Saturday, March 27, 2010

"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

Tuesday, March 9, 2010

"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.

Friday, March 5, 2010


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 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!