"A Lantern to Our Feet"

Today is one of those days where everything is difficult. I have been totally exhausted for weeks. I went to the doctor a couple of weeks ago and found out that I have bronchitis. I took the antibiotic for 6 days, but I had to come off of it because of yet another allergic reaction. I was then put on steroids, which my body did not like either, but I was able to finish the course. So on week six, I am still not better. I am having trouble catching my breath and I have no energy. I know I am whining, but this lack of energy means that I have to rely on Chuck more and more. He is always busy with work and taking care of us, I really don't like it when I am unable to do more in the house and with the kids.

Besides the normal doctor appointments, I have been working on paper work for out taxes as well as BCMH. It is truly amazing the amount of money we spend on health related items. We do have insurance and some help from the state program called BCMH, but even with that, we still average over a $1,000 of out of pocket expenses excluding our premiums. Many people are in the same shoes and we all struggle, but when I see it all on a page, it is overwhelming. The debt that we have due to our medical expenses is stressful as well.

As an update on CJ, his MRI was normal, thank God. He will see his pediatrician soon to discuss managing his migraines. We have also discussed having him go back to see the psychologist that helped him over the summer.

I think we are closer on making a decision on Elizabeth. She continues to fall without control of her hands. She has suffered a spine concussion as well as a head concussion that caused visual disturbances for a week. We don't know when she is going to fall but there have been some frightening consistencies: an electric shock feeling, loss of control of her body which we think is causing the falling, and traumatic injury when she does fall. The other symptoms are disturbing as well which include numbness in her chest and neck, difficulty swallowing, intermittent buzzing in her hands, dropping of objects from her hands and the constant pain. It looks like the only doctor that we can do anything about it is not at Children's. It is a big decision and the added uncertainty of a child having a surgery at an adult hospital makes it more difficult. I also understand that the doctors at Children's cannot and will not condone such a surgery.

With this I have asked God to be "a lantern to our feet." I know He will show us the way I just have to be open to hear it and accept it in faith. It is proving very difficult to discern. Please pray for us

"For what we see is tempoary..."

Scripture reading for me has been such a blessing. If you think about it, these are 26 letters arranged in a sequence of letters. But after reading these passages year after year, they open up mind-blowing truth that I had no idea about the year before. Take, for example 2 Corinthians 4:17-18

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

In the course of the last 10 years or so, I have read this same passage over and over. But today, it was like I had found a jewel. This has given me so much peace. I read something by Max Luca do today. In this particular passage it talks about the disciple John. John was very close to Jesus. He was a witness to his miracles, healing, sermons, triumph into Jerusalem and only a few days witnessed his death upon the cross. Did John understand why all of this had to happen? Could John grasp that Jesus had to go through all of these really horrible things only to claim victory for all of our sins for eternity? No, he saw a friend go through some really bad stuff and die. (I am greatly paraphrasing Mr. Lucado)

God sets all things for good, even when we cannot see it. Where faith comes in is trusting this. In Forward Day By Day the commentator said that the greatest quote of the bible was "Be not afraid, only believe." (Mark 5:36) What treasures we will be able to claim if we lived out our lives this way. God knows all and is good all of the time.

I want to be very honest with you, I cannot say that I am able to stand on these truths and praise God through every moment of every day. There are many days that I feel like I just can't go on. I cannot face another doctor appointment. I cannot see another tear come from my children's eyes because of pain that I cannot relieve. I can't get my body to move one more step because the pain I am feeling. I cannot face another ambulance ride. But in these moments, God shows up with such power and such peace, I know that I am not alone. He does not leave me in the pit any longer than I want to be there. Some days I choose to be in the pit. I despair and will not be comforted. I have to allow myself to be that way for a time. But I also know that when I want out of the pit, all I need to do is pray and the Shepherd hears my cry and he places me on his shoulders.

Today it was another 3 appointment day. Elizabeth was finally seen by a orthopedic spine surgeon. I believe that God was able to get her seen by this doctor, because only God could have done it. He came into the room saying that her neck was fine, wean off of the neck brace and start PT. All of this before he even looked at her. God showed up in the room and by the end, he was beginning to see that there was more to this story. Please all of you remember that I do not want surgery for her. I know the pain associated with this surgery. That being said, she has been out of school since September. She is sleeping in the dining room. She is unable to play outside or walk on her own for any length without the risk of severe injury. I really don't care what the solution is, we just need one!

This evening, I had to take CJ to get an MRI of his head. He has been suffering from migraine headaches for the last few months. I think the results will be normal, but there is always that unknown. The poor kid certainly has a reason to have headaches! But even if it is due to stress, we need to get them under control.

I reminded all of my kids today that they are all gifts from God and not burdens. I think that they needed to hear that today. CJ could not understand that he is a gift to me. I told him that if I treated him like he was a burden, I was insulting God, but cause he blessed me when he chose me to be his mom.

I might have another outlook tomorrow, but I wanted to claim my praise for a God that loves us enough to let us choose to love him. He is patient to wait for us to decide to call upon Him. In no way am I claiming to be righteous and anyone that has known me for any length of time would not use that adjective to describe me but I love this verse:

"The righteous cry out and the Lord hears them. He delivers them form all their troubles. The Lord is close to the brokenhearted and save those who are crushed in spirit. A righteous man may have many troubles, but the Lord delivers him from them all." (Psalm 34:17-19)

May all of you that say prayers on our behalf be blessed as well. Someone told me on Saturday that his prayers for healing for Erica did not happen and I disagree. There is healing and then there is different healing. I do not believe that God ignores our cries for healing. He frequently answers our prayers differently or not at the time that we think it should occur, but he does answer them.

Extremes

It seems that every day we are amazed at the extremes in our lives. Elizabeth has has been in incredible pain lately. The last two days she has not wanted to move. If you ever met her, you would know that this is not like her. Attempts to reduce her pain are not helping. I contacted some of her doctors and they suggested an EMG. I am really hoping that the pain will resolve itself before they push too hard for this test.

An EMG is a test that checks to see if the nerves are firing correctly. It involves sticking needles under the skin and running an electric charge down the nerve. Erica had one done last year and it was awful. She took medicine to calm her and keep her from remembering the test, but it did neither.

I think that the muscles in her neck are so tight that they are pushing on the nerves which is causing the pain. I think this is a similar pain to what I experienced before my last surgery. I wanted to gnaw my arms off! There is really no way to reduce the pain.

I took my family members to at least 8 doctor visits this week. One of those visits was for my son. He has been complaining about headaches. At first we thought the headaches were due to a change in his prescription for glasses. The headaches have increased to almost daily and now he is sensitive to light and sound. He also is seeing flashes of light and a ringing in his ears. I truly thought these headaches were due to stress. I was shocked that the doctor wanted and MRI.

I am not quite sure why it shocked me after all we have been through, but it did. He classified them as migraines and he seemed very concerned. Again, I thought he would send him back to counseling and very reassuring that it was probably nothing. The doctor did neither of these things. He came in smiling and left concerned and writing prescriptions and sending him for testing.

I still think that it will come down to stress. This kid deals with more stress than any one should have to endure. He called himself a "human elevator" when I asked him what it was like to be in our family. This shook me to the core. My husband and I intentionally do not ask a lot of him. He knows that he is one of two able bodied members of our family. He does many things without being told. He said that he feels very worried when my husband leaves out of town on business. It makes my heart ache when I think of the pressure on this kid.

Elizabeth watched a movie today called "Beyond Narnia." It was a about C.S.Lewis and the character played Lewis narrating the story of his life. It was a very well done production. It was the very end of the story where Lewis describes the agony of losing his wife to cancer. He doubts his belief in God. Desperately he looks to God and asks for an answer to why. He said that God said nothing. He only looked at him with a compassionate face. He said that it was like Aslan. In the story his mane was cut off brutally then he was murdered. But he came back to life and he was stronger than before. His mane was even more impressive. But if one was to look carefully, you could still see the scars.

I think my kids will be incredibly strong after all of this. They will be able to withstand anything that life throws their way. This will come at a price. Their roots will run deep and their foundation strong, but their is much they must endure.

As a mother, this horrifies me. I have some days that in consumes me. But "Perfect love casts out fear." And there are times that I can allow that love to consume me as well.

On the other extreme, we are seeing the hand of God at work in our lives. He has done some many things on our behalf that it amazes us every day.

The organizations that have agreed to help us with our home modifications are called Hearth and the Cincinnati Occupational Therapy Foundation (COTF). They have agreed to help us with the whole project. The total cost, if we were to attempt this on our own would be close to $100,000. But because there have been so many people willing to help us, the cost will be lower because of donated labor. This is so amazing, I cannot quite describe how humbling I feel. Just knowing that there are others willing to work with us and help us in any way they can is hope enough to keep going. But help that will be so needed and expensive and impossible for us to do on our own goes beyond what words can say.

Here is a link to the COTF http://www.cintiotinstitute.com/cotf/. They are the ones that will accept donations on our behalf. It is tax deductible. We are going to need as much help as we can gather to get this done, but I have confidence that God will not abandon us now. We have comes so far and have seen Him move mountains!

What is That? A Light at the End of the Tunnel?

Unbelievable blessings continue to rain from the sky. We are seeing things that God set in motion years ago to help us that this particular moment. I am amazed at how beautifully His plans unfold. We know God is with us right now. His presence is wonderful.

The elementary school where two of my children attend had a fundraiser for our family. The principal and my daughter's teacher with the PTC did all of the work. There were hundreds of people at this event. My oldest daughter was not able to attend so my husband went. He said that every time he turned around, some one else was offering help or giving encouragement. He said he spent the night in tears. He was so overwhelmed by the compassion and love shown to our family.

Another example of blessing came from the lady we hired a company to come out and evaluate our home. I mentioned that she talked to some architects pro bono. Well, she did much more than that. She has presented our story to charitable organizations here locally. She said that before she could even come to the part about asking for help, they already offered it! She has spearheaded a giant renovation plan with accommodations for all of us. This is life changing stuff she is doing! The groups are Hearth and Cincinnati Occupational Therapy Foundation. They are like angels and I believe that they are doing God's work. We are so humbled by their efforts, money time and care for our family. If we can make our home safer my children and I will see a huge benefit in the level of pain.

The next day we were visited by a support coordinator from the Board of Developmental Disabilities. I had applied thinking that maybe they could help, but I did not think we would qualify. Not only did we qualify, but we approved on emergency status! This means that there is a possibility that some of the materials that need to be purchased for the plan from Hearth could be funded through this program! I spent a long time in the special education field and I rarely had a family that received this support. I have never seen it happen so fast and in such a complete way! God had it all arranged. Even the support coordinator admitted it was the "hand of God" doing all of this for us!

If we can keep us from traumatic injury and strengthen our bodies we have a chance to lead a more normal life. We have a chance of avoiding big surgeries in the near future. We have a chance of living without so much pain.

We praise God for all of this because all of my effort lead to years of frustration and anger. When I finally realized that I could not do this and God could, He has shown me that His way is much better!

God is So Good

Here is what we know right now. First, Elizabeth is still falling. So far she has fallen and received a concussion to her spine and to her head. The spine left her numb in the chest and neck area. The head concussion left her eye sight distorted for a week. A pattern is forming that is disturbing... she is not putting her arms out to catch herself. When anyone falls, there is an automatic reaction to put out your arms to protect yourself. Elizabeth keeps falling and she is getting injured so severely because she is not putting her arms out.

This was confirmed, at of all places church! We went to service on Ash Wednesday and I promised CJ that if he was asked to acolyte, I would serve with him. We brought Elizabeth in her wheelchair. I glanced up and saw that she came up the stairs for communion. I saw that Chuck was right behind her. I did not think anything of it until Fr. Daggett told me to leave the alter and go to the sacristy. From there a friend of mine directed me to Elizabeth on the floor.

I cannot relate the picture I saw. She was lying with her hair encircling her head like a hallow. She looked beautiful, but she was hurt badly. Her left leg was twisted horribly and her neck did not look right.

I found out that Chuck did follow her up and back from the communion rail but she went into the front pew from the other side. She was only a couple of steps ahead of him and she just collapsed. She said that her hip and her shoulder were out.

I thought that since her shoulder was dislocated that she put her hands out, but that was not the case. The people in the pews said that her hands did not break her fall, she just fell backward. She dislocated her shoulder from the impact from the fall.

I say that God is good in this situation because He is. Elizabeth stayed very calm through the whole ordeal. We tried to put her shoulder back in, but she made us wait until the service was over. She thought the church would empty, but people just stayed and offered to help and prayed.

The only time Elizabeth cried is when we tried to put her shoulder back in. The rest of the time, she was so calm. When I was close to her, I could smell God's presence. I am not quite sure how to explain it other than it was beautiful. God wanted us to know that He was there and He was in control.

The Hamilton fire department was wonderful and saw the obvious dislocations and loaded her up into the ambulance carefully. But, as with most of our adventures, by the time she made it to the x-ray table, she was already back into alignment.

Why go? Well, we could not risk moving her wrong which could have torn her hip tendon more, or injured her shoulder as well. The biggest problem would have been her neck. She hurt it again with the fall.

We left the ER with her parts snapped back in place, but we know that it was not an accident. For some reason, God had a plan. I am claiming this publicly so that I can look back on this some day and hopefully understand it more, but I might have to wait until I am with Him. Either way, "Those that put their trust in God will not be shamed."

God is Getting our Attention

It seems that God wanted the attention of the doctors once more. As I said in my previous post, Elizabeth fell backward down a full flight of stairs. Well, we just found out how good God is when she went back to the spinal surgeon. She has fallen two more times. Once was out of bed and she broke her neck brace (no, I am not kidding) and the other more serious in the bathtub. The last fall made her hands numb and gave her a spinal concussion. When the spine orthopedic surgeon heard about the last fall, he ordered a regular MRI and a rotational CT scan.

She went to visit this same doctor that operated on Erica, my mom and me. Just last week he told my mom that she has cranial/cervical instability. Basically her head is not attached to her body. This was devastating enough, but when he told Elizabeth that she has it too, we were blown away. When the doctor saw the image of her instability, he was very pale. He said, "There is no physical reason for her to be living right now. God took care of her." We both knew we were looking at a miracle, there was just no denying it. I asked if the fall could have done this damage and he said no, it was not damage that we saw, it was the way she was born. He said, "The fall was God's way of getting our attention."

To be honest, I knew that this doctor had another way to detect the cervical spine instability, but I thought I could wait to find out for Elizabeth. She had been going through so much with her hip, I could not bear to know about this too. But, that was not God's plan.

She was supposed to go back to school this Tuesday. Needless to say, she is not returning until the issue of the stability is solved. Some of the doctors wonder if the instability created some of the clumsiness that she has experienced. I don't know if that is true, but I do know that God has taken care of all of us.

She is very down and frustrated right now. I cannot blame her. At best, she is looking at brain/neck surgery very soon. Some of the doctors would like to wait until her spinal concussion is healed.

All I know is that just a few months ago I was reassuring her that she would not need a wheelchair or the major surgeries that we have all had to undergo. I never envisioned Elizabeth being in such a state as this.

It breaks my heart to see her so isolated and lonely. Her bouncy personality has taken a hit this week. I think we have all had a major hit on our enthusiasm recently.

What is really frustrating is that our house is the source of so many injuries. The stairs and the bathroom and so dangerous. We are trying to find help with these issues, but it is very time consuming and humbling.

This Friday, the elementary school is holding a benefit for our family. We are overwhelmed at the idea that people would go out of their way to help us. We continue to be blessed abundantly each and every day.

As much as I am excited to see miracles and receive such incredible blessings, as a mom I just ache for all of my children. CJ is really struggling this week. Please pray for all of us.

What Would You Do?

Please let me thank all of you that have continued to pray and support our family. We consider ourselves blessed every day because of the unbelievable miracles that occur daily.

Elizabeth took a tumble down a flight of stairs yesterday. We had another ambulance ride to Cincinnati Children's, but nothing broken. She is wearing the 'always in style' cervical collar because she hurt her neck. Her hip was banged up, but she is better than Humpty Dumpty. Considering what could have happened, we are very blessed.

I know that God is watching and protecting all of us and calling many to pray around the world. The other day a wonderful brother in Christ visited us from Pakistan. He is a bishop and runs a church and Sunday School for a small community of Christians. He told us that he has a bounty on his head of 100,000 rupees. The Taliban are anxious to silence this dynamic man of God. When asked if he was going back to Pakistan, he said yes. Then with an intensity that I can still feel he told us that he would go back because more people needed to hear The Good News. He has been in prison, tortured, hunted and threatened, but he will not be silent.

Recently, the Taliban burned the church along with over 200 homes of Christians of his congregation. He resolves to return and continue working with the people and especially children so they will know the unfailing love of God.

He said that he came to the US to remind people here of the Good News. We can go to church any time without the worry of death or torture. The persecution comes in the form of shame or being "politically incorrect". We sleep in on Sunday because we work too hard, have a hangover, too sick or have too much work to do. Would we go to church if that meant that we might not live if we openly worship Jesus Christ? Would we go if that meant that our children would be hurt?

This bishop that came to our country as a missionary (think about that for a minute) told us that as good as we have it in the US, this is not Heaven. Heaven is much better than anything that we have now. Our problem is that we are over fed, content and sleeping. We have everything so we think we don't need God. We think because we work hard, it is our work that supplies our things. I say "we" because I am not immune from such thinking.

I really have to think about if I would continue to be a follower of Christ if it came with the consequences like our Brother in Pakistan faces daily. I would like to think that I would not cast down my faith and deny Christ, but I am not 100% sure.

What would you do?