Tuesday, December 31, 2013

The Day After New Years Eve

The celebrating is done
A new year has begun
The past year filled
With moments of joy
So often blurred
With the moments of pain
The memories come
Together making you
Wish some moments
Could be undone, redone,
Or done.
Contentment needed.
Pray for it.
Do it.
Don't look back.
Only look forward
"Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God."(Hebrews 12:2)
Endure your crosses this year.

Thursday, December 19, 2013

Pain

Pain is something that is hard to understand. We all have or will experience it on some level in our lifetime. We may experience pain in many different forms. Sometimes it might be emotional pain, and other times it might be physical. At times the pain may be a combination of the two in so much that it feels like it is all physical in nature. Your anxiety of the moment might be so pungent that the sadness, fear, and anger you are experiencing is like a fire in your soul melting your heart. It sounds dramatic, but some of you may know what I am talking about.

Some people seem to experience more pain than others. Some might on the outside appear to have it all together. They may have a healthy family, good job, beautiful house, and a smile always on their face. On the other hand, you might be someone who has one or more children with physical, emotional, or a combination of difficulties. Your health may be poor, and you may be poor financially. You might be weighed down by the trials associated with all of this in combination with just keeping up with life. All of this might be so much that you might look at someone else who seems to have it all together and envy them. You might hear them complain about their child having an issue, and you might have bitter thoughts, because in your mind your pain is so much worse than theirs.

This line of thinking will not lead to joy. It will only lead to a bitter spirit. It is so easy to think this way. It is so easy to compare our pain to someone else's. As you struggle with this, try to look past those that bring these bitter thoughts to mind. Remember that things are not always as they seem, but they could be. It is entirely possible and fair for one person to have fewer problems than another. Rather than grow bitter at this, we can become better by realizing that there is a reason God chose us to experience the pain that we are experiencing.

Mary was chosen to experience the pain of giving birth to the Son of God who would one day die. No one knows exactly how much she knew about what Christ would do before it happened, but as a mother she surely knew something. The pain we experience today is nothing compared to the pain suffered by Christ as He chose to die a painful death but even worse to have our sins placed on Him, and have His Father turn away from Him in those last moments.

Maybe those of us who seem to have more pain in life need it so that the thought of heaven will be more desireable. Maybe we are too focused on the world and it's joys, that we need some pain to keep our eyes on something greater. Maybe God made us differently for the specific purpose of handling our specific pain. I'm sure He did.

Friday, December 6, 2013

What Emmanuel- God With us - Means for Us

Matthew 1:23

"Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us."
 
The significance of the name Emmanuel cannot be ignored.
 
The fact that the interpretation of the word means "God with us," is life-changing.
 
The greatest realization that we can have everyday about God is that He is with us.
 
Yes, the interpretation has to do with Him coming down and living among man, but the significance goes further in that as a Christian He indwells us, he is all around us, He is in our past, present, and our future.
 
Because Emmanuel is with us, we can know several things:
 
  • because God is always with us, we must not fear or be anxious about anything.
  • because God is with us, we know that nothing will happen without His knowledge
  • because God was with us then and is with us now, we know that He will be with us in the future.
Even though this is what many of us would consider to be a Christmas verse, the truth of Emmanuel is a constant. He is always with us, and His presence can give us the peace that we need to face every situation.

Monday, November 18, 2013

Depression - Fear - Anxiety

Depression, fear, and anxiety are three issues that affect most people today in some way. If you watch television or read a magazine, you will find your cure to these to be anti-depresssants or medicines to make the other medicines more effective. For those who are going through a hard time and have the feelings of depression, fear, and anxiety, the thought of having a quick-fix might be tempting.

As someone who has had friends struggle with these areas, people close to me, and even myself, I know there is no quick fix. In another blog, I discussed fear at length and how it can be overcome. It is not easy. Taking a pill every day might be a necessity at first, and in some cases it might be a necessity for longer. Every situation is different. There is only one true fix however for the feelings of depression, fear, and anxiety. Physical issues aside, the mental issue, the habit of thinking a certain way, can only be changed or helped with the Lord's help.

Someone suffering from a brain tumor, suicidal thoughts from a medication, or even someone with a meloncholy temperment can all be cured of the sinful aspect of depression, fear, and anxiety. In Philippians 4:6, the Bible says to not be anxious about anything. That is a command from God. His solution is prayer, supplication, and thanksgiving while asking God for help. He promises peace if we go to him in this way. Peace is the opposite of depression, fear, and anxiety. The knowledge of His present help in time of trouble, the knowledge of His presence results in not only a respectful fear of him, but a confident fear that He is in control over our every situation.

If you can consciously think about something, and find yourself thinking about it over and over in worry, then you are creating a habit that could change your mind in a way that is not positive. You can train your mind to think right, but you can also train your mind into believing things about yourself that God has never said. If you or even a child of yours suffers from obsessive compulsive behaviors, there is help in the Lord. It will not be easy. It takes work. A pill might help at first, but when it comes down to it, you have to just stop, and the Lord can give you the strength.

OCD tendencies can run in families I think. Perhaps it is from influence or even body make-up, but it happens. Sometimes kids who have special needs suffer from OCD behaviors. It's likely that Trenton will struggle with this. Anyone can struggle. It is how you handle the struggle that determines whether you will live a life of victory or a life filled with depression, fear, and anxiety.

You might wonder how you can help someone with a physical condition that actually causes the issues. There are obviously situations where someone has no mental understanding, that it would be impossible, but if there is understanding, it is possible. Changing the pattern of your thinking is not inherently spiritual, but I believe the without the help of Jesus Christ, it is impossible. In some cases they will still need medication, and there is often nothing we can do about that.

Since I know many people who use medication for help, this is not to offend them or try to stop them from what they are doing. It is just to create an awareness of what might be possible for them. I'm not a doctor. I don't know every medical illness that causes these symptoms, but I do know that we can learn to overcome wrong thinking with the help of the Lord. I know this from my own personal experience. I know the feeling of thinking something must be wrong with you because you just can't stop worrying. For me the solution was found in Philippians 4:6. Do not be anxious about anything. When I realized it was a command, it made it easier for me. For you it might take a different verse that will help. It is not easy. It is a fight.

As a mom of a child who will likely struggle with these issues down the road, I am preparing myself for his need to be medicated, but I have hope that he will have the understanding to be able to stop obsessive behaviors and be strong through Christ.

My reason for writing this today is because I needed it today. Depression over my son's issues, fear over the future, and anxiety over it all is a constant fight that must be fought. "But thanks be to God which giveth us the victory through our Lord Jesus Christ." I Corinthians 15:57

Saturday, November 16, 2013

The Need to Explain

Something that I have not gotten used to with Trenton is explaining him. Most people wave at him at first because he always looks like he's waving. Most people probably catch on after a few minutes that he has some type of disability. I don't worry about those people, because usually they don't say anything. It's the friendlier people who come up and chat and want to play with him that I feel the need to explain his disabilities to.

A birthday party that we went to the other night was one of those instances. Most people there may have known about him and that he had a disability, but everyone didn't. One lady was chatting with me, and she asked how old he is. That is usually my cue to explain why my 18 month old is riding in a stroller while her maybe 10 month old was going down the slides at the party. I proceeded to tell her about CHARGE syndrome. I suppose with this habit I am creating awareness.

Later the lady proceeded to ask me if he had involuntary movements or if that was a part of the syndrome, then I explained further. She brought her little boy over and told him that he was actually younger than Trenton. She obviously meant no harm, but it's those little things that tend to hurt. I've read a lot of "what not to say to a special needs parent" articles lately. I'm not really sure what the answer is, because in my case, I probably asked to be separated by explaining his issues. It's hard to know whether people really want to know or if they could care less.

Some of my explaining might stem from habits of fear. The fear of what people think is a prominent one that gets me at times.

"people will think I'm a bad mom because his nose is always snotty" - He can't help it, his body is made that way, and it would be raw if I wiped it every second

"people might wonder why I'm not holding him or cuddling him" - He doesn't love it. He could care less, and most of the time he cares not to be held.

"people might wonder why such a large child is just sitting there while we eat in a restaurant" - he has a g-tube and can't eat by mouth. He ate before we came.

These are all possible thoughts and answers that could be said for them. It is hard not to think this way. It's difficult not to wonder what people think. The solution is the same solution for any other worry or fear. "Be anxious for nothing, but in everything by prayer and supplication let your requests be made known onto Him." Philippians 4:6.

Just sharing some thoughts tonight. Hopefully they will benefit someone. Thanks for listening.

Wednesday, November 6, 2013

When Answers Come

In a life filled with the mysteries of rare genetic disorders and illnesses, isn't it nice when answers come? In general, answers are a good thing, because they bring order, even when news is not good.

So often as Christians, we are told that we might never know why. This is true. Isn't it great, when God allows us to have some answers?

I know God gave me the mind I have to help deal with Trenton. I know I've been thought to be strange because I do look at things differently. I make connections, I research, and I always have had to figure things out. This can be detrimental to your spiritual life when you need to be living by faith, but when it comes to helping figure out medical problems or issues like this, it is an asset.

People that follow my posts on facebook may have noticed how often I requested prayer for our son getting sick. It was happening once a month almost since we moved to New York State. That's not a jab at the state! It just happened that way. I did not really pay much attention, because I thought it was just a cold. He has odd cold symptoms not typical of most people.

After really starting to think about the pattern that was developing, I started researching, talking to others, and I started to get answers. We are pretty sure that Trenton has been getting abdominal migraines also known as cyclic vomiting syndrome. It explains the about once a month vomiting at the same time every month for about the same length of time. Why did it start when we moved here? Well, we have an answer for that too! Trenton was taking beta blockers for his heart, and around the time we moved here, he had a growth spurt. The cardiologist said that he had outgrown the meds and no longer needed them for his heart. Turns out, beta blockers are a treatment for abdominal migraines! More answers, and we haven't even been to the doctor yet. One more discovery is that the migraines are often caused by the chemical histamine. Perhaps you have heard of anti-histamines that help allergy symptoms. Trenton is one big allergy symptom. If you have ever seen him, you might notice he usually has a snotty nose. It's not because we don't care enough to wipe it. It's because if we wiped it every time, it might cease to exist! Anyway, around the time of one of his episodes with vomiting, his nose is especially runny, but then when the main sickness begins, he completely dries up. I'm no doctor, but I believe this must have something to do with a histamine issue in the nose and the stomach. The stomach is also affected by histamines, so I think he may be getting to much during these times. He already takes an acid reducer, but there is another type that is called an H2 Histamine blocker. I'm going to talk to the GI doctor about switching to this type to see if it will prevent the illness. I love answers, and it's wonderful when we get them.

God is not against us having answers to our problems. Spiritually, He sent the best answer to the world's problems in the form of a sinless baby Jesus who would grow up, die the cruelest death of the day, and rise from the grave. He is still the answer today to all of our problems. In the trials of the day that are not spiritual, He is still the answer, because He is our hope. We know that if we love Him, He is working everthing out for our good. We won't always have the answers, but I am so thankful for the times when He allows us to have them. He is God and He is the Answer.

Wednesday, October 23, 2013

He Lives in Wonder

He lives in wonder, like the light
Of coloured leaves and bright-blue-gray skies;
And all that is best of young and old
Meet in his smile and his eyes;
Thus brightening the dark of night
A gift from Him on whom we do rely.
adapted by Stephanie Anderson from Lord Byron's She Walks in Beauty
 
I felt like writing, but I could think of nothing. For some reason the title of the poem She Walks

in Beauty came to mind, so I decided to adapt it to our Trenton. Wonder is something that

easily describes him. He is often in wonder at that which I cannot see. A friend recently posted

that her baby was acting as if he could see something that she could not. The world beyond is a

mystery, and perhaps our innocent children can somehow sense the wonder of God. It is

afterall in nature and we should recognize it (Romans 1). Since we can only wonder at the

wonder which we see in the eyes of our children, we must simply trust that God has made them

happy, and that is what is so great.


So many people are unhappy today, so to see the joy of what seems to be nothing is definitely

something. Taking the time to notice the wonder around us is perhaps something that is lost to

those of us who might not be considered special or to those of us that are no longer children.

Wonder was once there. Before the fall, we would have all seen all things with a sense of

glory to God and wonder at His creation. We have lost it.


The fall season is a time to regain this wonder. Although other seasons also display the glory of

God clearly, the fall displays the artistic hand of God. As an artist, I guess that is why I love the

fall. The hills are painted in muted hues of orange, green, and gold against the back-drop of

that bright-blue-gray sky of the season. Don't lose the wonder that your children still see.

Sunday, September 29, 2013

When Worse Makes You Thankful for the Bad

In the past few months our little guy has changed a lot. He went from playing with toys to not wanting anything but a hand in front of his face. He thrives on the way the light looks as it comes through his fingers. He likes the feeling of his feet hitting the floor as he bobs around on it. He is a picture of constant movement. If you did not know that he had special needs, you might think it was really cute, and it is. If you watched him daily for several weeks, you would obviously realize that they are habitual stim behaviors. So far, they have not really been negative behaviors. They are still different. At times I have found myself disliking the behavior. I doubt I'm the only mom of someone with special needs who wished the outward signs were not obvious, but I have wished that.

Last week made me thankful for our bobbing little broncho with the waving hand and rocking feet. He caught an awful virus of some kind. All he did most of the day for about five days was lay there. If he started his normal behavior it lasted for only a few minutes before he wore himself out. When he didn't have tylenol, he just moaned in pain. He was a sad sight. He didn't even have the strength to bring his hand up to look at it. I noticed this change, and part of me was happy that he was not doing that behavior. Then one morning he woke up and was his old self!

It's amazing how thankful I now was for his stim behaviors. Of course I will still take the ideas the the physical therapist give and try to stop the behaviors, but I think my attitude is a little better about them. They are who he is. If you watch him and look past the behaviors being "special" you can see personality and joy. I'm thankful for the help for my attitude, although I know I still have a long way to go.

It's a fine line you have to take as a parent of a child with special needs. You want them to be better, but you have to realize that many of their issues are built into that mutated gene. You can never change that. All you can do is study up on new techniques, try to add exercises, but all the while accept them for who they are. Your child may never love your touch, because their senses will not allow it. It might hurt them to be touched in a way that you would never want. You may have to learn to love them the way that they need. It might mean a tight squeeze of the hand or it might just be their sweet smile, but it is their way, and as parents you learn to accept it.

"Let your conversation be without covetousness; and be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee." Hebrews 13:5
 
In our journey, no matter how rough or different, we must be content knowing that He is with us every step of the way, and as the old Footprints poem said, when we couldn't see two sets of footprints on the sands of life, He was carrying us.

Wednesday, September 25, 2013

For Such a Time as This

I don't think my life has been "typical." Maybe everyone feels the same way. I know the Lord has been preparing the way for me to deal with every circumstance that will cross my path.
 
My life has been one of twists and turns, jobs that worked for a time, and for a purpose, and jobs that continue to provide. Interests that were never meant to be degrees but were only meant to lead me to be more of a researcher or inquisitive. All of these things preparing me for the here and now, and the here and now is preparing me for the future.
 
I know people who would not believe a word of this. The verse stating that all things work for our ultimate good is likely passed off as a lie to them, since so many bad things happen to people who really are pretty good. If you have trusted Christ as your Savior, then you know differently. You know that bad things do happen to the good and the bad, because in God's eyes, none of us are really good except for through Christ. Children are born with rare disorders. Parents lose sleep. People die of cancer. Bad things do happen to Christians, and perhaps they happen especially to Christians. It is those of us who have trusted Christ who have a purpose in our trials. God's purpose is to make us pure and able to glorify Him.
 
This poem is one that I started back when I moved to Greenville, SC to finish my Bachelor's degree. I was fairly alone except for a few people that I knew. I came without a job with the hope of getting one that I had looked into. I got the job as a nanny for a girl with cerebral palsy and her sister. I lived off campus, so I didn't really have friends. I made some, but I was older than average having sat out for two years. I had to depend on the Lord, and He brought me out stronger. I began writing this back then, and last night I finished it, because now I see that time was for a purpose-
For such a time as this
 
 
For Such a Time as This 
Sometimes life seems to turn like pages -changing every other day
But knowing it is God's hand that does the turning -
Allows me to say...
"For such a time as this, I'm here.
Change me, make me a vessel for you. "

Sometimes this life's vessel seems so frail
Weaknesses and cracks show through,
So thankful that in his plan...
He knows how to make all things new

In those days of frail contempt or sinful discontent,
His strong hands pick me up -
His care is evident.
With His help, I'm soon renewed
Life's vessel fit once more...

For such a time as this,
To be filled, poured out, and used
to glorify my Lord.

Thursday, September 19, 2013

A Different Journey

The culture we live in causes us to think about life in certain ways. It is our worldview. It is easy to focus on the so-called successes in life. To some, success is getting married in your twenties, having three children that are healthy, of average intelligence, and perhaps good at sports, landing a job that is close to six figures by the time you are in your 30's with the goal of retiring early with a solid pension. That is what is often construed as success today. That is even the way many Christians view success.

But what if life does not happen that way? Are you not successful?

What if your story is different? Maybe you are not married by 30. Maybe you were, but now you are a widow or widower. Maybe you have children, but perhaps they had a difficult start or continue to have special needs. Maybe you are unable to have your own child. Maybe you have not found a job that seems to work. Perhaps you have worked in several areas where the Lord has directed, but they have not been places in which you could stay. Maybe your family thought you should have a secular job but you are in ministry. Or perhaps your family pushed you toward ministry, but you knew that your talents led in a different direction. Are you successful even when your life does not fit what others call success?

It is not easy to be different. Sometimes people will judge you for the different life that you have led. Some might suggest that you were never in God's will in the past because things did not work out as planned or that your problems are a sign of judgment from God. Judgments like this could be hurtful, but they are not founded in truth. Although we can make poor choices, whatever happens is God's will. Our choices impact our lives to be sure, and God's moral will must be followed by us obeying His Word, but what happens in our lives is always His will. He is sovereign. His plan was written before our birth. We can never comprehend how that works.

How should we handle our lives when the way we live is different than others? We should handle life like anyone else really should be handling it. Micah 6:8 says it well, "He hath shewed thee, O man, what is good; and what doth the LORD require of thee, but to do justly, and to love mercy, and to walk humbly with thy God?"

Whoever we are, wherever our journey takes us, we should humbly walk with God realizing that it is not about whether our journey has many stops or one long road. It is not about whether others look at our journey and admire the appearance of it. It is not about whether our journey ends with our bank accounts full. In the end of our journey none of that will matter. What matters is how we have handled our journey whether in good times or bad and where we will be when our journey ends.

Thursday, September 12, 2013

Rejoice

I realize the other day that it has been almost a month since I have written a blog post. My writing is a lot like my art, I seem to have to be "inspired" unless it is for my job. So many times my posts have taken shape because of the difficulties of raising a child with special needs or situations surrounding our lives. The negatives seem to give me the most to write about, because that is where the lessons so often are. Lately, however, I want to praise the Lord for the blessings. His mercies have been on us, and I'm so thankful for it.

I think we are so often told to rejoice in the times of difficulty, that we forget to rejoice in the times when life is easier. There will always be little things. Things that need prayer, and the Lord has so richly answered lately. When the days do go well and fear and worry do not overwhelm, rejoice.

I praise the Lord for the recent change in Trenton due to the prayers of my facebook friends and family. I requested prayer for him to begin to better interact with us, and he is. In fact, right after requesting this, we had a session with the physical therapist, and Trenton worked so hard. The hard work seemed to do something to him that nothing else does. It woke him up mentally. I had read of a study about exercise helping the symptoms of CHARGE, but now I saw it in action. The Lord did it, but He used something earthly to do it.

I also praise the Lord for giving me a new job. I will probably need to be a stay at home mom for many years due to Trenton's difficulties. I'm so thankful that around 4 years ago, my sister sent me a job listing for writing. I never would have thought I would be a writer, but I tried it. Not everyone has the ability to write nothing about anything, but that's what I learned to do. It might sound strange, but the Lord was preparing me to be able to work from home, and now, the Lord has provide a way for me to work less time and make more money because of a job where my father in law works. That is a wonderful blessing. God is always sovereignly working things out for our good.

Finally, I cannot imagine raising our sons without my  husband. He is such a blessing as he does so much to care for both of them. I'm so thankful that we can be a team in raising our boys. It cannot be easy for those who do it alone, but God graciously gave us each other.



Monday, August 19, 2013

Eternal Perspectives:Thinking Right About a Life Sentence or a Death Sentence

When individuals are conviced of a crime and given a life sentence, it is a major punishment. When a state allows the death penalty and a person is facing a death sentence, it may seem even worse. It really depends on how the individual thinks about life and their future.

There are thousands of death sentences given every day. These are not given by a judge in a courtrom, but they are given by doctors and ultimately God. These could be when an individual finds out their cancer is incurable, or when parents discover that their child has a genetic syndrome that will ultimately lead to death. For some, the knowledge that they will soon die, may be a comfort. Years of struggle will finally be ending, and heaven will soon be more than something you know by faith.

There are also many life sentences given every day. Children like my son were given a life sentence. CHARGE syndrome does not necessarily lead to death. Most of the time it does not. It does offer a life of disability and some suffering. There are many people living with life sentences. Those who have children who are living with them, might often feel the pain of their child. Living with a life sentence of disability is stressful, discouraging, and can often lead to despair. If you are in this place, your thinking in the right way, could help you through it. Thinking about the truth of your situation can bring you comfort, because you know that God works all things for the good of those who know Him as Savior. You also know that this life is temporary. The hard things will someday pass away with all tears.

It is not for me to say whether it is better for a child born with a debilitating disease to not have to live with it. It is not for me to say what is better. That is in God's hands, and what He does is best. I do not believe that aborting a child is right no matter what is wrong with a child. Those of us with children with disabilities or who have disabilities of our own may wonder why God allowed this problem in the first place. Why did I get the life sentence rather than the death sentence? Was God showing mercy to some and giving grace to others? We will probably never know why God has chosen as He has. It should be good enough to know that it is for our good. When individuals choose abortion and take their child's life into their own hands, they will never really know what would have happened. Their child may have been given a sentence to life with a difficult condition. It might have been hard, but in God's plan He offers the grace to make it through.

If you are in one of these positions. And you feel like neither life or death looks good, then look up. A passage I memorized several years ago says it so well. I Peter 1:3-9 says,  "Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, to an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, who are kept by the power of God through faith unto salvation ready to be revealed in the last time." These words tell me that whether we live in suffering on earth or die, the end will be the same for those of us who have accepted Christ. Don't give up, look up! Let God fulfill His plan, and try not to question it. This life is not forever, glorify Him as much as you can with the life He has given you.



Tuesday, August 13, 2013

Empathy: Taking a Walk in Someone Else's Shoes

The empathy of a young child can be significant. My oldest has the gift of empathy. When he was two years old and I was pregnant with Trenton, I saw his empathy at its peak. Pregnancy can bring on significant emotions, and it frequently did during my last pregnancy. There was one moment when he was in his high chair, and I don't even remember the circumstance, but I was very emotional. When he saw my reaction, he began to weep. I couldn't believe his empathy.

Growing up as the youngest child, empathy and selflessness were not my strengths. In fact, I was a fairly selfish young person. I would never have thought it, but as I've gotten older, I've seen it. It was all about my worries, my wants, my hurt feelings etc.

For years I wanted to be a nurse. I think it's because I didn't feel the pain. I could watch a surgery with hardly a flinch. I could even watch a procedure on my own leg, but I looked faint, so they made me lie down. At one time I was proud of that ability, but today I realize that it was simply a lack of empathy.

As I've grown older, I've begun to feel pain at the pain of others. It is something that is truly a necessity. If we cannot put ourselves in someone else's shoes, our lives will simply be a shallow little world of our own. Most people have pain that they go through periodically, but if it is only our pain on which we focus, we will never grow. The knowledge of the experiences of others broadens our world, and it helps us to better reach out as a Christian.

Today, I have a little one who has been through a great deal. I've never seen wounds in person until I saw those that he has endured. The pokes and prods are something that I would never want to experience. As with most parents, when he gets a cold, I do not really know what he is experiencing until I am going through it myself. I experienced that this week when he got a cold first, and then a caught it. I would have never known how much he needed tylenol until I woke up in the night with a terrible sore throat. Experiencing the pain of someone else changes our perspective. This does not mean that we should inflict pain on ourselves so that we know. It means we just need to change our mind about others. Our perspective needs to not just skim over another's situation. We need to "weep with those that weep."

Imagine if Christ had lacked empathy. Where would we be? He literally put himself in our shoes on the cross when He took our sin. He felt the pain that each of us should have felt, and He knew how awful it would be. Empathy is a trait that all Christians should show if not only for the reason that we are to emulate Christ. His empathy showed in his entire ministry to the lost and hurting. May we have the same empathy toward those going through trials.

Monday, August 5, 2013

Your Other Special Children

Finding out that you now have a child with special needs is difficult. I can't imagine having this happen with your first pregnancy, but in many ways it is difficult in a different way to already have children when it happens. When Trenton was born, our oldest son was two. He really did well. He had some issues with stuttering because of the stress we were all going through being away from home for so long, and that stopped once we got home.

 A new baby is always going to affect an older child in some way, but more recently I have seen it affect our oldest more. It is something to think about when you see a family with a few children, one of which has special needs. Sometimes parents cannot give their other special children as much attention as they would like. Sometimes we have to drop everything to take care of an important issue with our child with medical needs.

So what can I do? What can you do? All we can do is our best. Give your other special children as much attention as you can. Keep in mind that you need some alone time as well once in a while. Try to help your child understand what is going on and why you can't play right then. They will not always understand, but all you can do is love them and make sure they know that they are special too.

If you are reading this and do not have a child with special needs but you know people who do, then there is something that you can do. Try not to judge the parents. If you see their older child misbehaving and the parent is struggling, be empathetic. If you see that a child seems to need attention but the parent is busy with the child with special need, volunteer to take him or her for a little while. Having people around who are willing to give that extra attention that you cannot give is a blessing. The parent may or may not agree, but in offering, you did the right thing. If a parent does not need the help right then, don't give up. Most likely there will be a time when your help would be needed.

Tuesday, June 18, 2013

The Risk of Living Your Faith Outloud

The title of this blog today might sound strange to you. I doubt however that it would have sounded strange to Job in the Bible.

Job lived his faith outloud, and Satan himself took notice. Job prayed for his children and sacrificed offerings for their sins. Satan took notice and made a challenge, because Job lived as a Christian so that others could see it. Satan is not omnipresent, but he does have helpers, and between him and them, we are in an unseen battle that often can become an oppressive one.

Last night I was lying in bed thinking and praying about how I need to praise the Lord outwardly about how great Trenton has been doing the last couple of weeks. The recent tummy problems had almost stopped, and he's been seeming so well. When I thought of doing this though, fear overwhelmed me. It might seem like something strange to be afraid of, but I have found lately that whenever I mention him doing well with something, that problem starts happening again or something he had never had happen begins to take place. It was late, and I think around that point I fell asleep.

In the early morning, Trenton started waking up being gaggy and did get sick. He had this problem a few times today, and he has a cold. Some might say that I am superstitious. I'm really not. But I do believe in the spiritual battle that is taking place.

I'm not saying that Satan and God were talking about my fears of sharing triumphs, but I believe that the more we live our faith outloud, the more "at risk" we are for experiencing trials. It might be because Satan or his demons takes notice and God allows it for our ultimate good and His glory.

I guess what we need to keep in mind is that living our faith outloud has far greater (better) consequences than our trial. That trial, according to James, produces patience, and when we let patience have her perfect work, the book of James says that we will be "perfect and entire, wanting nothing." If we let our trials do what God ultimately intended for them to do, then we will eventually be what we should be.

Let's not be afraid of the risk - Let's live our faith outloud.

Saturday, June 15, 2013

Four Fathers

I cannot imagine going through the past year without the help of four important fathers in my life.

The most important Father who has carried me through the last year is my Heavenly Father. He is always there. He never leaves my side. His Spirit is always in my heart because I am His child. Everything that has happened to us with Trenton was in His plan and for His purpose that I might become more like Him.

The second father in my life is my husband Ryan. This year he has carried me with support and help that I cannot imagine making it without. He is so level headed in moments of panic, and he is able to so often help me refocus. He sees things the way they are rather than the way they feel, and so often that means the difference between acting and reacting. I'm so thankful for Him.

The third father in my life is the one I have known the longest. My dad is a wonderful man with a caring heart and giving spirit. So often growing up I did not give him the respect and credit he deserved, but now as an adult I appreciate his wisdom, love, and compassion. I can't imagine my life without him.

The third father in my life is my father-in-law. I have only known him for six years, but I am thankful for how he strives to make me feel like his own daughter. In my realistic mind, that is not easy for me, because my dad is my dad, but I'm so thankful for dad A who is generous, loving, and caring. If it were not for him, I would not have my wonderful husband.

The four fathers in my life have greatly impacted what my life has become. I'm so thankful for each one.

Monday, June 10, 2013

Humility in Hardship

“True humility is not thinking less of yourself; it is thinking of yourself less.”    -C.S. Lewis

This past Sunday in the message, my husband brought up the subject of true humility and what it is. I felt it was a necessary topic for those of us with children who have special needs or for those who just need to have a different perspective.

When we go through a difficult time, ourselves or our situation is probably the major thing on our minds. I remember after we got home from the hospital when Trenton was discharged, and I went out for the first time. I felt like a cloud surrounded me. It was a cloud of sadness and discouragement. It was a cloud of self. It was a cloud that kept me from reaching out to others or even thinking of others at all.

Some people might say that I had a reason for being sad. Some might be in a similar situation and might feel that your sadness or self-pity is okay because you feel sorry for the one suffering - not just for yourself.

There is obviously a time for sadness. When you lose a loved one or give birth to a child with special needs, there will be a times of sadness or discouragement. Maybe I was still within the limits of the expected by human standards, but I'm not sure if I was by God's standard. He had afterall rescued my son from death through providential circumstances. He had miraculously brought him through sedation without a problem because of an accident by a nurse practitioner. He had done so many things. The last place my mind should have been was on myself or on Trenton's current health problems.

If you are in a difficult situation, you might need empathy, sympathy, and encouragement. We all have the desire for these things when going through a difficult time. It is tempting to talk about all of our problems in our blogs or facebook statuses with a desire to gain these things and not necessarily a desire to edify. I know I've been guilty of this.

It is hard to think right about difficult situations. The reality of hardship is that it is there for the glory of God. It is there ultimately so that God can turn your trial into a treasure. So that you can go from the depths of despair to the mountain height and be able to edify others. That is why we have trials. We have trials to give us patience (James). He says that the trying of our faith worketh patience.

Being humble in difficult circumstance is difficult, because most of us who are or have gone through difficult times, think of our situation every day, because we face it everyday. I know there is a way to think less of me and more of you. May each of us strive toward this goal - to glorify God in our circumstances and edify others.







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.



Tuesday, April 30, 2013

Opaque Transparency

The phrase might seem like an oxymoron, but it is often our reality. So many of us go through life and appear fine, but on the inside, we know our struggles, fears, discouragment, etc. Opaque transparency is not a bad thing. It is actually the way we as Christians should probably handle difficulties. We should not walk around with our problems broadcasted like writing on a t-shirt.

As a parent of a child with special needs, there are often days when there is fear and discouragment below the surface, and I am not always great at keeping it there. It is important to have some type of outlet. I believe that the best outlet is our prayer to the Lord. He is the only one who can really make it better. We should also have someone else with whom we feel that we can share things. It is not that we should go to that person and constantly have a complaint on our lips, but it is nice to have someone with whom we can be transparent.

Public transparency at times is not a bad thing. There is a time and place for it. As a pastor's wife, I want to be transparent at certain times with the ladies in my church. They need to know that everyone has struggles and that just because I am the wife of a pastor does not mean that I do not have hard times or struggles. No one is above discouragement. It affects us all, and sometimes it creeps up when we least expect it. Letting others know that we know what they are going through, can be helpful.

We live in a fairly transparent world. I know I have been guilty of the TMI statuses on facebook. I have learned that some things can just be kept to myself. Facebook is a great tool if used correctly. I have used it as a tool numerous times to have hundreds of people praying for our little one. So many more prayers went up for him this year then probably ever would have before facebook. In the transparent world in which we live where everyone wears their feelings on their timeline, we need to strive to stay somewhat opaque while still being transparent enough to let others into our lives so that we can reach them and sometimes so that they can reach out to us.

It is a difficult balance. I suppose you might call it translucency if you really wanted to be scientific. Live with a filter. Live in such a way that others know that God is being glorified in your trials.

Thursday, April 11, 2013

I Once Was Blind...

I remember like yesterday the dark room, the doctor's negative tone and the empathetic nurse practitioner's presence. We knew that Trenton could have eye issues, but I had seen the way he had stared at me one of the first times I had held him. Surely, he could see.

The doctor's prognosis was overly grim. Our son had a coloboma of the optic nerve. Not only did this mean that he likely had CHARGE syndrome, it also meant that he would likely have little to no vision. This was very heart-breaking. At this point, we already knew that that he had failed his newborn hearing screening and the thought of having neither hearing or sight was a huge weight on us. The Lord helped us through these days, and as Trenton grew, we saw what science does not see. We saw that he could see.

At his first eye appointment with the first doctor who had diagnosed him, the doctor seemed happy with Trenton's progress, but still said that he could have 20/200 vision with correction and be legally blind.

Today was his follow-up appointment. We were supposed to see that doctor again in March, but the Lord led us to NY where my husband is pastoring a church. We have been slowly transitioning Trenton's medical issues to various specialists here. The doctor today examined Trenton and actually knew quite a bit about CHARGE (miracle in itself). What is obvious to us was obvious to him. Trenton can see. The doctor examined the optic nerve, and miraculously the part of the optic nerve that deals with being able to see the most is still attached. The doctor believes that Trenton may have little to no vision issues!

It's a miracle.

Every night before bed I sing the song, "Amazing Grace" to Braydon. The first time I sang it, he was in the NICU when he was on oxygen soon after birth. I held him in the premee "hug" with hand on head and bottom. How little I knew about that song at that point. Yes, I knew of God's amazing grace to save me from my sins. That grace however extends into every area of my life. I see it in the birth of our first child who was born early. If it had not been for that difficulty, our Trenton would not be with us. I see it in the phrase, "I once was blind, but now I see." This phrase is significant spiritually, but it is also significant physically. Since Trenton's diagnosis, I could not help but often think about his situation, and now, we can happily say this phrase ourselves about him. Our God is a gracious God. He is not gracious only to provide our salvation from sin and hell, but He is gracious to give us help in times of difficulty. He knows when we are in need of of good news.

If your child has a genetic syndrome or physical difficulty with a bleak diagnosis or even one that has so many unknowns, try not to sell God short. Science only knows and sees so much, but God has it all predetermined, and in the right time He will show Himself strong and gracious right when we need it. When it does not seem to happen the way we desire, and He seems silent, we must count ourselves fortunate to be trusted by God with this trial of our faith to ultimately bring glory to Him.

Wednesday, March 6, 2013

How Uncle Clint became Jack & Wil's hero

This guest blog comes from a girl that I grew up with. Her brother Clint is a few years younger than me. He has Down's Syndrome. He is one of the happiest young men you will ever meet. He stands up in front of church and recites whole passages of scripture. When I was younger, I remember going over to their house to work with him and paint with her. I know I was supposed to feel like I was helping with Clint, but the reality was that it was meant to help me. Growing up with Clint was my first experience with someone who had special needs, the Lord knew that I would have many more to come. Enjoy this story about Clint becoming a hero.

This last summer, it was finally family vacation and we were heading up to Northern Michigan. My husband, Aaron, and I invited my Dad, Mom, and brother Clint (born with DS, 27) to come up and share a few days with us at the resort. We were all excited! The morning Dad, Mom, and Clint came up was a little cool, but the weather-man promised sun and warmer temps by afternoon. Dad and Aaron, went out to the golf course; while Mom, Clint, the boys and I relaxed in our condo until it was warm enough for a swim. After much pestering, we decided it was warm enough for Clint and the boys to swim (Mom & I would just drink coffee and talk pool side).

 Jack (just 5) and Wil (3) had already had a few swims in the "family" pool and were very used to enjoying summer fun in the pool with life jackets. Aaron, a certified lifeguard, had been giving our boys a few private lessons, and although Jack was close to swimming, he still lacked confidence. So once we got down to the pool; yes, we were the only crazy Michiganders there, as usual I gave both boys a lecture about being careful and keeping on their life jackets; then the boys and Uncle Clint waded in. (Brrr!) They squealed with delight, and I'm sure a little buzz from the weather; and then swam the morning away.

 Once Mom and I decided that they should probably all go back for warm showers and lunch, I called the boys out of the pool for me to help them dry off. Jack was first to me, because being first is more a matter of speed and brotherly competition, than just obedience. I got his jacket off, wrapped him in a towel and said, as I was beginning to wrestle Wil's jacket off, that we'd use the bathhouse restrooms before walking back... (SPLASH!!!) My eyes darted towards the sound and my heart sunk as I knew that my daredevil, rambunctious, first-born son had just jumped in to splash Uncle Clint in the "deep" 5' section of the pool! I knew exactly what had happened, the thought crossed him that it would be funny to startle Uncle Clint who was floating with pool noodles. Adrenaline and testosterone kicked in and that boy never even thought about the now absent life jacket that lay at his feet. I jumped up and my eyes met Clint's (who was startled at whatever had just splashed him) I loudly, and somewhat calmly said- "Pick him up!... Pick him UP!" Just like that, Clint reached over and grabbed Jack's flailing arm and lifted him by that one arm out of the water (like- "what? you want this?"). Jack was gasping and sputtering as he had taken in a little water on his bob under and back up. But Uncle Clint reacted very quickly, despite the shock of the situation, and truthfully, I almost felt like Jack deserved a little more of a dunking after the first second of the scare that is sure to give me gray hair early!
As I pulled Jack up into my arms and started to pat him down with a towel again. He was crying from the scare, and gasping a little as he turned and looked at Uncle Clint and said, "Uncle Clint... you saved my life! You ... are a hero! You saved my life!" (Precious for me, Clint's sister, to hear Clint's swift response so genuinely affirmed) I assured Jack that he was right and went into a long diatribe of possibilities from such a thoughtless action to further ingrain what a scary situation that could have been- if, Uncle Clint had not been right there to save the day. For the rest of that day and the rest of the summer, my boys were very quick to tell others' of the day that Uncle Clint became a hero.

Monday, March 4, 2013

MASON’S STORY: WHAT WE DO KNOW

I'm thankful for the opportunity to share Mason's story with you. After Trenton was born, I came across Mason's story because he had a couple of issues that were similar to our son's. I'm thankful that the Lord allowed me to meet Mason's mom Jennifer so that we can share each other's stories and the truth of how God is in control even when in Mason's case there are so many unknowns. It is a blessing to see this family's focus on what is True:

I am fearfully and wonderfully made; your works are wonderful, I KNOW THAT full well.
Ps. 139:14

“More questions than answers.” That’s what the doctor apologizes for every time we come in for a consult about our little mystery man, Mason, who was born with a long list of medical problems and anomalies that haven’t yet been explained.

It would be easy to focus on what we don’t know. After all, it’s been this way since before he was born....from not knowing whether we’d be able to conceive at all due to previous difficulties, then being clueless anything was wrong based on a string of normal ultrasounds, and not knowing how serious it was once he was actually born, or why he had to be transferred to the NICU on a ventilator and needing intestinal malrotation surgery the second day of life, or why he remained inpatient for the next three months though he was full term, on a feeding tube and having seizures his team couldn’t figure out how to control, all the while not knowing if he could even see or hear due to birth defects of both his eyes and ears...or why he wouldn’t grow, or sometimes, stop growing. You get the idea. We didn’t know what caused his endless list of medical complexities, from the tethered cord that’s there one minute and gone the next, to autonomic symptoms and UTIs that just won’t quit, microcephaly and thyroid problems, such a sick immune system he requires weekly infusions of antibodies and sensory problems so severe that he refuses to hold, touch, sit or roll due to his own apparent profound fear of the unknown. No one could give us solid answers about if his “syndrome” was genetic, a random problem or a result of an illness or autoimmunity during pregnancy, or any sort of prognosis at all.

So, while the unanswered questions keep piling up, we decided early on (the week he was born) to not dwell on the unknown, but rather focus on what we do know. It has helped keep us grounded for the crazy-wild ups and downs of the last two and half years.

Here is what we know right now:
God answered our prayer and protected baby Mason through pregnancy for a reason - to us it is a miracle he was not miscarried since so many other babies with similar problems do not make it even to birth. No wonder there are no other babies with his condition. God really had his hand on him to show us He was already at work!
  • God has a plan here and a purpose beyond what we can see, and He will get the glory through it all.We gave Mason his name to represent the fact he’s a "LIVING monument to God's faithfulness" - that God, the ultimate craftsman, built him to be a living reminder of His glory which we see every time we look at him. His middle name, Josias, means "God heals" (he had this name before we ever knew he was sick to remind us how God allowed me to conceive when we weren’t sure it was possible). We know these meanings aren't... meaningless! We believe Mason will live up to them in every way.
  • God has already answered countless prayers for his improvement...two of Mason's multiple heart defects (the PDA and ASD) are GONE. He did not need any heart surgery! His kidneys have also been tested and he does not have reflux of urine so his kidneys should heal eventually too. He has grown to nearly 30 pounds, when the first few weeks of his life he did not grow an ounce. He is making intentional sounds of speech to copy us, has signs and sounds for “words” he knows, shows preferences for toys, is addicted to his jukebox and my cell phone pictures, he laughs the most contagious and loving laugh on the planet, is exploring more than ever with his hands and making progress with myelination on his MRI despite early reports that his brain was shrinking! He is a smart and sweet little man with some physical limitations. It took six months for him to give us his first smile, but we would not trade it for the world—such a hard-earned gift he gives us each time he flashes it!
  • The doctors may consider him “deafblind”, but he can respond to light and focus on colored toys and even grab for them and make choices from objects so we are optimistic he can see more than they think! His flash VEP testing actually showed a “normal” just delayed brain-vision response, on an optic nerve that is 100 percent affected by a coloboma (meaning, it’s completely unfused/not formed together like a 100% disconnected cable that should be connecting a vcr to the tv). He also seems to be alerting to more sounds! Wow is all we can say!
  • God is with us to give us peace and everything else we need for each new day, "our refuge and strength, a very present help in trouble." He is in control and we can trust Him.
  • The journey ahead of us may be long, without many answers... but "though down here we may not understand, we won't let go of the Unseen Hand...for it holds the reasons why." (from the 4HIM song, Why). 
To learn more about Mason, you can go to her blog: http://masonjosias.blogspot.com/2013/02/diy-corner-chair.html