As we start this new year, I find myself looking back at the last four years since we got Littlest’s diagnosis. I am amazed at how much our family has grown and changed since then. All of us have been taking more joy in the little things, not worrying so much about the house, and enjoying the sun and the laughter and the togetherness. I find us all living more in the moment and not worrying so much about tomorrow.  I find myself becoming more of a homebody–something that I never thought would happen to my super-extroverted self. Celebrating our ten-year anniversary, Joel and I agree that the last four years of our marriage are the years we have grown the most.
Something that Littlest’s most recent hospital stay impressed upon me was that I personally have grown complacent yet again in my life. We had a good year in 2014;  Littlest didn’t have any major surgeries or even a hospital stay until the month long PICU stay in Nov/Dec. Oldest and Quietest enjoyed a typical summer filled with swimming, zoo visits, fireworks, and barbecues. Life was good. We seemed to have moved through the valley that was the first three years of Littlest’s life – a time that was filled with many scary moments and lots of tears. We fully expected to have him continue in that pattern. We looked forward to being able to plan a little more in the future than we had before. This last hospital stay took what I had penciled in and wiped it off the board and replaced it with a giant question mark.
As I spent December mulling over what I wanted to see change in my life and heart for 2015, God put the following things on my heart. I would find myself writing some of these phrases over and over on various notepads, saying them in my head,and having them pop into my mind when I was disciplining my children or cleaning up a mess. They came to mind as I wept at night watching Littlest fight the ventilator.

My prayer for God to work in my heart in 2015 is that I would find myself learning to live with open hands, accepting and praising God’s sovereignty, being more kindhearted, always seeking truth, restoring relationships, strengthening our marriage, praising our kids, being always transparent, fellowshipping richly, and growing deeper in grace.

A few of these things are easy for me to work on. They are a natural function of my personality type and character. A few are, super difficult for me to even write without tearing up.
I know that “living with open hands” is something that many will see as being able to receive things from God or others. For me, this means being able to hold my youngest child with open hands and accepting as good whatever God ordains as His plan for Littlest. I honestly don’t see it as me receiving anything but loss.
That my son, who in all honesty looks so healthy and amazingly well from the outside, is a terminal case–that the experts don’t expect him to ever be “better than he is right now”–I find so hard to accept. Right now he *looks* good. He is smiley,freely sharing his amazing capacity to love. He laughs. He flirts. He jokes. He does the cutest little things. He has the most adorable voice. But under it all, he’s fighting more than most of us can imagine.
Not everyone sees the spasms that cause so much pain that he starts to retch. Not everyone smells the ammonia scent that he wakes drenched in every morning. Not everyone sees the fear in his eyes when he looks at me after I’ve done everything I can do to help and he’s still suffering. God has given Littlest such grace.
Not everyone sees my tears, or knows my desire to just go punch something because the agony of acceptance is too great. Not everyone sees that I am going through life numb right now. God does. He has given me amazing peace even while I struggle to accept the unknown length of time in which I will be able to hold Littlest on this earth. For all I know,  could be a very short period of time. Littlest could quickly digress after the next growth spurt. Or he could surprise everyone except for God and make it to his eighteenth birthday.
We don’t know.
However, we do know that there is nothing more the medical experts can do to fix anything. Everything is all about mitigating the symptoms now and addressing the things causing pain…but each of those interventions has a limit on how many you can do or how often they can happen. Each of those things to help him with pain poses a risk to another part of his body. When do I give up fighting for him? Never! But at the same time, I also must remember that even as I fight for him, I am not fighting God. Or rather, I must make sure I’m not fighting God. I have to accept that God has this plan for Littlest. I don’t know exactly what it is; I just know that it is GOOD, and it is SOVEREIGN. God’s plan is so much greater than mine. It is something He has purposed for His glory. My open hands can not hold my son to me when God wants to bring him to Himself. Open hands mean that I live holding Littlest on loan from God.

Samuel Rutherford wrote, Let your children be as so many flowers, borrowed from God. If the flowers die or wither, thank God for a summer loan of them.
and again,
Ye have lost a child — nay, she is not lost to you, who is found to Christ; she is not sent away, but only sent before; like unto a star, which going out of our sight, doth not die and vanish, but shineth in another hemisphere.

God’s plan is so much greater than mine. May He give me grace to accept it. This is living open-handed.

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