While reading another blog, I came across this post. It is hard to explain your feelings some times and people just don't understand what it is like living day by day and never knowing what tomorrow brings or if we will be back in the hospital. If the roles were reversed, I can't say I would understand either. I never understood until I was placed in this role and that's ok..I wouldn't change a single moment I get to spend with Zach....even if it is not knowing what's next.
*It's OK to say that you are sorry, or that you are sad. It's OK to empathize and tell me that this must be hard, or that this must hurt, or that you wish this weren't happening. It's also OK to say that you don't know what to say!
* It's OK to cry, and it's OK if I cry. Trust me - you aren't making me cry, and you aren't making me sad. I cry every day and I'm already sad. It can be helpful to cry with someone else who cares about Zach and about our whole family, and it is healing in a way to know that other people care deeply about him as well.
* It's OK for me to NOT be sad all of the time, and I need to feel safe smiling and laughing when that is what I want to do. I have so, so much for which to be thankful, and so much that makes me smile. I have 2 wonderful boys that need happiness and smiles and laughter admist all this turmoil.
*Please don't tell me that God doesn't give us more than we can handle. I just don't see that in His Word. I do see that His strength is made perfect in our weakness. I believe with all of my heart that He DOES give us way more than we can handle, and then He steps in and carries us. I am not superwoman. I am not stronger than you or more capable than you. I'm not living this life because I am some kind of hero - I'm living this life because I have no other options. It can be very awkward when people try to put me on a pedestal and assume that I am more than who I really am. I'm just a wife and mommy, just like you. I get tired and I get discouraged. I get impatient sometimes. I feel whiny sometimes. I get overwhelmed sometimes.
*We always appreciate it when people offer to help, but please understand that if you say, "Call me if you need anything," or "Please let me know if there is something I can do," you probably aren't going to hear from us. :-) It is hard, uncomfortable, and honestly unrealistic for us to call people whenever we need something. It doesn't cross our mind to start calling friends with a wish list, and even if we know you want to help, we don't want to ask for something you didn't really mean to offer.
If you want to help, there are plenty of ways to do so, but we are usually so tired and overwhelmed that it works best if you simply call/email and tell us that you want to bring a meal, bring a restaurant or grocery store or Walmart gift card, that you want to put gas in one of our vehicles. It would even help if you said, "I want to meet a need for you. I have this much $$ or I have this much time, and I want to know what I can do to help with that $ or that time." Even that gives us permission to really ask, because we know that what we ask falls in the parameters of how you really meant to help. "Either or" offers are always a blessing and very easy to accept.
I'm not saying that to solicit these things. I'm saying it because we get lots of general "Please let me know what we can do" remarks. We KNOW that you mean them, and we know that your intentions are good, but specific offers are much easier to accept. If you ask if we could use one of the things I just listed, I'll say yes, but I won't call you to tell you that we need gas, or that I'm so tired that I can barely think about making dinner.
*It's OK to ask questions. Again, it won't make us sad and it certainly won't offend us. When someone asks about Zach's meds or care needs or asks for more explanation about what is going on with him, we feel less isolated because we feel like maybe now someone understands a little bit better. Please understand, though, that if you ask "How's Zach doing," we won't mind AT ALL, but we may get a deer in the headlights look and be unsure how to answer. Chances are that you'll get a short, basic answer like, "He's hurting," or "He's tired," or "He's ok right now," simply because we don't know how much you really want to know. We also don't know how much you really know already - we get thousands of hits on his blog or facebook many days, but only a handful of comments, so we don't even know who's been reading and keeping up with things. Again, we'd rather have you ask how he's doing than to ignore the situation, but please don't be hurt if you get a short generic answer - and please feel free to ask for more details!