Earlier today a comment was left on the blog in regards to the last posting that I took very hard. It was a very judging comment on me as a mother and how I have chosen to react and interact in this situation the past 6 months. I prayed about it, discussed it with Doug, and then deleted the comment. I do not know who left the comment, but it hurt me deeply. I was trying to shake the hurt all day long. Then tonight when we went to bible study with our group of new found "San Jose" friends, the first verses we read about were all about judging others. I knew this was the Lord's way of telling me that I knew it was not right and I needed to stand up for myself and how I truly felt about this situation.
It is very easy for every one of us to look at someone else's situation and say how we would act or react if we were in their shoes. Come on now, we have all done it. But the bottom line is we can't say that until we have been there ourselves and even then it is just not the same. It is just like saying "my kids will never do that" and then they turn around and do it. We just can't judge what others are going through or how they are handling a certain situation because we just don't know how it really is.
The last 6 months have been anything but easy for me and my family, they have been down right awful. I have probably made some decisions that weren't for the best and I have probably said some things that I shouldn't have. But the bottom line is I have been there 100% for David and that is all that has really mattered to me. For some this can be mistaken as being to controlling, but again, unless you are here in my life, you have no right to pass that judgement. I gave up my life quite willing to be by his side and there is no place in the world that I would have rather been. Being here for him has been my life and it will be part of my life for the rest of my life, this process has totally changed it. Just because the transplant is over and he will be going to San Diego for awhile doesn't mean that my caring for him will stop and that my life will "start over" as it was commented.
It has taken me a long time in these past few months to learn that I no longer need to sugar coat just how bad our situation was. So for those of you, or even just that one person that would like to pass judgement on me as a mother, these next words are for you. Please try and visualize this while you read on. Day after day I sat by my son's side from 8am in the morning until 7pm at night watching him die a little bit more each day. It wasn't very obvious at first, but soon after the Jarvick was put in it became very rapid. I never once cried in front of him, not one time. I held it together because I did not want him to ever be scared or to think that he could not rely on me for his strength.
When the Jarvick was put in and my son woke up not being able to speak or use his right side, the terror that went through me is something that I will never not ever be able to put into words. But immediately I started thinking about how we would make that work if it happened to be a life long thing. Never did I let him think that it was impossible not to survive what was happening to him. Day after day in the ICU he would do nothing but dry heave and vomit because he couldn't keep anything down, and all I could do was hold him in my arms, and hold his head and neck because he was too weak to support himself while he was vomiting. And even then I was questioned because he didn't want visitors to come and see him that way. I watched him go from a trim 185 pounds to a scarce 150 pounds in 6 weeks time. It took all he could just to get out of bed and walk around the ICU floor, and that was with the help of me and 2 nurses.
He would lay there and look at me and tell me he wanted to die, do you know how hard that was for me to hear?? Your own child is looking you in the face and tells you he wants to die, and I would just look at him and tell him you have come this far don't give up now. Again, never once crying in front of him and only leaving his side to use the restroom or to eat. He would tell me that is was hard to sleep at night because he could feel and hear the Jarvick inside of him and it felt so unnatural, and I would just tell him in a no nonsense way, "It is keeping you alive, so deal with it." He got mad at me on more then one occasion because I was pushing him to stay alive when all he wanted to do was die. And then I would feel so guilty because at night I would collapse in my hotel bed and beg God crying to take him home because I couldn't bear to see him that way anymore.
I was the one that stood in the hallway when the doctors came to me and said, "all we can do is make him comfortable, he probably has a week or two at the most." I was all alone that day, just me. I started thinking about his funeral that day, what he would wear to be buried in, and even called and left a message for Monica LaMonte fully intending to ask her if Jeff would sing at the funeral. I did all of these things without him ever knowing, because I didn't want him to give up fighting EVER! I fought with the doctors when they wanted to take him off one of the medicines that I knew was keeping him alive and had no problem telling them I told you so when I proved my point to them.
Everything I did was for the beauty of that boy, everything I still do is for that child. I have taken on Stanford doctors, nurses, and even the United States Navy these last few months. I micro manage about 100 little details every day that nobody else would even think of, like for example what kind of Magnesium he can take, thats right he can't just take any old magnesium pill! Yes, he is learning this stuff as well, but who do think needed to learn it first! I know his medical history like the back of my hand and can reel it off to anyone in a split second if they asked as well as any medication he is currently on. This isn't being controlling, this is being his mother.
I will always remind him about his medicines, his blood pressures, and the things he needs to do to keep himself safe, because I came to darn close to losing him, I watched death close in on him and I will do everything in my power and through the Glory of God to protect him from that, why? Because I am his mother thats why. So if anyone wants to judge me on those actions or tell me that I am too "controlling" or that "I have my own life to get back to"... then just try walking a mile in one of my Stanford Corridors. It isn't fun, it isn't pretty, and it isn't for the weak hearted. Everything I have done I have only been able to do through the power of my Savior Jesus Christ, and I thank him every day for the strength that he has given me and the trials that he has brought me through.
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Seriously... 6 MONTHS???
Today we had the Navy visit us and delivered us some news that I am not sure how to take! We have known for some time now that once David is released from Stanford's care he will be released back into the custody of the Navy so that they can medically retire him. What we didn't know was the details of this and for how long. Today we were told that it was going to be for about 6 months, that is how long the retirement process is going to take. I have really mixed feelings about this and there is still a lot of details to work out but for now this is what we know.
David will get some time, not a lot but some, off before having to head back to San Diego in July. At that point he will be on what they call "Med hold" and will be in private barracks on base. He will be under the supervision of a cardiologist and other doctors at all times. While under going several tests and evaluations they plan on giving him a light duty job to keep him busy on base. One that is safe and approved by the Stanford doctors. The entire time he is being evaluated by the Navy doctors the team at Stanford will be in the loop and he will continue to get his follow up care at Stanford. The barracks he will be in will be basically like a hotel room where he will have Internet access, cable TV, and there is also shuttle service that can take him to his appointments, but he can also drive as well.
Like I said, I have really mixed feelings about this.... I have been by his side for the last almost 6 months and to think that in less then 30 days that is going to come to an abrupt stop is almost depressing for me. I will really miss him, a lot. I know that this is going to be great for him, and when he found out today he was just about excited and is already making plans for his stay down there. That makes me really happy, but I was really looking forward to taking him home with me. I have loved having him around 24/7 and I am really going to miss this boy. He and I have formed quite a bond these past months and I can't imagine what it is going to be like without him around. I never even thought for a minute that was even going to be an option.
So we have a lot to muddle through here these next few weeks, and who knows this could all change up. But for now this is what we are being told!!
David will get some time, not a lot but some, off before having to head back to San Diego in July. At that point he will be on what they call "Med hold" and will be in private barracks on base. He will be under the supervision of a cardiologist and other doctors at all times. While under going several tests and evaluations they plan on giving him a light duty job to keep him busy on base. One that is safe and approved by the Stanford doctors. The entire time he is being evaluated by the Navy doctors the team at Stanford will be in the loop and he will continue to get his follow up care at Stanford. The barracks he will be in will be basically like a hotel room where he will have Internet access, cable TV, and there is also shuttle service that can take him to his appointments, but he can also drive as well.
Like I said, I have really mixed feelings about this.... I have been by his side for the last almost 6 months and to think that in less then 30 days that is going to come to an abrupt stop is almost depressing for me. I will really miss him, a lot. I know that this is going to be great for him, and when he found out today he was just about excited and is already making plans for his stay down there. That makes me really happy, but I was really looking forward to taking him home with me. I have loved having him around 24/7 and I am really going to miss this boy. He and I have formed quite a bond these past months and I can't imagine what it is going to be like without him around. I never even thought for a minute that was even going to be an option.
So we have a lot to muddle through here these next few weeks, and who knows this could all change up. But for now this is what we are being told!!
Monday, May 25, 2009
We are BACK!
Before I get going on and on about what is happening RIGHT NOW in our lives, and let me tell you it is exciting stuff! I want to catch you all up on how I have seen the Lord really and truly working in ours the past two weeks... it has been a wonderful time to really stop and listen to what he has been saying to us.
The night of Mother's Day I laid in my bed feeling so very sorry for myself when really I shouldn't have, I had a weekend of joy with my family and I was focusing way too much on what I didn't get out of it. That started making me really upset at myself, then at 3am I was woken up suddenly by some ruckus outside and as I was trying to fall back asleep these words came to me," Do not exasperate your children, bring them up to know me the Lord." I thought to myself as I was falling back asleep, sure I have been heavily pounding, along with the doctors, what David should be doing, but had I been doing in a Christ like way. Had I been doing it in a way that a true Christian mother should be? Was I going to my son and getting down on my knees not only FOR him but WITH him and showing him how to pray for guidance with this new life. I was not, and I was not showing him how to walk this walk with the Lord, and that needed to change.
It is funny how once you have your mind set to something, and it is something that the Lord has prompted you to do it is very easy to accomplish. The next morning on the way to Physical Therapy I had decided that the sins of the weekend had been washed away and we were going to move forward. When we got into the car I turned on my IPOD and the first song that came on was , " I will praise you in this storm" by Jeremy Camp. My eyes welled with tears, because that is something that I had stopped doing. I had stopped PRAISING the Lord for the new challenges he was putting before me, because through all things I am strengthened not just some things!
Later that very day my friend Sarah and I took David up to Alcatraz and we had a truly awesome time. I let go of all my fears for him and just gave him up to the Lord, I only wish that I could hold him close and protected forever, but the reality of it is, I CAN'T. But the awesome thing is the Lord CAN! How great is that, that the Lord can protect him when I can't, what a great insurance plan! When we got home at night and I downloaded the pictures on my computer there was one that I just loved of him and I. He is holding me tight with one arm around me and we are BOTH smiling, I started crying and felt compelled to send him an email thanking him for the day with a copy of the picture. Yes even though we live in the same hotel room, an email seemed the perfect way to communicate for me.
It wasn't until very late the next night that I got a response, and it was such a positive one. It is an email that has been printed and put in that treasure box that I hold near and dear to my heart and everything precious goes into. Since that day, he has taken his vitals pretty regularly, his meds on a good schedule, and has been doing some exercising. He hasn't gotten it down to a perfect routine, but he is honest when he doesn't do it and he is trying his best. That is all we can ask for, and just the fact that he is making an effort is a step in the right direction for me.
Something else happened that week after Mother's Day, a friend of mine from Bakersfield sent me a text message that a good friend of hers had been air lifted to Stanford and was in multiple organ failure, mainly with her liver. I felt compelled to stop in and see her mother and father, as this young woman is only 26 years old. I know first hand what it is like to sit there and watch your child dying, and it is something that you can not describe to anyone else or really share with anyone else. It was my honor and extreme privileged to take both of those people in my arms and hold them close. And I think it was very good for David to see just how hard it is to watch a child dying, being on the outside looking in paints a very clear picture of the pain and anguish that you feel. Thankfully this family were believers and even more so 2 days later the young woman got a liver transplant.
We got to go home that weekend for another weekend pass, and it was an extended pass this time, 4 days instead of 2 and we just had a ball. Again I had to take a deep breath and let the Lord take over, for once I concentrated on myself first and not David. I loved on my little ones and most importantly my husband. I hung out with friends, saw my family, and one day stayed in my workout clothes all day because I COULD! Somewhere in that weekend David made a huge turn around in his attitude. He did get cleared for driving that week so he drove to a friends house, which was so exciting for him. When we came back to the "homtel" his whole attitude was different, I could sense it in his whole being. He started wanting to play his computer games again, napping has pretty much ceased and he has taken full control of his health care. He even helped me carry in the groceries when I got back from the grocery store.
And then the most exciting thing that happened this past week, and I just love our God for this one! We were invited to our friend Sarah's house for dinner, she and her husband were making us some homemade Italian so we drove down into San Jose for dinner, and let me tell you it was good! Then we stayed for their small group bible study that they have every Wednesday night, they were starting a new study that week on Romans. I personally loved it and I was the "oldest" meaning more seasoned in the group, being the only one married outside of 2 years and having kids. Which was really weird since we were all the same age, but this group of people were so incredibly awesome and so filled with the Lord. David really loved being a part of the group and really enjoyed himself and even offered up a part of himself when they asked for prayer requests. Later that evening when we were back at home he then asked me if it would be all right if we went every Wednesday while we were still here! YAHOO! Our God is a great big GOD who will lead us where we need to be when we need to be there!
Then this past week I got what was apparently some sort of flu bug. At first I thought it was my ulcer acting up or maybe something I ate, because the only symptom I had was a HORRIBLE tummy ache. David was very sweet and took really good care of me, even went down to the hotel lobby and got me 7ups as I needed them. But the day after I started feeling better he came down with it. I felt so bad! How could I of infected him, when they told me the care givers were to leave as soon as they got sick! But I called the nurse and she just laughed at me and said that this was a good thing for several reasons. 1) It made him realize just how immune suppressed he really is and how quickly he will get something 2) At least it happened why we were close to Stanford so they could help us learn how to deal with common every day stuff that he is going to get and 3) This helped David really learn how to stop and listed to his body.
He is finally feeling better today after 3 full days of the horrible bug, it attacked him harder then me because his system is so weak, but he is pretty much back to normal today. The whole family was here over the weekend and it was just awesome. We are getting close to being "released" we are hoping for sometime around the 19th of June, so pray for that please!! He is really taken a new lease on life and it shows in his daily behavior and attitude.
Here are some medical updates that have happened since last posted:
The night of Mother's Day I laid in my bed feeling so very sorry for myself when really I shouldn't have, I had a weekend of joy with my family and I was focusing way too much on what I didn't get out of it. That started making me really upset at myself, then at 3am I was woken up suddenly by some ruckus outside and as I was trying to fall back asleep these words came to me," Do not exasperate your children, bring them up to know me the Lord." I thought to myself as I was falling back asleep, sure I have been heavily pounding, along with the doctors, what David should be doing, but had I been doing in a Christ like way. Had I been doing it in a way that a true Christian mother should be? Was I going to my son and getting down on my knees not only FOR him but WITH him and showing him how to pray for guidance with this new life. I was not, and I was not showing him how to walk this walk with the Lord, and that needed to change.
It is funny how once you have your mind set to something, and it is something that the Lord has prompted you to do it is very easy to accomplish. The next morning on the way to Physical Therapy I had decided that the sins of the weekend had been washed away and we were going to move forward. When we got into the car I turned on my IPOD and the first song that came on was , " I will praise you in this storm" by Jeremy Camp. My eyes welled with tears, because that is something that I had stopped doing. I had stopped PRAISING the Lord for the new challenges he was putting before me, because through all things I am strengthened not just some things!
Later that very day my friend Sarah and I took David up to Alcatraz and we had a truly awesome time. I let go of all my fears for him and just gave him up to the Lord, I only wish that I could hold him close and protected forever, but the reality of it is, I CAN'T. But the awesome thing is the Lord CAN! How great is that, that the Lord can protect him when I can't, what a great insurance plan! When we got home at night and I downloaded the pictures on my computer there was one that I just loved of him and I. He is holding me tight with one arm around me and we are BOTH smiling, I started crying and felt compelled to send him an email thanking him for the day with a copy of the picture. Yes even though we live in the same hotel room, an email seemed the perfect way to communicate for me.
It wasn't until very late the next night that I got a response, and it was such a positive one. It is an email that has been printed and put in that treasure box that I hold near and dear to my heart and everything precious goes into. Since that day, he has taken his vitals pretty regularly, his meds on a good schedule, and has been doing some exercising. He hasn't gotten it down to a perfect routine, but he is honest when he doesn't do it and he is trying his best. That is all we can ask for, and just the fact that he is making an effort is a step in the right direction for me.
Something else happened that week after Mother's Day, a friend of mine from Bakersfield sent me a text message that a good friend of hers had been air lifted to Stanford and was in multiple organ failure, mainly with her liver. I felt compelled to stop in and see her mother and father, as this young woman is only 26 years old. I know first hand what it is like to sit there and watch your child dying, and it is something that you can not describe to anyone else or really share with anyone else. It was my honor and extreme privileged to take both of those people in my arms and hold them close. And I think it was very good for David to see just how hard it is to watch a child dying, being on the outside looking in paints a very clear picture of the pain and anguish that you feel. Thankfully this family were believers and even more so 2 days later the young woman got a liver transplant.
We got to go home that weekend for another weekend pass, and it was an extended pass this time, 4 days instead of 2 and we just had a ball. Again I had to take a deep breath and let the Lord take over, for once I concentrated on myself first and not David. I loved on my little ones and most importantly my husband. I hung out with friends, saw my family, and one day stayed in my workout clothes all day because I COULD! Somewhere in that weekend David made a huge turn around in his attitude. He did get cleared for driving that week so he drove to a friends house, which was so exciting for him. When we came back to the "homtel" his whole attitude was different, I could sense it in his whole being. He started wanting to play his computer games again, napping has pretty much ceased and he has taken full control of his health care. He even helped me carry in the groceries when I got back from the grocery store.
And then the most exciting thing that happened this past week, and I just love our God for this one! We were invited to our friend Sarah's house for dinner, she and her husband were making us some homemade Italian so we drove down into San Jose for dinner, and let me tell you it was good! Then we stayed for their small group bible study that they have every Wednesday night, they were starting a new study that week on Romans. I personally loved it and I was the "oldest" meaning more seasoned in the group, being the only one married outside of 2 years and having kids. Which was really weird since we were all the same age, but this group of people were so incredibly awesome and so filled with the Lord. David really loved being a part of the group and really enjoyed himself and even offered up a part of himself when they asked for prayer requests. Later that evening when we were back at home he then asked me if it would be all right if we went every Wednesday while we were still here! YAHOO! Our God is a great big GOD who will lead us where we need to be when we need to be there!
Then this past week I got what was apparently some sort of flu bug. At first I thought it was my ulcer acting up or maybe something I ate, because the only symptom I had was a HORRIBLE tummy ache. David was very sweet and took really good care of me, even went down to the hotel lobby and got me 7ups as I needed them. But the day after I started feeling better he came down with it. I felt so bad! How could I of infected him, when they told me the care givers were to leave as soon as they got sick! But I called the nurse and she just laughed at me and said that this was a good thing for several reasons. 1) It made him realize just how immune suppressed he really is and how quickly he will get something 2) At least it happened why we were close to Stanford so they could help us learn how to deal with common every day stuff that he is going to get and 3) This helped David really learn how to stop and listed to his body.
He is finally feeling better today after 3 full days of the horrible bug, it attacked him harder then me because his system is so weak, but he is pretty much back to normal today. The whole family was here over the weekend and it was just awesome. We are getting close to being "released" we are hoping for sometime around the 19th of June, so pray for that please!! He is really taken a new lease on life and it shows in his daily behavior and attitude.
Here are some medical updates that have happened since last posted:
- His tongue swelling that he had right after transplant has come back again mysteriously
- He contracted Thrush in his mouth from not taking one of his meds that prevents that
- He has become Diabetic, which they told us would happen, it is Medically Induced Diabetes, and he has to just watch his sugar intake, they have him on a blood sugar medication, and he has to test himself twice a day with a little pin prick on the finger
- His blood pressures have been on the high side so they have been trying to regulate that with medication as well. Diet and exercise will also help with this.
Monday, May 11, 2009
Alcatraz....
My friend Sarah and I decided that David needed to see what jail really looked like... NO I AM JUST KIDDING!! Last week, Dave made a list of things he wanted to do to get out and about and since we are only 30 minutes from San Francisco, he put down Alcatraz as one of them. Our good friend Sarah Ferraro said she would love to join us because she had never been and it just so happened she had today off from the hospital so we took the afternoon and drove on up to the city and had a great time. After the tour, which was REALLY interesting we all went out to dinner at Bubba Gump Shrimp's and then headed back to Stanford. It was a fun day and we ALL enjoyed ourselves, so I am pretending that today was my 2nd mothers day. Maybe yesterday David just didn't like sharing me with the little kids:) So I felt really lucky to have a good day with him today and it was a lot of fun.
This is David standing in one of the "Isolation" cells, wonder if it is the same one that Al Capone was in?
Dave and I on the island with a beautiful view of the San Francisco Skyline in the background.
A great group shot of the 3 of us before getting on the ferry that took us to the island.More to Come.....
****** UPDATE*******
The blog is not over..... more to come in the next day or two.... mainly because I am just so stinking tired.... but the Lord really spoke to me last night and then again today..... and the blog will not be over.... I am so excited how the Lord has chosen to work in this next part of our journey.... but in the meantime enjoy some pictures of the outing I took with my son today.....
The blog is not over..... more to come in the next day or two.... mainly because I am just so stinking tired.... but the Lord really spoke to me last night and then again today..... and the blog will not be over.... I am so excited how the Lord has chosen to work in this next part of our journey.... but in the meantime enjoy some pictures of the outing I took with my son today.....
Sunday, May 10, 2009
Mothers Day
So today is Mothers Day..... I will not go into detail as to what kind of day it was for me, but if you would like to email me I will tell you.
Thank you for all the comments you have left on the blog to David and I, they mean so much to me. But I have to tell you that to my knowledge, David does not read the blog or the comments. He has a friend that reports to him what I write on the blog, and the report gets a little misconstrued I am afraid. So because of that I am now toying with the fact of not writing on the blog anymore, it has made him mad enough to not wish me a Happy Mothers Day, and that makes me sad and I will not have that kind of contention between him and I. I know that he loves me very much and things are just hard for him right now, and in his defense he is not being mean at all, just stubborn. I love him more then anything in the world, and I know that he KNOWS that. I just need to get down on my knees and pray for him that his heart will change and that the Lord will really speak to him. I know he will and I know that the strength for all of this will come through the Lord, but I do not want David getting to the point where he resents me. So far he has not, I don't know why he chose not to acknowledge me on this day, that is between him and the Lord. I know that he loves me and that is all that matters.
So if I don't write much for awhile, that is why. I have a DEEP DEEP love for all of you and my heart is full of love for so many of you that I have never even met. Please know that I thank the Lord for each one of you every day.
Thank you for all the comments you have left on the blog to David and I, they mean so much to me. But I have to tell you that to my knowledge, David does not read the blog or the comments. He has a friend that reports to him what I write on the blog, and the report gets a little misconstrued I am afraid. So because of that I am now toying with the fact of not writing on the blog anymore, it has made him mad enough to not wish me a Happy Mothers Day, and that makes me sad and I will not have that kind of contention between him and I. I know that he loves me very much and things are just hard for him right now, and in his defense he is not being mean at all, just stubborn. I love him more then anything in the world, and I know that he KNOWS that. I just need to get down on my knees and pray for him that his heart will change and that the Lord will really speak to him. I know he will and I know that the strength for all of this will come through the Lord, but I do not want David getting to the point where he resents me. So far he has not, I don't know why he chose not to acknowledge me on this day, that is between him and the Lord. I know that he loves me and that is all that matters.
So if I don't write much for awhile, that is why. I have a DEEP DEEP love for all of you and my heart is full of love for so many of you that I have never even met. Please know that I thank the Lord for each one of you every day.
Friday, May 8, 2009
I am so sorry
Today Dave and I went together to the therapist, she was quite disappointed from last week after talking to the doctors about Davids choices before yesterday. She openly told Dave how upset she was and how his choices were eventually going to cost him his life. She talked to him for a long time about the things he has to do from now on where his health is concerned and that he will have to live a different life then before. It will still be a wonderful life, but there will be some added stuff to it that he is going to have to do to stay alive. Dave then shocked all of us by saying he will do what he needs to do to be "released" from Stanford but after that he has no plans to continue the treatment plan they have in place for him. His exact words were, "this is all so stupid." He says he will take his medicines because he realizes they are important, but he will not take his vitals, continue to exercise, watch what he eats, or manage his life in any other way. He says there is no point and he will be fine and that he is tired of the scare tactics everyone is pulling on him.
The therapist looked at me and said that Doug and I needed to treat this attitude like parents of a drug addict. That as much as it hurts us that we can not allow him to live with us when he is choosing to ultimately kill himself. She then told me that it would be so hard to watch him make that choice everyday, and that we needed to prepare ourselves for the fact that because of this David is going to die. He will probably die within 1-5 years because of his decision. He just smiled and had a whatever attitude, and that he isn't worried about finding a place to live because there are plenty of people that will take him in. There is no hard feelings going on between David, Doug, and I at all, he just doesn't want to do what he needs to do to manage his life, his exact words are ," this is all so stupid." I know I already said that, but I feel it bears repeating.
I beg of you if you are approached by David to come and stay with you that you firmly tell him no, and why you are saying no. He needs to hear it from other people, not just us, how badly it hurts us that he is choosing this for his life. Please do not enable him to continue this pattern, I plead with you. He says he isn't trying to hurt us he just doesn't see the point in all of the extra stuff. In his mind he has a new heart and everything should be fine and that nothing will happen, we are all being paranoid.
I am deeply sorry that so many of you have stopped your life for him, have prayed for him, and given so much of yourselves to his recovery. I am deeply embarrassed and sad that this is how he is choosing to show his gratitude.
Please pray for the Lord to work through him and show him the reasons why he needs to treasure and change his life, because it is totally up to the Lord now. He knows what I want and everyone else wants. It is up to him to do it. He has been doing great here the past couple of days, but he openly admits it is only because he wants to leave and he is "giving them what they want". He has no plans to continue taking care of himself after we leave here.
The therapist looked at me and said that Doug and I needed to treat this attitude like parents of a drug addict. That as much as it hurts us that we can not allow him to live with us when he is choosing to ultimately kill himself. She then told me that it would be so hard to watch him make that choice everyday, and that we needed to prepare ourselves for the fact that because of this David is going to die. He will probably die within 1-5 years because of his decision. He just smiled and had a whatever attitude, and that he isn't worried about finding a place to live because there are plenty of people that will take him in. There is no hard feelings going on between David, Doug, and I at all, he just doesn't want to do what he needs to do to manage his life, his exact words are ," this is all so stupid." I know I already said that, but I feel it bears repeating.
I beg of you if you are approached by David to come and stay with you that you firmly tell him no, and why you are saying no. He needs to hear it from other people, not just us, how badly it hurts us that he is choosing this for his life. Please do not enable him to continue this pattern, I plead with you. He says he isn't trying to hurt us he just doesn't see the point in all of the extra stuff. In his mind he has a new heart and everything should be fine and that nothing will happen, we are all being paranoid.
I am deeply sorry that so many of you have stopped your life for him, have prayed for him, and given so much of yourselves to his recovery. I am deeply embarrassed and sad that this is how he is choosing to show his gratitude.
Please pray for the Lord to work through him and show him the reasons why he needs to treasure and change his life, because it is totally up to the Lord now. He knows what I want and everyone else wants. It is up to him to do it. He has been doing great here the past couple of days, but he openly admits it is only because he wants to leave and he is "giving them what they want". He has no plans to continue taking care of himself after we leave here.
Thursday, May 7, 2009
Giving it to God- ALWAYS
Late Tuesday night I was on the phone with a friend and I was so tearful and at a loss as to what to do next with this sweet boy of mine. Thankfully she is the kind of friend that doesn't mince words with me and basically said this to me, " YOU NEED TO GIVE IT TO GOD!" she then proceeded to tell me how I could do no more it was now between David and the Lord and how I could only do so much. Right then when she said that to me I was not acting like a believer but first and foremost a mom, I listened to her and thought to myself- Well, too bad God can just work through me to change this child! Isn't that just the controlling nature of us moms! I got off the phone with her, came back inside the homtel room and went to bed. The next morning (yesterday) I woke up and thought to myself, "what am I thinking! Of course I have to give it to God, he is the only one that can really help us!" So I got down on my knees and did just that, I pleaded with the Lord but also knew that through him is the glory of all things.
I went about my day yesterday, and had a few opportunities to tell David how I really felt about the situation in a non threatening way, clearly stating that this had to stop not only does he want to get on with his life but so do I. Things like that, not sure if he really listened, but it was on my heart to say such things to him. Then in the afternoon I called one of our mighty prayer warriors in Seattle and we spoke about the situation and she told me she would start lifting him up in prayer. Then I posted the blog about how we needed to lift him up and let the Lord work through him.
Last night around 4pm, he came out of his room sat on the couch and turned on the TV. He has never done this, he always sits in his room with the lights off and curtains drawn, even to watch TV. He then proceeded to sit on the couch and watch TV for the next 5 hours, I sat there truly dumbfounded! Then this morning I went down to wake him up for clinic and he was already up taking his BLOOD PRESSURE and other vitals. I was again stunned, and then chastised myself for being so stunned, because it hit me all at once that this was happening because I finally gave it to God. I realized that this whole time I have been struggling for the answers and help and this whole time the Lord has just been waiting for me to release it to him. You would think that after all we have been through I would have realized this a long time ago! BUT NO- I had to be the stubborn one. Here I was being a fretful parent because David was acting like a disobedient child, but I in turn was also acting that way to the Lord. Oh how he must have been fretting over me these past weeks!
Then today in clinic our wonderful nurse Bonnie came up with a fantastic STRUCTURED plan to keep David on task and to do the things he needs to be doing. David was thrilled with the plan and is excited to try it. If he does it exactly as laid out for him for the next 7 days they will in return grant him another weekend pass home, with some conditions of course! In addition to all of this they also gave him set goals he needs to accomplish before they will release him for good, he was excited about this and I can tell that he is ready to make a difference. After we left the doctor he told me " we need to make a list of things to do everyday and just do them, I am going to try harder." My heart was so happy!! Then tonight when we got home from the hospital, instead of going to straight to his bed, he changed into his swim trunks and went down and swam for 1/2 hour! PRAISE GOD! I know that Gods Glory is being shown through this, but I am also keeping our nurse Bonnie's words in mind, she told me today she was being "cautiously optimistic":)
These events have strengthened my resolve once again that the Lord will work wonderful things if we just ask him to and turn over our hearts to him. This is no happenstance that David has had a change in attitude this is purely the power of prayer and release from the Lord. I am so thankful that I have a sovereign God that is my protector in all things, especially in parenthood.
Oh and one more thing that has maybe helped a little:) I brought our cat, Sebastian, to the homtel this past week and he has been nothing but joy for David and I. Plus it is another "being" for us to interract with and has been helpful for the both of us!
I went about my day yesterday, and had a few opportunities to tell David how I really felt about the situation in a non threatening way, clearly stating that this had to stop not only does he want to get on with his life but so do I. Things like that, not sure if he really listened, but it was on my heart to say such things to him. Then in the afternoon I called one of our mighty prayer warriors in Seattle and we spoke about the situation and she told me she would start lifting him up in prayer. Then I posted the blog about how we needed to lift him up and let the Lord work through him.
Last night around 4pm, he came out of his room sat on the couch and turned on the TV. He has never done this, he always sits in his room with the lights off and curtains drawn, even to watch TV. He then proceeded to sit on the couch and watch TV for the next 5 hours, I sat there truly dumbfounded! Then this morning I went down to wake him up for clinic and he was already up taking his BLOOD PRESSURE and other vitals. I was again stunned, and then chastised myself for being so stunned, because it hit me all at once that this was happening because I finally gave it to God. I realized that this whole time I have been struggling for the answers and help and this whole time the Lord has just been waiting for me to release it to him. You would think that after all we have been through I would have realized this a long time ago! BUT NO- I had to be the stubborn one. Here I was being a fretful parent because David was acting like a disobedient child, but I in turn was also acting that way to the Lord. Oh how he must have been fretting over me these past weeks!
Then today in clinic our wonderful nurse Bonnie came up with a fantastic STRUCTURED plan to keep David on task and to do the things he needs to be doing. David was thrilled with the plan and is excited to try it. If he does it exactly as laid out for him for the next 7 days they will in return grant him another weekend pass home, with some conditions of course! In addition to all of this they also gave him set goals he needs to accomplish before they will release him for good, he was excited about this and I can tell that he is ready to make a difference. After we left the doctor he told me " we need to make a list of things to do everyday and just do them, I am going to try harder." My heart was so happy!! Then tonight when we got home from the hospital, instead of going to straight to his bed, he changed into his swim trunks and went down and swam for 1/2 hour! PRAISE GOD! I know that Gods Glory is being shown through this, but I am also keeping our nurse Bonnie's words in mind, she told me today she was being "cautiously optimistic":)
These events have strengthened my resolve once again that the Lord will work wonderful things if we just ask him to and turn over our hearts to him. This is no happenstance that David has had a change in attitude this is purely the power of prayer and release from the Lord. I am so thankful that I have a sovereign God that is my protector in all things, especially in parenthood.
Oh and one more thing that has maybe helped a little:) I brought our cat, Sebastian, to the homtel this past week and he has been nothing but joy for David and I. Plus it is another "being" for us to interract with and has been helpful for the both of us!
Address Information
I am so sorry for those of you who have commented on the blog or have sent me an email regarding our new address! I don't think I ever posted the new information! I have it on the side bar of the blog under Address Information, but here it is once again.
David or Bronwyn Kennedy
1854 W El Camino Real #1122
Mountain View, Ca 94040
David or Bronwyn Kennedy
1854 W El Camino Real #1122
Mountain View, Ca 94040
Wednesday, May 6, 2009
Some stuff to Ponder......
Tomorrow we go into clinic and I deeply nervous about that visit, only because there has been little to no improvement in David's attitude this week. I know the team are working on a plan together and I am anxious to see what they come up with. Then on Friday he has his therapist appt and she has asked that I come with him as well, this came about after she talked to the nurse and found out that David wasn't being honest in his sessions with her. So we have an emotional 2 days ahead of us, and I am asking for some big prayers here! Here is what we need as a family in regards to prayer:
- That David really listens to the doctor and other staff and is lead to really change his behavior and attitude.
- That his heart would soften to the fact that we are all just trying to help him, not nag him and be on his case all the time.
- That the Lord will give David the strength to make these changes.
- That David can really be honest and let go with the therapist and be open to her suggestions.
- That he will start getting on his knees and asking the Lord for help through this and ask for the desire to change.
- Please pray for my husband and other children that they can stay strong just a little bit longer.
- Pray for me that I will continue to have a joyous heart even though it is some days really hard to be joyful for two of us.
Tuesday, May 5, 2009
Down on my knees
I know I haven't been blogging as of late, and I am deeply sorry for that! I am just so frustrated with this child of mine! He has been given such a gift of life and he is just throwing it away, it is making me so sad. Nothing has changed since the last posting and we had a huge meeting last Thursday and the doctors set him straight as to how things have to be, including telling him that he is not going to be able to leave unless he makes some serious changes. They also told me that I can not remind him of things such as his vitals and other low maintenance stuff. I remind him every day that he needs to get up and walk and get out of bed, but he is an adult and I can't physically make him get out of bed! Boy do I wish I could! He has to want this and so far he hasn't shown any wanting..... he is deeply depressed and I get that, but he has to start changing his behavior.
He had such a major trauma in his life and I accept that and more then anything I want to help him through it, we all do, but he has to want us to help him and so far he doesn't. He knows what he needs to be doing, he is CHOOSING not to do it. It is very hard to sit and watch your child almost die not once but four times in the hospital, but it is even harder to sit and watch your child give up on his brand new life. The hospital was the easy part this part is the hardest thing I have ever had to do.
Most of the time I keep my feelings on all of this bottled up inside, because I have felt right from the start that this whole situation was not about me, but about David. Finally this weekend I released most of those feelings with a group of really close Christian women, I am so glad that I did. This experience has been eating me alive, not to mention several other "life" things that have happened along the way, it has not been my ideal past 5 months and I am so over this experience. One thing I learned, AGAIN, this weekend is I am not alone in this fight and I do not have to be alone. I am not giving up on David in the least bit but I have been so focused on him that I have forgotten about not only my husband and his needs, but mine as well. It is very easy to let the "sickness" control your life and I refuse to do that any longer.
David needs to wake up and gain control of his new "normal", it is something that he is going to have to do and practice doing everyday, because the reality of the situation is this is his life now. He needs to learn how to do these things by himself so that he can adjust to reality when we finally get to leave this place. I am ready to go home, now we must get him ready to go home. I will continue to remind him everyday that this is not just about him anymore, his choices right now are affecting everyone around him, me, his dad, and most of all his little brother and sister, he needs to realize that and I won't stop reminding him until it does. I may not be able to say, "David you need to do......." but I will tell him everyday, "David I want to go home, how are YOU going to make that possible." This is up to him right now, I have done everything in my power to be a strong pole for this boy and I will continue to do so, but he needs to do some of this on his own.
I want you all to pray for David everyday, I know you are, but really pray for him to lean on the Lord right now. Only the Lord will bring David out of this pit and I feel like his faith in God is waning and that makes me so sad. He has always been rock solid in his faith and now I wonder where that has gone. David is the strongest person I know, and I know without a shadow of a doubt that he will rise above this, because of who he is and who he wants to be. He is in a dark place right now, and by all means he deserves a little thinking time. But it is up to the rest of us to really pray and lift him up so that the darkness will leave him and he will lean on the light of the Lord.
He had such a major trauma in his life and I accept that and more then anything I want to help him through it, we all do, but he has to want us to help him and so far he doesn't. He knows what he needs to be doing, he is CHOOSING not to do it. It is very hard to sit and watch your child almost die not once but four times in the hospital, but it is even harder to sit and watch your child give up on his brand new life. The hospital was the easy part this part is the hardest thing I have ever had to do.
Most of the time I keep my feelings on all of this bottled up inside, because I have felt right from the start that this whole situation was not about me, but about David. Finally this weekend I released most of those feelings with a group of really close Christian women, I am so glad that I did. This experience has been eating me alive, not to mention several other "life" things that have happened along the way, it has not been my ideal past 5 months and I am so over this experience. One thing I learned, AGAIN, this weekend is I am not alone in this fight and I do not have to be alone. I am not giving up on David in the least bit but I have been so focused on him that I have forgotten about not only my husband and his needs, but mine as well. It is very easy to let the "sickness" control your life and I refuse to do that any longer.
David needs to wake up and gain control of his new "normal", it is something that he is going to have to do and practice doing everyday, because the reality of the situation is this is his life now. He needs to learn how to do these things by himself so that he can adjust to reality when we finally get to leave this place. I am ready to go home, now we must get him ready to go home. I will continue to remind him everyday that this is not just about him anymore, his choices right now are affecting everyone around him, me, his dad, and most of all his little brother and sister, he needs to realize that and I won't stop reminding him until it does. I may not be able to say, "David you need to do......." but I will tell him everyday, "David I want to go home, how are YOU going to make that possible." This is up to him right now, I have done everything in my power to be a strong pole for this boy and I will continue to do so, but he needs to do some of this on his own.
I want you all to pray for David everyday, I know you are, but really pray for him to lean on the Lord right now. Only the Lord will bring David out of this pit and I feel like his faith in God is waning and that makes me so sad. He has always been rock solid in his faith and now I wonder where that has gone. David is the strongest person I know, and I know without a shadow of a doubt that he will rise above this, because of who he is and who he wants to be. He is in a dark place right now, and by all means he deserves a little thinking time. But it is up to the rest of us to really pray and lift him up so that the darkness will leave him and he will lean on the light of the Lord.
Subscribe to:
Posts (Atom)