I have some good news to report--I received a letter this past weekend from Medicaid stating that Theo qualifies for full Medicaid coverage from 9/1/05 on. When I called, the caseworker told me that after Social Security approves him for disability, they will cover from the date of disability which is 08/20/05--the day we went to the ER and the tumor was discovered. In the meantime, they had me fill out another form for the state of VA disabilty determination which I sent in yesterday. So, with the SSI qualification pending, and of course, they never really know how long anything will take, the state form will also be in the works. Whichever one goes through first will determine his disability status and allow Medicaid to pay from 8/20 on. The paydate starts on 9/1 because he began receiving hospice care in September--even though he didn't start getting the hospice care until 9/19 when we were discharged, they start from the beginning of the month. I am confident that the disability qulification will go through as well--I don't see how it couldn't-- which means that all our hospital bills will be paid through Medicaid. I am so thankful for that. The money in his savings account will go to pay for his future expenses and any expenses we may have--rent, bills, etc. if I have to be out of work for an extended period depending on his condition later on. I can only take off work for 2 weeks at a time because I used all my Family Medical Leave time and my Paid Time Off (PTO) hours (they include vacation, sick, emergency, whatever) when I took off for maternity leave for three months after he was born. Remember, we rushed him to the ER the Saturday before I was supposed to start back my regular work schedule on August 22. Instead, Theo was having his brain surgery that day. I am accruing leave hours weekly now, but because I used up the allowed FMLA time during the first months of his life, I am restricted to the 2 week limit, unless I take time off (beyond that 2 weeks) without pay, but that can only be for up to 2 more weeks. Everybody at work has been really great with my schedule and being as flexible as possible, so I'm not saying any of this in any meanspirited way, that's just the policy. Under those rules, I could have about a month off without losing my current position and benefits, etc. We have no idea what his situation will be like further down the road. So, I am glad that we will have a little extra money in his account to fall back on if we need it. Right now we have about $5000 in his account. We are going to continue to save as much as we can, because I don't know how much we might need for later, and obviously I didn't have any life insurance for him. Just about a week before all this happened I got one of those things from Gerber in the mail---pay $1 and get a $10,000 life insurance policy for your child that grows with him over the years, blah , blah, you know, you've probably seen them. And I looked at it and read it and thought about doing it and then I thought, "Why would anybody need to get life insurance for a baby? They can get it when they grow up" and I threw it out. Now I know why people get life insurance for their children. It's an awful think to think about. A book our hospital social worker gave us mentioned an interesting thing; we have a word for what you call somebody when they lose a spouse--a widow or a widower--and a word for children who lose their parents--orphan--but there is no word for a parent who loses a child. It is such a horrible thing that we don't even have a word for it in the English language. And I know we haven't lost him yet, but I still have to think about these things. I can't avoid thinking about them.
Today he has had a good day, he is sleeping right now. He just finished his afternoon feeding. He hasn't been gagging as much but he does on occasion so we have continued to run his feeds fairly slowly. He did throw up once this past weekend. He still has times when he gets very irritated and cry inconsolably for long periods and we don't know why--and then there are times that he will calm down quickly when he is held and loved on. He is pretty much on his own schedule where he sleeps for 3 or 4 hours and then is awake for a few hours, sometimes he might be awake for 3 hours or sometimes longer. He generally sleeps in the evening from 6:00 until about 8:00 and then falls asleep again till around 10:00 or so. Then he'll fall sleep around 1:00 or 2:00 a.m. and almost always wakes up around 4:30 or 5:00 a.m. and stays awake till about 6:30 in the morning. It's pretty tiring for whichever one of us is staying downstairs with him (we take turns--whichever one of us is working the next day sleeps in the bed), but we are able to sleep a few hours at a time downstairs with him at differnt times throughout the night, getting up when he does and also at 3:00 a.m. to give his medicine. I have decided to get a futon to put downstairs, the loveseat is getting less tolerable the longer we do this. It seems to be the best thing for Theo right now though. We are both doing as well as we can. Again, we have days that are better than others, and we have days that are very sad and difficult. We can only go day by day though.
Please keep us in your thoughts and prayers.
I'll keep you posted--
Love--
Karla
Tuesday, October 25, 2005
Friday, October 21, 2005
10/21/05
Theo is continuing to tolerate his new tube with no gagging or throwing up so that's some good news. Jamie has been staying downstairs with him the last few nights as I have been working and he has been off this week for fall break. I will stay downstairs with Theo tonight and Saturday to give Jamie some rest. I am thinking of getting a futon for downstairs so maybe we can both sleep downstairs with him or at the very least so that which ever one of us is sleeping down there can have a real bed to sleep in. We have two loveseats and no full length couch, so it's kind of hard to get any sleep. Not that we sleep all that much when we are down there with him, but whether he is upstairs or downstairs, we still have to get up at the end of his midnight feeding (now around 1:45 since we are slowing down his feeds) and at 4:00 a.m. to give his medicine then. The main reason for continuing to keep him downstairs is that we discovered that when we don't transition him upstairs to his crib, he cries much less at night and even when he does cry, he is much easier to calm than when he was sleeping upstairs in his bedroom. I don't know why. I guess it's just that he spends so much time downstairs that the environment is more familiar to him. But it is definitely warmer downstairs throughout the winter so we are thinking we will probably just let him stay downstairs indefinitely.
We both continue to have good days and bad days--or kind of ok days and bad days. I don't think we actually have good days at all. Some days are better than others. This doesn't get any easier. I have really been suffering a major spiritual crisis through all this. I know some people find that their relationship with God is strengthened through trials like these, but I feel completely abandoned and have actually for the first time in my life entertained the notion that perhaps there really is no god--not one that cares about what we're going through anyway. Or at the very least, can't intervene, otherwise why wouldn't he do so? The why questions beginning with us and with Theo, just expand to all the people who have been hurt, killed, left homeless and injured not only recently in New Orleans, and now the earthquakes, but all over the world. The suffering, the pain, lonlieness, illness, hunger, poverty, sadness, grief, of children and adults all over the world, all the time, just goes on and on and is everpresent. I see these things on the news (when I watch the news--I find I have very little desire to actually know what is going on outside our world of Theo most of the time) and I have a new sense of empathy and understanding of how parents feel who have lost their children, how people must feel when they have lost everything. I just can't understand it. Of course I knew that pain and suffering existed before this, but somehow I was able to find some kind of place for it, some explanation or maybe I just really ignored the reality of it all. Maybe it was just plain igonorance. I viewed pain and suffering as some kind of cosmic balancing, the way things somehow had to be until we as human beings found some way of being as a people consistently compassionate, caring, loving, more divine in our nature. I saw suffering and death as sad, difficult, painful, but necessary. A part of life to be accepted and even welcomed on some cosmic level as part of the divine cycle of life, death and re-birth. Now I know what it's like to feel that kind of helpless anguish, knowing there is absolutely nothing I can do and those feelings, this experience has called into question my most deeply held convictions, which I guess as it turns out, may not be all that deeply held. And while I still believe that the cycle of life-death-rebirth are part of a divine or a Universal mechanism of sorts, it feels personal to me now and I don't much like it. It hurts and I just want to continue to scream out how unfair it is. I feel much more fragile. I feel that all of us are much more fragile than I thought, more fragile, more special, more in need of caring and love, and sadly, I feel that God isn't offering much in the way of love and support. Unless it's through all of you, all of us. The divine nature of others comes more clear in these situations, but God himself or herself or whatever it is, feels absent. There is that part of me that knows that God is not responsible for human suffering, that God doesn't cause these things, and I want to hold on to my belief that God is love and wants to help us, but emotionally, I can't get past all the teachings of my childhood that told me "nothing is impossible wih God", that "by His stripes we are healed", etc, etc. And none of those things has been true in our situation. If those things are true, then why wasn't my baby healed? Why did this happen in the first place? Why do terrible things happen, especially to babies and children, ever? And why when people pray and pray, are those prayers not answered? We didn't believe hard enough? Didn't have enough faith? Those are the questions that go through my mind when I think on these things. And I have a hard time accepting that it's "God's plan" because what kind of plan is it then? Or that I just don't see the whole picture, that there is a reason for it all, we just can't know what it is. And I guess I do believe there is a reason, but I can't imagine a reason good enough. I can't believe anybody including God, could come to me and say, "Well, here's the reason Karla...." and I would go, "Oh, well yes, that is a good reason". I know it's because I'm human and all the reasons may be good and valid on some other higher plane where humanity and our wants and needs are not important or even relevant, but I'm not there right now, I'm here and being here right now just flat out sucks. It's just a circle of questions that can't be answered. All my why questions don't solve anything or provide any answers or even make me feel better. I know that it is just going to take a lot of time to heal and it is nowhere near being over.
I just ask that all of you continue to pray for us, because even feeling the way I do, spiritually bereft, I know that prayer and meditation, positive thoughts and energies do have a positive effect. We effect our world and others through our thoughts and actions.
So please do continue to think of us and send us your love and support. We need it. I need it.
Love,
Karla
We both continue to have good days and bad days--or kind of ok days and bad days. I don't think we actually have good days at all. Some days are better than others. This doesn't get any easier. I have really been suffering a major spiritual crisis through all this. I know some people find that their relationship with God is strengthened through trials like these, but I feel completely abandoned and have actually for the first time in my life entertained the notion that perhaps there really is no god--not one that cares about what we're going through anyway. Or at the very least, can't intervene, otherwise why wouldn't he do so? The why questions beginning with us and with Theo, just expand to all the people who have been hurt, killed, left homeless and injured not only recently in New Orleans, and now the earthquakes, but all over the world. The suffering, the pain, lonlieness, illness, hunger, poverty, sadness, grief, of children and adults all over the world, all the time, just goes on and on and is everpresent. I see these things on the news (when I watch the news--I find I have very little desire to actually know what is going on outside our world of Theo most of the time) and I have a new sense of empathy and understanding of how parents feel who have lost their children, how people must feel when they have lost everything. I just can't understand it. Of course I knew that pain and suffering existed before this, but somehow I was able to find some kind of place for it, some explanation or maybe I just really ignored the reality of it all. Maybe it was just plain igonorance. I viewed pain and suffering as some kind of cosmic balancing, the way things somehow had to be until we as human beings found some way of being as a people consistently compassionate, caring, loving, more divine in our nature. I saw suffering and death as sad, difficult, painful, but necessary. A part of life to be accepted and even welcomed on some cosmic level as part of the divine cycle of life, death and re-birth. Now I know what it's like to feel that kind of helpless anguish, knowing there is absolutely nothing I can do and those feelings, this experience has called into question my most deeply held convictions, which I guess as it turns out, may not be all that deeply held. And while I still believe that the cycle of life-death-rebirth are part of a divine or a Universal mechanism of sorts, it feels personal to me now and I don't much like it. It hurts and I just want to continue to scream out how unfair it is. I feel much more fragile. I feel that all of us are much more fragile than I thought, more fragile, more special, more in need of caring and love, and sadly, I feel that God isn't offering much in the way of love and support. Unless it's through all of you, all of us. The divine nature of others comes more clear in these situations, but God himself or herself or whatever it is, feels absent. There is that part of me that knows that God is not responsible for human suffering, that God doesn't cause these things, and I want to hold on to my belief that God is love and wants to help us, but emotionally, I can't get past all the teachings of my childhood that told me "nothing is impossible wih God", that "by His stripes we are healed", etc, etc. And none of those things has been true in our situation. If those things are true, then why wasn't my baby healed? Why did this happen in the first place? Why do terrible things happen, especially to babies and children, ever? And why when people pray and pray, are those prayers not answered? We didn't believe hard enough? Didn't have enough faith? Those are the questions that go through my mind when I think on these things. And I have a hard time accepting that it's "God's plan" because what kind of plan is it then? Or that I just don't see the whole picture, that there is a reason for it all, we just can't know what it is. And I guess I do believe there is a reason, but I can't imagine a reason good enough. I can't believe anybody including God, could come to me and say, "Well, here's the reason Karla...." and I would go, "Oh, well yes, that is a good reason". I know it's because I'm human and all the reasons may be good and valid on some other higher plane where humanity and our wants and needs are not important or even relevant, but I'm not there right now, I'm here and being here right now just flat out sucks. It's just a circle of questions that can't be answered. All my why questions don't solve anything or provide any answers or even make me feel better. I know that it is just going to take a lot of time to heal and it is nowhere near being over.
I just ask that all of you continue to pray for us, because even feeling the way I do, spiritually bereft, I know that prayer and meditation, positive thoughts and energies do have a positive effect. We effect our world and others through our thoughts and actions.
So please do continue to think of us and send us your love and support. We need it. I need it.
Love,
Karla
Subscribe to:
Posts (Atom)
