Sunday, January 29, 2017

Less Screen Time, More Kruz Time

Based on my absence, it goes without saying that faithful blogging hasn't been my strong suit lately.  There's one very simple, yet ever so important, explanation...... a beautiful, precious 4 year old. Kruz is in the midst of a critical, formative stage.  He needs extra attention when it comes to growing and learning and becoming all that he is meant to be and screen time takes away from the time I have to give him.  I've committed to less time with the computer and more time to teaching and playing.  I've left facebook, partially due to my need to spend more time with Kruz but more due to the fact that social media did very little to bring out the best in me, and I haven't regretted it for a moment.

All in all, the past four to five months since my last post have been relatively quiet.  I've come to cherish the quiet times in life--those times when normal, familiar, status quo borders on monotony.  While quiet means that there is no thrilling news to share, neither are there earth shattering circumstances.

The holiday season came and went with very little ado.  We stayed close to home, enjoying time together and keeping it ever so simple.




Earlier this month, after Moise started back to school but before the college kids started their spring semester, our family (with the exception of Moise and Grant) spent a lovely, warm week in Florida.  While the trip was very enjoyable, Moise seems to struggle more with separation as he grows.   It's difficult to truly relax knowing he's shedding tears and failing to understand where we are and why we've left him.  It begs the question "is traveling really worth it?" We're a couple weeks home and I'm still contemplating the answer.









This month we're enjoying our usual winter birthday marathon.  Grant, Jade and Brock all celebrated birthdays and Moise turned 16, a fact that I can scarcely wrap my brain around.  We didn't hand the car keys over to him, which brought an unexpected sense of sadness, a longing for the way my mind thinks things ought to be. His birthday brought memories of our very early days with him, the days when we agonized over the decision to adopt him.  So many people seemed intent on making sure we knew that he wouldn't remain a cute, cuddly infant forever. One day he'd be big and it wasn't going to be much fun. It would be hard. We were constantly asked the question, "What will you do? How will you manage when he's 8? 12? 16?"  We didn't have answers then. We had virtually no idea. We were scared and overwhelmed by the many unknowns that lay before us.  Back then we did it the only way we knew how... one day, one moment at a time.  And here we are.  He's 16 and, at nearly 140 lbs, he's passed me up in size. I have no explanation but somehow I still manage to lift him.  It's been hard, really hard.  We're still doing it the only way we know how.... one day, one moment at time.  What we failed to take into account back then was how much he would grow us.  Sixteen years ago, parenting a 16 year old disabled son would have been impossible for us but God has used these years to prepare us for today.  He has given His grace moment by moment.


In other Moise news, the saga of his eyes continues.  In November he had a second valve placed in his "good" eye to relieve the pressure that was robbing the little vision he had left. Last week he had an exam under anesthesia, which revealed that the pressure is down and he is able to see light.  We are thankful and cautiously optimistic, knowing full well that this may just be a temporary fix. The eye exam did not bring good news for the left eye.  In the doctor's words "the left eye does not look good.  It's very unhealthy, as blind eyes tend to be."  The left eye is virtually useless to him and we will spend the next months evaluating what is the best course of action regarding it.  Moise has adapted to his vision loss and, with a lot of hard work and creativity, he's learning to read braille.  He has a hard time feeling the tiny raised dots of typical braille so we have modified it to better meet his
needs.  He's a wonder.



Kruz has absolutely blossomed over the past several months.  In October, a whole new world of exploration opened up to him and he began walking independently.  His fine motor skills are still severely delayed but with a lot of perseverance and hard work we are seeing baby steps of achievement.  On the self feeding front, he continues to try my patience but, while he still doesn't handle a spoon well, he's mastered the pincer grasp and finger feeding. His oral motor skills have also dramatically improved and he is now eating pretty much anything we eat.  I don't feel even a hint of sadness at leaving behind blending, pureeing and fork mashing.  He has a few words but, overall, his speech is not showing much progress. Next month he will have a second set of tubes put in his ears to ensure that there is no fluid reducing his hearing and, ultimately, his speech. He's pure joy.


The months away from social media and the quietness of the last year have given me a lot of time to think and ponder life, with all it's twists and turns. I appreciate the lack of comparison that comes without social media. I've found much peace and contentment in the quiet and I thank my God for it, knowing full well that life will bring many more challenges.  Today, in this moment, I'm loving the way Moise teaches me, the way Kruz adores me, the way my older children love on our two eternal children.  I treasure Sunday evenings, when all the kids, and sometimes a few others, come home for dinner.  I love watching my older children spread their wings into adulthood, the way they learn, the way the change.  I am humbled by the bond that laughter and tears have formed in this family and that God has taught us that His grace is sufficient for each moment.  I love that these are my people .



God is good, all the time

Thursday, September 8, 2016

7 Years Full Circle


Yesterday marked seven years since the fateful day that Laynee drew her last breath on this earth.
The worst day of our lives.  The best day of her life.

Labor Day weekend….September 7th…… It’s all tied up into one long week of remembering every detail of the days leading up to and then after her death.  I never cease to be amazed by the startling clarity of the memories, even now, 7 years later.  It’s as if there’s a movie projector in my mind and the Friday of Labor Day weekend, prompted by some unseen force, the reel begins to rewind and plays back all of the beauty of her last weekend and the horror of our first days without her.

The farther away I get from that day, the more it takes my breath away. Not in an I-can’t-bear-the-heaviness sort of way. But in an I-am-so-in-awe-of-God sort of way.  I grow increasingly frustrated by own inability to articulate the emotions and the ever deepening sacredness linked to my little girl……her life, her impact, her presence with the One who created her.   

Not long after Laynee was buried- the exact timing is lost in the haze of numbness that protected me in those days- a couple whose son was tragically taken from them many years ago came to visit Jim and I.  They shared their own experience, their grief, their sorrow, how they navigated through the trauma and pain, how it forever changed them.  This couple’s faith was deep then and even deeper now.  I vividly recall sitting on the sofa with this older lady, my hand in hers and asking “how long?”  How long until the pain subsides?  How long until the fog retreats? How long until I can function again? How long until it no longer consumes me?  How long until I am me again? How long must I bear this? I clung desperately to her words.  She, this one who’d borne this pain and survived, felt like my one link to brighter days.  She could fix this because she knew, really knew what I was going through. 

She looked at me with deep, soulful eyes and said “You’ll never be you again.  But the answer is no less than 5 years.” 

I felt like she had punched me in the stomach as the air whooshed from my lungs.  “5 YEARS?!?!?”   “I can’t do this for 5 years!  No way can I feel this, bear this, live like this for 5 years!  I can’t!”

Her response, filled with so much wisdom, was simply,  “You can and you will.  You have to.” 

Her words have come back to me time and time again.  She was right. I could. I did. I had to. Slowly but surely, somewhere between 5 and 7 years the fog has retreated, the numbness has faded away. Joy has stepped up and become greater and more prevalent than sorrow. Social settings no longer debilitate me. I have become less selfish in that her peace in heaven has become more meaningful than my own desire to hold her again.  My longing to have my baby back on earth with me has been completely replaced by longing to join her in heaven one day.  The two are astoundingly different.

She was right also in that I’ll never be “me” again.  I don’t want to be that “me” again. There were so many things that “me” didn’t know. A depth of spirituality that I never knew existed.  

I am also keenly aware that, though I can’t say exactly when, I have ceased asking questions that only God has answers to. All of the “whys” and “what if’s” and “hows” are meaningless.  They zap us of energy, causing anger and frustration because they are answer-less.  I don’t know why God took Laynee from this earth any more than I know why the season’s change or the sun comes up in the morning.  I can’t make sense of her death anymore than the fact that he created her in another woman’s womb but brought her to my arms. I don’t know why some people’s lives seem to go smoothly while other’s run topsy turvy.  Life and death and living……it’s all unfathomable, too big for the human mind to comprehend.

 In all the years of agonizing and wondering and pleading with the God of the universe for understanding, I have come full circle. I don't need understanding.  My faith has returned to it’s purest, simplest form. The only things that I know with absolute assurance are that there is a God, there is a heaven, and my baby girl is wherever heaven is.  The anwer, “because He is God,” is enough and it brings peace and freedom. 

The farther away I get from my last glimpse of her beautiful face, the deeper my desire to know the God who created her, the God who holds her, the God who has carried this family through unspeakable heartache.  And the more I come to know Him, the bigger He becomes and the smaller I become.  The bigger he becomes the more I cannot, I simply cannot, wrap my heart, my mind, my soul around Him. 

This one thing I know.  He is GOD and  God is good, all the time. 

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Monday, August 15, 2016

All Good Things Must End


We woke up this morning to dark, dreary, rainy skies.  We’ve had a lot of those this summer and normally I welcome the quiet that a rainy day brings, a brief respite from the physical labor that gardening and yard maintenance and everything else that summer lays at our feet.  But today felt especially dark and heavy.  The rain beat out a perfect tempo to the gloominess that comes from knowing summer is wrapping up.  School starts in two days.  It’s inevitable and so is the feeling that comes with it.

 I’m ready.  I’m not ready. 

It goes by so fast.  All good things do and summer is one of those good things.  One day…. yesterday, I think….. last school year was ending. Then summer sailed by in a blur of ice cream and freeze pops, fresh produce that I walked outside and picked from my very own garden, swimming and boating, long evening walks ‘cause that’s when it’s coolest, staying up too late and skipping the boy’s baths some nights because it’s too late, letting the boys sleep late just because I can.  Now we’re here, it’s today, the very last night of summer break. Tomorrow is a school night and just like that it comes to an end. 

School is hard for Moise.  He doesn’t love it.  He has been so peaceful, so quietly content all summer.  No frustration.  No agitation.  No agression.  School brings all of these things out of him.  Transitioning back to school, separating himself from me is always brutal.  I’m bracing myself for what’s coming but it makes me want to cling, just a little longer, to summer. 
I’m not ready.

  This past week we’ve been squeezing out every last bit of summer fun. 

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I want to remember this summer.  That this was the year that Kruz turned four and one day I turned around and realized that he’s lost the baby look and really, truly looks like the toddler he is.   I want to remember that this was the summer that he hummed song after song as he played. I want to remember the countless walks the older kids and I have taken around the lake.  That this was the year we learned to wake board.  The many hours spent in my sister’s pool, Kruz just brave enough to sit on the steps and Moise holding his breath under water so long it scared people who’ve never seen him swim. I want to remember all the things that so often get lost in living. 

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Yesterday, as Jamee and I walked along the riverfront with the boys the graffiti spoke to me.  It’s hard, so hard to send them back to school but I know, no matter what, they will be loved. Somehow, somewhere, sometime, they will touch someone this school year.  They will make an impact on someone’s heart and leave their stamp upon someone’s soul. They will be loved because they are love. 

I’m ready.
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God is good, all the time.

Thursday, July 14, 2016

For the Love of Summer


We’re smack in the middle of summer, enjoying warm sunshine and soaking up as much friend and family time as we can.  We kicked it off with Moise battling an upper respiratory infection that would not end.  Resistant to many antibiotics, the gunk in his lungs seemed to take up residence, causing violent coughing, increased heart rate, low blood oxygen levels and an uneasiness in the pit of my gut. Moise is incredibly resilient though, and after several rounds of medication and a fierce determination to keep him out of the hospital we finally beat it and he returned to his normal self.  Aside from that summer’s been fabulous.

Summer time challenges me.  Round the clock caregiving and a commitment to retaining all that Moise and Kruz learn throughout the school year keeps me on my toes and leaves little room for down time. Summer school is always an option but we’ve never opted for it because I am of the belief that as long as we can maintain learning and development here at home, these boys deserve a break in the same way that any other child does.  So we try to keep our calendar as free as possible, lower our expectations for what gets accomplished and try to take each moment as it comes, knowing that it’s only a season. The new school year will be here soon and then we can focus on what needs doing. 

We’ve settled into a summer routine, a basic necessity for keeping things running smooth and reducing levels of agitation and frustration where the boys are concerned.  I am so very grateful for the fact that both boys have taken to sleeping until around 8:30 most mornings.  This gives me a few hours to get in some much needed exercise and quiet time to prepare my body, mind and heart for the day. I’ve long ago determined that quiet, alone time is way under rated.  I think that I shall never again take it for granted.

Jade’s old bedroom, purple and lime walls and all, has been converted into a therapy room of sorts and it’s where we spend a large part of our mornings. We have two main summer time goals for Moise:  to keep his hamstrings from getting tighter than they already are, and to retain his knowledge of braille that we’ve worked so hard to gain. We typically accomplish both from his stander. The stander stretches out his hamstrings in a long, gentle stretch.  We try to have him standing for an hour each day, gradually increasing the stretch, and we work on his Braille, among other things, at the same time.  

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Our number one summer goal for Kruz is walking.  He’s so close.  My hope is to send him to school in August without his walker.  There are three things that keep him from taking off on his own:  balance, core strength and confidence. When we’re inside I take the walker away from him so that he can’t rely on it. We have exercises that we do for a few minutes at every diaper change to help with balance and strengthening. I’ve had to stretch my imagination a bit to build confidence.  I take a soft cloth and roll it up and then wrap it around his hand so that it’s like holding onto a hand.  As we walk, I gradually release my grip on the cloth so that it becomes slack and he’s walking with very little support.  It may be that he will need to walk around with a rolled up cloth in his hand for awhile but that won’t bother me in the least.  We also work on self feeding and other tasks that require functional use of his hands. This, admittedly, makes me feel like I’m banging my head against a wall. He vehemently resists any direction when it comes to using his hands.  We play with water and beans and touchy, feely things to convince him that he can do all the things his senses tell him he can’t. We also informally continue to work on speech.  There are no specific exercises set aside for this but all day long we sing and talk and play games with repetitive sounds. He has so many, many sounds that come from his mouth, if only he could form them into words. But words or no words….this boy can sing!!!   Kruz is so often content to play quietly and as he plays he hums. He hums so well and so on key that we can play name that tune. There is something about his singing that humbles me in the deepest places of my being.  What a beautifully pure image of joy in the face of hardships.  He faces so many challenges and yet he chooses to sing every chance he gets.  I want to be like that.

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On the health front,  we’ve been noticing a lot of redness and watering from Moise’s eyes.  Last week’s appointment with his eye doctors revealed increased pressure in both eyes and a lot of inflammation in the left.  While he never complains, the doctors say that he likely experiences a great deal of eye discomfort and, most likely, headaches.  We’re back to using steroid drops and hoping that they help.  They also informed me that there really is no point in continuing to purchase glasses for him as he’s not seeing out of them anyway.  Moise, being a creature of habit, is not crazy about going without them and I haven’t decided whether or not that’s a battle I wish to fight.

While much of my summer is dedicated to meeting the learning and growing needs of our two youngest, there are plenty of other things going on as well.

Business is busy. 

Jamee is working full time in radiation/oncology at the hospital and is settled into the adorable little home she purchased in March. She’s loving trying her hand with her own landscaping.

Grant often seems to be MIA as he works long hours as an almost engineer.  He’s currently on a three week backpacking adventure in the Canadian Rockies.  I’ll be glad when he’s home but also glad he’s taken the oppurtunity.  He is developed a love for photography and I can’t wait to see the pictures he takes.  I know they’ll be amazing and might have to post a few, even thought I can’t take credit for them.

Brock is working full time for our business and becoming increasingly skilled.

Jade is working full time at a local coffee shop and putting her baking talents to good use. She moved into her own sweet little apartment. She’s got a flare for decorating and that place has “Jade” stamped into every little detail.  She is young lady of many talents and they shine through nearly everything she puts her hand to.

We’re enjoying plenty of fun summer time activities as well. 

A sampling of some of the things we’re enjoying lately:

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Little boys keeping cool under the shade tree while mom gardens.  Moise’s forever love of water and Kruz’s slowly growing love for it.

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Popsicles and ice cream in many form and little brother who is always up in big brother’s business.

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Moise may not be able to see or hear when we’re out playing in the water but he does know a good treat when he tastes it.  Those eyes though. It hurts me every time I look at them.

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Lazy summer days on the boat

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Keeping cool and making memories with friends and family in the water.

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Adult children trying out their Christmas gift that they’ve been waiting for since December.  Mastering our newest water sport….. wake boarding.

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Dads teaching daughters to drive the boat.

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Pulling out jackets and pants and whatever we can find stashed in the camper to keep warm on chilly evening boat rides.

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Sunsets over the water that never, ever grow old. They whisper peace to me.

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The peace of a quiet boating community where we forget, for just a little while, that there are really awful things going on around this world.

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Quiet walks as a family.

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Daughters who are still willing to camp with us and make breakfast for all.  I’ve never really understood why meals are always better when we’re camping and they are better still when I’m not the cook.

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Cooking up dinner over an open fire.

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The Tremont Turkey Festival………Kruz tolerates it but doesn’t love it. It’s too loud, too many people, too much for his fragile senses to take in all at once.

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The Tremont Turkey Festival…….where all Moise’s dreams come true.

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Good friends who offer….and we accept…..to help get our young man on the rides.  It’s no small task but sometimes love requires hard things.

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The joy, the smiles on his face on this one night of the year.  There really are no words to describe it.  And the carnival workers?  They never cease to amaze me with their willingness to make it work for Moise.  They tend to get a bad rap but they truly appreciate Moise and his challenges and for that I adore them.  They bless him and he blesses them.  God’s amazing like that. 

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Walks through the carnival.  It’s the same each year: cotton candy, lemon shake ups, corn dogs and cheap trinkets you can win if you get sucked into the spirit of it all.

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Big boys who love their dad.

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Kruz’s fourth birthday.

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Sunday evenings spent in the yard…..playing badminton or football, relaxing and enjoying the new fire pit that Jim came home last week and announced he was making. 


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Evenings or weekends in the hammock

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Little boys who love their daddy.

Happy summer.  Make fabulous memories and enjoy today.  We never know what tomorrow will bring.

God is good, all the time.