The Jackson Family Online

Hey all…

We just had the most beautiful moment with our girls and as a family. Build a Bear actually came to our house and the girls were able to pick out outfits/accessories, they were able to put the heart in the bear (Mark got to put one in too), they also got a ton of extra stuff. Overall I was blown away by the whole experience and realized right away that the whole thing was 10 times better at home than it ever would have been at a store. The lady that came (Kathy) was wonderful and so appropriate with the whole thing. Mark was able to record a message that will play whenever the girls push it. I can’t tell you in words how special the whole thing was but as lauren said later on “That was awesome”. The girls both went to sleep with their new bears. A huge thanks to Melissa and Dan for thinking of the idea and for calling a corporation on behalf of their brother. Also a huge thanks to Lori P. for helping the build a bear lady find our home and for taking care of things on this end. Sometimes a stuffed animal is really a lot more than just a stuffed animal and tonight it was for our girls. It’s so good to have something tangible to hold on to. I had the job of taking lots of pictures, it was hard but you know…someone has to do it:). Good night to you all, thank you for your continued love and support. Sometimes I would think maybe you would all be weary of hearing about the infamous Jacksons…and the details of our lives…thank you for caring.

Love,

Ruth

It’s been a full day…Mark’s parents came back down to our house last night to stay. Our deal had been that they would go home but at any change I would call them and they would be right back. This weekend for us has brought a lot of changes. I believe now that Mark had been on somewhat of a “plateau” for the past two weeks, hospice says this is normal before a decline. We have enjoyed a lot of special times in the past two weeks and tried to live to the full. We’ve attended church, school functions, gone to the park, out to eat, to Walmart and Even threw in a limo ride and a Billy Joel concert. I think we’ve lived as fully as possible. Times are a little different right now. Mark and I tried to go to the eye doctor today and we did actually make it to the place and Mark started the appointment but was not able to make it through without coughing and gagging and overall feeling completely embarrassed. The doctor was kind and compassionate but still even in Mark’s state of mind he knew he just needed to go home. Between his sister, Melissa and a friend Lori they have arranged for Build a Bear to come to our house instead of us having to go to the store. I am grateful that they arranged this, I would have never thought of it. So hopefully they will be coming later this evening. I’ll let you know how that goes. I’ll even post a few pic’s. It’s been good for me to have the second string here…even more than I realized it would be. I have had a lot of long nights, and days filled with trying to keep things normal for the girls and also trying to take care of Mark, this all has been my pleasure but…I probably was beginning to need more help. For all of you who don’t get along with your in-laws…work it out…you never know how closely you might need each other:)! My parents are kind of waiting in the wings to come down but at this point we are just trying to feel out what the coming days might be like. The hospice nurse has acknowledged that he has definitely progressed over the weekend but no two people are alike and Mark is young with a lot of will to live so that plays into it all. I am at the point where I’m giving him Ensure through his feeding tube and in fact today he hasn’t even had any. At this point it’s his call, I’m not forcing the issue. Without a doubt his cancer is progressing we just don’t know how much or where all it has reached now. I know their are those who see this as a time to slam the doors of heaven on behalf for Mark’s healing and if you are feeling led to do so I can’t stop you and wouldn’t want to. As for me…I’m not slamming the doors of anything today, I’m just seeking God’s presence and his peace. I felt a strong urge to go out and buy a picture of Jesus to put over Mark’s bed today and so I did. I just want him to be able to actually visualize the fact that God is watching over him even as he sleeps. He seemed to like it. I told Mark today…his sweet disposition and look in his eyes is such a picture of who God is and how he is alive in Mark. I can’t tell you how much his character, actions, words, etc. are Christlike to me and again I am so proud of Mark and so thankful to be able to see God in him. I only pray and hope that he sees God in me as well. Truthfully, my back hurts, I’m tired, emotionally a bit unstable, etc. and yet I have felt the power of God’s calmness and peace wash over me in some very difficult circumstances. Never thought I would be a nurse but…am thinking my experiences should count for something:). I would ask that you pray for our girls…they are without a doubt scared and truthfully I don’t have any tricks to pull out of my bag as a parent to take the fear away. I would ask that you pray for Mark, anxiety plays a big part in all of this and I just pray that he could be at peace and be able to let go and know that everything will be o.k. I would ask that you pray for me, I’m very busy right now…can’t imagine what I was thinking when I thought I would be working and taking care of him…but I have glimpses now and then of how desperately lonely my life is no doubt going to be, I know I have friends and family who are wonderful, but I hope you understand Mark has been my best friend for 21 years, I’m scared without a doubt, you wives out there you know the things you rely on for your husband to do so you don’t even learn how to do it and I’m realizing more and more that I am going to have to cover it all. I know single moms do this all the time but I guess I’m realizing that for me I am used to being part of a pair and a partnership and I’m not looking forward to being alone. Again if you want to pray for healing that’s fine but just know that those prayers are already being answered…he’s headed for the ultimate healing already. This has been a road that is like no other…

Ruth

Mark had a bad night last night…He keeps gagging and throwing up and at this point he is throwing up some blood as well. When I called hospice at 2:30am I talked to the nurse on call who told me this is all part of the natural progression of his cancer. We are all so used to having a problem and having the doctor give us something to take care of it that it is still a foreign concept for us to call about him having a serious problem and find out that it’s normal and expected and their is nothing to do about it. They may put him on oxygen and at this point he basically sleeps sitting up. He is having a hard time getting his ensure down so I will probably have to start putting it through his feeding tube. We called Mark’s parents today and they are on the road as I type coming down. I don’t know how to put it but it just feels like things have made a definite shift. The girls are worried about their dad…we all remember his constant throwing up before the whole diagnosis and it is been a jolt to go back to that sound. It is a very helpless feeling…nothing anything the girls and I can do about it really. We didn’t make it to Build a bear last night and that is the one thing that Mark still wants to make sure he does with the girls…I don’t know at this point if that will happen or not. I’m calling Pere Marquette today and canceling our plans for the week. It’s just obvious that we have crossed into a whole new territory and need to adjust our life again. I am thankful for the living we have been able to do in the last two weeks at home. Now I just pray that if Mark is headed towards heaven that he will sense God’s presence as never before. I pray that I can be God’s hands and feet for Mark. I pray that we will have a good sense of the timing…of it all. Not to be in control but to be able to tell people like my parents when to come on down and for the girls sake. I just don’t want to see him go through anymore and at this point Mark can’t take much more. Please pray for us…

Ruth

 Here is Mark with Lauren at her math competition this morning. One proud papa and one happy girl. It worked out that exactly where the handicapped seating was in the auditorium is exactly where Lauren had been placed in her school group so Mark and Lauren were able to sit by each other the whole ceremony.

The happy couple headed to the Billy Joel Concert Wednesday night in the limo.

The happy girls standing outside of the limo with our driver, Roy. This is where the girls were dropped off at their babysitter’s house, our old neighbors.

The girls each downed a soda in the real glasses in the limo in less than 15 minutes, clinking their glasses all along the way. They enjoyed the ride completely

 The man, the legend…with his trademark smirk:)…inside the limo

 

 

You can almost sit and watch everything grow today it is such a nice sunny warm day. This morning I dropped Lauren off at the middle school for her Math Team Competition. She proceeded to do math all morning…later Mark and I and Lydia went up for her awards ceremony where Lauren’s team placed second place in the whole fourth grade between 7 elementary schools. Pretty awesome…you should have seen the look on her face, it was priceless which was good because we went through a lot to make it into the ancient school that was obviously never made to be handicapp accessible. Today I climbed mountains with the wheelchair, Mark and I squeaked through very tight aisle ways and finally found out how to get the ancient elevator to the right floor where we wouldn’t have to take any steps…but it was worth it!!

People ask how Mark is doing and I’m just being honest…it is really hard for us to measure whether things are the same, worse or better. I will say in the past couple of days he has been dealing a lot more with congestion, trying to cough it all up, I know it’s gross but it’s the truth and a bit scary at times. Lydia was around today for one of his worse episodes and she stood teary eyed in the hall wondering if Dad is getting worse. We live one day at a time, and are trying to live to the full but at the same time their are definitely moments when we all have to wonder what is going on inside of Mark that we don’t see. Since Thursday between Mark and I somehow we lost his glasses so he has been dealing with that…He has an eye appointment on Monday at 3pm, his vision had been bothering him for awhile anyway so I’m sure his prescription needs to be adjusted. Tonight we are still hoping to go out with Schafers to the mall…we’ll see. And tomorrow as always we will be at The Bridge for church. We’re making every effort this next week to go to a state park about a half hour away from us for three nights, I say a park but we’re not camping:). We are actually staying in a very nice lodge with an indoor pool and restaurant attached. Just some time away to hopefully have some good relaxing family time. The hospice people are trying to work with us to coordinate Mark’s care and if needed we can easily drive back. So…that’s enough about us…hope you are all doing fine and enjoying your weekend!

Love,

Ruth

Good evening,

Just a quick update…tonight Mark and I are going along with our kids and old neighbors to the local carnival in the mall parking lot. The weather is just right and the kids are more than excited. Mark and I just woke up from a nap in our own bed, what a gift! Thank you for your responses today…I was really impressed to read the lyrics to the song All the way my Savior Leads Me, I knew I wasn’t remembering the words quite right but knew that was the song God laid on my heart and then once I read through them I was amazed how fully that song speaks of how I am feeling. Thanks John! Well it sounds like those of you in Michigan have had quite the Jackson overload lately:). The whole “break in” thing at Mark’s parents church and the following publicity have really been quite interesting. It sounds like the benefit on Saturday, May5th is going to be quite the event and I’m amazed at the things that have been donated recently for the auction, I mean who knew that places like Gander Mountain would donate a kayak to be auctioned off. It’s good to know that people rally behind people and try to help out even if they have never met us. God sure has a way of working things out for His good and it is again a comfort to find that this principal and promise in the Bible are true and trustworthy. Please pray for Melissa and those who are putting this whole thing together this week to have the strength to do their regular day jobs and to also do all of the planning and work to pull this event off. And again if you can help in anyway and feel led to do so please email us at marruth1992@yahoo.com and we will pass on your name and info to her. Mark has had a restfull day for the most part. I want to say thanks to Pastor Ben for dropping in and giving me a couple of hours to run a few errands. And Pastor Scott did the same thing yesterday. (I am still apologizing for the state of my house yesterday Scott…) Scott saw me at my most frazzled self, house a mess, no makeup, etc. and calling about medical bills, I think when he came to the door my head was in my hands and I was obviously a bit over the edge, Thanks Scott for loving me anyway and for being a listening ear. Also thanks Hillary for the wonderful Macaroni and Cheese again! This weekend we have Lauren’s Math Team event tomorrow morning, and we are going to try and do something with our friends Mark and Kathy Schafer tomorrow night, and church on Sunday. Pastor Ben joked today that he has been able to say to others “why weren’t you at church”…no one seems to have a good excuse when he can say that Mark made it:). We are also wanting to make a trip to Build a Bear this weekend. Their overpriced, no doubt but one of the things I asked Mark to do with the girls is to make an event out of picking out a stuffed animal or making one so that no matter what, they have something tangible, just from dad to hold on to. Makes bed time a whole lot easier for me and I just think that the money will be well spent. So…that’s our weekend plan. Hope you all have a great weekend as well. Enjoy the great weather!!

Love,

Ruth

Good Morning all,

Well last night was a long night here at the Jackson household. Mark had a really hard time settling in to sleep. Sometimes he just gets very restless, mostly when he is overtired. His mind is very active and gets anxious and then he has all kinds of dreams which leave him feeling more restless. Then throw in some congestion and coughing and you have the ingredients for a rough nights sleep. Currently, he is resting …I’ve told you that he prays regularly for a new body, in fact in the hospital or whenever anyone asks him how they can help he tends to ask for a new body:). Another of his big prayer requests is for direction…Now this is a scary one for us right now. We’ve faced a lot of forks in the road so to speak as I’m sure you all have. I had some time to think last night so…let me just say that in 15 years of marriage we have moved 8 times. Mark has changed jobs at least 9 times with a few part time or side jobs thrown in between. I have changed jobs easily the same amount of times. We are the only ones out of both of our immediate families that live out of state, basically out of the one hour radius of our parents. Life is full of twists and turns for everybody, but I guess my point is as stressful as some of these things have been, moving, job changes, financial issues, kids, etc. once we pray and choose a direction I believe that whatever we passed up by going to the right or left is something we don’t have to think about anymore…we just keep moving forward and God keeps laying out the road in front of us. We’ve always wanted to be in the center of God’s will but in that process have discovered that God does give us choices to make within some designated boundaries and whatever we choose we just move forward from there. There isn’t always a “right” or “wrong” decision to make. And I’m finding that we all have an innate desire to have a sense of direction, a plan. Now I know some people suddenly go in to the mode of calling names and labeling this as being a control freak, but tell me one person who doesn’t want to have some kind of direction in their life…we all do. It’s been very difficult for Mark to realize that at this point there is no plan for him, or so it seems, their are no further courses of treatment, except comfort. And truthfully we have really sensed that we have come to the fork in the road of healing or death. It’s hard to not feel like we are just marking time right now. In our human nature we all want to be moving forward, and I know the next spiritual cliche here is the whole fact of “waiting on the Lord.” We get that honestly we really do. But this fork in the road is different, you see in the past if we chose to move, to take a different job, have kids, etc. their are consequences but not life and death consequences if you know what I mean. In this situation when we pray for direction we are very aware that it might not be the direction we think we would like and the finality of this process is a bit terrifying for us. When Mark was praying for direction last night, I had to stop him for a minute and be honest and say do we really want to move down the path of death or do we just want to enjoy marking time for awhile. There may be some who bring up the whole faith issue…does Mark believe that he can be healed, does he have enough faith, etc. to that I would just say we all have known of many people who have been saints who have not been healed. And this is where people talk about “ultimate healing” in heaven. Yes Mark does believe and has asked in faith and if he is not healed it will not be because of his lack of faith. In fact I would warn you if you come up to me and even hint that you think he hasn’t been healed because of something he has done I will (Guaranteed) come unglued with you. The only comfort right now is knowing that this whole situation is for once so out of our control we really can’t screw it up. Literally God will have to lead us on. The hymn that came to my mind last night was “All the way my Savior leads me what have I to fear or dread.” I need to look up the rest because I can’t totally remember the words but I sense that we are moving forward one inch at a time, probably not marking time as much as it seems and God is literally walking us down this path. I’d like to say we have received some word from the Lord about being healed and yet that would be a lie, we really haven’t. So…we keep walking through each day, holding God’s hand and each other’s hand and trying not to fear or dread.

Looking forward to a nap today…

Ruth

Wow, I woke up this morning singing, having all kinds of billy joel songs going through my brain. The limo ride was awesome…especially for the girls, they thoroughly enjoyed getting a soda out of the cooler and drinking out of the real glasses, clinking their glasses all along the way. They had dressed up for the occasion, make up and all. Mind you they were only in the limo for probably 15 minutes but for that time they enjoyed every second. Lauren was fascinated with the ceiling, she is an artist to the core. I enjoyed the great blessing of not having to drive through traffic and having to take care of a car as well as Mark. Thank God for the wheel chair…couldn’t have done it all without it and I was impressed that at Scot Trade Center when I rolled Mark up the workers there were awesome about getting help for us right away. The seats were great, we saw where we would have been sitting if we had not changed our tickets to handicapped seating and we were praising God we didnt’ have to try and walk through that row of people. The concert…well of course it was awesome. Billy Joel simply oozes talent. I mean I consider myself a musician but wow…he makes everything look so effortless and natural. His whole band was awesome. And truthfully it was my kind of concert. I love some good piano playing and you would think a man as old as he is would have some arthritis but if he does it sure isn’t slowing him down. The ride home was good as well. Mark was totally exhausted and in some pain but he just laid back and I kept his pain button pushed. This is a big taboo in the medical field that I would touch his pain button but…I’m just being honest and truthfully I don’t care at this point, he needed to rest and was very concerned that if he slept his pain button wouldn’t get pushed. So at that point the greatest act of love I could give him is the assurance that he could rest in peace and I would take care of the pain for him. My how times have changed. Years back I’m sure we would have been making out in some form or fashion in the back of the limo (yes we are normal) but as I looked at Mark last night the changes in our life are so obvious. We rode in silence all the way home, him sleeping and me holding a button in my hand pushing it every 10 minutes. Once we got home the driver and our old neighbor helped me get Mark into the house and into bed. Where we both proceeded to collapse. A big thanks to Richard and Idonna our old neighbors who watched the girls last night.

O.k. those are the factual details now for the thoughts and feelings. Over the years I have often struggled feeling envious of couples who have lived on a budget, they have no debt, have made all the wise decisions, their future is taken care of, they’ve saved and then bought, etc. I have beat myself up over the years that we haven’t always taken the high road there. Finances have been hard for us from the get go, from the day we married we had student loan payments as big as most people’s house payment and Mark was going to school for the first two years of our marriage. Mark and I both chose careers that are not exactly high paying, pastoring and teaching. And for several years I wasn’t able to find a teaching job so I worked jobs here and there. We have not climbed the ladder financially…in fact many times we made decisions that we felt God wanted us to make but that actually gave us less pay. I say all of this to say, I have beat myself up over the years for the amount of debt we have carried. We have lived life all along the way, we have gone on vacations, gone to concerts, out with friends, etc. when truthfully we probably didn’t have the money to do so. That all being said, last night I sat with Mark at a concert that was unreasonably priced and realized that I’m so glad we have made the decisions we have made. We didn’t know what the future would hold, still don’t but I find myself looking at things differently. We have lived every day to the full. We have not turned down an opportunity to do something with friends or family. And at this point it is a comfort to me that we have not stockpiled for the future but instead have made memories along the way. Last night was just another one to add to the pile. I sat at the concert last night and was so grateful that God granted us our desire to be able to go. Things could have been very different. I know a billy joel concert on God’s scale is probably a drop in the bucket but that is the whole point, the fact that he would care about that tiny detail in our lives assures me of his love and care for us. Nothing goes unnoticed by him. Thank you for praying for us last night, I know we needed it and felt it. We were there from the beginning right up to the end. Mark was never one to want to leave a concert early:).

Life has changed and their is no question about it. I have now slept in a recliner for over three weeks, in fact I can’t hardly remember sleeping in a regular bed. Thankfully we have a comfortable recliner. It’s hard for me to picture Mark getting back to anyplace that I would consider normal. I know we are all praying for a miracle and I know it can happen, it’s just hard for me to picture. I think back on all of the things I have taken for granted over the years and know that I will never take them for granted again. Anyway Mark is calling at the moment, needs medicine, bandages to be changed, etc. plus the hospice nurse is on the way to change his pain medicine I guess I should get ready for the day. I need to clean my house today, at least then I feel like something is under control:)

Again a huge thanks to Mark’s work…I have no idea why since Mark only worked their about 4 months before this whole thing began but for some reason this national company where Mark is probably just one of thousands of workers (I’m guessing at the number there) has helped us in major ways. Mark’s disability payments are helping us survive. The fact that they would actually read this blog and even care amazes me. The fact that they would hold on to his job indefinitely is amazing. The fact that they would call and stay in contact in a concerned way…wow. And the fact that they would care about us going to a concert is incredible. They were the source of the limo ride and the changing of our tickets to handicapped seating. I can’t imagine how stressful the whole event would have been without those details. I wish I could mention everyone by name, but they would probably just be embarrassed anyway and I’m afraid I would miss someone but Nancy…please pass on to those who have helped and cared our geniune thanks. The words simply don’t express the depth of our gratitude we feel. We have come to love you all and are amazed that in our current state of not being able to give anything back you have loved us, Why…I will never know, you all are definitely getting the short end of the stick. Thank you! May you be blessed with the sweet feeling of knowing that you have made a difference in the life of someone who is in need.

Gotta run…

Love,

Ruth

Melissa Brown…Mark’s sister has put together an event on May 5th at the United Brethren Church on Richfield Rd. from 5-8pm. The event will involve a dinner, silent auction and also a live auction. If you are unsure of how to get to the church please email us at marruth1992@yahoo.com and we can send directions your way or give you a phone number over a more secure email. We appreciate Melissa’s efforts in putting this event together and I know she has many helping her…who we appreciate too. They had a bit of a set back today as they found out that the church had been broken into and some of their auction stuff was stolen. However I guess this is being told about on the news tonight and in the Flint Journal and who knows maybe some good will come out of what seems like a bad situation. This benefit comes at a good time since I have been taken unpaid leave for the past couple of weeks and will probably have several more depending on what happens in our future. If you are able to attend, I can guarantee you’ll have a good time…a good meal and who knows maybe make some new friends and catch up with some old ones…wish we could attend but the trip is a bit far at this point. Anyway, if you have any questions, would like to donate anything for the auction or help out in anyway then please email us at the above address and I will forward it on to Melissa, or if you have a way to directly contact her or Martha or Bob (mark’s parents) feel free to do that as well. As always thanks for caring about us and our situation…we know you all have stuff going on in your lives as well and we are grateful for how much you all have loved on us and gone above and beyond anything we would have expected.

Love,

Ruth

(p.s. one hour to concert leaving time:) Pray for Mark…he’s really tired today, could just be the rainy weather…I just hope he’ll have a good time, praise God we have a wheel chair!

 

 

Good morning…

Well the kids are off to another day of school. The days fly by, before you know it May will be here. Mark slept well, and we are trying to hold off on the whole Tylenol thing as long as possible to let his body do it’s work. I don’t know I guess their are various views on using medication so we’ll just do the best we can to do the right thing. He’s resting up right now for the big event tonight. This afternoon we’ll do the whole bathing process which can be pretty grueling so after that he’ll take another nap and then we’ll be good to go. The concert is three hours long, starts at 8pm so we’re guessing we won’t be home until midnight, which is pretty late for us as of late. We were chatting this morning about Mark’s greatest joys in the past week, along with his greatest fears, etc. I think it’s good to keep it all out in the open, get it out and then it usually doesn’t seem so big. Mark’s greatest joys this past week were the days we really worked hard to make it to Lauren’s event on Saturday and going to church/out to eat/walmart on Sunday. They were gruelling days physically for Mark but worth it. So…that lets me know again that it is far better to keep trying to get out and do things even if it is hard rather than just stay home. I think we have a pretty good balance at present. Lauren’s teacher took pictures of Mark and his dad at Doughnuts with dad last friday at school and set home a copy for each of the girls to keep, they turned out really nice. And I am not sure if I mentioned it or not but I already signed us both up to go on Lydia’s field trip, we will forgo the bus ride this time though and just follow behind:). This coming weekend Lauren is involved in “math team” at school and they have their big event this saturday morning at Alton Middle School, after last Saturday I think we have the routine down and can probably be smoother about the whole thing:). Today, I’m going to try and take our cat Daisy to the vet…as much as Mark says he doesn’t care about the cats to everyone…even he said he was concerned about her last night, she has not been walking on one of her legs for the past few days and we’re not sure what is wrong. She’s been hiding out and not doing any of her normal stuff around the house so…we’ll see hopefully today what is wrong with her. We’re not big pet people but…after five years I guess she has grown on us a little:). Was nice to get some rain…everything looks greener today already. I am so enjoying the time off with Mark even though it’s not normal time by any means, just good to be able to focus on him and the girls more. I’ve always craved the life of the “stay at home” mom, not that I wanted it to happen in this way but at the same time, I think we have to enjoy every blessing we can as we go and for me right now it is a blessing to be able to be at home.

I look forward to writing about our event tonight probably tomorrow morning…until then have a great day,

Ruth