Congenital Heart Defect Awareness Week. The task was to write about how the Dancing Queen's CHDs have changed my relationships, then link the blog post to When Life Hands You a Broken Heart so that all of the heart families can share and learn.
I have been thinking about this post for weeks now. I even suggested the idea to Stefenie. When I suggested it, I was certain what I was going to write about how I lost many friends, felt lonelier than ever, but my husband and I have grown together more. This is all true and I thought I knew the reason too. I thought my relationships faltered because people couldn't deal with my new life; couldn't handle the thought of a baby going through such agony and being around me made it too real. Perhaps some of that rationale is true, but it is so much more complicated than I originally thought.
Since the Dancing Queen was born, I do not have the relationships I once had. I don't speak with friends on the phone as frequently and instead of regularly speaking with three or four good friends on the phone (they all live in different states), I now only regularly speak to one friend. From early on, I felt like my other friends were abandoning me because of these less frequent calls and eventually never hearing from them. It hurt a lot. I was more alone than I had ever been. I was hurting and the people who had said they would be there for me in the middle of the night if necessary weren't there. I started a carepage for my daughter so that people could know how she is doing. I know exactly who looks at it or at least opens the page. And I know who doesn't. A couple of people who I thought were my very best friends never read the posts and never call. That hurt me the most. Neither was there for me when I needed it most. With one of the friends, she actually came to TRex's 2nd birthday party and lied to be about reading the posts to make it seem like she cared. The lying hurt even more. I felt like she was rejecting me, adding insult to injury.
However, in writing this post, I learned that she wasn't rejecting me and neither was my other friend. Neither of them had changed. I had. Before the Dancing Queen, I would call them. Before the Dancing Queen, I kept up the relationships. They only called me if I had left a message. Nothing changed on their ends. I just didn't have the time nor energy to be the only one making the effort, so the relationships fizzled. Having a child with a CHD is all consuming. There are lots of doctors' appointments, therapy sessions, lab tests, and lots of time in the hospital. There are surgeries, catheterizations, x-rays, pharmacy visits. All of those things take time. I simply didn't have the time to maintain friendships that were not reciprocating. I couldn't be the emotional support any more.
It is nice to know this now, but three years ago, when I was all alone, it didn't help. I was alone. Nobody could talk about it. Nobody would talk about it. As a woman, I wanted to talk about my feelings. I didn't have that with anyone. My husband was in deep denial at the time. My family wouldn't talk about it. It just wasn't a topic of conversation. Over time, I have forced the issue more for my sanity, but I still get cut off when I want to discuss my feelings many times with friends and family. That is the part of girlfriend relationships that I miss. (A caveat here is that I found wonderful heart mom friends who provide a forum for me to release these feelings. They understand and I feel that they care as I care for all of them.)
On a positive note though, my husband now allows me to get out my feelings, no matter how much it hurts him. He has moved beyond his denial. I feel closer to him for it. He tells me how he is feeling, at least in a rudimentary fashion. We share this experience fully with each other. By fully, I mean, we share the doctors' appointments, the therapy sessions, sitting in the hospital room, crying at the down times, rejoicing in the small miracles. The one thing I love about this sharing though is that we generally don't fall down at the same time. That allows him to hold me up when I most need it and I can hold him up when he most needs it. The Mad Scientist is my rock, my partner, my best friend, and I am eternally grateful that he wouldn't let me run away.
All of that being said, I tried to think of how else my relationship with the Mad Scientist has changed, but I can't really remember. It seems that we have been on this roller coaster for an eternity. But when I think really hard, I would say that we don't get to spend nearly enough time together any longer. Between both of us working and all of the Dancing Queen's appointments and keeping TRex on the right track, the Mad Scientist and I basically fall asleep on the couch each night rather than playing games together like we used to. We try to take dates when we are able. We have had a couple of weekends away from the kids. We constantly talk about that trip to an all-inclusive beach resort we hope to take. But, just getting a good strong hug after rough days is what I really need right now and he always has it. Well, that and talking. We talk. We talk a lot about what we are feeling, our fears, our hopes, our plans. That makes us closer.
Normally, I would do this sort of post on the carepage that I maintain for the Dancing Queen. Mainly started to keep family and friends informed about our progress when I was 8 months pregnant, the carepage continues to be about the Dancing Queen. I started this blog because there were things I wanted to say that were not appropriate in journaling the Dancing Queen's ups and downs (I really want her to be able to read it and not feel bad about her health's affect on our family because I love my baby and all that she has brought, even the bad because it comes with such GOOD). Since this blogging event was about my relationships and how my life changed, I posted it here. If you found us from the blogging event, you may know us already from carepages, but I am protecting the innocent on the open blog by not using real names and faces. If you found us from the blogging event and want to follow the Dancing Queen's story, send me an email at MomOnALine (at) gmail (dot) com. If you didn't find us from the blogging event, you should check it out at When Life Hands You a Broken Heart.