Friday, June 25, 2010

"Life Isn't About How to Survive the Storm But How You Dance in the Rain"

I stole that quote from a forwarded email I received today.  It reminded me that the physical is temporary and God made us water proof and 100% washable.

I have been putting off dealing with the elephant in the room.  Elizabeth continues to hurt her hip and falls frequently in public.  Right now we are scrambling trying to find a way to get a vehicle that can accommodate all of us and the motorized wheelchairs for the kids.  Because our medical bills have been so high during the last few years coupled with my need to quit working my three jobs, our finances are a mess.  The type of van we will need is very expensive and most banks do not want to loan money to people that need this type of van because the cost outweighs their assessment of the worth of these vehicles.  Our credit does not help matters.  Neither does the fact that we not only need a minivan that has a ramp, but a full sized van with a raised roof, a lift and room for at least two wheelchairs.

Because we will keep this van for a very long time, the man helping us find an appropriate van keeps mentioning that I need to plan for potential physical needs that I might have now and in the future.  Right now I am scheduled to see another orthopedic surgeon because I have problems with nerves in my forearms.  From what I understand, this is not carpel tunnel.  It is a condition that is prevalent in people with EDS.  My arms have been swollen for at least 7 months with some pretty intense pain and frequent numbness.  I went to PT which did not help much.  I also use splints that do help a little, but are not practical for everyday use.  I also have to take into consideration my hips which have been a problem since my birth.

It is difficult enough knowing and accepting that your children need extra assistance with wheelchairs and the like.  It is a different story when you have to accept that you own future might be very different as well.  Both of these issues were banging around in my head when I read the quote in the title of this blog.

I have a choice.  I can despair and feel defeated about the reality of needing all of these things for my family and not knowing how we will be able to acquire them, or I can dance knowing that God's grace is sufficient.  It is like standing on a razor blade at times.  I do not dance all the time, but if I can remember God's promises to us and to me, it is possible to dance and wonder how all of this will be accomplished.  Faith to me is preparing for the impossible blessing before it comes.  So right now I am going to thank God for His blessings that he has rained down on our family and the future blessings to come.  If these things that we think we need never come, then we will never need them.  Please help me pray that we can stay in that frame of mind.

Tuesday, June 22, 2010

First Date

I am going to start this off by saying this is terrible.  I should not joke about this subject, but I just can't help it.

That being said, here is the story:

As most of you know, my mom became a widow just over 2 years ago.  My dad passed away after suffering a long illness.  She was an Air Force wife for over 30 years and took care of him during his retirement.  Mom was previously married to my real father, but there was little dating in between marriages.

So when she decided to start looking for someone to go to dinner with her I was very proud of her.  She had not had a real date in 45 years!  She joined  E-Harmony and started chatting with some potential "friends."  She found someone on line that was in the Air Force and could relate to her experiences.  They decided to start talking on the phone and eventually met for a date.

The date was wonderful until... he said that he was going to hear in a few days if he had a malignant brain tumor.  Mom called him a couple of days later and left a message to see how he was doing.  He called back and said that he did have brain cancer and he could not see her anymore.  He said that a "friend" had come back into his life since he found out that he had brain cancer.  He said that since they were "friends" again it would not be fair to her to continue to be "friends" with Mom.

Let's think about this, the first time she does go out on a date in 45 years and he has cancer and dumps her?!  This could only happen in our family.  Please do not get me wrong, brain cancer is in no way funny, but again, what are the chances?

A week later she found out that she needs to have another back surgery.  Apparently she has some screws that are loose.  Again, I could not make this up!

Monday, June 14, 2010

By CJ Age 10

Lord, please let me do my best and help me worship you and give you ALL of the glory.  Help me when times are rough, help me to control myself and be joyful.  Lord, help me pray EVERY day and to read the Bible.  Help me take care of myself such as exercising, eating good foods and having fun.  In Jesus' Name...


Friday, June 11, 2010

God Is... By CJ Schulze

God is the alpha the omega and judge of all. He loves you so much that he brings you up in heaven to have life again. But he gives you better life. All in heaven is good, and you have NO pain. God is one of three and a part of one. God does care or else he would let you rot and die. But he does care. When you repent your sins goes to the foot of the cross. Pray, pray and pray. Do not stop. Listen to the Ten Commandments, and read a Bible. Spread the word of God. God is the creator, the number 1! Have faith and love God with all your heart. Step forth to the good. Never give up hope, give it everything you’ve got.

Prayer *God help me spread your word all around me.

In Jesus’ name, Amen.

Monday, June 7, 2010


We just got back from the ER.  Elizabeth fell at church again.  Apparently she was going to get a drink from the fountain when her leg gave out and she fell.  Some of the men at church used an ironing board to get her to the van.  I took her down and visually her hip looked out of joint and all the trauma doctors agreed.

Six hours later, sedation and more x-rays and they sent her home in pain, but able to sit up.  The pain she went through with the doctors trying to get her hip "reduced" was a horrible sight.  I can't really explain the feeling other than standing by while your daughter is screaming in pain, but you have to keep the terror out of your own eyes.  You have to keep calm so she will be more calm.  All the while knowing that this was not the first time, not the last time...

Part of me wants to just make her stay in the chair so that she will not get hurt, but that is a horrible resolution.  But, so is the resolution that she can fall at any time or any place and what will she hurt the next time?  This is a gut wrenching and a change that I must grieve and help her grieve if that is what is to be the answer.

God knew before the beginning of time that this would come to our family.  I do not think this is a punishment or some kind of random evil act.  I think that God is ready to give us everything that we need to get through whatever we need.  It is not our life we live but the life He gave us.  If I think of it that way, it reminds me that He will be faithful because He knows what I need before I need it.  Sometimes we have to be willing to swallow a bitter pill to reach the full measure of our blessings.  Resolving Elizabeth's hip issue is one of those "pills."

We thought she would have a different future.  A future of swim team meets, normal bus rides, heart aches as she grew older and all the "normal" raising kid stuff.  Her future is very bright, do not get me wrong, but it is different.  I did not hold her in my arms and think about ordering a wheelchair for her.  I did not see her first smile and think I would see her face in such anguish that it would cut me in two.  I did not watch her first steps and think that when she would be 12 and still worry about her falling.   I am glad that I did not know back then.  I am not regretful nor am I despairing her future.  It is just different, changed.

The following is to a great devotional about change:

Friday, June 4, 2010

"If I Only Had a Brain..."

Contrary to popular belief, I do have one.  About a year and a half ago I was having some trouble with things like breathing and staying conscious, so I had an MRI.  The doctors told me, at the time, that I had an "incidental finding."  Translation was offered by one incredibly pompous neurosurgeon resident, that if he took several people, at random, they would find this same finding.  I did need to follow up, however.  He did not think that these findings had anything to do with the problems.  I had my C1-C2 fusion with plates to keep my brain in my head and things got better.
Fast forward to a few months ago and a couple of doctors later, I find out that I have two spots of capillary bursting in my brain deep in the brain stem.  To have two areas is not "incidental."  I am not sure I understand all of the ramifications of this.  One is over the breathing center in my brain.

Interestingly enough, when I went to this particular neurologist, I was actually trying to play down the fact that I had EDS.  I believed that this was no big deal.  When the doctor came in he read through my paperwork and was surprised to see that I had EDS.

"You will never guess where I was yesterday." was one of the first things he said to me.  He went on to explain that he had just given a talk about genetic reasons for strokes and one of those reasons was EDS.  He was really excited, I was nauseous.

There is a really sickening look that doctors get when they find something "interesting."  I realize that a good doctor is a good scientist and a good scientist gets a charge out of an anomaly, but I could go for a plain, boring day.
He went on to explain why my case was so interesting.  I really did not understand what he was saying.  He asked if I had any questions and if I was okay with this news.  He said that he wanted my blood pressure down to prevent further bleeding in the brain.  I just looked at him and asked if I had to worry about it in the next 5 minutes.  When he said no, I was finished.

Please pray that I can keep my brain from exploding from the inside out and that my girls do not suffer with the same symptoms.