Journey Into the Unknown

I don't really know how to begin so I guess I'll just start writing and see where it takes me. In the past, I've shared some of our story - my health issues, downsizing to pay medical bills, etc. I thought the past eight years must be the hardest times of our lives. I've endured countless hours of unbearable pain. The children have learned to be self-sufficient because there have been many times when I've simply had to tell them to do it on their own. At the same time, they are compassionate, loving children - partly because I tell them every day how precious life is and how much I cherish our time together. When I first became sick, Chris had numerous responsibilities. He was helping with the children, cooking dinner each night, taking care of the house to the best of his ability, and working a full time job.

As the years have passed, we've had our ups and downs. I've felt better or worse. I've been in and out of the hospital and I've spent countless hours in doctors' offices. We've tried more medicines than I can remember; some have worked and some haven't. I really thought those would be the worst years of my life. It sure seemed like it. I guess I may have been wrong.

A couple of years ago, I began to notice that Chris was becoming increasingly confused. If I asked him to pass the salt, he would hand me the pepper. If I told him to go right, he would go left. If I asked him a question, his answer would make no sense. As I saw him become more confused and disoriented, I would complain and tell him he needed to pay more attention. We began to fight more often and this is something we just never did, especially in front of the children. (We still try never to do this.) Finally, I started asking him if he was having problems at work. I figured if he was that confused at home, surely he was having difficulty at work as well. He denied having any problems at work. He insisted that everything at work was fine.

Last month, he called me from work one day and told me that he had been "terminated." I replied, "What in the world does that mean?" He has done the same job for over 20 years and he has worked at the same place for 18 years. We didn't make a lot of money, but we made enough to keep our heads barely above water (with occasional help from family and friends). More importantly to us, his job provided us with health insurance and our children would have been eligible for free college tuition (since he worked at a private Christian college). Last month we lost not only his income, but the benefits as well.

The next day, I went to the social security office and the health department. I very quickly found out that we weren’t eligible for anything yet because he still had “income.” Although he had been terminated, we had several problems. First, we had to take a voluntary resignation in order to keep our health insurance for three more months. If we had not done this, we would have lost our health insurance that day. With all my health problems, that was not a choice at all. We needed to talk with my doctors and try to come up with a plan about how to ensure that I would be able to get medicine, manage my clotting disorder, etc. We figured we could also use those three months to try to figure out what was wrong with Chris. Did he have some hormonal imbalance? A brain tumor? Lack of minerals that was causing confusion? Or did he simply need a break? (He had been working for several years with no more than two or three days off at a time and frequently had at least two weeks of vacation left at the end of the fiscal year.)

Because we took the “resignation” instead of “termination,” he would not qualify for unemployment. That was one thing we found out immediately. This is one way they “get you.” The system is set up so that you can work for three or four months and then do a horrible job somewhere and get FIRED, even though you may even deserve it, and you can draw unemployment. (And I realize there are many people who have been fired through no fault of their own who need and deserve unemployment, but there are also many who shouldn’t be allowed to have it.) But in a situation like ours, we really didn’t have a choice since I needed that health insurance. And we were at least grateful that he would have this for a few more months.

The second thing we figured out very quickly is that it’s also very difficult to get any kind of help from anywhere. You drive 20 or 30 minutes each way, spend $15 in gas and then you find out that for SOME reason you don’t qualify. Over the past month, we’ve been trying to figure out what resources are available. I’ll tell you about just the past few days.

Wednesday I drove 25 minutes to a local food pantry. After I filled out paperwork, the man told me to drive around to the side of the building and he brought me out a box of food – ONE BOX of food. There were about 10 cans of vegetables, a loaf of bread on top, a box of hamburger helper, and a few other miscellaneous items. I cooked half that food that evening. It was GONE within a matter of a few hours. How long do you seriously think one box of food is going to last seven people – including two adults, two TEENAGERS, two preteens, and one elementary age child? These kids eat like crazy! And no, they’re not a bit overweight. They just eat a lot.

Anyway, I explained our situation to the lady and she gave me a list of agencies and phone numbers. She recommended that I call them and find out what other resources might be available for us. She said to call right away.

I also called a few of the agencies to see what services they provide. I was mainly looking for food and advice. We seriously need advice at this point. We’re not used to living in the “system.” We have never wanted to be in the system and we’ve done everything in our power to stay out of it. Thankfully, we’ve had very little, but we’ve made it work for us. Now there is just no way we’re going to be able to make it. I wanted to find out if anyone had any recommendations I hadn’t already considered.

I called one food pantry about TWO MILES from my house and asked about getting a food box. The lady asked me my zip code. I told her it was 37659. She said we HAVE to have a 37615 zip code to get food from the food pantry. I told her who it was and she knows who I am. (That particular food pantry is run through the local library and we go there a lot.) She said it didn't really matter who I was, if my zip code wasn't 37615, then she couldn't help me. The food pantry with MY zip code is a 30-35 minute drive from my house because we live in a weird place where our zip code is way out in the middle of nowhere. We are right next to Gray, but our zip code is for Jonesborough. Again, another problem with the system. Let's make people who already don't have any money drive all the way ACROSS town to make sure that they are using the correct food pantry with the right zip code. It's insane!!

I called a couple more places and of the three places I called, I decided to make an appointment at only one. The main reason for this was to save gas. I thought this place could help the most because they could offer some practical advice and a food box. The appointment was for Friday afternoon.

Friday morning I received a call from the place I just mentioned. The lady wanted to let me know that I couldn’t come in for food or advice because I had just received “services” on Wednesday from the other place. I explained to her that (a) that lady was the one who told me to call her and (b) it’s not like anyone tells you the rules. She was nice and we decided that perhaps I could talk with her next week.

After I talked with her, I had to drive my oldest daughter to class. She takes a German class at Milligan College. She is an excellent student and has one of the highest averages in the class. Since all this started, she has been begging for me to let her get a job at the local Food City. They will hire workers as young as 14 so she has this plan that she and her younger brother (who will turn 14 in November) can work as many hours as they’re allowed and they’ll take care of us and all the bills. I’ve tried to explain to her that I will not allow this for many reasons. First, I appreciate the fact that she is willing, but it isn’t her responsibility to do this. Right now she needs to focus on HER life. These kids are brilliant. She wants to study linguistics and I will not allow her to be sidetracked when there are so many people out there getting all kinds of money from the government who never even try to help themselves. I want her to feel free to go to school and study and pursue her dreams. She wants more than anything to study languages and travel overseas to volunteer and/or work in an orphanage.

Our oldest son will be 14 in November and he potentially work as well. Micah has been a true scientist since he was born. He has always tested, questioned, theorized, tested some more, etc. since he was old enough to do so. I still remember when he was about 18 months old and I walked into the kitchen to find Micah “cooking” eggs in a skillet on the kitchen floor. He had gotten out the skillet, a spatula, and two eggs. He was stirring them around in the skillet when I walked in. He told me he was making breakfast. Our friends call him “the professor” and he has always been the child that I’ve said could discover some amazing new source of energy. His skills in science are astounding.

Christopher is 12 and he knows more about medicine than the average adult. He can listen to your symptoms and frequently make the correct diagnosis – from hepatitis to preeclampsia. It’s amazing. Our ten-year-old wants to be a writer and we all love to read his stories. And our youngest is only eight, but at this point, she is interested in being a mommy and having a lot of children.

I share this information because it’s important to know the people involved in this story. These are REAL children. They are very INTELLIGENT children. They are incredibly SWEET children. They’ve worked for what they have in life. We’ve always taught them that it’s better to do without than take a handout. Unfortunately, over the past eight years, we’ve had to have a lot of help with our doctor bills, but they know that this is a gift from friends and fellow believers who have helped because the Lord led them to do so.

This brings us to today. I’ve tried to keep the severity of this situation away from the children. Do I tell them or not tell them? Do we start packing or not? Should I put the house on the market? Make plans to move? Where in the world would I move anyway? Most people don’t have room to take in a family of seven and I positively will not break up our family.

Some people might suggest downsizing. We already did that. Four years ago we sold about 2/3 of our belongings, our furniture, even our home. We were trying to pay medical bills. We were paying about $700 in medical bills. I was averaging around $300 in current bills and we had about $400 a month in past medical bills. We worked as diligently as possible to pay these bills, but this is kind of hard to do when you make less than $50,000 a year for seven people and 1/3 of that is automatically taken by your house payment. Anyway, despite selling our house and most of our belongings, we still didn’t have enough to pay the medical bills and after a couple more years of struggling to do this, we filed bankruptcy two years ago. This freed up the $400 a month in past medical bills, but we still had anywhere from $100 to $300 each month in current medical bills that I incurred each month. This was frustrating. Even our church, who had helped us extensively, wondered why we never seemed to have enough money to make ends meet. It was so difficult when every time we would adjust our budget, gas prices would go up, food prices would go up, taxes would go up, etc. We simply didn’t make enough money.

Fortunately, friends stepped in again and helped us through the difficult times. Early last summer, we seemed to have everything under control and then I ended up back in the hospital. Two iron infusions left me with $1,000 co-pays each. I spent the summer trying to stay well and ended up back in the hospital in December having tests run. I had more blood clots. I was feeling better by February and took Hannah out for a special day. She wanted to ride horses and my good friend offered to let us ride. Of course, as my luck goes, I ended up coming away with a broken knee and spent the next five months on crutches. That was after a horrifying surgery and more pain than most people can imagine. Honestly, if most people had to live with the pain I endure on a daily basis, they would have given up long ago. It’s horrible. Thankfully, I am able to take blood thinners and after much trial and error, we found a pain medication that worked for me. Now I function well enough and I’m grateful for every day.

Despite the health issues I was dealing with, I felt well enough that Chris and I decided to do foster care again last fall. We had our first placement this summer and those months were heaven! We adored the little baby boy we cared for. He left a couple of months ago, but we’ve been able to take care of a few children since then on a short term basis. We always hope we’ll have another placement soon. Having children in the house is a huge blessing to us. Chris and the children and I just adore kids and we spend every moment of every day playing with them, holding them, feeding them, etc. It’s good for us and for them.

Back to Chris… After numerous tests, thus far everything has come back normal. This isn’t necessarily good news. It might have been better if something had come back positive. At least with hormone problems, vitamin deficiencies, even cancer, there are treatments available. Instead, it’s looking more and more like Chris may have Early Onset Alzheimer’s. He will be 44 in two weeks. He has been showing symptoms for about two years. Experts have developed a list of “Seven Stages of Alzheimer’s.” Based on the information at hand and Chris’ behaviors, it looks like he is in stage three. This means that when others talk with him, frequently they say things like, “He seems just fine to me!” My daughter and I just look at each other and shrug. It doesn’t really matter what they say. WE live with him. WE see the differences. WE know that his personality has changed, that he is having a lot of difficulty completing tasks that once came easily to him, that he seems unaware of the passage of time, that his personality has changed, and that he seems confused sometimes when you talk with him. Sure, if he tries really hard, he can follow along when he is having the short diagnostic tests and when he is seeing someone we haven’t seen in a while. Then it looks like I’m just making all of this up, but yet we’re the ones who see Chris forgetting things he shouldn’t be forgetting or getting confused when he shouldn’t be getting confused.

We’ll have a definitive diagnosis on November 21. Chris goes in for some more testing in two weeks and we’ll have the results a few days after that. At this point, since everything else has come back negative, I don’t really know what we’re going to do if the doctor doesn’t diagnose Alzheimer’s. Obviously that’s the last thing we want. But at the same time, if he has a diagnosis, we can count on two things. (1) There may be medications that can help slow the progression of the disease and possibly reverse some of the symptoms he is currently having. That would be great. (2) If Chris is having difficulty doing the same job he has done for 18 years, I don’t really think he’s going to be able to do another job. If that’s the case, we need to apply for disability or something. Unless there is a disability there, what are we supposed to say?!?

Regardless of what the doctor says, I SEE the problems Chris is having. I am very concerned about him and I want desperately to help, but can’t seem to do anything. Over the past year, I’ve gradually reduced his responsibilities. The kids and I have tried to take over more and more of the household tasks, financial responsibilities like paying bills, taking care of the yard, etc. When we have a foster child, this is very good for Chris. He smiles and he loves helping with the little ones, as we all do. He has always been a great father and I know he’ll be able to continue doing this for a while. Changing diapers, feeding little ones, and simply comforting a sad child comes naturally to him. It gives him something to do, it’s something he enjoys and the foster children adore him as much as he adores them. So that’s at least one good thing.

I better stop writing or this is going to turn into a book. Now that I have all the basic information put out there, I’ll just add to this blog as I find out more. Chris and I have always been very open about our lives. We agreed a long time ago that if something in our lives can be a blessing in some way to others, then we should share openly. The only thing about that now is that sometimes I think the main way we’re a blessing is because people really need to be thankful that they’re not in our shoes!! J Seriously, I’ve had many friends tell me how they thought THEY had it bad until they talk with us and whatever is going on always seems worse. But even with that, I always remind them that we are very grateful for our many blessings. We live in a FREE country. I may not agree with all that is going on and I think there are a lot of politicians who are disgracing our Constitution. They have no idea what it means or what it stands for, but we do still live in a great country. I am proud of that. And for the fact that even our homeless have more opportunities than people who live in a great percentage of the world where they may die from dirty water, lack of medical care, exposure, war, etc. I can’t imagine watching my children die from starvation because there is no food. I know without a doubt that our friends are not going to let us starve to death.

Despite our circumstances, there is much to be thankful for. One of the main things is that we have the blessing of knowing our savior. God sent his SON so that we could spend eternity with him. Regardless of anything that may happen during this lifetime, all we have to do is accept the gift of eternal life and those sorrows will be left behind once we leave this earth. What an amazing thing! And how much more amazing that this gift is offered to all of us. Not one of us is deserving. Not one. Yet we can all enjoy a relationship with the Holy Spirit. The only reason I’m not freaking out more than I am is because the Lord comforts me. I know He is there. It’s a wonderful feeling. He is in control.

Do I wish God would just come right down here and give me all the answers? Sure! Do I wish he would heal Chris? Absolutely. Do I wish I didn’t have to live in constant pain? YES! I have begged God for many years to take away the pain I endure on a daily basis, but he hasn’t answered this prayer. I know there must be a reason he continues to allow me to suffer this way. It’s not because of something I’ve “done” or not done. God doesn’t punish us that way. There are consequences to actions for sure, but sometimes good things DO happen to bad people. That’s just the way it is because we live in a sinful world. Our bodies are deteriorating. People frequently choose sin and this sometimes leads to consequences for others. If God made sure nothing bad ever happened to “good” people, then salvation would be meaningless. It would look like some people were good enough to get to heaven and others weren’t. Who should he heal? Or protect?

There are so many difficult questions and I don’t presume to have all the answers. Honestly, at this point I don’t think I have any answers! All I know is that this is happening for a reason. Sometimes I wonder if God wants us to rely on HIM to see us through this. I trust that He could do this, but honestly I do not trust other Christians enough. This is sad to say, but people simply do not live their lives in a Biblical manner any more. Part of this isn’t their fault. If the government wouldn’t tax us and then give that money out to people with no accountability, believers would be left with a greater amount of money to help the needy. Then, if someone wastes that money, abuses drugs, etc., they could counsel them, help them stop addictions (tobacco, alcohol, drugs, pornography), etc. or take away the funds helping them to fund bad behaviors. But instead, the government takes a good portion of our money to fund public assistance where there is little if any accountability. People abuse these programs all the time. And they’re usually never caught. Many of the counselors will even TELL you how to apply so that you “get around” the rules. That’s still a form of lying. If you say that you live at one address and your husband lives at another so you can report different incomes, yet you really still live together, that’s dishonest. If you sell your food stamp card so that you can have cash to buy your Xanax, that’s not only dishonest, but it’s illegal and you have a drug problem! The people helping you do this are also committing a crime. Personally I think they should invest more time and energy into stopping these kinds of behaviors and we’d all have more money freed up to help those truly in need or to keep in our own pockets for a rainy day. I’m tired of seeing money just handed out to people who won’t work, who don’t try and who sit around looking for another program they can get money from.

This is long. I’m sorry. I didn’t know where I was going to start, but once I get going, I can’t stop! I want to share this journey. I don’t anticipate that this is going to be easy and there may be days or weeks when I have no desire to share what’s going on, but I think SOMEONE needs to speak out! What happens when you have an average family who end up in this situation? How easy is it to get help? What are our options? Will people help enough to make it possible for us to stay in our house until disability kicks in? Even then, will we have enough to stay there? Are the kids going to have to go to work? What will I do without my medicine? How in the world are we going to make this work?

Check back for the next installment of “Our Journey Into the Unknown.” We have a counseling appointment on Monday and I’ll be talking with an attorney (who is graciously offering some free advice anonymously). I’ll let you all know what happens with those two appointments.

Sonya Haskins, wife of 17 years to Chris and mom to Sarah (15), Micah (14 this month), Christopher (12), Daniel (10), and Hannah (8)