There is a point when you know your strength might fail you. For me, my brief panic attack reminded me that perhaps I can't do this all on my own. Without you, my dear Internets, I would not have an outlet for the emotional portion of this journey. I feel unable to discuss the feelings attached to the events unfolding in my life with those actually present in my life. If I do have a particularly low moment and reach out for a helping hand, I am always met with a well-meaning response that is of no value to me. People say things like, "God is in control." You all don't know me that well, but I do believe God is in control....but I also know that it doesn't keep crappy things from happening in our lives. Really.Crappy.Things. God being in control doesn't change the fact that something is wrong with my baby, and nobody knows what it is. People are also fond of saying "Everything will be fine." Unless they are human MRI machines (how cool would THAT be?!?), who are also trained on reading the MRI results, then they cannot tell me everything is fine. It feels so patronizing. I think I'd prefer "Suck it up and deal.", because at least it is HONEST. Or "I don't know what to say." Or "I'm thinking of you." Or "I can imagine it is difficult." The point is, they don't have to say anything; I just need them to listen. But the things they choose to say shuts the door on any further communication.
Let me clear something up, I am not walking around with a bleeding heart, shoving it in people's faces. I am talking about people who in the past have been great sources of emotional support for me, and now that I need the support the most, it isn't there. I am not talking about crying in front of people (Lord, no.), I am talking about calling someone very close to me and saying "I'm kind of freaking out here." and being met with what is a well-meaning, but semi-crushing response.
I worry, because I do feel like perhaps the strength is starting to run out. If I am met with crushing news at the end of all of this waiting, I don't know how I will handle it, if all my strength has been used up already.
PS- Thanks for looking at my bleeding heart every time I shove it in your faces, you guys are the best. ;)
Kyla, I am sorry I am catching up late on all this. I need to put you on my bloglines immediately so I can hear everything you need to say when you say it.
The "God is in control" platitude drives me absolutely nuts. It takes only elementary observation to know that anything I'm worried about may happen anyway. Because things do happen.
I was chatting with a woman from my church the other night about Bub's speech delay, and she said, "You know that he has something to do in this world that only he can do." And I did find that comforting, perhaps because it insists upon his value, him, as he is, whatever that turns out to mean.
Just here to say that I am reading this and thinking of you ....
This is why I write ... because my nearest and dearest (even my husband) can't listen to me talk about G and my concerns for her day after day after day.
I'm so sorry you didn't get the support you needed "in real life". Please keep writing and we'll be here "listening" and supporting you.
Here, too, to say that I agree that the internet can be the best place to spill it all out. Why are we all so much more reticent to reach out and support in real life? I know I frequently do not confess to as much weakness in real life, even though I am not anonymous on-line.
If I could be a human MRI to give you answers, I surely would. Strength and comfort to you.
I'm sorry to hear about what you're going through. I relate to the "what not to say" issue from when I had my miscarriage. Not the same thing as what you are going through, but I was extremely shocked by what came from people's mouths.
Keep talking & we will listen.
Hello Kyla. I ran across your blog tonight and really felt like I needed to respond. My son had a lot of the same types of issues. We went through the awful testing, waiting, idiot doctor doesn't have a freaking clue, waiting a little longer etc. It really drove me insane. I couldn't tell you how many nights I just couldn't function at all due to the worry and that obsessive kind of feeling, needing to know what IT IS! You talk to friends, relatives, and they give you the same response. I know how it is. I don't know what is going on with your beautiful kiddo, but my son was finally diagnosed with Partial Agenesis of the Corpus Callosum. What that is in a nut shell is part of his brain, called the corpus callosum, didn't form completely. It is the structure in your brain that connects the hemispheres and helps to link them. He is doing really well now and I really hope that things will turn out well for you. We can not fix or change his condition, but he is being assisted via occupational therapy and is just about right on track now. You wouldn't have any idea if you saw him that anything was wrong. When I tell people (a select few) what ACC is they just can't imagine how it works, but let me assure you that some of the most horrible sounding neuro issues can be treated and controlled. The really ironic thing is that I work in the neuro research field. So the doctors couldn't just skip details and tell me oh don't worry about it. I knew what they were talking about when they said it and I let them know that I knew. Make them teach you about everything that comes out of their mouths if you want. They work for you! I will be thinking of you.
Hi Kyla. This is my first visit to your blog, but I'm really relating to what you're going through with your sweet baby - we knew all through our third child's first year that SOMETHING was wrong with her and had to bring her over and over again to the doctor until finally, finally they agreed with us. It was a draining, heart-breaking experience, but once she WAS diagnosed and began to improve, it was such a relief. I hope that things improve for you and your family, too.
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