Thursday, November 26, 2009

She Will Straighten Them Out!

You never know what might come out of Erica's mouth!

The talk in the house has been all about Elizabeth's arrival to womanhood. My mom and I tried to make it a celebration and took her to dinner. Everyone in the house knew what had happened, or so I thought.

Erica told a friend that Elizabeth now knows how to straighten out men. I was really confused about why she had said that. When I asked her see said she had heard us talk about "menstruation" and she was convinced that Elizabeth had learned a great secret of life!

Of course, the boys in the house all agreed that Erica's assessment of the situation was more right then wrong!

A New Record

Seriously, I need to think about changing the name of this blog. I don't want to have more material to write about! I would like to have a nice, boring night.

My mom invited our family over to celebrate my birthday. We went by and picked up my grandma and drove to Mom's house. Mom lives in a cute little house in Hamilton that is all one level. You would think this would be a great place to be for my girls because of this fact. Well, the last time we were there Elizabeth tripped on a vacuum chord and injured her hip. This was a couple of days before the ambulance ride from school back in September.

Anyway, Elizabeth and my mom made a great dinner and we were just about to eat when I see Erica's legs give out as she was coming around the corner. Her ankle then gave way and her full body weight landed on the ankle she broke over the summer. I knew it was bad before she could even cry. It reminded me of the slow motion footage they have during football games where everyone winces.

Chuck took her to a bed and we applied ice. She said it was broken and from the look of the swelling, I guessed she was right. I called the girls pediatrician and he told us to bring her into the ER.

Chuck said that he would take her to the ER, but Erica was not happy about this. I think she cried more about me not going then she did about the injury. I stuck to my guns because I thought we could salvage a little normalcy from the evening.

The rest of us ate dinner and started to clean up the kitchen. My mom said that she was doing better, but I could tell she was tired. I was anxious to get home myself. CJ and Elizabeth were helping me clean up. I sent Elizabeth to find my purse. She walked into the family room and apparently twisted as she walked.

She felt a pop in her hip and just froze. She was around the corner so no one saw her. She wanted to keep this quite as it was already a crazy night, so she called CJ to her. CJ then came to me and whispered that Elizabeth hurt her hip.

When I looked at her I could tell she was in a lot of pain too. I tried to help her to the floor, but it was difficult. Try to sit on the floor without flexing your hip some time, it is almost impossible.

We finally got her down and I tried to reduce the joint. I just did not have enough strength. I tried to have CJ hold the top part of her body while I pulled, but it was not going back in. The only person able bodied enough was Chuck and he was already in the ER.

I decided to take my grandma home and stop by our house to pick up a TENS unit, pain meds and a heating pad. As I was in the car, I got a call from my mom saying that Elizabeth has to use the bathroom. No one could help her go.

I tried to call Chuck but the cell phones get no reception in Children's ER. I went back to my mom's with the stuff and see if she could put it back in herself. By this time, she had been down for quite a while. I decided that I would head to the ER and swap out duties with Chuck. I was hopeful that he would be able to help her at least go to the bathroom.

I called the front desk of the ER and explained that I had to get a hold of my husband. I did finally talk to him and he said that Erica did indeed break her ankle. Then I told him about Elizabeth and the whole bathroom deal. I told him I would switch out with him. The ER staff had to think we were mental!

Chuck raced back to my mom's house only to find out he was too late on the bathroom trip. Mom was very resourceful and laid down plastic and a bunch of towels. By then Elizabeth had had the TENS unit on, pain meds in her system and heat applied to help make the realignment easier. He tried repeatedly and it was not working.

Chuck called me and I called our pediatrician back. I told him what we tried and for how long. I asked him if there was anything else we could try so we could avoid going back into the ER. He told us what we knew was coming... go to the ER.

The question was, could Chuck get her into the car by himself. Being the stud he is, he was able to get it done with a little help from CJ. We were all relieved that we did not need another ambulance ride. Then the decision had to be made about which ER. The smaller, closer ER did not have an orthopedist. If it was dislocated, they would have to transport her to the base hospital in downtown Cincinnati. I told him that by the time Elizabeth gets into the car and into the ER, chances are her hip will already be back in place so we would take our chances and go to the closer ER.

So Chuck is back for another episode of ER. We have had multiple trips in a week, but this was a new record; two trips on the same night!

Elizabeth's stay was longer because of a trauma case came in during her visit. The ER doctor was successful eventually in popping it back. It did not show up on the x-ray, but everyone could tell when it popped back. She was relieved immediately.

A couple of days later we talked to another doctor and he thought it was a tendon that was in the wrong place. It still hurts like crazy, but it would not show up on the x-ray.

Everyone was finally home at 2:00AM. Again, when can we have a nice boring evening. I feel like I am on the world's craziest roller coaster and I want off!

Wednesday, November 18, 2009

Heaven is a Face

I don't know if you listen to Christian pop, but there is a guy named Steve Curtis Chapman that has a song called "Heaven is a Face." For those that don't know about the song, it is about his daughter that died last year. She was adopted by he and his wife and she was the subject of the song "Cinderella" another beautiful song. Anyway, the little girl died last year in a car accident and the subject of "Heaven is a Face" is describing all of the little things that he misses about his little girl and that heaven will be like it was before she died. He goes on to say that he knows that heaven will be all of this and more. It was also a reminder that Mr. Chapman would consider what we are going through with our girls as "heaven" as well. It really helps put things in perspective.

The reading in Revelation 21 was just what my soul needed today. The description of the new heaven where every tear is dried and there is no pain. The promise that all that is in the world of troubles we live in is not our eternal hope. Nothing that the deceiver can throw at us can keep us from fulfillment of that promise!

I started this email earlier this evening. Since then Elizabeth dislocated her hip again.

Heaven for me will be where my kids don't cry themselves asleep because of pain.
Heaven is a place that my son does not worry about his mom.
Heaven is a place that my husband does not look so helpless in the operating waiting room.
Heaven is the place that my baby girl wants to go because she does not want to hurt anymore.
Heaven is where my mom is free from pain and despair.
Heaven is where there is no enemy.
Heaven is where there is not the sound of an IV.
Heaven is where there are no doctor's offices.
Heaven is where I will be able to run with my kids.
Heaven is where I don't have to explain EDS to first graders.
Heaven is where I will be with God.
Heaven is where I will be complete.

Already Convicited

The first night that Elizabeth was in the hospital it was rough. We had to miss Erica's debut in the school play and she had a leading part as a first grader. Elizabeth finally got to sleep at around 4 in the morning and so did I.

At 5, there was a knock at the door and I was met by a police officer telling me that I had to go with him. Frantically, I am trying to remember if I assaulted any of the doctors yet, and the answer was no. I asked him why, feeling very uneasy about leaving Elizabeth because I promised that I would not leave her alone in the hospital. We are less than a day in and I was already breaking my promise.

He explained that someone had broken into my car. I explained that a break in was not the worst part of my day, I again was reluctant to go. Finally he told me that a report had to made and I had to go to the parking garage with him. On the way down he told me that this had not happened in years and only 3 cars were targeted.

Of course, now I am laughing because why should I expect anything less! Seriously! I go down and realize that nothing of value was taken. The car is still there, the garage door opener still hung on the visor. The glass on the passenger side was smashed and glass was strewn all over the front seat. The glove box was torn apart and our CD collection was rifled through, but none were taken. Then I noticed that on top, the audio book of Billy Graham's life story was left untouched.

Of course the police officer and the other victims thought I was nuts because I thought this was really funny. The potential thief not only did not take anything from us, but if he had any sense at all he left convicted by a higher court before he left the car!

Tuesday, November 17, 2009

The Game Changer

The day began with my husband and I explaining to Elizabeth that the doctors cannot find a way to surgically repair her hip right now. Chuck and I had known this was probably the outcome of the inquiry of other surgeons, but we had a little hope. Apparently Elizabeth had a lot of hope and was devastated when we told her. Chuck quickly tried to cheer her up, which just send me into a fit. She just learned that no one can help her hip feel better and she will only get worse. This did not seem to me to be the time to expect her to look on the bright side. My anger did not help the situation. I did tell her that this non-fix answer is not acceptable and we would continue to ask and push for a good solution.

I checked my email this afternoon and there was an article from EDNF (Ehlers-Danlos National Foundation). The article was about a young woman that was a star basketball player. She hurt her hip and had a couple of unsuccessful surgeries until the doctors realized that she had EDS. It is amazing how God can use so many ways to comfort us when we are low. I printed out the letter for Elizabeth to read. She wrote a letter back immediately. This is what she said:

Hello, my name is Elizabeth Schulze. I am 11 years old and have the same condition. I have a tear in my hip and found out today that they can't fix it. Your story helped me get through the bad news by knowing that someone else understands what I feel. Thank you for letting me know that I am not alone and neither are you.

I had been emailing all of her doctors and Erica's most of yesterday, so I intentionally did not do much today. It was 7 hours of almost no stop communication with doctors, therapists, insurance companies and bill collectors. By the end of the day I was physically ill with worry. Of course, I had received the news about the hip yesterday. I was also waiting on an answer about my mom.

Here is the deal, back before my C1-C2 fusion, I had a really bad spell where I was passing out, disoriented and so on. I was hospitalized a couple of times and the doctors found a lesion (bleeding) in my brain stem. There were many theories about why and no one really wanted to tell me much other than it was there. I know I did not have this problem 16 years ago because I had a MRI done after I was in a bad car accident and no bleeding was shown on that brain MRI.

My mom had surgery last summer and was in ICU for 18 days because she did not have the drive to breathe. The doctors insisted that it was not neurological. Well, she had another surgery this summer and she did not breathe again after surgery so finally they decided to get some answers. Mom got an answer today. She also has a bleed in her brain stem.

A few weeks ago Dr. Tinkle talked to me about the possiblity of Mom having a leision as well. I asked if this then could be connected to EDS to which he replied, "It would be a game changer."

Mom told me the news on the cell phone as I was in a restaurant with my family celebrating the 16 anniversary of our first date and my birthday tomorrow. I looked across the table at my kids. They are so beautiful and fun. We were all laughing and talking. The thought that at any moment I would not have the privilege of seeing their smiling faces, made that moment all the more sweet.

To be honest, I am more relieved than upset. My dad lived to die. He got a deadly diagnosis and died long before his earthly body did. I will hope to never do this. I want to enjoy and love and live every moment. Through all of our trials and tribulation there have been extraordinary times of joy, peace and love.

Do I think that I am going to die anytime soon? No. But I do want to enjoy all the time that I can. I want to make the most of the time that I am not in pain or in a doctor's office. I want to remember that this life is not the end. This is not our home. Our home is a place where tears are not shed and pain is not felt and debt is not remembered.

I am not sure what the outcome will be from this news. I do not know the implications that this will have on my daughters. I don't think the doctors even know. I do know that this illness is not who I am and not who my mom is or who my girls are. We are not broken. We are what we are supposed to be and not mistakes of a gene. We are loving, caring, strong, intelligent females.

Monday, November 2, 2009

You Are My Protection by CJ Schulze

This is a psalm that my 9 year old son wrote on his own this summer. I read it often as it gives me hope. Again, my children minister to me. I cannot take any credit for this. This was between God and my son.

You Are My Protection

You are like a big, big tent.
No evil spirit can get through you O Lord.
When he tries to attack, you protect me.
because you are my protection!
You warn not to go to far,
but some people disobey.
Some fall off of the dark bridges,
but you grab them and they are safe.
But some walk into the dark tunnels.
You see both doing bad.
The Lord saves them both
but they both have consequences.
Lord you are my protection.
You loved the world
You gave your only begotten son.
We all sin.
We ask for forgiveness.
You send that sin to the foot of the cross.
You forgive us.
He doesn't forget about you.
He still loves you.
We practice and practice.
We get better but not perfect.
The only man who was [perfect is Jesus.
He is always with you.
Lord, you answer all of the prayers.
We might not think that,
but He does.
And Lord you're my protection.
When we walk in the dark house,
You shine your flashlight on us and we are okay,
but we still have consequences.
No evil can defeat you.
Lord, your my protection all of my life.
I am glad you don't let me down.
Your tent is like love, faith, joy and hope.
You keep me safe.
You watch me from heaven.
We are made in God's hands.
Not me or you look alike.
And don't you forget that God made you special and he does not forget about any of you.
Lord you are my protection.

Despair Shrinks Your Brain

Much has happened since my last post. Last Monday we attended a "care conference" with a few of her doctors to discuss her hip injury. The problem is no one has attempted to repair a torn hip tendon on a child with HEDS. Next, the attempts that have been made to surgically repair torn hip tendons on adults all have failed. Again, we are faced with uncharted choices. This left us with the problem of what to do since letting the tendon heal on its own is also not possible. We left the meeting with the task of not only telling our child that we cannot fix her hip, but also we cannot control her pain and she would be out of school indefinitely.

When we left the four hour meeting to pick her up, we find that she began vomiting while we were in the meeting. My husband went out of town on Tuesday morning and she went to the ER Tuesday night and stayed over until Wednesday. My mom, who was also ill had to take care of my other two kids who were also sick. While she was staying with my children in my house, she accidentally left the stove on in her house. The result was only some burnt plastic, thank God!

By Wednesday, I was a basket case. I had not slept in weeks and I was very down. I did not know how to console my daughter or anyone else in our family including me. Again, in desperation I prayed to God to lift us up knowing that I did not have the strength to do it myself.

It is wondrous how God answers desperate prayers. It is never in the way I expect. Usually it is in the small things that people say or do that confirms my faith in the Lord. The next day 3 people called out of the blue to tell me that they were praying of our family. Most of the prayers were centered around one theme: accept My help.

I am not quite sure why this is so difficult to me. God has had to yank out every last bit of pride and self reliance in order for me to see what my mind knows to be true. I know that I need the help of others, but it is so much easier for me to do it myself. What I keep missing are the arms that are out ready to catch and help. In my stubbornness, we have suffered much. God needed to completely crush my pride in every aspect of my life.

The last one was the faith of my child. I realized that one of my children believed that God was scary. She thinks that if God allowed all of this pain then He is scary. She had lost trust in Him and she did not know which way to turn. She knew that admitting this to me would hurt me and it did. I mistakenly thought that the one thing that I have done right is pointing my children to the Lord and His goodness. But it seemed that I failed at that too and I needed to rely on others to help my daughter to realize that God is Love not pain.

We decided to give this also to God and we wrote in her blessings book that we would expect someone to call, write or visit her the next day and tell her about God's great love for her. All through the day she was more and more anxious. By bed time she was very upset. She had only minutes before she needed to go to bed when the doorbell rang. It was one of our dear friends. She said that the Holy Spirit had sent her to our house to pray with us.

My daughter and I just cried as she prayed. Not only did her visit restore some of the trust in God for my daughter, but for me as well. This life her on earth is temporary. Our heaven is not here but waiting for us. To believe that this life is all we have is to despair and as my daughter says, despair shrinks your brain.