Last night another caregiver and I were talking about all the problems we have faced since the merger of the two hospitals. We were comparing and contrasting the different environments. The one thing she asked me was "How do you know if they care?"
Chaz will tell you my Mommy gut has gotten even stronger since January 22. I have been able to weed through BS in record speed. So far I have been right each time. Seriously, what doesn't kill you makes you stronger. That's not just a clever saying. I told her I know who cares by their reactions. The kicker is all of the people who seem so far out of reach are the ones to me who seem to care the most. But if you take a problem to them they rely on the people in between us to do what is right and what needs to be done. But unfortunately that does not happen. We are in the engulfed in a gigantic bureaucratic system. The road blocks are staggering. I am only talking about the red tape part here. I am not referring to the personal or medical battles. So what happens to these families. They give up. They are defeated. Well I will not accept defeat. I will not go away so I don't know why you think I will. If you won't help these families I will find another route to go to so I can make it happen. These families are not as strong as I am. They are exhausted from the medical, personal, psychological and emotion battles they face every day. They don't need the bureaucratic battle too.
Last night we went to the Italian Embassy for a concert to honor the Wounded Warriors. We were asked by multiple persons how is everything. (Warning: If you are a high ranking person in the military, don't ask me this question unless you want the truth. You might possibly regret asking. I am not a soldier, I will tell you the absolute truth). I seriously thought one General's wife was going to cry. So I said to her, it will be ok. She said no it's not. You guys have enough. I suggested she come to Bethesda with me one day and let me escort her around and show her the hospital through the eyes of a wounded family. She said she thought that was a great idea. I truly pray she does. The only way to understand our struggles is to walk side by side with us. Which I welcome anyone to do with us anytime!
When the people in between you and the families tell you everything is ok. What are you going to believe? You're going to think that everything is ok. Medically it is all ok. But the bottom line is those people are not the wounded. They are the people assigned to be at the hospital where the wounded are. They think like "leg walkers" (Chaz's favorite term) they don't think like someone with a disability. Some of them have not even been deployed. Some of them have absolutely no idea what are families are dealing with. The answer at Bethesda is we are healing the solider. Well good luck on healing that soldier without someone by his/her side to help. I want to rent a board in Times Square and announce it takes a nation to heal our wounded. People need to wake up, this includes some of the people working in Bethesda who think they know what's best for our families. You should not pass rules and regulations about subjects that you are ignorant about. You should try to at least understand our families and our sacrifices before you tell us how to heal. Don't tell us how to heal. Putting our babies in day care is not an answer. Keeping our cuties out of the PT/OT area is not the answer. Focusing on creating a sterile environment only breeds hate and resentment. If you ask a soldier how is everything they will tell you it's fine. Hello they are soldiers and they were beat into submission back in Basic Training. You want honesty ask the families. You will get the truth. Better yet, spend one day with us and you will see the truth.
I hate that we have families who feel like no one cares about them. I can't tell you how many families I have had to convince that people do care. The families who were at WRAMC with us said it seems like Bethesda wants to treat our soldiers and get rid of us as soon as possible. They feel this way because of the lack of activities the families have now. They feel this way because there is no place for the kids to play and be kids. They feel this way because we don't have a place where we can all hang out and chat like we did at the Malogne House. They feel this way because the non-profits are being blocked from the patients because "the Navy hasn't vetted them all yet." They feel this way because they have the experiences to back it up. At WRAMC we were taken care of, all of us.
I know that people care. Our company at WTB had the best change of leadership possible. Our leaders really, really care about our families. After months of pleading to get things started for the families Chaz's First Sargent listened and helped me make it happen. Our little caregiver resource group is growing strong and others are taking notice. So how do I know they care? I see little victories happening. FYI you cannot radically change the military, you have to do it a bit at a time. So I will continue to convince others to care so that not one single family feels like no one cares about them! I will help champion these families to anyone who will listen so we can heal these families!!