Saturday, May 10, 2014


I have a girlfriend who called me up one day while she was pregnant with her 3rd baby and, laughing, told me she had just "peed her pants in the middle of the kitchen."  Apparently she felt something trickling down her leg and, when she realized she was "leaking" pee, rather than attempting to stop it, she just embraced what was happening and made sure she was standing above a rug that could be washed.  I kind of feel a bit like her, on an emotional level right now.  I have been "leaking" emotions lately--some of them leaking out sideways in forms I am not proud of (a.k.a. grumpiness, anxiety, numbness, criticism).  Rather than continuing to leak, I think I'm going to pray I am standing above a rug that can be washed and just embrace the fact that I would much rather overflow than leak.

Let me explain that last comment. Leaking implies that something is coming out that you are trying to stop…almost like you can't prevent it, usually with negative implications, often repaired in a state of urgency in ways that aren't long-term fixes, sometimes followed by additional leaks that spurt out sideways when you've fixed another.  Overflow, on the other hand, implies excess…too much of something that caused it to spill over, usually resolved by just allowing it to flow for awhile until it kind of levels out at full.  I am going to choose to just overflow a little today rather than continuing to sprout little leaks.  Meaning, this post might include a little bit of emotional spillage.

When I signed up for autism, so to speak--meaning when I realized I had and would be raising a son with special needs into the eternities and chose to embrace everything that comes with that--I don't think I had a clue what that meant on a daily basis.  I had no idea that everyday life could be so fraught with obstacles and even the smallest of tasks could/would be so difficult.  I don't think I knew that my bad days would stink as badly as they do (antithesis is also true, but honestly, I need to vent for a bit before I will get to that point).  I also didn't know that I had a breaking point--that I literally would entertain thoughts of "running away" from my life, escaping everything and trying to find a new one.  I didn't know that it could cause me to question even the most concrete aspects of who I thought I was and what i thought I believed.  I didn't know what an identity crisis looked like because I thought I knew myself.  I certainly believed that I could talk my way out of any bad day/week/ month and positive thinking coupled with sincere prayer would pull me out of the lowest slump.  Ignorance = bliss.

Daily life with Matthew has been exceptionally hard lately.  Part of the reason for that is because he is literally obsessed with me--cannot not touch me if I am in the same room. Here's an example: he wakes up in the morning and launches his poopy self into my arms yelling "WAFFLE" (translation: love you) and "hug! hug! hug!" He then wraps his cute little leg completely around me and starts to climb up my body (yes, still poopy) until I finally pick him up and squeeze him, telling him how much I love him too.  We then go into the bathroom where I do my best to keep my distance from his naked poop-ness as I scrub him down and bathe him.  Half the time, i sit him on the potty and squat down in front of him so that I can lean forward and continue to hug him.  He sometimes launches off the toilet and literally throws me against the wall in his efforts to get another huge mid-business.  After he takes a bath, his wet self again snakes around me and I attempt to pry just one leg off and into his pants at a time.  By the end of the dressing session, I am usually wet, sometimes a bit stinky, and out of breath.  The day continues in similar fashion with each task we go through having a routine that involves me either embracing or avoiding Matthew and his exhausting, but oh so precious, "waffle" moments.  When I attempt to avoid a moment in the name of anything else (a.k.a. when he needs to eat or get on the bus or another child is bleeding in the corner), a large tantrum often ensues and doesn't end until I "hug! hug!" and "waffle" him right back.

I just finished reading a book with a subtitle that resonates with me--"Embracing the Relentless Love of a Special Child."  As I've read her journey with her son, Wil (book is called "Wil of God") where she shares parts of her story, aspects of her daily life, and some of her struggles, I've literally wept because it hit so close to home.  She beautifully describes a lot of what I have felt and she makes me feel less lonely in this process.  There are several things she says in this book that I want to share because they have been incredibly helpful to me these past weeks as I've been really struggling to figure out how to cope with "relentless love."  Honestly, when I first read the subtitle, I thought it was a bit crazy because love, relentless or not, is awesome!  But relentless means it doesn't sleep or pause, is not easily distracted, and cannot be redirected when necessary.  It does not relent, even when you have other children to raise and need it to, if just for a moment, not come at you with full force.

Now, with relentless love and lots and lots of "waffles" come some amazing gifts and opportunities to develop gifts--gifts that are so easy to lose sight of when a poopy body is throwing itself on you and you knock your head against the wall trying to balance yourself in the process.  I wanted to share some of what I learned from this book and I think I'll frame her insights in terms of some of the gifts I extrapolated from her story.  Please know I write this more for myself than anything--I am absolutely desperate to pull myself out of this mommy-funk and try to "embrace," as she puts it, the unrelenting "love" I feel almost buried by.

The first gift is one of understanding and perspective. At one point, she goes to a Tarot card reader in search of some understanding about what her future will look like as she is trying so hard to come to grips with a reality she never anticipated after her son was diagnosed with autism and a whole slew of other fun things (it's never just one thing with autism--there is almost always a list).  I can relate to her desire to read the future so you can plan for it.  Well, she caught a glimpse that day of something profound and, I can totally relate to her when she said it was exactly what she needed to sustain her. She is told "He (Wil) is not broken, there is nothing wrong with him.  He is perfect, but the world needs your help to see that.  So many will see what he lacks and see him as broken and in need of fixing.  he is not broken, he is open.  What are considered disabilities by some are in fact, special abilities: abilities to see the God in everyone, to love without conditions, to be completely nonjudgmental.  He has not lost his direct connection to God that all kids are born with but most lose by three or four.  He remembers heaven.  He remembers being in the holy presence of God and he will share his memories with you, but you will have to listen."

Her glimpse was a gift to her.  I crave those glimpses of my Matthew.  I want to know who he is, why he was given this challenge.  I feel so deeply that the same is true of my Matthew--though some may see him as broken, he is, instead, open.  He doesn't judge or label people--rather, he walks down the isles of an airplane, placing his hand on the shoulder of a stranger, looks at them and says, "waffle" without them having a clue they have just been touched by love.  There are moments when I look deeply into his eyes and he smiles at me and I KNOW he has divinity in him.

We all crave a bit of this perspective of our kids--we want to know what the future holds and what they are uniquely chosen to contribute.  And we all wish we could see their potential.  I believe that, as parents, we are entitled to those glimpses.  I'm not suggesting it will come from a Tarot card reader, but I do believe it can come to each of us if we are looking for it.  I know for a fact that it isn't just Matthew that has something incredible to offer the world.  I often overlook, in my deep quest to recognize what he is capable of and strong desire to not allow his struggles to overshadow his abilities, that I often don't allow my other children to shine--I am quick to criticize them, jump on their faults because I expect more of them, and less likely to praise them for things that they do because I assume they are capable. It is something I know I need to work on.

 The next gift is that of saving….let me explain.  One day, Todd came home with an epiphany--he said that "Matthew is going to save me from myself."  I kind of thought I knew what he meant, but I'm now starting to understand what he meant.  Another quote:
"This boy has saved me from myself….Before he was born, I was more concerned about a clean house than a clean heart.  I was more caught up in what others thought of me, why they thought it and how I could control all that.  I was worried about being like everyone else. Now, I have been freed from being anything but myself and he has forced me to celelbrate all that he is, to see his differences as gifts, not as disabilities."  

I wish I could claim that I'm there, but this is something I am learning.  Todd and I are forever changed, no doubt, by who Matthew is and the forced focus on what is most important.  For example,we cannot be on our phones--Matthew will literally stalk us, screaming incessantly, if he so much as catches a glimpse of an iPhone (not just any phone--has to be a working, fully-funcitioning, iPhone).  If we give it to him, he chucks it on the ground.  If we keep it from him, he'll climb any counter, open any locked door, or claw his way through any zipper to get his prize.  And he won't give up until he has it….at which point he'll chuck it on the ground, scream until you pick it up, and repeat the whole process over again.  So we, of necessity, are not on our phones.  We aren't calling people, emailing, texting, or distracted by work and other aspects of life.  Rather, it is forced focus on what is most important rather than missing stuff because WE are distracted.

Oh how I crave this next gift--that of patience.  "When you have a child with significant needs, those needs either make you or break you. They either make you bitter or they make you holy."   Lately, I have felt bitter.  I have shed tears and held pity parties in my own honor.  I have been angry and jealous, frustrated and grumpy, and wanted to throw in the towel as things got worse when I already thought they sucked.  I have prayed for patience and been given another trial.  But I have realized that patience only comes by having it tried….and I must be getting more patient if the trials of my patience have to be so much more intense now to be considered "trials."  Right?  I think about the things that used to ruffle me and kind of giggle because I don't even notice those things now--my ability to let things roll off has improved significantly.  So I must be making some kind of progress.

The last gift I'm going to mention is that of flexibility.  I partially mean being more able to "go with the flow" and "roll with it," whatever "it" looks like (and I'm telling you, we deal with some ugly "it" around here sometimes).  But I also mean being more flexible in what our tomorrows look like.  The harder Matthew gets, the more frightened I sometimes feel.  What if Matthew never talks and I never get to hear him speak a full sentence?  He's six and still not potty trained--will he be in a diaper forever?   Will he ever be able to live independently?  I always thought he'd catch up, but he just seems like he's getting father behind.  "There was a time when I really believed Wil would catch up.  Developmentally delayed meant just that to me: delayed.  I see now that he will never be caught up, and that's okay.  He's where he is, and where he is, is perfect.  Where he is going will be revealed.  All will be well.  Not better.  Not worse.  Just different than planned or hoped for."

When I read that I kind of got mad because I'm not ready to "give up" on Matthew's future yet.  BUT I need to be able to embrace whatever it looks like…and be okay.  I think part of why life is such a struggle right now is because, though I thought I'd done it once, I'm mourning the death of what I expected. One "mourning" is apparently not all we do as parents.  Matthew just turned six and I have been grieving.  I have sobbed as I realized what Liam was doing at six and how far off that is for Matthew.   What we are celebrating as a victory with Matthew at six, we celebrated with Adi at the age of 22 months.  I want him to experience success and feel confident in his own future, but how can I inspire that in him when I am too distracted by my own grief at his present?  I need to remember that where he is, is perfect. "There is a fine line between hopefulness and denial and we special needs parents straddle that line at all times.  We push, we pull back, we dream, we adjust, we never give up, we surrender.  We do all we can and when we can't do anymore, we sit on the couch and re-group until we're ready to go at it again."   I am re-grouping so that I can get back to hoping and believing....and embracing where he is.

I watched my Matthew laugh a lot the last few days.  I got lots of "waffles" and rough, but sweet hugs. I even had some moments where his almost-always frantic, moving body softly rested….his head laying on my shoulder, his breathing slower, not pulling my hair or "mouthing" (translate: biting) my shoulder.  Just resting and "waffling" his Mommy.  Those are my moments.  I watched him on the airplane in the row behind me with Todd, the two of them giggling, looking deep into each others eyes (a HUGE victory), sharing inside jokes and just having fun.  Todd gets his moments.  In those moments, it is easy to remember that Matthew is a gift, and he is a teacher.

I realized as I knew I wanted to write this post that, though my story my feel unique to me and the specifics of my experiences might be different than those of other mothers, none of us is totally alone in this process.  Every Mom, no matter how angelic her kids, battles her own demons--the demons of doubt, insecurity, loneliness, guilt, fear, blah blah.  The list is long and different for each one of us.  But each of us is also given gifts from our children which can sustain us even when we are knocked off balance for an extended period of time.  I am trying so hard and praying my guts out that I will become all that I am supposed to because of and through the experiences of raising these children.  I am in awe that God trusted me enough because really….I'm not that good at all of this!  I'm grateful my children are resilient as I mess it up over and over.  But I am OH SO GRATEFUL that God chose them--my three extra special, hand-picked-for-our-family, very incredible little ones--to teach me.  They might kill me….or they might just give me the gifts that make me into a better woman.  Regardless, I am so blessed to be the recipient of their "waffles!"