Understanding

Last night, by the end of the night I was as close to a basket case as I have ever been in my life. All of the things we have been given had just finally taken their toll on me and I found myself just crying not knowing what to do or how to fix any of it. Extremely overwhelmed with the good intent of others that call or email you with suggestions or those sorts of thing but not being able to do much other than say thank you or just kind of listen to them tell you how you should handle a situation that they are not themselves living. Both Hugh and I know it is all well intended and their attempt to help and try alleviate or "fix" our current circumstances. However, Hugh and I both know that sometimes there are things that just can't be fixed and that there are others that come in God's time and not ours and advice and suggestions will not move the process along any faster or take away the pain, lack of understanding, or general frustration away and may in fact make it worse.

I sat here this morning during my 4am wake up call that I tend to have either for no reason or just way to much going on in my head. Part of me was seeking a way to understand it myself and to explain it to others on a level that they could comprehend. Often times I don't understand it myself and when asked how someone can help,often times I don't know the answer. All of a sudden it hit me and I thought of a moment in my life that was a little more understandable that related to our situation in an abstract way.

A few years ago when my grandmother was alive we were attending a baby shower for my cousin's wife. My grandmother had dialysis that day. For anyone who doesn't know much about dialysis it is an exhausting and draining process for the individual undergoing it and although it sounds simple it truly is not. My grandmother was living proof of that, she went from a strong independent woman to a woman who had to learn to depend on others and truly fight to find it in herself to wake up in the morning and endure more that she felt she had in her to do. By the end of her life she was very tired and I was blessed to have been able to be there for her and have a very personal and unique relationship with her where we talked about these sorts of things I got to see the human part of her, not the part that was always put on a pedestal by so many others. She knew she never had to pretend around me and could be honest and weak when she needed to be without feeling guilt or a need to keep it together.

That day she felt a huge obligation to show up to the baby shower and was brought in via wheelchair to do something she wanted to do but something she just had no energy to do. She kept it together for everyone yet could barely keep her eyes open and struggled to just sit in the chair. Those around her bustled around doing all the baby shower stuff. They recognized she needed to eat and felt that it would help her to get back to "herself" again. My aunt got her a plate of food and placed it in front of her and returned to participating in the baby shower festivities. I remember sitting there watching my grandmother sit in a room full of people with a plate of food right in front of her.

Every part of her knew she needed to eat but she was so drained and tired. Those around her kept doing what they were doing knowing she was "taken care of" food wise without ever realizing she was not actually eating. Someone else returned with a drink after noticing she was not eating. Cake time came and she had cake in front of her too. Now there were many options in front of her. She had tried several times to eat but her hands were so shaky and she was lucky to be able to even get her hand on the table. Not only was she not eating she was not drinking or even touching cake(her absolute favorite thing).

I remember moving to the seat next to her and discreetly asking her if she wanted to eat and she said yes. I asked her if she could eat and she just looked up at me with much pain and sadness in her eye(she had lost one to cancer but the one she did have spoke volumes) and no other word needed to be spoke. I picked up her fork without making a scene and cut the food and began to help her eat and drink. Without saying anything, I knew she was grateful and there was nothing else needed. We would take a break to get a drink and I allowed her to do some of it once she was feeling a little stronger. There were times I had to help her out again and did not leave until she was full. She eventually stayed long enough to feel as if she had completed her task there and was taken home. Often times during her hospital stays this was also the case when they would drop her food off to her...she would have to wait for someone to come help her and if no one did she did not eat or would try to eat and just get frustrated.

How does that pertain to our situation? People will call or suggest things that even though they are right in front of us we just don't have the energy or ability to do right now. Life for both of us has become very draining. No matter how much we may want to do it sometimes we just can't do it. We logically know these steps need to be taken but sometimes just don't have it in us to do it or really are not capable at this time. The overwhelming feeling of sadness as you watch it there in front of you but not be able to do anything with it becomes such an emotional thing and painful reminder of the things you know you should do but cannot do. It is not laziness or self pity by any means it is just really not being able to handle anymore due to sheer exhaustion.

That also does not mean that we feel that it is someone elses responsibility to fix our situation for us. We know we have to be a participant, just like my grandmother had to eat her food, I could not do that for her and I also gave her the opportunity to do what she was able to do but still staying by her side to help as she would tire again. I find that people will ask us how things are and we have just gotten in the habit of saying fine because we know they don't really want to know or they themselves are overwhelmed by our situation. Somewhere in there they feel as if we are asking them to fix it for us when in fact we really just wanted to share with them the very thing they asked, how we are doing.

We aren't asking you to pay our bills or feed our family or take away our pain, we are just asking you to listen. There are those who will opt to help out in their own way and that is greatly appreciated. However, we never tell someone that we are having a bad time in the expectation of getting something in return. Hugh and I both have come to know who we can now be honest with and those who we just need to say everything is fine to. We have had conversations with several family or friends who we were talking to and they made it quite apparent they had no money and could not help out when in fact that was never the intent of the conversation! When you are in that situation it really makes you feel worse than you did at the beginning of it all.

This also lead me to think of helping others and how the word charity has truly been turned around by society from it's original meaning. I am pasting in a response I posted to another blog page when someone posted about the fact that they were having a hard time taking help from others after being the one for so many years to give help. Due to their current circumstances they found themselves in very unfamiliar territory. This made me think of Hugh and I and how the two of us were always like that and how after Josh's first seizure much of that changed and we had to learn how to accept help. For us this has had to continue much longer than we anticipated and often time we have received judgmental attitudes and criticism for choices and things in our lives that others don't understand because it did not happen to them.

Unfortunately for us life happens to us. We are not the people who plan things in life and they just happen the way we anticipated them to be. There are those out there who are fortunate enough to be able to do that but life just doesn't work that way for us no matter how hard we try. Little do most people realize we aren't the ones in control. At the time we made a decision it was done with the best intent and was the right decision at that moment. That is not to say a second later we did not realize it was not the best choice or that it was not going to work out as planned. We cannot predict the future and as long as a poor decision was not made with malice or intent of hurting someone than it is something we will have to learn from and move on from. Sometimes we don't realize it at the time, but some of the worst situations and poor decisions were actually in fact the best thing to ever happen to us and actually creates something much better than we even had planned!

Below is my response and I hope that this particular blog gives you a better understanding for those who you just may not know how to help or understand why they aren't doing something that just seems so simple and easy to you.

My Response:

Unfortunately in modern days the word charity has taken on a new meaning. Here is the old school and new school version of the word taken from Wikipedia.

In Christian theology charity, or love (agapē), means an unlimited loving-kindness toward all others.

The term should not be confused with the more restricted modern use of the word charity to mean benevolent giving.

I think often in times like these it is hard to look at charity as a blessing and showing of love due to the modern day use of the word. You are learning lessons that you never would have been able to and you are also giving a gift. Think of the moments that you were the giver and how wonderful you felt to be able to help another human being in a time of need. You are now blessing someone else with that gift and teaching them lessons in life you are not aware of. Never is this a one sided thing…both the giver and receiver are actually doing both! I have personally found that it is our pride and societies views often times that gets in the way of the reality of it all. It always feels better to be the one giving but also think of those feelings of gratefulness you do feel and other emotions you are given because they now give you a better appreciation for those you helped out so many times yourself and can see first hand how they felt. You are now given the gift of truly knowing first hand what true thankfulness is all about and there will be a time where you will be able to give again in that capacity but for now you will need to find a way to give in other ways.

Recently, we lost our 4 month old son and it was my children who actually taught me a very important life lesson. My oldest went to a grief camp and upon the completion of his weekend there he told me he wanted to donate to the camp to help other children. Both my husband and I would love to have just been able to write a check to make that possible but it just was not something we could do. It was then that my 11 year old said to me, can’t we just do a fundraiser mom…someone was there for me and I want to be there for someone else. Needless to say we put together a fundraiser for this camp. Initially people criticized this decision saying our family was financially not in a place to do this sort of thing. Finances have nothing to do with charity and compassion and I found that out first hand when my boys raised over a thousand dollars and got tons of in kind donations for this organization. After the fundraiser I learned that we all have a chance to give even when we do need to receive in other aspects. If you feel the need to still give than find another outlet there is always someone in need of even just a listening ear and that can be a huge gift!