Friday, June 27, 2014

From "A Grief Observed"

I came across this passage in the book, "A Grief Observed" by C.S. Lewis, and I found it very applicable to what I have experienced:

"No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting. Yet I want the others to be about me. I dread the moments when the house is empty. If only they would talk to one another and not to me."

What seemed to me to be depression and fear after Trenton was born and I was by myself, is described by Lewis as grief. It's an interesting thought. I remember when my husband had to go back to work after Trenton was home. He had to leave at about 4:00 am for work, and I remember being gripped by fear. The silence of the house is what made it so much harder in those early mornings. Once we were up and into the routine, things got better. I still feel it sometimes. I think it is fear, but I think it is possible that it stems from an overarching grief. It's changed. It's gotten better. But the fear often is still there. The fear of "what if" is one of the most awful fears there is. 

I also remember the "invisible blanket" he describes. I felt it when I first was able to go shopping once we were home. I felt like I was gliding along in a blur of sadness. I felt self-centered, and I was. 

Fear is a sin when it does not deal with the natural reaction to danger, so it is hard to reconcile this with the grief that Lewis describes. I know that grieving is not sin, but perhaps when it grips us in such a way that it affects us physically or in other ways, then it becomes a sin. The same is true for being self-centered.

There is so much as one looks at grief that seems like it could be sin in another circumstance. So where does God draw the line? 

Saturday, June 21, 2014

Being Informed - You Could Save a Life

You could save a life.

It's not something I realized until our son was born. I always had an interest in medical things, but I never had studied that much into genetic syndromes. I knew about the common ones, but I had no idea that there are so many genetic mutations possible for children. Ignorance is bliss until you are faced with a problem.

Having a basic knowledge of medical issues, genetic syndromes and what they entail, could save your own child's life, and it could save someone else's. It would be of course impossible for us all to be experts in such things. We also do not want to go around telling people that their child looks like they have a genetic mutation. It might not go over well. There are times however, when you might run into a parent who brings something up to you. Maybe they are concerned about a problem that they notice in their child. Maybe they notice something different about the child's appearance or actions. If you have a little knowledge, then you could at least steer them in the right direction.

I didn't have much use for geneticists, and I still do not think highly of the one we had for Trenton, but they have an important job. When Trenton was born, unfortunately, he was moved around and his geneticist lost track of him in the shuffle. The regular doctors and even a neurologist did not pursue genetics and the neurologist past off his condition as something that he obviously did not have. It was one of our NICU nurses who told us that we needed to call in our geneticist that made the difference. One of her best friends had a son with CHARGE syndrome and she suspected that Trenton did also. She also informed me that I was my son's advocate. This nurse was one of the most helpful people we came in contact when Trenton was born. The geneticist came, and was pretty sure that that he did have CHARGE. When the eye diagnosis of a coloboma came back, she ruled it positive even without a blood test confirmation. We had a diagnosis because someone had a friend - who had a son - with CHARGE. Blood tests did also confirm the diagnosis.

You may wonder, as we did, why a diagnosis is important. The reason a genetic diagnosis is so important is because many of these syndromes are not just one issue. Usually, there are many issues involved with various organs. For Trenton, it was the eyes, ears, heart, and kidneys (slight). If Trenton had been born without our knowledge of any problems with anything, then the first problem to show up would have been his heart. If he had lived through that, then it probably would have been a long time before we would have known he was deaf or had anything unusual with his eyes. Thankfully, his kidneys are just a little different but not life-threatening. My point is that knowing an overall diagnosis will make doctors look at the rest of the body. This could save a life.

So if you know someone or have a child that you find out is hearing impaired, is missing a kidney or has other kidney abnormalities, or has some issue with the heart, now you might wonder, hmm... I wonder if there is an overarching issue? When you talk to your friend, you can discretely ask. You know your friend, so you know how to best do this. You could save a life. Issues of the heart can be unnoticed for a long time and suddenly cause problems. Trenton's would have died within days, but that is not always the case with congenital heart defects.

This blog post is not to make you worry, but it is to make you realize that a little knowledge is not a bad thing. You could save a life.

Thursday, June 19, 2014

Grieving, Forgiving, Moving on...

We all grieve.
We grieve over loss.
We grieve over hope deferred.
We grieve over mistreatment.

There is nothing light or insignificant about abuse. Abuse can come in many forms, but it usually happens when someone older, stronger, or bigger physically or emotionally takes advantage of someone who is younger, weaker, or smaller physically or emotionally. We have all been abused in some form. Some abuse is more difficult to forget than others, but the process of overcoming abuse is very similar for all victims.

There is always going to be grief when abuse takes place. Whether it is a little child crying after being bullied on the playground or a young woman who is raped. These are opposite extremes that will have differing levels of grief, but there will be grief. The grief of one may be for a few minutes, the grief of the other could be there in some way for life.

In the process of grieving, there is another step that must take place. Forgiveness. This is where some of you might stop reading. I have recently encountered some resistance in this area. There are those who would say that forgiveness is an essential step in the healing process after abuse, and I would have to agree. It would not be easy to forgive a person who raped you or physically abused you. It would probably be the hardest thing you will ever do, but it is essential. How do I know it is essential? The Bible provides at least two specific instances of forgiveness in extreme abuse.

Picture our Lord Jesus on the cross. He has been whipped, beaten, and nailed to a cross. In the process of being crucified, He calls out to His Father and says, "Father forgive them for they know not what they do." Luke 23:34. Christ is fully God, and He is fully man, so the decision to forgive would be similar to what we would experience in forgiving someone who abused us, but it would be so much harder in His case, because He not only took the abuse physically. He also took our sins and the ensuing separation from His Father.

Another biblical instance of forgiveness in extreme abuse is Stephen. In Acts 7:59-60, Stephen is stoned. As they are stoning him, he kneels and calls out to God asking Him not to lay this sin (stoning) to their charge. He forgives them in the midst of being stoned. Some would say that telling a counselee to forgive their abuser is not their place. They might say that someone should not have to rush into this. Biblically, we see that it should be an automatic response to abuse.

If you have been abused in some way, you will grieve. You should forgive. You should move on.

Moving on may seem impossible, but it is Biblical. Philippians 3:13 says that Paul does not claim to be perfect, but he has attained one thing. He has learned to forget what is behind him and reach forward to what is before him. He says that he presses on to the high calling of God in Christ Jesus. This is not possible if we hold on to an unforgiving spirit toward those who have abused us. Holding on only breeds bitterness. This bitterness will not only keep you from from going forward, it will defile those you touch. Your bitterness will seep out of you and into the lives of those you love and those whom you are influencing. I am not saying to stop grieving, but grieve with the hope that you have in Christ as you forgive and move on, because no matter what you go through, His purpose in your life is to ultimately make you better.

I do not take any form of abuse lightly. If you have been abused and it was a criminal act, then it should be reported. There should be punishment to the offender, but this blog is not about the offender, this is about you and I learning to grieve, forgive, and move on after being abused. If you need counsel, seek someone who will tell you the truth of God's Word and not just what you want to hear. None of us like to do the hard things, but sometimes even when we are the abused, we need to do the hard thing and the right thing.

Friday, June 13, 2014

Learning not to Take Offense

It is so easy to be offended. I have probably been one of the most guilty of this bad habit.

I know it seems like I'm writing a blog called, "Everything I Learned About Life, I Learned From my Child with Special Needs." Although that is not necessarily the case, there have been many lessons.

The one who has taught me the lesson of not taking offense, to some degree, is my son Trenton. It would be easy to be offended when I try to play with him and he rolls the other direction. At times it has been hard, but it is more of a sadness than being offended. My son doesn't know any better. All he knows is that I'm invading his bubble with some silly, bright colored toy. Or my long hair is tickling his face. He has gotten better with some things, and sometimes I think he is teasing me when he rolls over away from me. I have also learned not to let people offend me concerning him, and I'm sure that has helped with this general lesson.

The other day at the beach, we had Trenton in his stroller, and Braydon was walking with us. A man on the beach, stopped and told us that when his son was our son's age, he made him crawl on the beach. I was confused, because I figured he was talking about Braydon who was walking. I didn't think he could even see Trenton. We assumed later that he was talking about Trenton. It's one of those times that it would have been tempting to really put someone in their place. He was obviously ignorant of anything wrong with Trenton, but that's another lesson for us to always be aware before we open our mouths.

It's not as difficult to let these disappointments roll off my back. I've become accustomed to them What about the little things that still offend that have nothing to do with Trenton? It's so easy to think that people are thinking the worst of me. Sometimes if someone isn't your favorite person, you might even come up with little things that they said or did, so that you have more excuses not to like them. It sounds pretty bad, but I know I've been guilty of this often.

I think we have come to believe that being offended is our right. That is not really the Bible's take on this. The Bible talks about Christians being careful not to do things that might cause others to be offended, but He is not saying that the ones who are offended are correct. In 2 Corinthians 6, the Bible talks about us not taking offense for the sake of the ministry. In the ministry, you almost have to roll with the punches, but it is not an easy thing to do. There are many people in churches who do not have a filter with what they say.

Even with daily facing a son who doesn't reach for me or love my kisses as much as I would like, it can be a constant reminder to love others who offend who may be just as oblivious to their offensive behavior.

Friday, June 6, 2014

Stereotyping or Being Stereotyped

Being stereotyped is something that many of us have probably experienced. It's usually not a good feeling when this occurs. Whether you were given a part in a play because it "fit you perfectly," and you knew the context was negative, or you did not get a job you had hoped for because of preconceived ideas. It is difficult.

When you have an illness, special needs, or a child with one of these, stereotypes are common. I know that there is the assumption with Downs Syndrome that all people with this syndrome are happy all of the time. This can be true for the most part in many cases, but there are always exceptions. I met a lady who has a little girl who has a little girl with Downs Syndrome and does not have that personality. I think it was probably hard for her if people made this assumption, because she really had thought that with all of the other trouble it would be nice to have a child that was always happy.

With CHARGE syndrome, I find myself often stereotyping my own son. People are always saying kids with CHARGE are so stubborn. This may be the rule, and it is true with Trenton, but I can't use it as an excuse for him. We need to get past that and try to overcome the negative stubborn habits and turn them into a positive thing that will help him to overcome his problems.

I think cancer patients also struggle with stereotypes or generalizations. I've never been there, but I would imagine that most people have a general picture of cancer. The problem is that so many cancers are different. It's important not to make assumptions when talking to people going through this struggle.

People with learning disabilities, autism, or just different personalities can also be stereotyped. The problem with this is that the gifts of those with learning disabilities and autism often far outweigh their problems. There is such a broad range of issues, and some people really do not have as many problems as others. We should never treat anyone different because of a label.

I encountered an issue with this when applying for a job several years ago in regard to personality. It was a job selling books for a marketing company. I didn't know I was good at marketing at the time, but I did know I was an artist. To me, creativity was a bonus not a detriment. To the interviewer, this meant that I would not be able to the handle rejection from those to whom I was selling. It's sad but true that snap judgments are often made. I've worked for several years now as a marketing writer, so I guess it was that company's loss. I don't hold bitterness from this because it was God's plan and a way to teach me this lesson.

Thankfully, stereotypes do not define us. Labels are helpful tools, but can be used detrimentally. We must not stereotype, and we must not let others put stereotypes on us that we grow to believe. It is easy to let feelings of sadness grow as we see our children or feel ourselves being judged in this way. It is important for us to remember that the only opinion that truly matters is what God says. In His eyes we are sinners, but once we accept His free gift, we are sinners saved by His grace.

Thursday, June 5, 2014

When we Respond Like Job's Wife

In a recent prayer meeting, I was reminded of the reaction of Job's wife to her trials. As most people, I had initially been judgmental of her. What kind of wife tells her hurting husband to "curse God and die"?  Those are some strong words. Since my initial response, there has been more written about Job, and more study has reminded us that she also lost her children and most of their wealth, not to mention the fact that her husband was hurting. Where could she turn?

Job is hailed in the Bible as a man who turned away from evil. His wife is not mentioned until we see her negative response. She might not have been strong. Perhaps she looked to Job for a great deal of her strength, and when Job was down, she felt lost. She may not have had that close relationship to God that Job had. She was still touched by the loss that Satan requested from God for Job, but Job was the one ultimately being tested. We have no idea of her ultimate response except to know that God did bless her. He gave them more children and more wealth. She too experienced the blessings of the Lord despite the fact that she did not respond in a God-honoring way.

We may not have used the exact words that Job's wife used in her trials, but some of us may have come close. None of us are beyond responding poorly in our trials. Although we don't know that Job's wife actually did repent of her wrong spirit, we see the contrast with Job, and we know that repentance is the right response.

When we cry out to God or lash out at those around us while we are hurting, it really just makes the hurt deeper. The grief we feel may be beyond words, and we may question the plan of God in our circumstances. In all of this, remember Job and his response. Look at his repentance, and look at his blessing.