Ataxia and the Ocean

I have just returned from watching all 3 of my boys play sand soccer at the annual competition in Wildwood, NJ. We rent a house with 2 other families and a good time is had by all.

Since my ataxia has confined me to a wheelchair most of the time (still not sure if that is mental, because of so many falls) I was able to get around the beach in one of those wheelchairs with big wheels.  It was great! I was able to see most of the games and even go in the ocean. 

I must say, I really felt disabled for the first time. That is hard.  My speech is regularly slurred in the morning and I do have trouble walking the rest of the day. When I am home in my own environment I feel "safe," but this weekend I was definitely not "safe." 

The house we rented had an elevator so getting around to go outside was easy, but the rest if the time was sometimes hard.  I can only thank those who where around who made it easier for meals and looking after my boys.   I also have to thank my husband for not only taking care of other things but of taking care of me too. 

I am still not sure what God is doing, maybe I just don't see it yet,but Great is His Faithfulness.

If you are a follower, and I know that there are not many, you will notice that I changed the title of my blog to "God's Grace is bigger than Ataxia."  I am often very reluctant to share my daily struggles but have decided that this is what this blog needs to be about. In addition, I hope to be transparent with my daily struggles and how I do rely on God's grace to get me through the hour, the day, the weeks and the months.  My prayer is that you will be able to relate to these struggles, even if you don't have a type of ataxia, and that we would focus on God's grace and how tomorrow is another day to lean on and learn what God has in store for us.

For those of us here in the northeast, this weekend was beautiful! Unfortunately my husband had to work most of the day on Saturday.  I am so thankful for the community that drives my kids to baseball games and practices.  Just a picture of God's grace to our family.  When we moved to the Elverson area 11 years ago I had no symptoms and life was good for us. Only God could know that many years later, this disease would take so much from our lives.

Thanks to my son and husband, I was able to make a wonderful beef brisket for Saturday and the boys did some grilling on Sunday.  I did have a little fall on Sunday.  While attempting to salt the burgers, I moved from one counter to the next to fast and down I went.  My wheelchair was just inches away, but not close enough, silly me, I know better than to move to fast!!

As the day wore down yesterday, I asked Dave how I could pray for him this week, what did he feel he was struggling with?  His answer...my ataxia and how our home has changed.  So I will pray that the struggles for him and my boys will just marinate in grace.

Today is good so far, I even walked myself to the living room and have some clothes to fold (what else is new)  we will see how the day goes and how God's grace gets me through!

Romans 5:1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand.And we boast in the hope of the glory of God. ³ Not only so, but we also glory in our sufferings,because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Tears and Thankfulness can go together

This morning was one of those mornings where I just stayed in bed until 9:00. I figured,why get up, I will just loose my balance anyway and soon my speech will slur. I am thankful for what I have, I can hear the birds outside, my boys are off to school, we have ice hockey playoff games tonight for Austin and Hudson and yet I still have tears in my eyes.

It is now 1:00, my niece helped me get a bath, I have had lunch, there is a basket of clothes next to me to fold; the breeze if beautiful and yet I sit here crying.

I can't drive my son to baseball practice, I want to walk down the hill and get the mail, the dishwasher needs emptying, the kitchen counters need wiped down and much more. I am very thankful that someone is bringing us a meal tonight so that I don't have to cook, what a blessing!

Being thankful for what God has placed in your life, can often times come with tears. I don't question this path it just sometimes makes me cry :)

May my tears not overshadow my thankfulness!

Being Thankful

I often think that life is hard! Sometimes harder for others. Just this morning, I needed to print something off for Val to take to school. I was unable to get out of bed, my frustration was rising which resulted in my speech begining to slurr. Poor Val, he was doing his best. As I begin to get more and more angry, Val asked "Mom why are you getting so mad?" The answer, I was frustrated because I just wanted to get out of bed myself, go to the computer and print out the form for Val myself.

I am reading a book that a good friend gave me "One Thousand Gifts." The idea of the book is to live fully right where you are. First of all I am not sure that I truly live fully in this life of schedules, boys, a husband, schooling, disability and of course my favorite Laundry!

I just finished a chapter from the book on thanksgiving and was reminded of how Christ, just before the hardest time of his life on this earth, His crucifixtion, gave thanks. I can honestly say that during the hardest times in my life, my first reaction is not to give thanks. My first reaction is often frustration, disappointment, saddness, but to be thankful? This morning I showed my lack of thanksgiving and my true color of frustration as we tackled getting this form off the computer.

After reading this chapter, I am reminded that being thankful is the only reaction that I can and should truly have. For it is God who gave me these boys, this husband, this disability and even the laundry is from Him. Who am I to say to the creator that he must have made some kind of mistake and I am not very grateful? And as a mother I need and should be attempting to demonstrate thankfulness to my boys in times of difficulty.

My I find thankfulness in what God has given me, if you see me, remind me to be thankful, and in all things may He who ordained all of this be given glory and thanks!

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" I Thessalonians 5:16-18

What my God ordains is right

All I can say on this rainy day is that may I be a better listener and doer of these words:

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er He doth;
And follow where He guideth;
He is my God; though dark my road,
He holds me that I shall not fall:
Wherefore to Him I leave it all.

Whate’er my God ordains is right:
He never will deceive me;
He leads me by the proper path:
I know He will not leave me.
I take, content, what He hath sent;
His hand can turn my griefs away,
And patiently I wait His day.

Whate’er my God ordains is right:
His loving thought attends me;
No poison can be in the cup
That my Physician sends me.
My God is true; each morn anew
I’ll trust His grace unending,
My life to Him commending.

Whate’er my God ordains is right:
He is my Friend and Father;
He suffers naught to do me harm,
Though many storms may gather,
Now I may know both joy and woe,
Some day I shall see clearly
That He hath loved me dearly.

Whate’er my God ordains is right:
Though now this cup, in drinking,
May bitter seem to my faint heart,
I take it, all unshrinking.
My God is true; each morn anew
Sweet comfort yet shall fill my heart,
And pain and sorrow shall depart.

Whate’er my God ordains is right:
Here shall my stand be taken;
Though sorrow, need, or death be mine,
Yet I am not forsaken.
My Father’s care is round me there;
He holds me that I shall not fall:
And so to Him I leave it all.


Smiles
Terri

In Spite of myself

It has just been over 2 weeks since I had a fall that resulted in 6 staples to my head. My first reaction when I fell was that of frustration. "Why am I going through this? Why can't God just make me better? As I say the blood on the floor and on my hand from my head those thoughts left me and I just needed to get a phone, which I did and several of my friends came to help.

I am still wondering why God chose to have those help me, when I was so frustrated? I am so pleased that God shows his mercy on me in spite of how I react!

What is normal anyway?

I spend many of my days (especially in the morning) sitting in my red leather chair - also known as my "command center!" As I sit there, I fold clothes, read, listen to my IPhone or watch TV (my boys laugh at me because it is usually the lifetime or hallmark channels) all that being said, I often ask myself, Why can't I just be normal?

What is normal anyway? Most moms read and fold clothes, I just have to have mine brought to my "command center."

Well for those of you who have known me for a while, you know that this is not normal for me! I would rather be hanging out with friends or teenagers, having tons of people over, for me there is always a reason to have a party!

Well I must say that I am having some normal feelings. I am directing the play for the Community Homeshoolers and I am having a blast!

Last night I was having a slight episode at practice and they just laughed right along with me, and for that two and half hours, I was normal :)

I can not thank them and the steering committee enough for this normalcy that they are giving me and I only pray that I can do them justice!

Besides, what is normal for me may not be normal for you...what is normal anyway?