I married the best man I have ever known. At the time we were married, he had a rare genetic disease with a poor prognosis that did not quite fit. Before we were ever serious, I read the worst and thought I was prepared for it. I prayed. I had peace that everything would be ok. Maybe not easy, but- ” apart from the will of our Father in heaven not a hair can fall from our head” ok.
Soon after we were married, we visited my former church to hear a missionary speak. As he prayed for Shane he quoted a portion of scripture that I had always taken for a promise.
It is Isaiah 54. This passage promises children to the barren woman, instructs her to enlarge her house, tells God’s people they will not be ashamed, assures that the storm is over, says that the afflicted one will have a sure foundation, that his children will be taught of the Lord, and the NO weapon formed against you shall prosper.
Shane’s attitude all along has been one of steady faithfulness. God can heal me. God can take me home and give me a new body. His grace is sufficient for me to live with this. In the time we have been married Shane has gone from working part time to working full time. Most days he is very tired, sometimes he falls. He keeps getting up.
In the time since we have been married, the medical landscape has changed. In finding the genetic code for FA, there was a realization of a late onset, less severe version of this disorder that more closely resembles what my husband has experienced.
Five years ago, the best thoughts for treatment were antioxidants and a trial in a foreign country where people were having stem cells injected into their heads. In the last few years, there has been more funding for orphan drugs- drugs for rare disorders that won’t make a lot of money for pharmaceutical companies to pursue research. Right now there are several very promising drugs in trials, backed by solid and current research. One that will trick the body into making more frataxin, one that will try to overcome the genetic mutation, as well as iron chelation therapy. It is possible that in the next ten years FA could be as treatable as diabetes.
I don’t know what the future holds. I do know who holds the future, and He has ways of doing things that are beyond anything we can ask or imagine.
A Perpetual Covenant of Peace
54 “Sing, O barren,
You who have not borne!
Break forth into singing, and cry aloud,
You who have not labored with child!
For more are the children of the desolate
Than the children of the married woman,” says the Lord.
2 “Enlarge the place of your tent,
And let them stretch out the curtains of your dwellings;
Do not spare;
Lengthen your cords,
And strengthen your stakes.
3 For you shall expand to the right and to the left,
And your descendants will inherit the nations,
And make the desolate cities inhabited.
4 “Do not fear, for you will not be ashamed;
Neither be disgraced, for you will not be put to shame;
For you will forget the shame of your youth,
And will not remember the reproach of your widowhood anymore.
5 For your Maker is your husband,
The Lord of hosts is His name;
And your Redeemer is the Holy One of Israel;
He is called the God of the whole earth.
6 For the Lord has called you
Like a woman forsaken and grieved in spirit,
Like a youthful wife when you were refused,”
Says your God.
7 “For a mere moment I have forsaken you,
But with great mercies I will gather you.
8 With a little wrath I hid My face from you for a moment;
But with everlasting kindness I will have mercy on you,”
Says the Lord, your Redeemer.
9 “For this is like the waters of Noah to Me;
For as I have sworn
That the waters of Noah would no longer cover the earth,
So have I sworn
That I would not be angry with you, nor rebuke you.
10 For the mountains shall depart
And the hills be removed,
But My kindness shall not depart from you,
Nor shall My covenant of peace be removed,”
Says the Lord, who has mercy on you.
11 “O you afflicted one,
Tossed with tempest, and not comforted,
Behold, I will lay your stones with colorful gems,
And lay your foundations with sapphires.
12 I will make your pinnacles of rubies,
Your gates of crystal,
And all your walls of precious stones.
13 All your children shall be taught by the Lord,
And great shall be the peace of your children.
14 In righteousness you shall be established;
You shall be far from oppression, for you shall not fear;
And from terror, for it shall not come near you.
15 Indeed they shall surely assemble, but not because of Me.
Whoever assembles against you shall fall for your sake.
16 “Behold, I have created the blacksmith
Who blows the coals in the fire,
Who brings forth an instrument for his work;
And I have created the spoiler to destroy.
17 No weapon formed against you shall prosper,
And every tongue which rises against you in judgment
You shall condemn.
This is the heritage of the servants of the Lord,
And their righteousness is from Me,”
Says the Lord.