Faith+Story

 Today was my birthday and I turned 17. My birthday doesn’t really mean anything. Sure, my parents seem to make a fuss. Even my exceptionally busy sister takes the time to celebrate my birthday. But they don’t get it. They put on a brave face for me and act like I’m a normal person but they need to see reality the way I see it—pointless. See, when I was a baby, I got really sick. My body got so hot that something happened to me. My brain was damaged. I can’t control my speech and I have little control of my muscles. It almost seems like my body and soul are separate. I can see myself involuntarily reaching out but I can’t stop myself. When my family and I are out and about, I have to be strapped in a wheelchair because when I walk, I can’t keep myself from falling. I can hear and understand when others are talking but my parents don’t know it; it’s not like I can tell them since I can’t really control the sounds that come out of my mouth. I think they might know I can hear but they don’t know I understand—I just can’t speak what is on my mind. So whenever they have important conversations, they don’t bother with having my sister take me into another room—my parents talk freely in front of me.
 * [[image:David.jpg width="80" height="85"]]David **

When we started going to our new church, my mom took me with her when she went to meet with the pastor. I listened to my mother practically relive that night I got really sick; the night my parents found out that our lives were about to change in a big way. “Pastor, one night when David was a baby he was really sick. I woke up in the middle of the night to check on David to make sure he was ok. When I walked into David’s room, I saw him lying on his back with the covers strewn everywhere. I walked a little closer but then paused when I noticed his breathing was very shallow. I rushed to David’s side and felt his head; he was burning up. His temperature was 104 degrees so I called the doctor and rushed him to the hospital. Once David was stabilized; Dan and I went to the doctor’s office to meet with David’s pediatrician. He told us, ‘The good news is we were able to bring David’s temperature down out of the danger zone. We’re pushing antibiotics and fluids through him. The bad news is because of the high temperature, he will most likely have some damage to his brain. We won’t know for sure until we run some tests.’

“Pastor, David’s condition hasn’t changed since he was two. It has been a stressful life for all of us. Finding a church home has not been easy either. We have to make sure that the //entire// family will be welcomed and accepted.” I looked around the room—gazing at the multiple bookshelves full of books and Bibles. I noticed a closed door in his office. I thought what could be behind the door. Occasionally I found myself able to focus my attention on the Pastor’s expression as my mother told him our family’s story and listened as he reassured my mother.

“Donna, sometimes things happen for a reason. We don’t always know why. I can tell you that God has a purpose and a plan for everything. Some things in life are not intended by God but He can and will take what the Devil means for bad, turn it around, and get good out of it. God specializes in taking the broken pieces of our lives and putting them back together; making the broken vessel stronger than it was before.” media type="file" key="14181-4.mp3" width="282" height="32"

Pastor came out from behind his desk and sat in the blue comfy chair next to me, putting his arms around my shoulders as he spoke to my mother. He told her that God could use my testimony to help others in the same situation, whatever that meant. After a while, my mom and I left his office and went back home. I sat in the back seat of our little red Chevy as mom drove, watching the other cars speed by, drifting in and out of sleep. My mom had decided that this church, which we still attend today, was the one she wanted to stay at. She felt that this church was a place where all of us would be loved and accepted just as we are with no strings attached. My family has struggled to find a place to belong—a church to call home. Past experiences have taught my family that not all people accept others’ handicaps. I don’t know if it is out of fear or something else, but my parents wanted to find a place where all of us were welcome.

I can understand how hard it has to be on them taking care of me twenty-four hours a day, seven days a week while trying to raise my sister, who is perfectly healthy, plus work full-time jobs. I know it’s not easy. Mom is always telling Danielle how grateful she is that she is now old enough to help mom out and that Danielle is willing to help my parents whenever she can. I guess that is because she is only two years younger than I am.

It’s not fair. Why did this happen to me? Why did I get stuck being the handicapped child? I am the oldest yet my parents treat me like such a baby. I know that I can’t do things on my own, but at least they could talk to me like a “normal” teenager instead of a kid. I guess they mean well, but still, it hurts.

Today my parents decorated the house with party stuff—Happy Birthday banners stretched across the entrance between the kitchen and the living room, helium-filled balloons clung to the ceiling, and streamers decorated the kitchen table and chairs. Mom spread confetti on the kitchen table around the cake and ice-cream. Mom decorated the living room and kitchen while I sat on the sofa, helmet covering my head, watching TV. Mom gave me a birthday hat but it wouldn’t stay on my head. I involuntarily smiled at my mother; she means well but she doesn’t understand. Guests from church began to arrive a few at a time while mom hurriedly finished the last minute preparations—kissing my forehead as she walked by me. Mom loves me and wants to try to make life as “normal” as possible for me but I think it’s a waste of time to have a birthday party for me. I have handicaps; it is pointless to try to pretend that I don’t.


 * 

Donna **

Yesterday was my son’s birthday. It’s been 15 years since ‘it’ happened. I have learned to live each day as it comes. That’s the only way I can get by without crying and blaming myself. Sometimes it’s difficult to keep from thinking about the ‘what ifs’ and the ‘if onlys’. If only I had went to David’s room earlier in the evening to check on him, I could have gotten him to the hospital sooner and maybe he would have been fine. Sometimes I think about other possibilities. What if I had not checked on him when I did? He might not have even lived through the [|fever]. Each day seems like a battle—struggling to be strong for David, to take care of him and believe that one day God is going to heal my son. I’ve seen others get healed. Why doesn’t God heal David? Is the reason why God has not healed David because of something I did wrong? I don’t know.

I keep busy with taking care of David—trying to make his life as normal as possible. For David’s party yesterday afternoon I decorated the house with birthday banners, streamers, and balloons. Danielle even invited some of her friends to come over—not to spend time with her, but to spend time with David celebrating his birthday.

Danielle has been such a wonderful daughter and sister to David. I know that helping us take care of David puts limitations on her life. She has made more sacrifices than probably any other teenager would do. There have been times when the sacrifice she made was extremely difficult for her. We try our best to make it up to her when she has to give up something she wants for David. Sometimes she gives up going some place with friends or participating in athletics to stay home with David while we are at work. She has hardly complained at all about how much time Dan and I have spent taking care of David, though when she was younger, she would question why we didn’t spend more time with her. There have been times where we were not able to go to Danielle’s church activities but she took it all in stride. She has been so understanding; more than I could ever expect a younger child to be.

When I found out I was pregnant with Danielle, I was terrified. Don’t get me wrong, I love children and I love Danielle. It’s just that I was scared that I had done something wrong to cause David’s [|condition] after he was born. I didn’t want Danielle to suffer because of my mistakes.

The day I found out, I sat down at the kitchen table with Dan after David was asleep. We were just getting a handle on David’s condition. Here we were, going to have another baby and wondering if our new baby was going to have the same fate as our son.

“Dan, I’m not sure how to say this so I’m just going to say it. I’m pregnant again.”

Dan’s face lit up with excitement as he said, “Are you sure? Have you seen a doctor? How far along are you?”

“I went to the doctor today. I’m two months along. Dan, I’m scared. What if //it// happens again?”

“It won’t. I’m sure what happened with David is just a fluke thing. David’s pediatrician never mentioned that his condition could be hereditary. Everything is going to be fine.”

“I hope so.”

“At the next appointment we’ll talk to the doctor just to be sure. Ok?”

“Ok.” Donna nodded.

Danielle **
 * 

My friends were so cool to my brother yesterday at his party. I know it’s tough on my parents. I know Daddy would love to have a son he can take to football games and play ball with in the back yard. I try to do those things with Daddy, and he’s grateful, but I know he wishes David could do those things with Daddy. He’s been awesome with David, sticking around and helping out the way he has. I can tell he puts on a brave face for everyone, but I know deep down, he is hurting over David’s condition. I think my parents blame themselves—they feel guilty that I am “normal” when David isn’t. I sometimes question why this happened to my brother. What did my family do wrong? Why did this happen to my family? My parents are loving people. Why do other couples—who shouldn’t even have children have perfectly healthy kids while my parents—who love children get stuck with a handicapped kid? My parents deserve to have a normal life with normal kids. And don’t I deserve a normal life too? Sometimes I think it’s not fair that my brother is handicapped. I feel bad for him. I feel bad for myself too. Sometimes I feel guilty that I want my brother to be like me—an average, healthy teenage kid; not just for him, but for all of us. I wonder what life would be like if our family was a “normal” average family; if my parents didn’t have a handicapped kid. I know that my true friends accept my life and the way my brother is, but sometimes I think that some of my friends don’t want to hang out with me at my house because they are afraid of my brother. I think they’re afraid they will say something wrong that will upset my parents or me. I love my brother, but sometimes life just isn’t fair.

I know that God must have some kind of plan for him and for our family—I have been hearing it in church a lot lately. Knowing what that plan is, is beyond me. I’ve tried to ask God what my purpose is; what I am suppose to do, but so far, I’ve not gotten an answer. I guess I’m not supposed to know right now. I guess I have to keep living each day as it comes. media type="file" key="07 One Day at a Time.wma" width="300" height="45"

David doesn’t know what it is like to have a “normal” life; to be able to hang out with friends, to go shopping, to a school dance or game, or to even participate in sports. David cannot do anything for himself; Mom even has to help him eat. Sometimes it’s embarrassing when we go out to eat. We don’t eat out much unless we go to a place like Bob Evans—where we can sit down to eat. We don’t get takeout because David can’t eat in the car—he makes a huge mess when he tries to feed himself and trying to feed him in the car is difficult.

I know that we have to work around David’s need and there are places we can’t go because of David, which is hard sometimes, but I am glad that one place we will always be able to go is to our church. I think that sometimes the best part of my life is being part of a ‘church family’. They accept our entire family as we are. They treat David as part of them—almost as if he weren’t really much different than anyone else there. It’s a place all of us can belong.

David **
 * 

I’m getting ready to go to church today with my mom, Dad, and Danielle. It’s always nice to see people at church. There are always people each week that will stop and say hi to me, pat me on the shoulder or shake my hand. Sometimes, if Mom spikes my hair, girls will come up and touch my prickly hair. I don’t mind that. It gives me a minute to think about what might have been if I hadn’t gotten sick and stuck in a wheelchair the rest of my life. Sure, lots of people are praying God will take away my handicaps and I will be able to talk and walk without loosing control, but I am not sure that God will heal me; though I really want to believe that He will. Since I can’t even speak, how is God going to hear my prayers anyway?

I just sit there and let them play with my hair—it’s no skin off my nose. You never know; besides, it doesn’t hurt me and it makes them happy. Sometimes I think that maybe others that pray for me will have enough faith that God will heal me. Sometimes I just get tired of hoping to wake up in the morning and be different. But in those moments when girls actually pay attention to me, I really wish hard that my life could be different.

I like to dream that I’m just a regular guy and girls are calling me every day on the phone just to talk to me; wanting and hoping for a chance to go on a date with me. All the phone calls would make my sister jealous—not of me, but of the fact that I am the one tying up the phone line instead of her because then she doesn’t get to talk on the phone to her friends nearly as much because I am always talking to girls. When some of Danielle’s friends call, they want to talk to me too. But it’s all just a dream.

Danielle does tell me when her friends from church call her and tell her to say hi to me for them. It’s nice to be thought of. I am not really jealous of my sister—I love her. I do wish I was not handicapped though. I would not wish on anyone to go through what I’ve had to go through in my life. Believe me, it’s no picnic.


 * 

Donna **  The handicap bus came to get David for school this morning. Like every day, I help the driver get his chair on the lift, then climb the three steps onto the bus—meeting David at the top where the lift stops to move his chair into a spot in the front of the bus, strapping his chair down so it doesn’t move. Dan and I don’t feel safe getting him a battery-operated chair because David can’t control his movements. One false move and he could send that chair flying. We just can’t take a chance with his safety.

I imagine that he would rather stay home, but I have to send him to school. Even though David is handicapped, he has to go to school, it’s the law. Since I can’t work it into my schedule right now to home school David, I have to send him to the school for special-needs kids.

The special education teachers at the public school do not teach kids like David to my satisfaction so I send him to the private school for special needs children across town. It won’t be for much longer though. I am working on my second degree in education. I plan to get my degree in elementary education and teach special kids like David. I already have the special education license. Maybe someday I’ll even open up a school for special needs children if God calls me to do that. Of course, I couldn’t run a school on my own. I know of a few other ladies at our church that have teaching degrees. Maybe they would consider helping me. I know David would love to be at home with me. I see it in his eyes every time the special bus comes to pick him up. Sometimes I think I see fear in his eyes. I worry that the days he comes home with bruises are because of abuse and not just ‘accidents’ as the school supposedly reports.

 I know my mom means well, but what good does it do to send me to school? I would rather stay at home with her and have her teach me. My mom is a teacher but she is going to school for another teaching degree. That makes me jealous sometimes that I have to share my mom’s attention. I can’t wait until she is done with school. Then I will have more time with her, I hope. She used to read stories to me when I was a kid. Then as I got older, she quit reading so much to me. I think she believes that I can’t understand the book, but I can. I miss hearing my mom’s voice. It doesn’t really matter anymore what she reads to me, as long as she spends the time with me. I know sometimes I don’t seem very thankful for my mother. I wish there was some way that I could let her know how much I appreciate her.
 * [[image:David.jpg width="102" height="108"]]David **

I also wish I could tell her that sometimes the other kids are mean to me. I think those kids are mean to me on purpose. I think mom is suspicious of the school but it’s not the teachers that she needs to worry about. It’s the other kids, though sometimes I think my teachers could do more to keep me from getting hurt. Mom dreams of opening her own special education school. I hope that she thinks about the kids she allows in the school. I know it’s kind of selfish but I don’t want to share my mom with a bunch of mean kids. She is //my// mom and she should be //my// teacher.

 I sort of had a fight with Mom. I wanted to go out with my friends but my mom told me I had to stay home and watch my brother because my mom and dad had to go to work. It’s not fair! Sometimes I hate it that I have to be the ‘responsible big sister’ even though my brother is older than me. I try not to let my parents know how angry I feel that have to give up so much because I know they count on me to help them, but this time I couldn’t help it. It just sort of came out. It is just so hard when I don’t get to have a “normal” life; I’m not the one who is handicapped. Why can’t //I// have a “normal” life? Sometimes I think mom and dad rely so much on me to help them with David that I miss out on a lot of things I want to do. My parents try to arrange their schedules so that I get time for some things, but sometimes they can’t—like when my mom has to go to her classes—and I feel like I miss out because of it. What will they do when I graduate from high school and want to go to college? I can’t put off college like I put off other stuff. Mom says how important an education is so how does she expect me to get one if I have to help out with David? It’s a problem. Maybe they think Mom will be done with her degree program by the time I start college in about two years. She says that when she gets done, she will be able to spend so much more time taking care of David and I will have a lot more free time to do other things I want to do. I really hope so. Taking care of David can be overwhelming at times.
 * [[image:Danielle.jpg width="90" height="106"]]Danielle **




 * 

David **  I feel better on the days my parents take me to church. I feel loved and accepted. It’s those days that I go out with my parents between the services at church that makes me feel like I wish God would just take me home, like today. I went with my parents to the store. I think they thought the drive through town would make me happy, though sometimes I think they take me out to get me to take a nap—they know how car rides in the afternoon make me doze off.

When we got to the store, Dad helped me into my chair. Dad pushed my chair while Mom pushed the cart. Everything was fine, at first. I watched as my mom pushed the cart, filling it with groceries—fruit snacks, hamburger, chicken, bread, cheese, chips, and Pepsi (Dad’s favorite). My dad would talk to me and every once in a while, he’d point to something he knew I liked to eat and tease me about getting it. My dad is a riot. His teasing and joking manner often puts me in a better mood when I am sad. He’s been an awesome father to me.

Then I saw some young kids peering at me from around the corner. I heard them whispering. I bet they thought I couldn’t understand them, but I did. They were laughing at me and calling me names. That hurt my feelings and I felt horrible the rest of the day; I almost couldn’t eat a bite, I felt so bad. My mom noticed the change in my behavior. I didn’t want to worry her, so I ate something to make her happy and not fuss over me not eating.


 * <span style="font-family: 'Book Antiqua','serif';">

Donna ** <span style="font-family: 'Book Antiqua','serif';"> Every time David has a bad day, I just want to fall on my face and cry. It is so hard to see him struggle through life. Not any control over his speech or anything else. He is totally dependent on others to help him do the day-to-day things like eating, bathing, and going to the bathroom. If I didn’t have faith that God will see us through, I don’t know where I’d be. Life has been so hard; I might have given up—not too many people could handle caring for a handicapped child.

David had an episode yesterday when Dan and I took David with us to the store. Kids were being mean to him and David was completely helpless. I know David was in one of his moods after that because it was almost like pulling teeth to get him to eat. After dinner and David was asleep, I sat in my chair in the living room and cried for David. “God, why does David have to continue going through this? How much is David going to have to endure? How much am I going to have to endure? I feel like I can’t take much more of these days. I feel like I am almost to my breaking point.” I opened my Bible and began to read and I was reminded of what Pastor says about how God takes the bad and turns it around and gets good out of it. I felt myself beginning to calm down enough to rest. Tomorrow will be a better day.

<span style="font-family: 'Book Antiqua','serif';"> The teenagers and the youth pastor prayed for me again today during youth church. I know they really care about me—they want to see me healed; they want for me not to be handicapped anymore. When Kay saw me she said, “Here comes my boyfriend!” She was teasing a bit. Sometimes the girls pretend to fight over me. They mean well and it makes me feel like I belong and they accept me as part of their group. I just hope they aren’t doing it out of pity for me. Sometimes I have enough pity for myself. I don’t need other people’s pity—I just want people to treat me as a normal person. I don’t think that’s too much to ask.
 * <span style="font-family: 'Book Antiqua','serif';">[[image:David.jpg width="101" height="107"]]David **

<span style="font-family: 'Book Antiqua','serif';"> Tonight was an awesome service at church. I prayed for David. I also prayed about what God wants me to do with my time. Pastor says that we don’t have a lot of time; he preaches that God is about to take His people to Heaven soon.
 * <span style="font-family: 'Book Antiqua','serif';">[[image:Danielle.jpg width="90" height="106"]]Danielle **

media type="file" key="01 Heaven in the Real World.wma" width="300" height="45"

The most awesome part of tonight’s service was when my friends in youth group, the sponsors, and Pastor Bobby prayed for David. I feel in my heart that God heard our prayers and is about to change our lives in an awesome way, though I don’t yet know how. Maybe God is going to heal David soon and he will no longer be handicapped. Maybe God won’t heal David now and that the purpose for David’s life and ours is to help other families overcome the same difficulties we’ve had to face. Who knows? One thing I do know is that when David gets to Heaven, God will make him whole if He isn’t already when he gets there. I know this because Pastor Duke said that in Heaven, everyone will have a glorified body—we will have perfect bodies because there will be no sickness and no tears in Heaven.

I have decided that I am going to do the best I can. I am by no means a perfect daughter or sister. I know that I will have good days and bad days. But why should I let the bad days take away the good? Even though my family and I do not have what I would call a “normal” life, we do have some really good moments. The good moments are what make life a lot more bearable. I know I’ve longed to have a normal life, but at what cost? Certainly a “normal” life is not worth not having David at all. Life would not be the same without him. I’d rather have David the way he is than not at all.

<span style="font-family: 'Book Antiqua','serif';"> We went to church this morning. Pastor’s been talking about having faith and believing for miracles to happen. I don’t think I have any faith left. Pastor says that you have to keep praying and believing that God is going to answer your prayer and claim your miracle by faith even if the miracle hasn’t happened yet. I have pretty much given up on praying for myself. Lots of people have been praying for me. Pastor also says that God always answers prayer. I’m not sure about that. I’ve prayed, so has the entire church, for God to make me better, but so far—nothing. Pastor says that sometimes, when people pray, the answer is yes, sometimes the answer is no, and sometimes the answer is not now. Seeing as how I am still the way I am, God is either saying no or not now, to me being healed. Pastor says that we aren’t supposed to give up—to keep praying and getting prayed for until the miracle is received. I guess it wouldn’t kill me to talk to God.
 * <span style="font-family: 'Book Antiqua','serif';">[[image:David.jpg width="102" height="108"]]David **

“Dear God, Pastor says all the time that we should keep praying until we receive our miracle. He also says that sometimes, when we are going through a terrible time that it is because either we have sin in our life or it is a test from you or simply that bad things do happen. You never promised us a life without problems but you promised you would always be with us through the problems. Seeing as how I’ve not been “normal” since I was two years old, I’ve come to the understanding that maybe you’re testing me, or it’s just a bad thing that wasn’t part of your perfect plan for me. I guess the Devil tried to mess up your plans for my life but you are going to take this bad thing that has happened and somehow get good out of it. What that will be, I’m not sure of. Even so, I’ve been asking for you to make me whole again, but so far, nothing has happened. Please, God, my greatest desire is to be like everyone else, a whole person with no handicaps. Please help me. Thank you.”


 * <span style="font-family: 'Book Antiqua','serif';">

<span style="font-family: 'Book Antiqua','serif';"> Donna ** <span style="font-family: 'Book Antiqua','serif';"> The sermon at church yesterday really caused me to think about my life. It caused me to think about my ‘poor me’ attitude I sometimes allow myself to have. As part of my daily routine, I opened my Bible to read my daily devotional before going to bed last night. I realized that I need to stop trying to rely on myself; trying to carry the burden of David’s situation in my own strength.

I spend too much time playing the ‘what if’ game in my mind. I realized that there is no way I can change what happened. However, I can go on with the present and the future. I can trust in God to help me and my family to live each day to the fullest and make each moment count for something. No one can pull themselves up by their own boot straps as Pastor says. I don’t have to rely on our own strength; God has everything under control. I realized that God doesn’t put on me more than what He knows I can handle, though, at the time, I may think that I can’t handle it. David’s situation is causing my faith to stretch and to grow. I have decided that to blame myself for what happened to David is not what God would want me to do. Each day will still be difficult, but I need to fully rely on God for strength to make it through. I know that God has a plan for our lives. I can trust in God that He will work everything out for good and that somehow our situation will encourage other families in their difficult situation that they can have faith and hope that everything will work out somehow. Our suffering is not in vain.

<span style="font-family: 'Book Antiqua','serif';"> Something unbelievable happened to me! I had a dream the other night. I’ve been thinking a lot about this dream; it was totally cool! In my dream I was in Heaven! I could walk and talk just like regular people do! I was whole like everyone else in Heaven. When I got to Heaven I was welcomed in and I got to see God. It was awesome. media type="file" key="05 I Can Only Imagine.wma" width="300" height="45"
 * <span style="font-family: 'Book Antiqua','serif';">[[image:David.jpg width="102" height="108"]]David **

I can’t wait until I get to Heaven. Pastor says that when people go to Heaven, they get a glorified body. There will be no sickness in Heaven. Or tears. Or pain. Pastor also says that when we get to Heaven, we will be given a mansion and the streets are paved with gold. He also says that when we get there, we’ll get to have a big banquet—we’ll actually get to sit down with Jesus and eat dinner just like the disciples did in the Bible. I’m so excited!

[|Soon and Very Soon]

I’ve come to realize that even if God doesn’t make me whole now, once I get to Heaven, I will be. I have hope I won’t always be like this and maybe I can endure a bit longer. I just wish that there was some way I could tell my parents how much I love them and appreciate everything they do for me now. I don’t know what I would have done without them. I am so glad that once they found out that I was going to be different, they still loved me and kept me around. I know that sometimes I seem ungrateful and whiney; but I really couldn’t get along without them.