My God, my
God, why have you forsaken me?
Why
are you so far from saving me,
so
far from my cries of anguish?
My God, I
cry out by day, but you do not answer,
by
night, but I find no rest.
-Psalm 22:1-2
I am a special
needs mom. I am a normal mom. I am neither.
I am both.
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| From left to right: Daniel (almost 6), Andrew (3), Michael (1), and John (8) |
Thursday evening
was one of those times. Caught in the
middle of my two worlds. This isn’t an
exception; I feel this way most of the time.
However, I don’t always share about it, because it’s just our life, our
“normal.” Because I don’t want to sound
like a broken record to close friends.
And because I don’t want to complain or drag people down. Sometimes, it’s even because I don’t want to sound
like a brag-a-saurus discussing all I managed to accomplish in One. Single.
Day.
It’s what we do,
how we live, how we get by, how we try so hard to thrive rather than merely
survive (hmmm… did you catch that?).
Everyone has his
routines, her norms, individual triumphs and sorrows. The times you think, “Look at me! I’ve got this under control. I am equipped for my life, and, quite frankly,
I’m rocking this!” Or, our favorite thing Meade and I say to each other and
then laugh because we say it so often is, “It’s really coming together!”
But then there are
the other moments, which if you’re anything like me, can come mere minutes
after the previous thoughts and remarks: I cannot deal with my life. I am barely
getting by, drained from the mere sentiment of “doing the best we can.” I know the teachers in carpool must think I’m
the world’s biggest mess, basically in my PJs with no makeup at morning drop
off (correction: there is makeup sometimes, but it’s yesterday’s mascara
remnants), same status at preschool pick up around lunch time, and then yes, again, at afternoon pick up. Outdated
(by over two decades!) scrunchy still in my hair but hiding behind a big smile
and sunglasses by this point.
It is rare to find
someone who "gets it"— speaking the language we speak and occupying a
similar life space. And when I do find
one of these rare friends, it is a true gift and an instant connection. I was returning an email to one such friend
(7 months later, because you know how you wait for that miraculous chunk of
time that never comes until you just sit down and do it), and as I relayed my experience from Thursday evening, I thought I would share it here and, in that, share more of myself
with you. Because many of you have asked
for more; you tell me that you resonate with the real stuff, the nitty
gritty. That you want to be let in, and
that we are more alike than not alike. This post (and hopefully this blog in general) is my attempt to create space in our conversations, and more importantly in our faith experiences, to be real.
Thursday night, our
sweet John was in full-on meltdown mode.
Screaming tears, pouted lip, wailing— my 8 year old broken down, more
than he already is. My heart broken
down, more than it already is. Shattered
really. Not because he is so sad, but
because I do not know why. And I am his mom, and I can’t figure it
out. I cannot fix it. I can’t even comfort him in these moments. What kind of mom does that make me? And our helper is witnessing the whole thing,
adding insult to injury as my insecurity creeps in. What does she think of me? The old
tricks don’t always work… singing to him, playing one of his favorite songs on
my phone, giving him a bath, providing a favorite toy, removing him from the
chaos and noise that are my other three boys, changing a wet diaper, trying to
get him to take some of his bottle, or experiencing the fresh air outside.
I want to
scream. I don’t know what is wrong, what my son wants, or what he needs!! I can’t fix it. I can’t
fix him. I know in God’s economy
John doesn’t need fixing, but it can certainly feel that way. Much of the time, I
want to fix him. I want to make his life easier. I want to make my life easier, too. Is this
selfish? Am I missing the big picture? Maybe.
I sure beat myself up about having these thoughts. But there is no hiding that life can be difficult for him and
for our family.
Is it too much to want
to communicate with my son?
Yes, yes, I know… he communicates. With his smile, with his sweet high fives,
with his laughter, with his squeals of delight, with his “happy dance” he does
on the floor while rocking back and forth on his back, and, yes, even with his
communication device at times (which can be the devil, but that’s another
story). I do not take one iota for
granted.
But at the same
time, he cannot communicate. Again, we find our special and normal intertwined. Both, yet neither. We have a major barrier with a non-verbal child, and I don’t know
whether to beat my fists or crawl in a hole. I
long to talk to my son, back and forth, spontaneously, easily— like I do with
my other children. I want to know what
he is thinking, not merely what he is limited to telling me with the pre-set
choices on his communication device… all the while, leaving me guessing if he
is even accurately selecting from this complicated, albeit amazing, device.
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| John's left hand that he frequently bites when he is frustrated and cannot communicate. |
I want more.
I want to talk about the lights on the truck that passed by on the
highway, what hurt his feelings at school, what he thinks of his new glasses,
how he wants to celebrate his birthday.
I want to hear him tattle on his brothers, say the prayer at our dinner
table, beg to stay up a little later to read one more story, or tell me he is
tired of the same organic, gluten-free, dairy-free, soy-free, pureed food he
has been eating for 8 years. I want to
hear him say my name, hear him say, “I love you too, Mommy.” I want to know what’s really inside his
wonderful mind. What is in his heart,
the significant and the mundane.
Thursday
night, I felt paralyzed. Both stuck in
this moment where I, his mother of over 8 years, felt completely ill-equipped,
not knowing how to make him feel better.
And I also felt angry. Angry at my friends. Angry they don’t get it. Angry that they typically see “happy
John,” the Christmas card John you all see.
That they don’t know about these moments of despair, for him and for his
parents, in which we cannot communicate with our son. I even videoed part of this meltdown (the screenshot above was taken from this), just in
case I want to show one of these hypothetical friends some day, to not feel so
alone. To have witnesses to these very
real moments in which we can’t fix the hurt with a cookie and cup of milk. To make them see that the hardest times are
not merely in the future for us (such as the much anticipated teenage years). It is happening now. My mind then travels to how much effort going to church requires (and
why most special needs families I know do not go) or how my mind literally started racing yesterday morning when new service times were announced and the thought of arriving thirty minutes earlier feels impossible... feels personal... feels like we are not seen.
Once some of the irrational dissipates, I know that I am
not angry with my actual, real-life friends. And I am not angry at our church— it is filled with grace! And there are later service options even if the same people won't be there, and we will figure it out. I am
angry at the isolation, at the pain. I
am still learning (aren't we all?) how to navigate this tension between abundant life and overwhelming loss. Nevertheless, my mind wants to anchor these
feelings somewhere, on someone. And really, the one who bears the brunt of my
day-to-day lament is God. But oftentimes, it can feel easier and safer to place my disappointment on the “people out there,” on faceless
and nameless “friends.”
I am scared of
unleashing it on my Lord.
However, we must remember that lament is a biblical discipline, a biblical invitation. This may seem foreign to those of us who feel the pressure, even from other people of faith, to jump immediately from lemons to lemonade. And yet we find powerful and poignant lament in the Psalms, in Job of
course, in Lamentations, and yes, from the lips of Jesus himself. As I heard recently on a podcast, we miss out
on opportunities to commune with God when we hide our pain and do not engage Him
in our sorrow.
You may be neither a
“special needs mom” nor a “normal mom” like I am. However, I imagine you probably experience
that bizarre combination of both “special” and “normal” in striking similarity.
That you have your own hard road to
walk. A road that, also like mine, is full of joy
and blessings but is simultaneously complicated and nuanced, like that darn communication
device. We can hold gratitude and disappointment together; this is our human experience and an expression of true faith.
In light of my experience, I believe that the best way to traverse this path is to pursue a completely honest, open relationship with God. One
in which we keep reaching out rather than withdrawing out of fear our emotions
are inappropriate or our thoughts and doubts are not in keeping with what God wants for us. Our
enemy encourages this sentiment and loves nothing more than coaxing us to keep God at arm’s
length, to put up boundary after boundary until we wind up not communicating with God
at all. Satan knows (but wants to prevent) what we don’t always
understand about God. That God can handle it all. What’s more, He can use it all.
God welcomes us
in our lament, knowing that doubt, grief, and confusion over how life twists
and turns are not the antithesis of faith but instead can be the rich soil in
which authentic faith grows. And, yes,
even triumphs. Lean into lament, lean into the special and normal about your
life, and lean into your King. I may be simultaneously grateful and disappointed, feeling the hard things while loving our life. I may be confused more than not. In all these things, I hope to bring my story, the whole messy thing, to the One who matches my weakness with His strength and who always brings life from death.
I highly recommend
Tim Keller’s book, Walking with God
through Pain and Suffering, and will leave you with a quote I find incredibly helpful:
“Through it all, Job never stopped praying.
Yes, he complained, but he complained to God. He doubted, but He doubted
to God. He screamed and yelled, but he did it in God’s presence. No
matter how much in agony he was, he continued to address God. He kept seeking
him. And in the end, God said Job triumphed.”
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| Gotta love the pictures that fit in the happy "Christmas card" category!! :) |
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| Our little Michael is getting so big: 20 months old! |
