she's concerned about hurting my feelings because of my situation. So ~ to all our friends and family ~ if you stop sharing your good news I will be hurt! I NEED to hear the good news. I WANT to laugh and love and live your journey with you. This is so important to me. When I can revel in your good news my bad news doesn't seem *so* bad.
Sorry if this post seems to go all over the place. Once I start typing I can't control where my thoughts might lead. (I should probably use this as a warning on all my posts from here on out)
PS ~ Spellcheck really hates HLHS and Hypoplastic.
But we'll take it!!
Actually, we don't really have good news. We just haven't had any bad news and that, in and of itself, is good news.
This has been a good week. Blogging and sharing our story with our loved ones and friends has been very cathartic for me. It has allowed me to talk about this in a way I couldn't before with the people I want to lean on.
My emotions are running high. So very very high. I just never know when it's going to hit me. In the beginning I couldn't start this story without the tears coming on full force. Now I can get through 2/3 of the story before they let loose. This is progress! I'm finding great comfort in knowledge. You know the old adage Knowledge Is Power, well that's exactly how I feel. Interestingly I have found for Jason it isn't exactly the same. He wants to know about the procedure and about length of stay and those sorts of things but feels he doesn't need to know about the things that don't matter. Now, don't get him wrong, everything matters, but what he means by that is I got some advice to ask about a particular part of Baby Brother's heart and it's condition because that *should* tell us if this will be a very serious case or a normal serious case. So I want to know that information. Jason doesn't. Because knowing the answer won't change the fact he will need surgery or that there may or may not be complications. When I sit back and really think about it he's right. The answer to that question doesn't really matter. BUT - I still want to know the answer. Now that I know about HLHS I want to become an expert. I know there are many of us like that out there. There is a point where you know too much so I'm toeing the line. Making sure I learn enough but not too much.
I have had so much support from the heart community. They all say the same thing - not really the club they want to welcome people into but one of the best communities there are. I feel very fortunate to have the friends and family I have who then connect me with even more people in this community. I have had some really wonderful advice. One woman even wants to help me put together a health binder. Said it really helped her going through the process. I have a shopping list! Binder and 2 packs of dividers. It makes me feel like I'm making progress and really preparing myself for what's to come.
As a final note I want to address a very sweet friend's concern. She was brave enough and loved me enough to admit she felt conflicted reporting her good news about her baby girl due in November while I am going through such a hard time. I can't tell you how this touched my heart. Here is my friend who has struggled for 10 years to have a baby and she's concerned about hurting my feelings because of my situation. So ~ to all our friends and family ~ if you stop sharing your good news I will be hurt! I NEED to hear the good news. I WANT to laugh and love and live your journey with you. This is so important to me. When I can revel in your good news my bad news doesn't seem *so* bad.
Sorry if this post seems to go all over the place. Once I start typing I can't control where my thoughts might lead. (I should probably use this as a warning on all my posts from here on out)
PS ~ Spellcheck really hates HLHS and Hypoplastic.
Labels:
Baby Brother,
Cassie,
CHD,
HLHS,
Jason
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About title
About
I am a regular everyday wife to Jason and mom to Christian and Georgia on a roller coaster ride. We are overjoyed to be welcoming a 3rd baby into our life. We feel blessed to be given such a special spirit in this 3rd baby. This is our journey to mend our baby's broken heart.
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Blog Archive
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2013
(35)
- December(6)
- November(11)
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October(18)
- A New OB
- Questions and Answers
- Pediatric Cardiologist Follow-Up
- Build-A-Bear
- ROC Follow-up
- Blood Account
- In Good Spirits
- Emotions are funny little things...
- We've Got Siblings
- Telling Our Parents
- Georgia and her Baby Brother
- Those Tender Moments
- Finally Some Good News......
- Baby Brother's Daddy
- Hypoplastic Left Heart Syndrome (HLHS)
- Pediatric Cardiologist
- September 23, 2013
- Before September 23, 2013
2 comments:
Love you and your family! As always, will continue to pray for you and for comfort and understanding as you journey through this experience. I have learned that seeking knowledge is never a bad thing unless it replaces knowledge and Faith in God. I'm not inferring anything but like you, sometimes my thoughts just flow and I type them.
p.s. As I went to post this the security word was "youalib". I am most definitely not a lib so I am resetting for a new word. :-)
My family and I love you and yours too :)
Thank you for your prayers. We can literally feel them all lifting us. Sometimes in our very scientific world we can forget about faith and the very important role it plays in not just everyday life but in life's biggest challenges. Thank you for the sweet reminder.
PS ~ You strike me as the lib type.... ;)
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