to answer a few "how are you?"s

okay, so i have some issues with what you're about to read (more on that in a minute), but the sentiment is valid and a good description of life these days:

When you have a child with special needs, so much of your time, emotion, and energy is spent protecting and defending that child that when death comes knocking rudely in the middle of the night and steals him away, the insult is especially cruel. The reality leaves you wailing at the moon--and rightly so.

Two years later, after my son's death, I don't wail at the moon every day. My moaning is gentler, more internalized, not always for the world to hear. I'm quieter, more accepting of my grief. I will always deeply mourn the loss of my son, and too many days, I still fall to my knees. There's comfort there.

When I do start strutting around like my life is back on track, the grief gods like to swoop down and knock me on the side of my head. "You aren't really in control of your life." they mock loudly. And they're right. When your child dies, one of the first things you learn is how little control any of us really has over the big moments in life that blindside us.

excerpted from Breakthrough Parenting for Children with Special Needs by Judy Winter

as for my issues? i suspect many of you, if i know who you are, know what's coming:

i can never fall to my knees "too many days". there's comfort there, yes, and rightly so. would that i could remember to do it more often!

wailing at the moon? not so much my style. but as an image of lonely mourning, it works. and mourning is lonely.

negative on the "grief gods". if you know me or have ever read my blog, you knew that was coming. enough said.

you'll also know, if you know me, that the period after "life" in that third paragraph is oh-so-wrong. and drives me crazy, yes. but as much as i have a reputation as a grammar nazi, i have the same as a plagiarism cop...and you'll never catch me misquoting even a grammar error! (and if you don't know me, you're no doubt now wondering...)

ahem! moving along...

mockery, no! and this is the most important bit. this is a gift. yes, the reminder that i am not in control can feel a little strong at times, and yes, i'd prefer not to be knocked about the head with it, and yes, i'd really prefer not to be blindsided by it; a gentle whisper would be nice. but darned if i'm not too deaf to even listen for the whisper! and i am grateful for the gift of not being in control. which is a pretty big step for someone who so loves--craves, even--being in control.

of necessity

once upon a time, almost fifteen years ago, a mother lost her son. unnecessarily. once upon a time, i saw that son die. once upon a time, i saw everything i knew and everyone i trusted fail to prevent an unnecessary death. and i had some questions.

...and i know that it is a moment that will never leave me...and i know that i must stop it from haunting me, come to terms with the worst nightmare i have ever faced...because i must remember that everything happens for a reason...and i must never forget...and i must try not to remember so i can sleep...He must have a reason, and i must be comforted by that...

but i haven't stopped crying and haven't stopped asking Him for the reason. i saw him again, saw his family crying and his friends crying and everyone who was there that day crying. but he looked happy. and i know he must know the reason. i hope fred knows the reason. because i know that eventually i will stop crying, all of us here will stop crying. and i hope fred knows the reason.

(i hadn't read those words in almost fifteen years until just yesterday. i had forgotten i wrote those words. i forgot the questions. did i ever learn the answers?)

*******

throughout eliza's life and now in her death, people have shared with me the stories of how she has touched their lives. i have heard from people quite literally all over the world about what they have learned from her story. while part of me treasures these stories and is grateful for the reminder of God's big purpose for her little life, part of me just wishes He had chosen someone else's daughter. is this really necessary? can't He find some other way to reach people? part of me just isn't interested in being used in this way, thank-you-very-much. part of me would prefer to decide for myself how God can use me and my family and how He can't. thank-you-very-much.

a long while ago, i stopped asking why. i stopped asking if this was necessary, if my daughter's suffering and my daughter's death and my family's loss and my family's suffering was necessary.

and i'm thankful today as i remember two mothers who lost their sons--unnecessarily?--that i don't get to decide, and that it doesn't matter if i ask.

*******

God knows better, in fact. (God uses everything for good--oh, how i've hated hearing that some days!). did that mother, the one who lost her son unnecessarily once upon a time almost fifteen years ago, hear the same thing?

i know i didn't tell her. after all, i'm not sure i even knew. but i do know now that the questions i asked then have made all the difference.

would i tell her now, if i knew where to find her, even knew her name? would it be a comfort to her now, almost fifteen years later, to know that in her son's death, God was working on saving a life?

perhaps one day, in about fifteen years, i'll know.

*******

is this necessary, then? separation? suffering? death? longing? God, is this really necessary?

once upon a time, almost two thousand years ago, a mother lost her son. necessarily. and i'm wondering what it was like for all those people who watched that mother lose her son as they realized the impact He had on their lives--realized He had saved their lives--i'm wondering what they said to that mother who lost her son. was it a comfort to her: it's all necessary!...God planned it...had to do it...the only way...for Love...was it a comfort to her a few days later? a few months later? almost fifteen years later?

or did she just wish He had picked someone else's child? she who had carried this child, her child, the Christ, for thirty-three years. did she just wish it had been someone else's son?

in memory (in photographs)

beautiful and temporal. unique, each one. handmade. carefully chosen. well-worn and loved and frayed. a delightful, fragile gift. just like each of these prayer bracelets, lovingly crafted in honor of you by your dad's sweet colleague and students, that's what you were on earth, my beautiful daughter.


washed white as snow. complete. not damaged, not frayed or worn, never to be. a pure gift. just like these bracelets, crafted by the same after your death, that's what you are now in eternity, my sweet girl.


shining. permanent. reflecting the light. perfect and impossible to ruin. a heart-warming gift. just like this bracelet, lovingly designed by your nana and papa, that's what you are now, forever, my beloved.

the best of intentions

"Remember," Eli said as the Wemmick walked out the door, "you are special because I made you. And I don't make mistakes."

eli is the woodworker, and the wemmick is punchinello, the wooden guy who always gets bad marks. he's clumsy, scratched, silly, unpopular. he's convinced he's not a good wemmick, and so is everyone else.

except eli.

you see, eli doesn't make mistakes. in you are special, by max lucado, children are supposed to learn that God made us all just as we are and loves us just that way. all we need to do is come to Him to be reminded.

He doesn't make mistakes. there's more to that for me tonight. eliza, with her broken body and broken brain, was just the way He made her. intentionally. luke, with his separation anxiety, his brilliant mind, his selfish habits, and his boundless energy, is just right. intentionally. sam and i, broken and downtrodden, we who cannot--refuse to--stop making the same mistakes over and over again, are just as He made us. intentionally.

forgiven and forgotten. and created with intention.

and the thing is, just as i would never hate what He made my children to be, i cannot hate how He made me. i don't know the plans He has for me--He promises that He plans to prosper me and not harm me--but if i despise what i am, i hate what He planned.

i am in awe of that tonight. it is not my place to question the Creator. "Shall what is formed say to him who formed it, 'He did not make me'? Can the pot say of the potter, 'He knows nothing'? [...] Yet, O Lord, you are our Father. We are the clay, you are the potter; we are all the work of your hand" (Isaiah 29:16, 64:8).

forgiven, forgotten (my sins, that is), and intended.

Punchinello didn't stop, but in his heart he thought, I think he really means it.

in other words

i don't like it much when blogger friends post lyrics or poems or other people's words; i read their blogs because i like to read their words, not someone else's.

the problem is that there are just so many other people who say it so well. so, if you're like me, then i apologize. but i'm loving these nickel creek lyrics today:

We must climb a great high mountain
To reach God's gracious kingdom
In His words you'll find the strength
If you will just believe them

Well, the way is filled with pitfalls
And sometimes we may falter
You can have His grace, my friend
On your knees down at the altar

You don't have to move that mountain
Just help me Lord to climb it
You don't have to move that stumblin' block
Just show me the way around it

God can move mountains, sure. in fact, He tells us that we can, even: "If you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done" (Matthew 21:21).

the thing is that He also made the mountains. He made that fig tree that Jesus cursed. He allows us our stumbling blocks. does He give them to us? maybe. does He take them away? sometimes. does He allow them, even though He hates them as they cause us to stumble, even though they're hard to climb, hard to get around, hard to throw down? of course. in His infinite wisdom, He does.

so if i trust in His infinite wisdom, then i will trust in His ability to move the mountains or encourage me over them or coax me around them.

on my knees down at the altar. Lord, bring me to my knees.

(if you haven't heard it, listen to the song, too: "you don't have to move that mountain." even better listening.)

having perhaps the better claim

like sludge? maybe, but i've never personally waded through sludge. molasses? not sure, exactly, though it might be too sweet, brown sugar and all.

maybe heavy, wet snow. cold. so cold. unyielding. deeper than your knees or thighs, even, so that it gets down into your big, tall, used-to-be-warm-and-fluffy boots and you have to lift your lead-heavy legs with each step like some fancy prancing horse. crusted on the ends of your sleeves, biting at your raw now-exposed wrists, mittens soaked through and no longer safely tucked in. toes aching, throbbing--not quite numb enough for relief: and then if they go numb, you'll be sure they've fallen off, lost forever. tears--of fear? for what if they have fallen off already?--warm for a moment, only freeze on your eyelashes, crusty and stiff and sharp. sharp burning-cold tears. nostrils: nose that used to be running when there remained warmth inside, now frozen from the inside out, making it impossible to warm the air, stinging and oh-don't-rub-it. impossibly cold air filtered through frozen, though no snow has been there. cheeks white-cold, burning cold, numb yet stinging. white-gray sky blends in with white-gray snow, leaving no horizon, no distinction between down here and up there.

if you're from where i'm from, you know that it's the only way home. after the joy--the sledding, the snowman-building, the snowball throwing, the angel-making, the just-a-few-more minutes one too many times--there's always the walk home. the impossible, unavoidable, how-much-longer-and-why-isn't-there-anyone-here-to-carry-me walk home.

yes, it's more like that than sludge or molasses, i think.

and if you've been where i am, you know some days are just so like that. it feels like a long walk Home.

with a few exceptions

it's coming, you know.

you probably do. you probably already ordered the flowers, mailed out the card, planned the brunch, or scheduled the massage (ooh, you shouldn't have!), depending on what you tend to do with the day, as a rule.

there's a carefully cut-out flower with a school photo in the middle coming my way this year. (i know this because i just happened to be the mom-volunteer one day when they were making them). and something from rite aid (mouth quickly covered before the details of "something you really, really won't like--snicker, chuckle" slipped out). and no doubt something thoughtful from dad--who is ever-so-much better at keeping secrets--in fact, who delights in "purloined letters" that always always manage to keep me in the dark.

just a few days away, it's coming.

eliza always gave me dairy milk (the chocolate bar, of course, though it must needs have milk to go with it). she had no idea she gave me dairy milk, no notion of smooth chocolate, no notion of gratitude or a mom, even, if you believe the doctors. she never "gave" me anything. that is, nothing from rite aid, anyhow.

except a reminder of real, true need (have you heard sam's eulogy? i can always find someone who has said it better than i can, i think). except a reminder of my dependence--utter dependence--for my every little need. except a reminder to love unconditionally, that love isn't about what you get in return for it. except a reminder of how little power, how little control we have, and how powerful and almighty God is. except a reminder of how good and kind people can be, how people can love so well, even from so far. except a reminder to be faithful in the very little things, the very little details of very little chores that can matter so much to a very little person. except a reminder that we--each and every broken one--are created in God's image, and that is by His definition Good. except a reminder that He died for me, just for me regardless of anyone else, and that none of it is about me or mine at all. except a sweet little yawn, accompanied by a sweet little sigh; a sneeze so like mine that masquerades as a cough; clear, clear blue eyes with fantastic eyelashes; out-of-control (so like mine) curls, so very deliciously (unlike mine) strawberry blonde.

except for that.