Wednesday, May 29, 2013

Take No Thought

I've been watching The Jesus Storybook Bible DVD with my son and another little boy on Wednesday nights at church. Tonight something the storyteller said about the passage in Matthew 6 concerning worry struck me in a way it never has before. He said that the flowers and other aspects of creation do it right. They do not worry about being clothed or fed, because they are protected by God. The passage says that if God cares for these, then how much more does He care for us? I've heard this passage on worry numerous times, but as I thought about it in the way that this storyteller said it, it made me realize that humans are the only part of creation that seems to worry and seemingly whither away because of it. Yes, animals do get anxious at times when treated poorly, and plants die if they are not cared for by us, but they do not wear out from worry. We can.

If you are reading this, you may be going through a difficult time. You might know someone who is, or you may just want to understand those who are. Whoever you are, you have probably dealt with worry.

Everyone handles worry in different ways. Some might go to the refrigerator for relief. Some go to the gym. Some people might choose to go to addictions, others might choose to just go to bed.

When God created us in the beginning, we were perfect. Everything was perfect. Nothing died, and there was no need for worry. After sin came into the world, everything started dying. Animals die, plants die, and people die, but when this happens is ultimately up to God. We are held in His hands. The plants know this, animals have this instinct, but humans worry.

Humans are beautiful creatures, because we are created by God just like the flowers, the trees, the animals, and the seas. Worry takes its toll on us. It give us lines in our face that do not form smiles. It gives us any number of medical conditions both physical and mental. All of this because we do not allow ourselves to just surrender to God's plan like the rest of God's creation does.

This is something that has always been a struggle for me. There was one year where it seemed like I had victory over it. As I look back on that year, there are certain things for which I can attribute this change. It was a year of college where I learned about a couple of attributes of God that I had never known completely. The attribute was God's sovereignty and God's grace. I knew of God's grace based on Ephesians 2 and salvation, but that school year, I learned about God's grace and sovereignty in a new way. A room mate that I had really taught me this. She talked about God's grace, and although I don't remember everything she said, it impacted me. God's sovereignty was probably the most significant attribute of God that impacted me toward a worry-free life. God's sovereignty means that He's in control, which really leaves no room for worry. That year I was in the Word of God as well as other good Christian books. That summer I worked at a Christian camp where I loved life, and had some of the best times of my life. My worry mindset had greatly diminished. That summer I came across the prayer that Jabez prayed. I prayed it often to the Lord. I did not pray this prayer because I believed it was magical, because I do not think I had even heard of the book called the Prayer of Jabez when I initially came across it. This is a prayer of dependence and deliverance.

There were so many things that year that probably led to a worry-free year. It is hard to know what exactly helped the most, but it seems that being immersed in a focus on the Lord was significant.

It is sad to look back on that year and see that I have not had another one like it.

Yes, this past year was a difficult one. There have been other trials too, but living a worry-free life is ultimately a choice. It is a choice to cast your cares on the Lord. It is a choice to set your mind on the truth of His sovereignty. It is a choice to accept everthing that happens as a part of His ultimate plan to make me into the Christian He wants me to be.

Mat 6:25Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body than raiment?
Mat 6:26Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?
Mat 6:27Which of you by taking thought can add one cubit unto his stature?
Mat 6:28And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin:
Mat 6:29And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.
Mat 6:30Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, [shall he] not much more [clothe] you, O ye of little faith?
Mat 6:31Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed?
Mat 6:32(For after all these things do the Gentiles seek:) for your heavenly Father knoweth that ye have need of all these things.
Mat 6:33But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.
Mat 6:34Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day [is] the evil thereof.

Thursday, May 23, 2013

Go With It

As I was struggling with trying to figure out why Trenton is going through this rough patch, I was reminded of something that was said at the memorial service of a friend. His father stood in front of the congregation that knew him well, and he was able to talk about his son's illness. His son had struggled 15 years with an illness that eventually led to his death. His father said that he had never tried to figure out why the illness was happening, he just wanted to help his son. That came to mind today, and I realized, that I just have to go with it. I just have to do the daily things to care for him, and eventually, hopefully, he will outgrow these issues, or the right solution will come along.

After Trenton's birth, I had avoided reading about CHARGE syndrome. I knew that there was a lot to know about this syndrome, but the variety of issues that are out there are so varied, I didn't think it would be helpful. I was right. Not long ago, I joined a few groups of those with CHARGE. In some ways I feel like it could be good if I could be a good testimony, but that is what this blog is for. What I found by reading about kids with CHARGE is that it mainly brought frustration. Sometimes knowledge isn't a good thing when it is not necessarily true of your own child. I learned tidbits of knowledge here and there, but overall, it caused more harm than good. I need to filter what I read about His problems.

There is something to be said for being prepared and knowing what to expect. The problem with this is that it leaves God out of the equation and focuses on what has happened in the past or what science predicts. God is in control of all things. Right now things are difficult, but we know that the trying of our faith produces patience which ultimately should produce spiritual growth. This spiritual growth is not easy, but we know that all things work together for the good of our spiritual lives. The knowledge of these truths from God's Word should uphold us during difficult times. Thanks for your prayers. I know there are so many in worse situations than ours, but prayers are still appreciated.





Monday, May 20, 2013

Another Special Story

I was recently put in contact with another family who have a child with CHARGE syndrome. The family has been going through an especially rough time recently. Many kids with CHARGE have varying circumstances, and that is the case with this little one. She has severe conditions that make life difficult for her and her parents. The mom was recently sharing on her facebook page that she was considering respite care until they were able to get things figured out. She put this on her public page that is there to inform people and to give people a way to encourage this family. Rather than offer encouragement however, she was offered some terrible criticism. I find this is fairly common with facebook at times, but it should not be. When someone has a page like this, take the time to encourage, not discourage.

It is so easy to judge if we are not in a situation. Someone not there experiencing the long nights and long days might tell someone to just deal with it. I know how this young lady feels. Sometimes all you want is a break, and you really cannot have one, because you and your spouse are the caregivers, and not many other people can really do what you and your spouse can do for your child. Leaving your child with a babysitter is not an option, and the thought of getting nursing care is scary, because just like in the kitchen with too many chefs, too many helpers with a child like this can only cause problems.

I know there are others out there who feel the same way as this young lady going through this time. This lady's husband has now chosen to resign from his job and try to help his wife to care for their child until a job that works better for them comes along. These are big decisions. Families like this need to be covered in prayer not pessimism and criticism. I just want to encourage all of us not to judge before we know the circumstances. You do not have to have a child with special needs to understand to some degree. You do not have to go through our struggles to empathize. Please pray for this young family. She asked people to share her facebook page, so this is my way of doing it. Please like the page to encourage her, but pray for them as well: www.facebook.com/HarpersHeart

Thanks

Thursday, May 16, 2013

Listening Inside the Box- A short story

I originally wrote this story a few years ago to enter in a magazine contest. I never ended up entering it, but I put it on my other blog. I thought it belonged on this blog as well.

“I don’t really remember when it started, but I know it was out of my control. One day I was sitting with my mom playing, and the next I couldn’t take my eyes off the pattern of the ball in my hands. Mom kept trying so hard to take that ball away, but all I could see were the bright swirling colors, and I kept following them. I think for a while she figured I had just become attached to it like any other child with a toy. But then one day I saw something I had never seen in mom- fear. She kept calling my name and talked frantically to me.”
“Chase, Chase! Mommy’s talking to you! Why don’t you look at me anymore! Give me that silly ball, and look at me!”
“I remember I just started crying uncontrollably. That’s when I saw that fear cross her face. It was as if she knew I was gone, but I really wasn’t. I was there all along. I understood their dilemma. It was impossible for me to communicate what I was thinking. I tried so hard, but in the process I hurt myself and broke things.”
“I loved spending time with my mom and dad. I could see they loved me and wanted me to be there. They taught me the alphabet, and they read to me every day. I know those books from memory now. And I read them even though they didn’t know it. They would be so surprised if they knew how much they had taught me. I saw the sadness in their eyes when I didn’t respond to them.”
“I remember the first time they took me to a doctor to be checked out. I was playing in a room, but I could just tell they were watching me. It made me nervous, and I started to cry. It scared me. I wondered what they were going to do. If only I could explain that I just was stuck inside of myself. We met with the doctor after he had observed me for a time. I sat in the corner examining the ball that I carried with me everywhere I went. I could hear their concerned voices. They didn’t whisper.”
“After observing Chase’s behavior today, I’m almost certain he is autistic.”
“I heard the gasp from my mom and the sad groan from my dad. It was almost like they had been told their son was dying. Perhaps in their mind, I was. They began discussing what to do with me. My parents said they wanted to care for me themselves. I was relieved. I couldn’t imagine at the time what else they would have done with me. Since then, I know that there are places for kids like me. At that time, I wasn’t really sure what autism was. I was only four years old. I knew it had something to do with this silly ball I carried with me. I just couldn’t let go of it though. I really wanted to. I wanted to run and hug my mom and dad and tell them I was really okay, but something was wrong.”
“Not much changed after that first meeting. The one change was that my mom was always reading about autism and talking about it with my dad. They had special activities for me to do. They may have helped, but all that time I just wanted to talk to them and tell them I was really okay. They didn’t need to worry. I knew my alphabet. I could count to fifty, and I could even read some of my books. I was six when I first put the letters together the way mom did when she would read. I just wish she had known.”
“As I got older, I know it became harder for my parents in some ways. All of their friend’s kids played sports and were in special plays. And there I was carrying around that silly ball. Some days I wished they would just burn it. I think I would have been fine eventually if they had. I probably would have just replaced it though with some other repetitive design.”
“When I was fifteen, my mom had a break through. She was watching me sitting following the design of the ball, and jumped to her feet.”
“That’s it!” she said “I wonder if art would help. You love that design on the ball. Maybe if you could make your own it would help!”
“I wasn’t sure what to think I thought I knew what art was. They had taken me to an art museum, and I loved to stare at the beautiful paintings. They seemed to almost sing as I followed the colors, and as I absorbed the beauty I could almost taste it. I wondered what she meant that maybe I could make my own.”
“The next thing I knew she had a pad of paper and some colored pencils. She had tried to teach me to write in the past, but my fingers just didn’t seem to work, so she stopped making me try. This time she put the paper in front of me with the pencils and said I could make whatever I wanted. Of course I started with the ball I carried everywhere. I worked for hours on that picture. It was perfect. The colors, the designs, the shapes were the exact image of that ball. The funny thing was that I was no longer following those designs with my eyes. I was creating something of my own. I think that was a turning point for me.”
“I still remember her reaction when I finished drawing the ball.”
“Chase, it’s beautiful!” “She hugged me and I jerked away. I didn’t want to, but it almost hurt to be hugged even though I loved my mom. She didn’t seem to mind though and just couldn’t take her eyes off my drawing.”
“From that point, she would bring me things to draw, and I would draw them perfectly. I loved to draw. Amazingly, I forgot about the ball I used to carry around. Now I carried my sketch pad and pencils. Then one day, something even more wonderful happened. My mom wanted me to draw her. Everything else I had drawn had been objects that I or someone in the house used every day, but this was my mom who I loved more than she knew. She sat down in front of me, and I began. I saw pain in my mother’s eyes. I knew the pain was because of me. I wanted to draw her how she really looked because that’s what I did, but this was my mother. I wanted to draw her how she would be if it had not been for the pain I had caused her. I took away the frown wrinkles and downward creases around her mouth. I put a twinkle in her eye, and then I looked up at her and smiled.”
“Age and sadness dropped from my mom’s face in that instant. I spoke. It wasn’t with words, but it was with my smile. Not only did that smile speak, but so did my drawing. It spoke my love for my mom. She started to cry then and wouldn’t stop hugging me. It didn’t hurt like before. Something had happened. I think that’s when I broke out of the box.”
The man sitting politely across from Chase had not spoken for an hour. He had just let him speak. Now his expression was dumbfounded at how Chase’s story had unfolded, but he couldn’t help but speak now. “This is an amazing story Chase. So did you literally talk to your mom that day?” The man seemed to be sitting on the edge of his seat in anticipation of the conclusion to Chase’s story.
“I didn’t speak right away. But I started using drawing to communicate. I drew my dad too just like I had my mom. It meant so much to him. I drew a football from memory because I wanted to learn to play. He went right out and bought a ball for me. It wasn’t long before things began to normalize. I was communicating with my art. Something was missing though. I knew what it was, but it had been so long. I wanted to talk to my parents. I wanted to tell them so much.”
“On my eighteenth birthday, my parents had a big party for me with friends and family. People knew I had made some progress. They had heard about how I was using art to communicate. We were all sitting in the living room talking, and this rather outspoken man spoke to my mom, ‘You’d think you would have thought of having him draw sooner. Maybe you wouldn’t have been so unhappy all these years.’ I saw the sadness return to my mom’s eyes at that moment, and for the first time I was angry at someone outwardly. I was really angry, and I started talking in a hoarse raspy voice. I looked at my parents and told them I loved them, and that I wouldn’t trade the time just listening to them for anything. I knew them better than most children know their parents. I looked at the man triumphantly with that last comment. His own son was my age. He had been a football star, but he had gotten caught taking drugs and was dropped from the team. I couldn’t help but wander back to my box for a moment and think ‘what if?’ I walked right out of the box again because it was time. It was time to not just listen, but it was my time to speak.”
The television studio filled with applause as Chase finished speaking. The anchorman sitting across from Chase was speechless. Chase had shared his life in an hour of television, but in the time he spent in his little box, he had learned so much more than those watching him. For he had spent his life so far, listening.

Being Positive and Realistic

For a while I had chosen not to write very much about Trenton and his special needs. I did not want to "use" him as a means of writing, and I was not ready to share the difficulties we have been encountering. I came to the point though where I needed to write about it. It had been hard. I was trusting God with our situation, but there were times when I struggled to trust. I wanted to help others, but I also needed the help myself, and sharing was a way to soothe my own spirit as well.

In my life, I have known many people who had special needs or had children with them. I was even a nanny for a young girl with cerebral palsy and mental delays. All of the cases that I had encountered personally with children who had special needs were fairly positive. The parents were positive, and the kids, although delayed, were happy children. I felt drawn to this field even to the point of writing a major paper in grad school on autism. I remember thinking that I would be okay with having a child who had special needs. My view of this was through rose-colored glasses.

When I write to you all, I want to be positive. I'm not going to share every worry and struggle, but I also want to be realistic. I do not want someone who is in the same situation as myself to feel that there must be something wrong with them because they do not feel happy and full of faith at all times. I want those who are going through this or who may in the future to realize that the reality of these situations are difficult, but that they can do all things through Christ (Phil. 4), and that He is able to do exceeding abundantly above all we could ask or think (Eph. 3).

You will probably struggle in many ways. You might question "why?" at some point. Your heart might feel heavy and overloaded with a burden of fear at the future, but in all of this, you can look to the Lord and remember that He is in control. You might feel depressed, but when that happens, you need to push out the depressed thoughts and think on the thoughts that honor God (Phil. 4:8). You might have daily struggles, and you might not know where to turn, but ultimately you can turn to the Lord. There is nothing you can be concerned with that the Lord will not understand.

There are many blessings involved with having a child with special needs. I know many of those blessings will become more clear over time, but many will be obvious right away. You will likely have seen the hand of God on the life of your child from the beginning, and that is a reassurance in and of itself. Look for the blessings, but know that you do have someone when the struggles come. You're not strange. You're human. You're a sinner saved by grace. If you are not saved by grace, you can be (Ephesians 2:8-9). Just tell God that you are sorry for your sins, that you want to live for him, and ask Him to take them away and allow you to go to heaven someday. Once you trust Him, you have access to the throne of grace at any moment.

Tuesday, May 7, 2013

The Good with the Bad

This morning I came to the realization that I need to take the good with the bad. I knew this already to some degree, but I think somehow I have been letting the bad things that happen with our situation affect the rest of the day. So on days like today when Trenton started his first feeding with gagging and spitting up, normally, it would give me that sense of dread that I mentioned in a previous post. It still did give me that feeling at the moment, but then I realized I have to just take both as they come.

It may be a day-to-day struggle to not let the bad things that happen poison my day. It is important though that I not let this happen. There are going to be little things that come up in any day, whether you have a child with special needs or not.

It is important to put into practice something that I focused on for quite some time in another blog: The Fear of the Lord. The fear of the Lord is many things, but one of the main things is that it is the awareness of Christ in every moment of our lives. I help my three year old overcome fear with the realization that Jesus is always with Him, yet it is so often to put it into practice as an adult. Maybe in my mind I think that his fears of monsters or whatever it may be pale in comparison to my fears. The reality is that they are probably just as real to both of us, and Christ is just as able to overcome mine as He is able to overcome my three year old's.

The fear of the Lord can enable us to accept the good and the bad that happens in a day because we know that He brings everything into our lives for a reason. If I let the negatives put me in the wrong frame of mind at the beginning of the day, then I will likely miss the good things He might have for me later.

Monday, May 6, 2013

Letting Yourself Go

My weight has been a concern of mine for years. I have always been one to try new health food tricks as well as various exercise programs. Some of them worked and some didn't. I find that if I'm not careful, I can go up 25 lbs without paying much attention. When I became pregnant with Trenton, I wanted to stay in shape and then get in very good shape after he was born. I did pretty well during the pregnancy, but then after it was much more difficult than I thought it would be. Some of it I blame on a lack of discipline, a lack of time (desire to do something else), and just the desire for food for enjoyment.

If you are going through a difficult time where there is stress with the health of a child or even a spouse, you probably find yourself eating to get rid of stress. Some foods do make you feel better. Comfort food can really bring you a good feeling, but none of that comfort is lasting. Cake and cookies taste good when you eat them, but most likely you may begin to feel a sense of guilt if you give in to the habit of eating for comfort. You might be gaining weight, and now when you eat a cookie, you know you should be more careful, but the desire for enjoyment outweighs your desire to be fit. You know you should be exercising, but the moments that you have when you are not busy with your child or loved one, you just feel like relaxing on the couch with coffee and a cookie. It's a battle to be disciplined, but I know it can be done.

It has been a year now since Trenton was born, and it is time for me to get myself back where I need to be. It is all about balance. I'm going to eat some sweets, but I'm not going to eat so much. I'm going to start exercising again. Exercise can actually give you the same good feelings that food can give. It's hard to imagine when you are working hard, but I remember those times when I was exercising consistently, and I did feel good without having to go to food. It is important on this journey to include your relationship with Christ. Pray and ask him for help.

If you are struggling to get up off the couch to do anything other than help the people who need you, then maybe you need to change your mindset and get up. It might just take one time getting up to exercise to help you realize that you can do it. You are not alone in your journey to get fit again. The Bible says, "I can do all things through Christ which strengtheneth me."

If you have lived long with a special needs child or chronically ill family member, you need to think of them, but you also need to think of you. They need you to be healthy so that you can care for them. You need to be healthy to glorify God in your body which is God's. Your body is the temple of the Holy Ghost if you are a Christian. As I say this, I am speaking to myself, because I am just beginning my journey toward being fit again. Letting yourself go will only lead to more problems.

If you need help on your journey, feel free to send me a message.

Friday, May 3, 2013

Birthdays

Today is Trenton's 1st birthday! We have looked forward to this day the whole year Our doctors told us that Trenton would be most at risk his first year, and statistics say the early years are the hardest for CHARGE syndrome. Thankfully, he has only had one serious cold and one mild one this year. Thankfully, he has not gotten aspiration pneumonia necessitating hospital visits. There is so much to be thankful for. Trenton has begun to show his personality more and more. He is a sweet boy with a determination that combined with strength from the Lord, will help him succeed in life.

As his birthday has arrived, it is different than with our first son. Our life is different, and it is something I just would like to share because I know there are so many others who have probably gone through the same thing. Whether you have cancer, special needs of your own, or a child with special needs, birthdays are different. In many ways they are a happy time because you have made it to another birthday, but to be honest it is bittersweet at times. It is likely some wrong thinking, but because we all have a sin nature, I know that I am probably not the only one who has struggled with these feelings.

This morning, we woke up and Trenton seemed pretty happy. A few minutes later he was gagging for no apparent reason. If we don't stop him, he will likely spit up, and with his problems, spit up is more than spit up. It is a risk of aspriration and pneumonia. This has been a daily thing lately. I'm not complaining, but it plays a role in helping people understand the day of someone with a special needs child. There are moments of wonder at accomplishment, and the next moment, could be a moment of dread or fear.

Thankfully, we have had several weeks at a time that were not filled with these feelings. We have been able to relax many days since Trenton was born. It is hard to explain when issues come up with Trenton. A cold or pneumonia is one of the worst things that can happen with him, but it is often the day to day issues that can wear on a person.

As Trenton's birthday approached, I was thankful. Thankful to have this year behind us, and looking forward to getting passed the next several. I look forward to the days when we may know the mysteries of his illness, when we can communicate with him by mouth or through signs, when perhaps he will eat by mouth or at least is adjusted and old enough to understand what is going on with tube feeding. I feel bad that I look forward to these days. I try to enjoy the small and major steps forward that he makes. I look forward to the new therapist that we will have coming soon, and I am hopeful that Trenton will make great strides. Afterall, God did save his life for a purpose. We know that to be true.

We know that all things work for the growth of those who trust in Christ (Romans 8:28). Although I often have struggled to think positively about our situation, I do know that God is in control. This may be a strangely, discouraging sounding post for someone whose son is having his 1st birthday, but I'm sharing because I know that there are others out there who have children with issues like my son's or much worse. I know there are those who have cancer or are affected by a debilitating disease, and birthdays are a blessing, but they are a blessing that can so easily turn bittersweet in our thinking.

I hope that this helps those going through difficult birthdays to realize that they are not alone, and I hope it helps those not in a situation to understand how those who are going through these times might be feeling on their special day. I hope that this will help all of us know how to pray for each other in a better way as well. So thankful that I am not doing this alone. I have a best friend in heaven (Christ) and a best friend on earth (Ryan), and they are both there to take this road with me.