On Feeling Special... and Normal

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.

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 Outdated (by over two decades!)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.  

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.”

Gotta love the pictures that fit in the happy "Christmas card" category!!  :)

Our little Michael is getting so big: 20 months old!