Here lately, it seems that my son’s body is becoming more twisted.  More contorted.  I cringe every morning when I pull the covers back to make him begin another day, and force my eyes look at his locked legs, frozen in place, unable to straighten completely.  I attempt a quick few minutes-worth stretches on both of these failing limbs and ankles, willing them to continue to bend, flex, to stay passively moving for Pete’s sake! They usually respond to my moving them with a spasm, letting me know this exercise and coerced movement is not welcome. Even though they haven’t supported his weight for an entire day since he was 8 years old, my brain still sings to me that familiar little haunting truth: “MOVE IT OR LOSE IT.”  Although it is my knees locked against his, supporting his thin frame while he hugs my neck during the regular heaving over to his chair – I know how very important it is that he be able to get somewhat upright; for this is still the best way I can pull up or down his jeans. It is also a precious 5-10 seconds that his backside gets some relief from the constant sitting. These limbs have to stay thawed and not frozen.  While I catch glimpses of him grimacing, I too often forget what pain and stiffness he must face every single day, with every single transfer. I admit it. It’s usually me that I’m feeling sorry for in the moment, not my son. Wondering how much longer my health, my back. my legs, my arms, and my heart…..will stay strong enough to carry this load?

It’s now commonplace to get up at least two times every night to turn him (despite him having a hospital bed with rails, in the hopes he would still be able to do this himself.) While I want to complain in the wee hours of the morning when I or my husband is dutifully summoned out of sleep to walk to the other side of the house to his bedroom, really I want to cry when I think about the changes that FA has ravaged on Sam’s body.  I hate this disease.  It has reduced and robbed him of so much – and the rest of us in this home, to a lesser degree.

But tonight – I see the side of my son that continues to amaze and perplex me.  We’re discussing at dinner why he slept so poorly the night before.  Midnight, 1:30, 4:30 we heard him hollering for us……..through thick, slow, lumbering speech this evening, he tells his dad and I at the dinner table that it’s his knees.  His knees were waking him up, aching, hurting, unable to straighten them. As we’re throwing out ideas for some kind of new remedy or trick to help relieve him at night, improve his rest, he just shrugs his shoulders, looks at me, rolls his eyes, cocks his curly black haired head to the side, grins that famous grin, and easily says, “That’s just my body.”  And there is the mystery.  Rarely, rarely does he ever complain. If I wouldn’t have brought the subject up, he’d never have freely told me how hard some nights can really be for him. How many adults I’ve known throughout the years who seem to relish getting the opportunity to explain all their aches, pains, woes, and illnesses…….and I’d better lump myself into that group, too. I’m guilty.  We all are.  But this child of mine unknowingly pulls me out of there quickly and won’t allow me to spend much time feeling sorry for myself.  Likely, for the majority of us, our worst day would be like a dream come true for him.

Overall, I look at the big picture of our lives, and I see nothing, nothing, nothing, but God’s grace and smile upon us.  I hope it stays this way.  I don’t think we are some cosmic oddity, living with struggle and heartaches, and grief regularly.  This is not new to the human existence, and it’s mind boggling what people endure today all across this globe. But I still ask heaven sometimes, “Why us?” “Why do you continue to provide and carry us?”. I have no real explanations.

I’d be lost if not for my faith. I can’t explain it to hardened critics. I can’t explain it educated opponents of Christ and faith.  I can’t explain it to anyone who doesn’t know what it’s like to be sheltered in the shadow of His wings. It’s peace in the midst of the storm, it’s provision in the middle of a drought……..it’s just Him, and Him keeping the promises set forth in scripture for those surrendered to His love and care. And this is the perspective from which I can best see the blessings, the grace, the comforting nature of the Lord, in the midst of struggle and deep pain.

And maybe that’s the whole purpose of the birth of this blog.  I wonder if it’s selfish of me to pour out my woes, sorrows, complaining, and wonderings? I really don’t know – what I do know is this, however:  Writing is a catharsis for me and it seems that I forget more and more each valley that God brings me and my family through if I don’t take time to record it. It feels as though we are continually staring down some sort of unchartered path, and I tend to forget too easily how many He’s brought us down thus far. I am reminded as I type that it’s good to record, it’s good to remember. It’s (this blog) not always going to be about Sam – but I will say straight up that it’s a daily fight to keep Friedreich’s Ataxia out of some part of our lives.  Its fingers have touched every routine, of every hour, of every day for us all.  It’s not necessarily an audience I’m searching for – it’s truly more the process of just chronicling the journey, the emotions, the grief, the joy, the blessings – the incredible task of just abiding in The Vine as we live our lives, raise our children, and hope that we are bearing some lasting fruit.

“I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.”  John 15:5

Thanks for reading – Annie