The outpouring of text messages, emails, encouragement, support, offers of help, hugs, and tears have been overwhelming and humbling. I know many of you are grieving with us; you're still processing it, too. In some ways more than us because God has been telling us this in our hearts for quite a while. Throughout the beginning of this year, when I said that I wanted to share my heart with you, this was what I wanted to share. I just didn't know how to share it at the time and be understood. In November of 2014, I began to realize that Philip was not getting better. The Lord began to teach me about His will, His comfort and putting my son in His hands. He began to show me how in heaven he would be perfect and whole. As I watched him slowly decline over the months, I began to understand how this would be so much better for him when it was God's time. I didn't have a name like LINCL to put on his condition but I knew.
I will admit the hardest part of last week was the thought that Joyanna might have it, too. Like I said, God had shown me this about Philip even though it still isn't easy. But God helped me with the fear for Joy on Thursday. Throughout Thursday, I was nauseous all day with turmoil in my spirit. I even told my family and my husband that I could sense God's grace but I couldn't feel His peace. Then, early Thursday evening, the Lord said to me, 'Don't borrow Joyanna's diagnosis when you don't know. Treat her the same today as you have always treated her.' From that point on, I felt God's peace. I pray daily, even multiple times a day, that God would spare my daughter from this disease, but I can't bring on myself the burden of things that aren't mine yet. In fact, on Saturday, I started consciously sorting my thoughts. If a thought came up (for example, Joyanna might have it.), then I would say, That's God's. As opposed to, The dishes need to be done. That's mine.
Here's what has helped the most. Because this is a genetic disease and we had no idea we were even carriers, I have perfect peace (though I don't understand), that this is God's plan. He knew this about Philip from the beginning and although we don't see why, he didn't want us to know about it until now. I finally know it wasn't anything I did wrong, anything I shouldn't have eaten while I was pregnant. Moms that are reading this might understand that. While I didn't live under the guilt of that, it was always in the background. It wasn't anything I had done. It was what God wanted. In that case, this is what God has for me right now in this time of my life. He will help me to do what I need to do. I'm not sure how but...that's God's.
Here's the other thing. I am thinking within the day I'm in. Of course, I know it's wise to do some planning for life and schedules, but right now, God is helping us to live in this day. This realization makes Matthew 6:34 jump off the page. "Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof." I can't dwell upon a diagnosis for Joyanna or what it will be like to walk this road with Philip. I have to claim God's grace for this day and live for the things that are in it. Today is the only day given to us.
Today, I will enjoy my son's giddy fits of spontaneous laughter and his smiles. And believe it or not, I enjoy them without crying. I can laugh with him. You may not understand how that is possible but God's grace is for this for me right now. You'll probably never fully understand it because God's grace is for you for something totally different. God is that good; He tailors his grace, specially fit for each person, wherever they are.
I have cried many tears, some while writing this post, and will cry more, but deep inside there is peace and grace and hope and really deep there is even joy!
Please keep praying for us. We can feel that you are.
I'll leave you with this song that has ministered to my spirit over the last few days.
IN GOD'S HANDS
The storms may rage, the winds may blow
Cares of Life come against my soul
In troubled times I know just where to stand
No safer place to be than in God's hands
In God's hands I'm in good hands
My soul is safe and secure
In God's hands, sweet assurance
It's good to know I'm in good hands
Sometimes it seems a trial lasts too long
It scarcely past, and I must face another one
But when I've done the very best I can
It's time to leave it in God's hands
In God's hands, I'm in good hands
My soul is safe and secure
In God's hands, sweet assurance
It's good to know I'm in good hands
Weary and feeble I turn
to the solid Rock strong and firm
In God's hands I'm in good hands
My soul is safe and secure
In God's hands, sweet assurance
It's good to know I'm in good hands