Monday, April 30, 2012

Fading to Black.

Yesterday I was having a chat with my husband about something we've discussed many times in the past (almost) 11 months - relationships we've lost along this journey. I touched a little on this topic in this post, but there was a lot more I wanted and felt like I needed to say about that topic.

June 2011 defined what it meant to be a "good" friend and a "good" family member to me. During this month, Jonathan and I went through the hardest thing we'd ever endured. We watched our son's health decline everyday. We watched him nearly pass away on 5 separate occasions. We watched him be wheeled into an OR knowing his heart was about to be stopped and his chest cracked open. That was real. It was deep and believe me when I say they were the defining moments of my life. We were scared and we were clinging to hope that our son would make it to and through the surgery that would ultimately save his life. A great deal of our family was there - my mom, dad, my in-laws, sister, brother, sister-in-law, grandparents, etc. But there were many who weren't. Many friends and family members never bothered to email or call. They made no attempt to see how Lukas was doing before, during, or after his operation. 

Honestly, it was heartbreaking. It was immensely disappointing and heart wrenching that family members and friends who promised to be there every step of the way just seemed to disappear. Jonathan and I would post things on Facebook, I would send group emails to friends and family members. Some would respond and some turned a cold shoulder. It was hurtful. Painful

I will say that some relationships diminished well before Lukas' birth. People who attempted to minimize the situation by saying things like "well, at least its fixable." As if it were okay for my son to be born with one the seven critical heart defects because hey, it was fixable. Right? Wrong. Believe me when I say I am unbelievably grateful Lukas' defect was able to be repaired, but its not so simple. His situation isn't so cut and dry. His defect means a lifetime of cardiac care. A lifetime of repeat open heart operations. It means he won't get to do some of the things that Riley and Hayden can. It means we almost lost him before his operation because his defect reached a critical point where it required emergency care or we would have been burying our son. That's real. That's not a small thing. Not to me. That comment always seemed so disrespectful and insensitive to me. Almost callous and uncaring.  And I can't count how many times I heard it before Lukas' birth and while he was in the NICU awaiting his operation.

And then there were the individuals who said they knew how I felt. Trust me, you don't. Unless you've walked in those shoes and have been down that road yourself, you have absolutely no idea. I had one "friend" who actually compared our situation to when they lost their dog at 10-years old. Everytime someone said "I know exactly how you feel" I can't tell you how angry I'd get. I'm a pretty level headed person. I don't get angry easily and I certainly don't lose my temper. But hearing those words would send me into a fit of rage. Most of the time, I tried to smile and walk away because I knew if I heard another word I was going to lose it. I had enough on my mind. I was stressed enough and I knew blowing up would just add to that stress. I didn't need it and neither did Lukas. It was just another one of those things that was very impervious and nonchalant. And hurtful. 

These things showed me the true value and meaning of relationships. They solidified relationships with my family and friends who were by my side every moment. Who were there. These individuals carried me through a time when I wanted to give up. When I thought it was too painful to continue, they helped ease that pain. They kept me strong so I could be strong for my baby. Their presence helped mend a heart that was truly breaking. They were there through the tears. They were there through the pain and the fear. They never walked away or became disinterested. And for that, they will never know the gratitude I feel in my heart.  There are not words fit enough to describe that love. These individuals, and they know who they are, showed me the true meaning of unconditional love.

And to the friends and family that weren't; well, its just part of the collateral damage that comes along with such a situation. Relationships come and go and ones that are meant to have a lasting impact on your life never fade. Those that aren't - do. Its just a fact of life, especially when situations like this arise. I blamed myself a lot at first. Wondering what I did wrong. Why didn't these people care? Why didn't they care about me and why didn't they care about my baby? Had I said or done something? That blame quickly dissipated. Those who wanted to put in the effort did. Those who didn't - well, didn't. Plain and simple.

Annamarie Saarinen, the founder of the organization 1in100 and a beautiful friend wrote an incredibly thought provoking article entitled "Collateral Damage" over this very topic. I encourage you to read it. It cuts straight to the heart of this matter.

And for those just starting on this journey - its a sad truth that relationships will diminish because of it. While it is sad, know that those who are there will make all the others a distant memory. With time, those scars fade. I promise.

Happy Monday friends. Hope your weekends were filled with beautiful things =)
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  1. Beautiful friend. Thank you for sharing your heart.

  2. Christie, great post. And, while I agree with the fact that some relationships will diminish... I must also say that some of my relationships (the REAL ones) have been strengthened. And, I've also developed many new relationships I can't imagine living without -- fellow heart families, amazing medical staff, and others we've met along this crazy, emotional, challenging journey. Heart hugs to you, Lukas and the rest of the Corwin family!

  3. Unbelievable... As I was flipping through my bookmarks & came across your site, I was just thinking about friends that currently aren't there for me, as I have been for them. I'm currently on hospitalized bed rest for our second baby. Preeclampsia for the second time (had it with our first & a hospital stay too). I've had a lot of people who have reached out & shared thoughts & prayers on Facebook when i've posted an update. However, I just have a few close friends, whom I know are busy with their lives, as we all are - but this has been going on for 6 weeks now & i've probably heard from each maybe twice. One of which lives right down the road & I did a lot for her during her pregnancy b/c her husband isn't any help & is always working. I was also there asap after she had an emergency csection at 32 weeks for HELLP and her little guy spent a month in the NICU. I guess i'm just surprised b/c it's not that I expect them to drop their busy lives & come visit in the hospital. However, a phone call or just a text to let me know they are thinking of me would be nice. It doesn't change that i've had plenty of family & friends that have been amazing & for that, I am so thankful. Just a few that stick out as they fail the friend test right now.

    I'm sorry that you'll had some family & friends who weren't there for you guys in the hardest & scariest time of your lives. So thankful Lukas is doing so well. All of your boys are so adorable!

  4. I'm a 23 year old who grew up with truncus arteriosis, and I just came across your lovely blog. It's really making me appreciate my own parents! I wish the very best for Lukas - and your whole family. You should be very proud.

    In terms of relationships, I've found that there are just some people who are not mentally/emotionally capable of dealing with serious medical issues or are just very uncomfortable with them. But you can sort of learn to recognize them and accept that those people are probably not people you'll want to rely on in times of crisis. On the other hand, I've been very grateful for (and I'm guessing that this will be the case with Lukas as well) a number of close friends I've been with all my life, who have been VERY supportive of me growing up, visited me during surgery, etc - and, in addition, I've really learned to appreciate my family and the amazing medical staff who've looked after my care. For you - being thrust into this whole thing unexpectedly - it's probably harder, and I sympathize :-\. If it's any reassurance, I think it does get easier, and (as I'm sure your doctors have told you) it's very possible to live a normal and excellent life with truncus. (I'm actually about to start med school in the fall). And also, hopefully reassuring: there are some very cool newer minimally invasive stent + valve treatments (such as Melody valve therapy) that are making it increasingly possible to cut down on the number of conduit replacement open heart surgeries needed later in life (a conduit >= 16 mm is needed for the Melody, however). I have had 2 conduit replacements (one as a baby, one at age 6) and then last week had a Melody valve placed via cardiac cath. SO much better than an operation - I spent a day overnight in the hospital and then was able to walk (ok, more like shuffle) out of the hospital the next day. And by the time your son is my age, there will probably be even better devices available! Technology is amazing. :)

  5. I too have a child with Truncus Arteriosus. She turned one last week. This post touches me deeply. I just heard about your blog today and can't believe that it speaks to the exact issue I was feeling sad about today. I have had lots of support from wonderful family and friends, but there were definitely others that turned their backs on us. I was feeling confused and sad thinking about the supposed close friends that are now absent from my life. It is comforting to know I am not alone and it is not something I did. Thanks for sharing your thoughts!

  6. I'm so happy that I found your blog through Becky (From Mrs. To Mama). My son was born with CHD's too (ASD and a VSD) and had open heart surgery at 7 weeks. While it is not the same, I too dealt with family who didn't come, didn't call, etc. It was heart breaking. I will keep Lukas and your family in my prayers.

  7. Oh my goodness!! God sent me to this blog!!! My baby also named Lukas was born with CHD's also! This post explains exactly my feelings I'm feeling at this very moment!! Thank you for sharing and making me feel "normal" with those feelings!

  8. I hope and pray that your little family is okay. I followed your blog while you were pregnant with Lukas. It is worrisome that we haven't heard from you in such a long time. Juat to let us know you are okay.


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