Some rainy days, but the sun still shines

Well I have not written for a while because I have had some really bad days with episodes lasting for hours. Last Thursday it took two people to get me out of bed dressed and they even washed my hair!

Well I don't want to spend this time complaining I want to to tell you a story.

Last week, my boys were involved in a Veterans dinner for their homeschooling co-op. They proudly nominated me to make a lasagna. I tell you this because even though my boys see me unable to walk and many time unable to talk, they still think of me as a normal mom who will make a lasagna for their event! That made me feel so good, almost normal :)

Again this past Saturday, in the rain and the mud, Val wanted me to spend the day watching his soccer tournament (which his team won! and we broke my wheelchair in all that mud!) It is things like this that make me proud to be a mom and these are the things that I need to remember during an episode. My boys love me, my husband loves me and even Carrie my niece signed me up to make a cake for parent's weekend at Grove City this weekend! This reminds me that they still see me as mom, wife and aunt, much like God does not see our sin buy only sees us through Christ shed blood, because we know that without the shedding of blood, there is no remission for sin.

I tend to see myself more disabled than those around me and I definitely see myself as a sinner saved by grace.

You see, there is always grace to found in Christ, even those who often times feel sorry for themselves.

Let us think of these wonderful words written by John Newton

Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.

T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.

Through many dangers, toils and snares
I have already come;
'Tis Grace that brought me safe thus far
and Grace will lead me home.

The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures.

Yea, when this flesh and heart shall fail,
And mortal life shall cease,
I shall possess within the veil,
A life of joy and peace.

When we've been here ten thousand years
Bright shining as the sun.
We've no less days to sing God's praise
Than when we've first begun.

Grace is Amazing!

It's back to square one

Well I got a call from my doctor yesterday and it seems that several years ago another doctor had tested me for SCA6 along with Episodic Ataxia and the genetic test came out negative. So as far as figuring what gene is causing this disease, we are back to square one.

Doctors agree that I have some form of Ataxia, but they have not identified a gene that is causing my form of Ataxia. After almost 8 years of this and my episodes getting worse, I am a little frustrated. However, my neurologist reminded me that there is still so little that we know about this disease, so just hang in there.

I am not one to tell God that He is wrong, but I must say that an answer and prognosis would be great. They want to have my father and sister tested to see if they have any discrepancies in their genes.

Yesterday's sunny day is really making up for the rain today! But I will look for God's grace as my day continues :)

Some encouraging words from one of my favorite Casting Crowns songs:

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

Life is a storm, much like the rain today, let me listen for His wisper in the rain!

In sickness and in health

I was sitting at the salon getting my hair cut yesterday and as my husband Dave slipped outside, my hair dresser said "you hit the jackpot with that man!" You see she knew Dave when he was younger and saw how much "fun" that Dave had with her brothers. She said that she would never have guessed that Dave would be such a great husband and father.

When we stand up at the alter on our wedding day and say our vows, we are so in love as we say those words "for richer or poorer, for better or worse, in sickness and in health, till death due us part."

For most of us the better or worse is a fight over who should take out the trash or who messed up the sink with the toothpaste. For some the fighting is much worse and those vows are broken in divorce. And some live truly until death parts them.

For me it is the sickness and health that has changed our lives. It is almost as if Dave married another person and now 22 years later he is married to me. I can't tell you honestly that this has been easy. Dave and I both have our moments of frustrations but true to our vows this is a sickness and in health moment.

We do laugh a lot, like when he has to roll me in our bed to get me to the other side :) If I don't make it to the bathroom in time...well you can use your imagination on that one! We laugh together as the boys make fun of me when I can't speak clearly. This is the Grace that we lean on, God gives us laughter!

So back to my hair dressers comment. Yes, I did hit the jackpot, but did not know it until he began to love me more as he takes care of me. For it is God's grace that brought us together and it is grace that carries us through the good days and the bad. We are so blessed to believe in a God that does not make mistakes, He knew about my disease and he gave me Dave to take care of me.

Through many dangers, toils and snares Ihave already come
'Tis Grace that brought me safe thus farand Grace will lead me home.

The Lord has promised good to me.His word my hope secures.
He will my shield and portion be,As long as life endures.

Yea, when this flesh and heart shall fail,And mortal life shall cease,
I shall possess within the veil,A life of joy and peace

Some cherished verses of Amazing Grace

There is always joy to be found, Grace leads the way

We are not as strong as we think we are

As the rain came down and we were headed to see my neurologist at the University of Penn, I was very encouraged and excited to see what the next steps would be on my journey with this funny disease.

I had taken a nap in the car and felt very good as we got to the hospital, the detour of the South Street Bridge was finally done and Dave was ecstatic that he could drive to the garage unobstructed (anything that involves getting Dave there quicker is always a bonus!) The walk from the parking garage to my doctor's office was long and I was really glad that I found a bathroom and had my wheelchair.

I love my neurologist and was so happy to see him. As I began to tell him about how my symptoms had progressed, I began to cry...he asked, are you sad?...I said no I really love my life, it was then that he noted that my crying was neurological and an additional symptom to add to my others. We then talked about how my symptoms have increased and are more frequent. I now get hours of being normal instead on days. As we continued to talk, I began getting episodic, my speech began to slur and I was unable to walk. This may seem to most as a bummer, but my doctor and his intern were so excited. To see a patient in full episode and see it come on is great for diagnosis.

As we talked about my diagnosis, it was determined that I do not have Episodic Ataxia but another form of ataxia that progresses at a different rate called SCA6. As my doctor put it, you won't die from this but you will die with it. We talked about my quality of life as my symptoms continue and how we can manage it. There are still only 2 medications that are approved for ataxia, I have used both separately and am now going to try a combination of the two.

For those of you who know me, I always held out hope that I would improve even in some little way. Well today, that was made very evident that this is not going to happen.

I have always said "who am I to tell God that He is wrong in allowing me to have this rare disease." Because if I really believe that God is sovereign then I can't talk out of both sides of my mouth and say that God should not have given me this rare disease.

Well as I left the hospital, I must admit that I was struggling with the fact that God was not going to make me better and not only was my thought process going to have to change but the way I live had to change as well. Wheelchair ramps, bathroom issues and other things that will help me and my family struggle much less. I am not sure when these changes will happen, but for the first time I am admitting that they must!

I was listening to one of my favorite artist, Rich Mullins, and was reminded by this song as I am not as strong as I think I am:

"Our hells and our heavens are just inches apart, we must be awfully small and not as strong as we think we are."

These were words that I feel every day, I often fell the inches between my heaven and my hell and it is then that I know that I am not as strong as I think I am.

But I have also found that when I am not strong, God brings me through the next episode and the day goes on!

I am so blessed to have 3 boys that love sports and that God has given them talent to play. Today it is Austin's Middle School Varsity game and he might even get to pitch! These are the things that keep me getting out of bed each day even though that it won't be long until I am back down again. As I always say, there is joy in everything.

Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith develops perseverance. 4 Perseverance must finish its work so that you may be mature and complete, not lacking anything

James 1:2-4

Why this title?

Murphy's law : if anything can go wrong, it will at the worst possible moment

Since my maiden name is Murphy I have often found this law to be true, that is when I am not looking for God's grace in these moments.

Like many of us, life is hard. We have experienced the death of a loved one, or we are struggling with cancer or one of the many diseases that God has allowed to infiltrate His beautiful creation.

I have a rare incurable disease that leaves me unable to walk, talk and control my motor functions at times. I have what is called Episodic Ataxia type 2. But for me, the grace is found in that my episodes are just that, epidosic, and I do have times of what my friend called the other day "the old Terri."

I was 38 when my symptoms first began. I was very active and loved to be outside with my 3 boys. I loved entertaining and being a involved with any party that was going on. I water skied, played golf loved camping and was always busy.

Now I find myself sitting more than standing so I would like to use this blog to talk about some of my daily struggles and how God uses them in my life and I pray that maybe God can use them in some way to touch your life.

As I sit here this morning unable to walk around the house and do the things that are driving me crazy, like laundry and that messy table I am reminded of the verse that I memorized 6 years ago when my symptoms first began:


2 Corinthians 4:16-18
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 an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

For as much as I did not understrand what was happening to me, I was trying to keep an eternal perspective in everthing and searching out God's grace. As you read this blog you will find that I have many good days and many bad ones. I even have good hours and bad hours, I cry a lot, I get frustrated but I am determined to find the grace in all of this and somehow give God the glory.

For now I smile when I think of how my husband and friends pushed me around in my wheelchair on the ice last night and how I am excited for my boys first Twin Valley Middle School baseball game this afternooon. There is always joy to be found!

Tomorrow, I see my neurologist at the University of Penn and we will look at where I have been and how much this disease is progressing. I pray that there is something we can do that will make my life and my families' life easier. If not, I pray that
God gives me the grace to keep smiing through my tears