Monday, May 22, 2017

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 Outdated (by over two decades!)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!

Wednesday, December 7, 2016

Let's Get Real

“Now if we are children, then we are heirs – heirs of God and co-heirs with Christ, if indeed we share in His sufferings in order that we may also share in His glory.”
-Romans 8: 17

It is hard.  It just is.  That’s the reality and the road we walk.  It is also wonderful, and we feel incredibly blessed.  But I value honesty, believing we can all benefit by sharing in our weaknesses and trials, trusting God is strong in them.  Yes, I’ll say it again (mostly to myself): we can be weak.  Life can be hard.  God is strong in our weakness.  And that is okay. 

This is NO fault to my parents, but I grew up thinking if I admitted anything was hard or even just a little “off,” it was only okay as long as I immediately jumped to the positive.  Have lemons?  You better talk about how you’re making lemonade!  And you must throw a lesson in there from the Lord, highlight the situation with some Bible verses, and certainly proclaim how this cruddy thing is actually a good thing.  A “God thing” even.  Nothing can really be bad or truly be hard.  Tears, if they come, are wiped and we move forward in victory.  Because “if God is for us, who can be against us?!”  Sound familiar? 

I’m going to share a few instances that have been difficult for me recently, not out of a desire to complain (but if we are honest, we all want to at times!) but rather in hopes of giving you an intimate glimpse into at least one person’s story, our story— and telling you that you are not alone in your struggles and grief triggers.  After all, it’s the most wonderful trigger-loaded time of the year.

Instance 1)   We were at Daniel’s final baseball game a few weeks ago.  When someone saw all of our kids (we all made it to that game! Score!), he inqiured, “4 boys— any twins in there?!”  I’m sure this man wondered about my hesitation, the fact that I probably seemed a little tongue tied to a seemingly straightforward question.  I get this question a lot, mostly because John is always in a wheelchair or stroller of some sort, making him appear younger, and he is the same size as Daniel, our 5 year old.  And yes, they all look a lot alike. 

I KNOW these people don’t intend any harm by their comments, and I have certainly inserted my feet into my mouth more times than I’d like to admit!  But yes, it is a grief trigger nonetheless.  And it stings.  Because the answer is neither yes nor is it no.  Yes, there are twins among my children.  No, they are not represented in this current, earthly moment.  Yes, I carried and gave birth to beautiful, identical twin boys; I belong to that club!  I want some recognition!  But no, you cannot see it outwardly.  And you are just a sweet stranger and neither want nor need to hear my whole story while enjoying your hot dog at the ballpark!  Additionally, whereas I may have felt the need in the past, I don’t always feel the need or desire to go into the full history these days unless it is one of those special, God ordained moments.  Or I just share off the cuff and out of context about my twin pregnancy, delivery, or something like that. 

Instance 2)   The next incident happened at Bible study last week. We were discussing the questions and answers from the week’s homework among our small group.  One lady piped up and said that she used to teach special education and that they emphasized speaking, hearing and seeing everything they were teaching or learning.  I love that; ware sensory creatures and require specific sensory stimuli to learn!   She tied this in by sharing that she had to read and look over this one question again and again.  Another lady chimed in, saying with a laugh, “I think we are all ‘special ed’ when it comes to this!”  Pointing to the Bible on her lap, she said it again.   

Similar to the first instance, I know this lady meant no ill will, but once again, triggers ensue, chest palpitations even, and flight/fright/freeze kicks in.  And before I know it, the moment has passed and I have neither stood up for my son nor educated these kind albeit clueless folks on the reality of special education.  (Now you can add guilt over a missed opportunity to the equation!) 

The implication of these types of comments, which breaks my heart, is that we are all “special ed” when it comes to the Bible because we are slow to understand and absorb these truths— that we are somehow limited, lesser, thick skulled or dimwitted.  That we need “extra” help due to our struggles, just like the special education population.  But heaven forbid that we are “special ed” in any other area— just when it comes to faith and understanding God’s Word.  The reality is that special education is about learning differently, not about being less than. 

Instance 3)   On another family outing, this sweet old man was attempting to interact with all of our boys.  John and Michael, our youngest, were the in the double stroller together.  As this man tried engaging them both, he was not get a lot of feedback from John but instead elicited smiles and coos from baby Michael. John can be very smiley and outgoing, but oftentimes he withdraws when we are out in public, it’s loud, or he is in an unfamiliar environment.  It is just too much sensory input flooding his system.  This even happens at almost every family holiday gathering which about kills me, because I want all of my family members to know the John we know.  To see his vibrant spirit and sharp mind.  To hear his amazing laugh.  To see he understands despite his limitations.  Instead, he typically glazes over, stares off, and disconnects.  This was probably happening on this particular outing.  Anyway, this man, no lie, starts talking about Michael specifically, stating with a big smile on his face, “Now this one… this is the one I like.  I like this one.”  Dagger in my heart.  The man’s response and preference were based on what he was able to extract from my boys, what made him feel good, what benefited him. 

Did any of the people in the above encounters set out to be insensitive in their remarks?  No, I am certain they did not.  However, life does give us lemons.  And sometimes, it is just bitter.  There is no lemonade, or at least there isn’t any yet.  We cannot perceive how God is possibly for us in our circumstances.  Instead, there is anger at times.  And even judgment.  Our own harsh words in return.  Or withdrawal and self-pity. 

The root is sadness, shock, hurt, disappointment, PTSD, and grief’s complex triggers.  Pain is a universal reality.  And I firmly believe that sometimes we need to sit in that reality… that it really is the healthiest thing we can do.  And the most spiritual at that!  We need to share.  We need to be weak.  We need to seek God’s comfort.  We need to come alongside each other.  We desperately need to admit that life is a mess.  Admitting that God Himself suffered when He took on flesh and died on the cross.  That He meets us in the pain.  That He uses bad for good.  That bad is NOT good.  Bad is bad.  But He uses bad for good.  Every time.  Just as He did on the cross.  The greatest evil was transformed into our greatest good.  Into our only hope. 

So we will keep on.  2,000 years ago, God came into our world and submitted Himself to this broken and raw human experience.  He took on flesh because He is Emmanuel: God with us, God suffering with us, God passionate for us, God loving us.  You are seen in the pain.  He sees you.  

Thank God He doesn’t pursue, choose, like, or respond to us based on our charismatic initiative, merit, or positive response to Him.  In stark contrast, there is no hesitation on His lips as He looks at you, His beloved child, and proclaims, “YOU are the one I like.  You.  Simply because you are mine.  I came into this world for you.  I love you.  You are the one I like.

This song (click here) is adapted from Psalm 126; please listen and take these words to heart.

 “For many years, the people have forgotten, they’ve fallen asleep.  
Tonight your pain and longing roused them, helped them to begin to remember something they lost along the way.  
Look out there… see the faces of the men and women, aglow, alive.  
Your doubt-filled trust called them to life.” 
-Patched Together by Brennan Manning

Monday, October 17, 2016

Okay, I admit it!

We all get caught up in comparison and have illusions we chase.  One of these for me has been the idea of the “normal mom.”  From our parenting beginnings of being on bed rest with identical twins to the crises following their birth, the normal mom thing has never been an option for me.  Whether in laughter or jealousy, I have held it up as this ideal that perhaps I can someday, somehow achieve.

There is a whole list in my head of things these “normal moms” do and, by comparison, that I do not do (or rarely do):

-Planning and participating in regular play dates (without getting completely overwhelmed at the thought of putting the kids in the car only to take them out and then put them back in again).  Some moms are so on top of it, they can pull off a play date at a park with lunch ready for their kids and are equipped with any needed accessories, wipes, hand sanitizer, riding toys from home, etc.

-Taking all your kids with you to pick up another child (or two!) from school. And doing this every day. 

-Or, having enough flexibility and wherewithal to arrange and implement a carpooling schedule with a friend or neighbor in such a way that you are adding to the equation and not just the one receiving the benefit.

-Volunteering for things like teaching Sunday school or helping in the nursery. (I judge myself, thinking, I AM a full time mom after all, and the working moms somehow do it… it’s the least I should be able to do.)

-Letting your kids play on sports teams, maybe even multiple teams for multiple kids during the same season.

-Regularly dressing your kids in coordinating outfits for things like church, parties, holiday events, and school programs.  And you get super mom status if you can achieve this AND be on time.

-Sitting down to family dinners, at the same time, in which everyone eats the same thing.  (And everyone has the ability to eat the same thing.  And sit independently.  And… okay, I’ll stop there.)

-Taking your kids WITH you to the gym or to a women’s Bible study…and using the provided, onsite childcare.

-Venting about “normal mom” issues such as diaper blow outs, feeling inconvenienced by having to take your kid to his one annual doctor’s check up, dealing with picky eaters, potty training woes, the difficulty of traveling with kids, sibling rivalry, less than ideal school situations, etc.  (Okay, okay— I’ve given myself permission to engage in some of this over the years, but I also remind myself to be grateful when these are the “hardest” parts of my day.  I am not perfect, but I don’t want to waste the perspective we’ve been given!  One thing I do NOT do is complain when my kids reach regular milestones early or earlier than most would like, such as crawling, walking, or getting into things.  These achievements will always be absolute miracles to us.)

-Not feeling completely overwhelmed when your husband has to work late or even mentions a potential getaway with his guys.  Super mom points for encouraging this and handling it all with ease.  (However, I DO recommend breaks for you and your spouse, because these moments are what keep us sane, help us remember who we are simply as individuals, and make us better when we get back to our roles of wife, mom, employee, friend, etc.)

-Running errands and grocery shopping with your children.  (Instead, we know the Instacart grocery delivery folks and are friends with our UPS guy, Simeon, due to our daily shipments from Amazon.)

I laugh at most of the things on this list or, by now, know they aren’t all that important.  However, this list can make me sad or angry at times.  I am not proud of it, but I can judge or speak harshly about those “normal moms” I envy.  Those moms who haven’t lost what I have lost or weren’t cheated out of the normal parenting experience I have desired.

Well this fall, more of the things on the “normal mom” list have started coming together for me…  I have had all four children in my car after picking up the older two from school (at least a few times!).  I occasionally take a child (notice the singular article) to CVS with me.  Meade and I have each managed a weekend trip here and there.  I am making my youngest three eat what we are eating at dinner.  Sometimes.  John and Daniel are even on their first ever baseball teams.  John is on a great buddy league for children with special needs.  And Daniel is playing T-Ball to assuage my mom guilt and fear that he would have been the very last kid to play baseball if we had waited until the spring.  

However, the biggest “normal mom” thing I was doing this fall was undoubtedly taking Andrew and Michael to Bible Study Fellowship with me and stashing them in the on site nursery while I studied the Gospel of John.  I was determined it was going to happen, and I was pumped!  Maybe I’m becoming a normal mom?  Maybe I am arriving?! 

I have participated in a few moms’ groups or Bible studies over the past eight years, but it has gone like this:  I was not about to leave John in a nursery when he was still having seizures as a baby.  Then, as he stabilized, I still didn’t think it was fair to put him in the church nursery since he requires one on one care. I might have been a wee bit overprotective as well.  In fact, we never left John in the church nursery until we deposited Daniel for the first time when he was six months old.  Yep, John was in the church service with us for three years. 

As the years have gone on, there has always seemed to be a baby taking a morning nap and, mostly, just too many complicated logistics making it easier to not attend such gatherings or to have my own help at home while I venture out.  I have lived with double guilt – guilt over not bringing my children with me like the other moms and additional guilt over getting my own babysitter and seeming high maintenance, incompetent, or like a poor steward of money. 

This fall was my time!!  I was even going to let Michael forego his morning nap so we could be “normal.”  I mentally prepared all summer and felt up to the challenge of bringing my two youngest with me to my new Bible study.  Well, for those of you who read my last post, The Terrible, Horrible, No Good, Very Bad Day, you know how that first Bible study and nursery experience turned out.  Not so hot.  My normal mom dreams were once again dashed.   So on that fateful Wednesday a few weeks ago, after I hiked around Atlanta for 40 minutes in the heat with my 2 and 1 year olds, I raised my white flag…

I give up!  I will admit it:  I am NOT a normal mom! 

I took this selfie during one of our breaks sitting on the side of the road, desperately praying we would find our car!!  I needed proof:

Here’s the honest truth:  I do rely on my husband.  A lot.  I pay babysitters to watch some of my kids, so I can pick up others…  or run errands by myself.  I also pay babysitters at times to be home with my kids while I am also here but taking a nap.  I love a monogrammed outfit but usually one boy at a time is all I can pull off.  Yes, two of my kids are on sports teams this fall, but I have been to so few of their games that it’s embarrassing.  Like I mentioned on my list, the thought of taking all of my kids somewhere still overwhelms me.  Meade and I divide and conquer.  A lot.

And what about my new Bible study?  The Enemy may have gotten me down that day, but he did not win.  I am still going to BSF, but as of the very second week, I began leaving my kids at home with my own babysitter.  And you know what?  It feels GREAT.  I did get a panicked call from someone in the children’s program wondering why I pulled my kids out and if I had experienced any problems.  I had to chuckle… No ma’am, the issue boils down to this—I am not a normal mom.   And that is okay. 

Our family does have unique challenges; therefore, we have forged paths and found ways to make life work.  I have learned to be a little more laid back than a Type A normally would be.  I am okay with clutter and dirt… yes, I'm referring to what is inside my house.  At this time in my life, I do not throw dinner parties using my nice china nor do I prepare a homemade spread.  Similarly to our UPS friend, we know our pizza and Chinese delivery guys by name.  I don’t journey out to play dates with all four of my kids, but I do love having others over to our house.  And my friends are sweet to accommodate us!  And yeah, we have quite the army of helpers behind us. 

So this whole thing about being a “normal mom” or having a “normal parenting experience”??   Does anyone really feel this way?  Does anyone, mom or not, even feel “normal”?  I imagine not many.  And if you happen to have arrived and consider yourself to be in the normal mom club, well, I feel sorry for you.  It must get lonely! 

I will close with a plug for a fabulous new TV show on ABC.  Speechless stars Minnie Driver and is about her family and her oldest son who is wheelchair bound and nonverbal.  Not only is this show poignant and socially significant by representing those with special needs, it is also hilarious!  I love how the mom is a little crazy, just like me! 

I have to share this touching and empowering exchange between the father and his “neurotypical” (the word we use for developmentally “normal”) son at the end of Episode 3.  This is evidence the Lord can use TV.  This confirmed all that I had been pondering.

Dad: Why do you care so much what other people think?

Tween Son: Why don't you?   Seriously Dad, don't you want to be normal?  How can you live like this?

Dad: You want to know how? Because all this stuff— other people's opinions—
 it's nothing. You know what's not nothing?  When the doctor tells you there's something's wrong with your kid, all the things he is never going to do, and it's a nice long list.  
        But look at your brother (referring to the one with special needs).  He's great, smart, funny...  So now when something happens, it's like, "What else you got? Bring it on." 
        I get it; normal seems good. But guess what? We're not normal. We're better. We're bulletproof.

AMEN TO THAT!!  So here is to NOT being normal!  Let’s admit it and celebrate!  Because life is a gift and too short to get bogged down by all Satan has stolen, killed and destroyed.  And yeah, he has done those things.  And it stinks.  But we can look at the flipside of John 10:10 and live in light of the full life Jesus came to give us.   My life may not be normal, but it certainly is abundant.

Michael digging in on his 1st birthday a month ago!
"The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly."
-John 10:10

Tune in to watch Speechless on Wednesdays at 8:30/7:30c on ABC!  And try to catch up on the previous episodes.  It is so validating to have a major television network portray a glimpse into our everyday lives on primetime.  I hope this show makes it!  It is important for our neighbors, children, and members of our community to be exposed to the underrepresented minority of those with disabilities.  Okay, I’m descending from my soapbox now.  :)