Huge Small Victories

IMG_5358This weekend we went away for Grayson’s 13th birthday.  I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…

The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.

The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy. 

Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder. 

I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.

I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there. 

But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down.  He asked for help from strangers when he needed it.  He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years. 

On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…IMG_5346

For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.

“Love…bears all things, believes all things, hopes all things, endures all things.                     Love never fails.”                                                                                                                                    I Cor. 13:7

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Living Seasonally

live-in-each-season-1024x1024I’ve spent the last few months with blinders on…not the blindfold type of blinders that prevent you from seeing, but more like the type they put on horses to keep them focused on what is ahead of them.  Life all of a sudden got really hard, and really good, and really busy, all at the same time.  Kind of like a whirlwind introduction to teenagers, owning your own business, husband starting a business kind of boot camp.  I laugh/cringe because this is just the way I operate…when things get hard, I get small and go inward.  When I was delivering my first son, I basically kicked everyone out (and down the hall so I couldn’t even hear their voices), and my poor husband who took all those crazy classes with me didn’t even have a chance to put his newfound knowledge to work from his chair in the corner.  I had to be fully alone and present with myself to focus and complete the task at hand.  So I’ve spent the last few months in my “internal cocoon…” possibly socially isolated and emotionally withdrawn, although I don’t know how I appear to others.  I haven’t been upset, I’ve just had to focus on getting through a challenging time and I do my best work alone.

I planned and pushed with fervency to wrap up as many jobs as possible so that I could be home with my kids for the summer.  And then…it was summer.  But to my complete surprise (and delight), the summer that normally devours me like a consuming tornado, has meandered in peacefully and silently, observed by the wonderful cessation of marking time and checking off to-do lists.  I did reverse psychology on myself by getting so busy, that summer now seems slow in comparison (I must be smarter than I thought to be able to trick myself)!  My oldest boys literally fish from sun-up to sun-down and my daughter is in Florida helping family.  I have gone from having 5 seemingly co-dependent children to feeling like I only have 2!  My days have transitioned from non-stop movement, to coffee (with refills!) on the patio in the company of a good book.

Throughout the course of the last few months, I am reminded that the struggles and busy-ness of life can function as a splinter.  They can cause irritation and sometimes outright pain, but the second they are removed, the relief gives way to a newfound joy and appreciation.  Although I am a regrettably slow learner, I am beginning to posses with certainty the belief that every stage of life is good (even the hard ones) and can offer new opportunities for gratitude.  I have loved being busy and creative and working, but I also love letting my brain rest and “just” being a mom.  We can go through life, constantly looking anxiously ahead to the next phase, or we can learn to suck the marrow out of the here and now.  I have done plenty of looking ahead.  I long to improve upon cherishing the present.

I am also (finally) beginning the grasp the importance of living seasonally.  Earlier in life, I strived and worked incessantly.  I felt lazy if I stopped to rest.  Yet when we frantically press on and on (even in positive, fun times) without diversity or change in pace, we quickly run out of steam and live a dreary life of monotony.  There must be times of ebb and flow, work and rest, tears and laughter, suffering and joy.  I am learning to heed and embrace the literal seasons of nature for life cues…the long, slow spread of summer days, the solitude and silence of winter, the invigoration of spring and the calming crispness of fall.  I’m even attempting to eat seasonal foods to provide for varying physical needs throughout the year.  I’m trying to fight less against life, and instead receive with open hands of gratitude each twist of events that life presents.  In doing so, I am learning to trust more deeply and authentically.  Hindsight is always 20/20 and the longer I live, the more I can look back over the threads of time to see how my life is being expertly woven.  I am seeing with greater clarity that I can breathe and lean fully into a life of trusting God, nature, and myself.

Living seasonally is nothing new.  It is, in fact, ancient and old and wise.  I, however am not.  But perhaps through the symbiotic relationship of internal intuition and nature’s external prompting, I can settle in to a rhythmic sort of journey that will lead to a full, healthy and long existence.  Life is hard.  But it’s also really, really beautiful.  I want to make the CHOICE to savor the sweetness of life, instead of dwelling on it’s bitter moments.  Cheers to summer…My new art purchase...

 

 

You Are Enough.

13323703_1046851035408719_7118944347292993062_oTo my new friend…and for anyone else who is struggling to feel that they are “enough…”

I can see you have a hard time recognizing the beautiful person you are and all of the wonderful things that you do.  I shared that until you are able to see for yourself how amazing you are, you would have to learn to trust those who best know you.  I realize that I just met you and don’t yet qualify for that role.  But I have been where you are and my heart hurts because I understand how you feel.

You approached me because of our shared struggle in raising special needs kids.  My impression of you right off was that you live with gratitude (you didn’t have to come up to me to say thank you), and you are courageous (for being vulnerable with someone you just met).  I quickly realized that you are exceptionally amazing because you willingly chose to bring two struggling children (that are not yours by birth) into your practically empty-nest home.  I don’t know if you recognize the magnitude of this choice.  It doesn’t matter if you have been scared or have second guessed yourself…you willingly exchanged your life for theirs and there is no greater love than this.

And forgive me, but I Facebook stalked you tonight.  I looked at your pictures and I didn’t see irritability or failure or anything else that you mentioned.  What I did see was a strong woman fighting to give two children a normal life; children that would have otherwise been lost to the proverbial system.  I saw two children living in a house surrounded with beautifully tended flowers and attending church in a loving community.  I saw birthday parties, extravagant school projects, Halloween costumes…all things that these children would never know without you.  I saw your beautiful smile in many pictures.  How many forgotten children never receive a genuine smile?  Do you realize what normalcy, consistency and safety you are giving to these kids?

Of course I know that there is more to meet the eye than what is portrayed on social media.  I know that you rage and cry and scream and want to drive off in your car and never look back.  But I also know WHY you feel this way.  It is NOT because of who YOU are.  It is because of the situation you are in and the ways you are being stretched and pushed beyond your capacity.  You are strong day in and day out.  You can’t even truly rest while you sleep because of the dreams and nightmares.  You are trying to love two children as your own, even though you missed out on the essential bonding years of infancy.  Not only that, but you work full time!!  In my book, this certainly qualifies you for some kind of major award! 

I can see that you truly want the best for these kids.  You really love them.  But I can also see that you’re tired, you’re depleted and you’re running on fumes.  You are human and you have a limited amount of time and energy.  So you have to, for everyone’s sake, eliminate all the needless junk in your life.  By this, I mean get rid of the self-imposed guilt.  Expel the hovering, vicious thoughts telling you that you’re failing.  And especially, eliminate (as you are able) all of the self-doubt that pushes you to believe that you’re not good enough, patient enough, loving enough, whatever enough.  You are you and that is enough.  At the end of every day you are empty.  This is because you have given everything so that they might want for nothing .  It will never feel like enough because they are bottomless pits at this point (regarding their neediness).  But with time, maybe their special needs will be less because of the backbreaking work you are putting forth now. 

Above all, try to look at yourself and everything around you with soft eyes.  Pursue beauty and that which feeds your soul.  Your face lit up when you talked about books…maybe you could make yourself a cozy reading niche?  Perhaps gardening or photography are undiscovered talents?  Regardless, figure out how to love, cherish, and respect yourself.  It is not selfish…it is survival.  Celebrate the small things, turn your morning coffee into a  sacred ritual.  Give yourself permission to sit and do nothing without judgment.  Fight for joy and pray for the eyes to see light and beauty. 

quotes_creator_20161219_090518And though I don’t know you well, know that I love you.  We are connected through our struggles and sufferings and I understand.  I understand that you sometimes feel trapped in your own life.  I recognize that you constantly feel as if you are on the verge of a mental breakdown and I am all too acutely aware of the guilt that has become your constant unwanted companion.  But I also see that you are strong enough.  You will have to work hard at resting, strive to surround yourself with love, and be a continual advocate for yourself and your family.  But I know that you can do it.  Hang in there and believe me when I say that you are amazing.  Good strength!

The New Man in My Life

There is a strange new man living in my house.  He is tall, dark and handsome.  Apparently, he is also extremely smart.  He’s always brandishing this alleged intelligence and for some odd reason, constantly feels the need to remind me of his self-proclaimed autonomy.  But it’s ironic…although he can drive a car, he can’t make a sandwich.  And even though he’s able to decode insane chemistry equations, he looks at me like I’m speaking in Charlie Brown’s teacher’s voice if I ask him to clean his room.  This same “man,” who I am barely allowed to touch, also crawls into my room at 4 a.m. asking me if I have any medicine for his “tummy-ache.”

This paradoxical way of living is making me a little insane.  If I relied on his feedback at all, I might be a bit schizophrenic and (only) slightly insulted.  I have been told I’m a dictator, a crazy woman, completely irrational, and even a crack-addict!  The unfortunate thing is, I’m not even sure that I completely disagree.  Sometimes I feel like the wicked queen, wanting to wave my wand and banish him from my kingdom forever.  Other days I feel psychotic, like I could literally strangle the life out of him that I imparted 16 years ago.  At times, I cry, mourning the loss of childhood and sweet innocence.  And on rare occasions, my sanity returns to me (if only briefly) and I am able to look into his eyes and see my child.  I see his fears and struggles, his pain and insecurities, his dreams and failures.  In an instant, he becomes a mirror to me and I am laid bare before my fears and struggles, my pain and insecurities, my dreams and failures.  I am amazed and humbled as I realize that even though it seems that he is fighting against me, in reality, we are fighting together…fighting for his personhood, his character, his soul.

This stage of his life can only be likened to a second birth.  Many days, I feel as though it is one big, fat, long contraction…sweating and toiling, but painful and very seemingly unproductive. But this time, I am not laboring to bring forth a child, I am laboring with my whole heart and soul to bring forth a fully grown man: a man who is loving and appreciative, respectful and kind, hard working and moral. This is not an easy task in today’s world.  So to get through the labor pains, I keep before me the hopeful glimpses into his heart…images of him on the river, hunting with his dad and brother, the amazing photographs he takes, his hidden self-reflective side…and I find my hope that one day, the hard work will be over and standing before me will be an exceptional human being.  Lord willing, we will be able to look back and laugh together at these days and what he has put us through.

43810047-young-woman-eating-popcorn-while-watching-tv-isolated-on-white-backgroundAnd then…when time has passed and he’s grown and married and fathers my first sweet grand-baby, I will pull up my chair and popcorn and eagerly await for the arrival of my dear friend Karma!

 

Reading Color

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Today I met the most amazing man.  He is an older gentleman from Greece and he writes (draws) icons for Orthodox churches. He was sweet and funny but what I found fascinating was his ability to see color.  Now anyone who knows me knows that I am a bit obsessed with color. I love the undertones, the way they change from wall to wall, from day to night. I love colors that look blue and gray and green all at once, to where you almost don’t know what color you’re looking at.  I would get a Ph.D. in color if there was such a thing!  This is very different than my husband, who when asked which paint swatch he likes best, responds with a shrug and says that they all look the same (bless his heart, as they say in the South).  But I digress…back to the iconographer. What amazed me about this man is that he not only can read color, he  knows how to MAKE it!  He can look at a color and know how much black and white and red and yellow and blue would be required to CREATE any color!  He knows what to add if it’s too dark or how much to add if it’s too light and what colors enhance the richness of others.  This might be silly but it honestly mesmerized me.  I’ve been thinking about it all day.  What talent and skill!

soulAnd so I have come to this thought tonight…what if we could look at people the way that this artist looks at color?  What if we could have insight into the creation of their personhood, how they became who they are…their ups and downs, sorrows and joys, the moments that have either broken or resurrected them, what they currently long for?  What if we could discern exactly what “color” to add to enhance other’s lives and beautify their existence?  How much more patient and compassionate would we all become?  What if we could learn to look at OURSELVES this way?!  What if today, instead of seeing my irritability and the dishes and the messes and everything that feels like a failure, what if I could look at myself like a color, complex with constantly changing undertones, drastically different in the morning light, but beautiful nonetheless.

But alas, my eye is not quite as developed as this skilled artisan.  I still see only in tones and shadows.  I do not look deep enough or close enough.  The late author Jonathan Swift writes that, “Vision is the art of seeing what is invisible to others.”  Oh, that I might have the eyes to see that which remains hidden in every person, and the knowledge of what to add so that fullness of color might be achieved.   Perhaps over the course of my life, I will hone my skill and attain proficiency.  In the meantime, I will remain restlessly content to aspire to those who have inspired.