Friday, January 30, 2015

Birthdays, Living and Cataracts

I always think that January is going to be a nice, slow post holiday preformance, but it never is.  Routine hovers somewhere just beyond grasp. I reach for it, I want it, but there's always something that pushes it away.   February is closing in and I'm still wondering where January went, still trying to find routine.

January is birthday mania around here.  Moise kicks it off in late December, followed by Jade on the sixth, Grant and Brock on the 20th and today is sweet Laynee's special day.  No, the boy's birthday is not a typo.  They were born on the same day, four years apart.  Almost without fail, when I fill out documents for insurance or taxes or whoever else needs to know all the details of the family, someone will say, "I think you made a mistake on the birthdates.  You listed two boys with the same date."  And always, because birthdates usually don't change, I say, "No mistake.  They share a birthday."

We celebrated birthdays simple style.  Favorite meals, cake or, in Jade's case, a big cookie, a few gifts, breakfast out and waa laa.......birthday month is done.  Everyone is older and more grown up. Jade decided that 19 isn't all that exciting.  Suddenly I have a 21 year old son that was born, just yesterday, I think.  And 17?  17 is so old when it's the last baby that came from your womb.  That same baby has a job now and he had to work the evening of his birthday.  I'm fairly certain this bothered me a whole lot more than it bothered him.

I visited Laynee's grave today.  I cleaned up leaves and debris that had been blown in by winter's winds.  Her grave is adorned with purples and pinks and all things girl.  I stood there for a long time, just looking. Disbelieving.  Six times we've celebrated her birthday without her. My heart can't fully grasp this. I made a cake and Jim lit her "8" candle.  A lump formed in my throat because there was no one there to blow it out.  No one to lick the frosting off of the bottom of the candle. I can't help wondering, are there birthday cakes in heaven?  Are there even birthdays in heaven?

I miss my girl. I miss her so much.  But we're going on.  We're pausing for a time, feeling the pain.  Touching it. Breathing it. Allowing it to be exactly what it is, deep and raw and old and fresh.  And then we're going on with living.  We're not staying stuck in that grief, that wretched pain.  Because she is with God and God is with us and he still has work for us to do here.

"The tragedy of life is not death, but what we let die inside of us while we live." -Norman Cousin

Aside from birthdays, January has been eaten up by living.  Normal, plain old, regular living.  Good days and not so good days.  Appointments and meetings and grocery shopping and cooking and cleaning and playing. And taxes.  January loses it's appeal quickly when we start thinking taxes.  It seems we always have people coming and going from our house.  Jamee went and then Jade went and all the guys come in and out and in and out.  I can't keep track of schedules anymore.  They overload my brain.

Today Moise had, what I thought would be, the final surgery on his eyes.  His team of doctors decided awhile back the cataracts that formed as a result of all the trauma to his eyes needed to be removed.  We arrived at the hospital before sunrise.  You know you spend way too much time in a hospital when everyone, from those in admitting to those in the OR, knows you on a first name basis and you hear "hey, Moise is back" as you walk down the corridors.  Let's just say things didn't exactly go as planned.  The right eye went great.  Cataract gone.  New lens installed.  But that left eye of his!!!  Doctor decided he could not safely remove the cataract without causing further damage.  Apparently the lens needs to have some clarity in order to see well enough to perform the very precise procedure of cataract removal.  Moise's lens was so cloudy that light could not penetrate enough to dilate the pupil.  If I understand correctly there was a very high likelihood that, without being able to see through the lens, the cataract or fragments of the cataract would be "dropped" to the back of the eye.  This would cause devastating and irrevocable damage.  So....... the cataract remains. The clouded lens remains.  The saga continues.  Next up?   Corneal transplant. Doctor mentioned as a potentially viable option for the first time today.  The very thought scares me and I don't know enough about it to elaborate any more on that subject, so I won't.  But I was under the impression that we will soon be referred to a corneal transplant specialist.  At least that left eye keeps life interesting.  Because we wouldn't want things to be dull or routine now would we?

We've had bitter cold days and some very nice days this month.  We snuggle in for the cold ones and head out for the nice ones.  We're braving the winter, like we always do.  It's just a season. It will pass.  And just like that, Janauary is done.  Life is good and hard and painful and beautiful and God.... he's right there through it all.

Some of January's sweetest real life moments..........

Lots of warm sweetness on cold winter nights. 
Kruz is making huge strides in speech and occupational therapy.  This is his speech pathologist, Sarah.

We brave the cold as often as we can, even if it's just a walk to the mailbox.  Fresh air goes a long way toward making his days go better. 

Surgery day for Kruzer.  His eyes no longer drift outward like in this picture.  


I may or may not put things out of his reach so he has to stand up to get them. 
Play dates with the littles.  Kruz adores them. 
A road trip to watch Jamee race.  She's wrapping up her last season of racing.  Craziness. 

This little boy did not want to see his big sissy go back to college. 

Kruz is so very intrigued by his brother.  Their interactions melt my heart.  
God is good, all the time.

Friday, January 23, 2015


And we wept that one so lovely should have a life so brief, 
--William Cullen Bryant
Today marks the date that Kruz is exactly as old as Laynee was the day that she was taken from us.  2 years, 7 months and 7 days.  It's unfathomable.  Even though I have lived through that pain once, my mind simply cannot wrap around the thought of having to say "good bye" to this, my youngest child.

So many times since Laynee's accident I have said "one more day.  If I could just have one more day with her. "  But last night as I tucked Kruz into bed, I held him a little while longer, planted a few more kisses and I knew.  I knew that just one more day would never be enough. I want a lifetime with him, just as I wanted a lifetime with her.

Tomorrow, if God allows it, I will lift Kruz from his bed and he will be older than Laynee ever lived to be.  Jim and I will never again be able to look at him and remember when Laynee was that age.  We will never be able to look back at growth charts and compare them by size.

I can't really explain it but there is something about this reality that hurts.  It's another door slamming shut on that beautiful, but ever so painful, chapter of our life.

 There's a Laynee shaped hole in my heart.   Like Laynee, the hole is bigger than life, so big that I wonder how it is that my heart continues to beat.
Laynee's last photo
2 years, 7 months, 7 days
God is good, all the time.

Saturday, January 17, 2015

Menial Important

If someone were to ask me "what's your least favorite thing about parenting special needs children?" my answer would be immediate. 


Sometimes I feel as though appointments consume my life. Medical appointments or procedures. School appointments.  Therapy appointments. There's rarely a week that passes without at least one or five or umpteen appointments.    They're always inconvenient, rarely enjoyable and suck up an exorbitant amount of my time.  Expected appointments are bad. Unexpected are worse.  I'm ashamed to say that I've been known to complain, at times, about the endless need for appointments. 

As parents, most of us enter into that phase of life called "I'm the chaffeur."  If we have one or two or more pre-license teens we often find our afternoons and sometimes Saturdays driving hither and yon.  One has ball practice. Another has violin lessons. There are student council meetings and church activities and, just when we think we can't squeeze another thing in,  we make room for the orthodontist too. It's exhausting, but usually fun and more than a little exciting to watch them grow up.  We cling with all our might to what we know is true...."it's a phase of life and someday we'll wish they still needed us like that."

On so many days, as I run from this appointment to that appointment, I feel like that chauffeur and it's not just a phase.  They're always going to need me like that.  They're always going to have medical needs and the bigger their bodies grow, the older my body grows and the more difficult it becomes.

 I can't let my mind take me to forever and them getting bigger and me getting older, because it scares me and overwhelms me and makes me want to pull the covers over my head.  God didn't ask me to do forever all at once.  He just wants me to do right now and He'll take care of the rest.  I'll chaffeur to this appointment today and worry about tomorrow when tomorrow comes. 

I am guilty, at times, of viewing my chauffeur role as a menial, thankless, waste of time.  As my son, Grant, often says, "I can never get that time back."  Appointments, even though they are a regular part of our life, disrupt normal.  They eliminate the luxury of staying in grubby-we're-not -going-anywhere clothes all day.  When you total up dressing time, driving time, appointment time and driving back home time, the day is half over.  And the I wish I had a dollar for every hour I spend sitting in waiting rooms or entertaining not so patient children in a 10X10 room.  It's not my imagination that the waiting has gotten dramatically longer since we first started all this fourteen year's ago.  And Obamacare has made the waiting exceedingly worse.

This week has been chock-full of appointments and in the midst of them God has given me a reality check on my woe is me attitude about being "just a chauffeur."  As much I don't like appointments, I can't deny the fact that these two little boys impact lives during them.  While some tell me about how God has touched them through Moise and Kruz, I know that there are countless stories that I know nothing about.

Yesterday I spent the day at the hospital while Kruz had two procedures done in the OR.  Following the surgery, one of the surgeons informed me that I needed to have Kruz at his office by 7:45.  This was not figured into my agenda for today and I felt that old familiar irritation rise up in me.  But this morning I dragged Kruz's little body, still tender from surgery, out of bed early and headed out the door.  The wait was long and I was growing impatient.  One of the office employees stopped to talk to us in the waiting room. She gushed over Kruz and then asked "how is Moise?"  She knows of all Moise's struggles and always seems to take a special interest in both boys.  As she was leaving she told me that she thinks of my boys all the time.  "Sometimes I think my life is hard," she said with glistening eyes.  "But then I think of Moise and how brave he is and it helps my day go better."

 And it hit me right in the Solar Plexus.   Menial? Thankless? A waste of time?  These two little boys of ours tell of Jesus and grace and peace in bigger and better ways than I could ever hope to do.  All of the appointments aren't just medical in nature, sometimes they're divine.  So often God uses them to speak, without words, to someone who needs to hear his voice.  Could it be that my most unpleasant task of chauffeuring is really one of the most important that God has ever asked of me?

Yet who knows whether you have come into the kingdom for such a time as this? Esther 4:14

What's your menial important task?

God is good, all the time.

Thursday, January 8, 2015

Beautiful Different

This morning I had an interaction with a woman I had never met before.  Our conversation was brief and very surface level but she spoke one sentence that prompted deep thoughts for the rest of the day.

Kruz is scheduled for surgery next Wednesday.  It's actually two surgeries, by two different surgeons, but they are both willing to go into the operating room at the same time to eliminate Kruz's need for two rounds of anesthesia.   Both procedures are routine but Kruz and his bleeding disorder like to add a special twist to even the simplest procedures.  In preparation, I loaded him into the car this morning in bitterly cold, sub zero temperatures and headed to the hospital for blood tests so his hematologist can determine how best to keep his bleeding from getting out of control.

The woman who drew his blood was older and very comfortable asking questions that, quite frankly, were none of her business.  But she was kind and I understand the need for small talk so I didn't take offense.

"Are you fostering or are you going to adopt him?" she asked.

Given that Kruz and I have the same last name, she was clearly basing her assumption on the contrast between our skin colors.

"We've already adopted him.  He came to us when he was five months old," I answered.

She proceeded to volley questions at me as she drew his blood ......"Where's he from?"  "Does he see his birth mother?"  "Do you have other children?"  I answered briefly but respectfully.

As we were getting ready to leave, she handed him a little stuffed dog and said,  "Good for you for adopting a child with special needs."

I never really know how to resond to a statement like that so I thanked her and left.  As I walked through the long hospital corridors, her last sentence nagged at me.  I replayed the entire brief interaction over in my mind.  I never mentioned to her that he was special needs.  I never put him on the floor so she didn't know that he can't walk.  He didn't talk to her, but after 20 plus years of drawing blood, I am fully aware that most two years don't talk to the person about to put a needle in their arm.  Nothing that he did would have indicated he has special needs. He just sat there quietly on my lap.  She must have known he was special needs just by looking at him. Something about this knowledge twisted in my gut.

When I look at Kruz I don't see special needs.  I see my son.

I know that his eyes drift out.  I know that the tops of his ears grow into his head and the bridge of his nose is flat.  I know that his head is a bit misshapen and his fingers are slightly deformed.  I know all these things but when I look at him I don't see all that.  I see a beautiful, happy little boy who melts my heart with his smile.

It's never really occurred to me that others see special needs just by looking at him. It doesn't matter to me in the least what others see.  But what does matter to me is how he will one day see himself.

Moise's facial features are such that, were it not for his physical disablities and his actions, the average person would not know he is different.  Laynee had the typical Down Syndrome features.....  almond eyes, thicker tongue, floppy ears, flat shaped head.  Most people knew instantly that she was sporting an extra chromosome.  Sometimes, upon meeting her, people would uncomfortably ask "Is she...?"  "Does she.......?"   and I would help them out by saying "... have Down Sydrome? Yes.  She does."  And it never hurt my heart to know that people could see that she was different.

Moise has no concept of the fact that he is different from other kids.  He doesn't know that other kids can do so many things that he will never be able to do.  And I am grateful. Being different is hard enough, but to know that you are different would be infinitely harder.

I always knew that someday Laynee would probably know that she was different but I knew also that it would be okay.  We fully intended to explain to her that she has Down Syndrome.  I envisioned taking her to outings and benefits populated by children and adults with Down Syndrome.  We would point them out and say, "look at her, isn't she beautiful?  She has Down Syndrome.  She's special just like you."  We would have made sure that she had friends who were just like her.  We would have taught her to be proud of her diagnosis.

Lately I have noticed that Kruz seems to be aware of the fact that Moise is different.  Sometimes he sits and stares at Moise as if he is trying hard to figure him out.  I suspect he wonders why in the world this boy doesn't pick him up like everyone else does. Why won't this big boy get down out of that chair and play with me? Kruz is moderately enamored with Moise's wheelchair and plays on the spokes of the wheels like an annoying harp. When we take Moise to the bathroom, Kruz crawls right behind us and tries to get all up in Moise's business.  Moise, on the other hand has no idea that Kruz is different.  He only knows that this little person annoys him like none other (except his little sister.  Laynee was relentless in her quest to antagonize Moise.)

If Kruz senses that Moise is different, is it only a matter of time before he realizes that he, himself, is different?  Will children tell him that he has funny ears?  Will they ask him what happened to his fingers?  Will they call him names?  Will they say he's wierd or ugly or odd?  And more importantly, will he know enough to realize that these things being said are terribly cruel?

Kruz's diagnosis is incredibly rare.  We won't be able to take him to the neighboring town to meet up with other little one's with his syndrome.  We won't be able to point out a super cool young man with Jacobsen's Syndrome and Partial Trisomy 9 and say "See him?  Isn't he the best?  He is special just like you?"

And this is why I cannot look too far into the future.   All of these painful things may happen, but they're not happening now.  Right now Kruz is very aware of the most important thing --- that his mommy and daddy love him more than words could ever say.  The love is there in every touch, every kiss, every therapy session, every doctor's appointment, every blood draw.  That love will be there on all of the best days and the worst days and the very cruel days.  We will build him up and pray that someday, when he knows he is different, we will have taught him that his different is a beautiful different.
God is good, all the time.

Wednesday, January 7, 2015

Changes for Life

I love the first days of a new year,  even though I know that we're really only days away from yesteryear.  As with birthdays, the "new year" is really just a formality.   I don't feel older or more mature or different in any way.  But there's something about a crisp calendar, void of scribbled notes and dates in various colors of ink, that energizes me.
I'm not a resolution maker.  I haven't pulled out the dumb bells or paid membership at the gym. I haven't even laced up my running shoes much since the temperatures have been bitterly cold. Staying in shape is important to me so I'm not too concerned that I'll turn into a sluggard.  I'm probably not going to be any more organized this year than I was before because, while orginazation is good, it's not earth shatteringly good.  I've no intention of going gluten free. Gluten doesn't bother me in the least, and there's no way I'm giving up my desserts and even less chance I'll do away with carmel vanilla latte's.  But, while I haven't set a New Year's resolution, in the traditional sense, I do look at the uncluttered calendar as a new beginning.  It motivates and inspires me to become better in so many areas.

"Not that I have already obtained all this, or have arrived at my goal, but I press on to take hold of that for that which Christ Jesus has taken hold of me" Philippians 3:12

With each year I become more I appreciative of the old adage "we're never to old to learn."  In fact, I think the learning is more substantial now than it has ever been before.  I'm not pouring over the school stuff like literature or math or chemistry equations and I haven't taken a written test in a long while.  It's the life stuff that I'm learning now, things like: fingerprints on the window are truly beautiful and relationships matter and I need positive people in my life.  I'm still being tested but it's over the big things, grown up things.  And the big things teach me not to sweat the small stuff.

Recently, my small bible study group has been focusing on "Hospitality : God's Call To Compassion." What we have found is that hospitality, in the scriptural sense, looks very different than how we imagined it to look.  It's not about opening our doors but opening our hearts.  It's about seeing the needs of those around us, the unlovely, the hurting, the broken and meeting them right where they are.

That's what I most want this year.  I want a life style change and I want it to be about people and relationships.  I want my eyes to be opened, my ears tuned in to those who are hurting.  I want to love more and worry less.  I want to guard my tongue and not judge and remember, always, that I can't see the scars on another person's heart.  I want to love my husband and my children more completely.   I want to step outside of my confort zone for others.  I want to be stretched (but not too much).  I want to heal a little more from past hurts and I want to forgive more. But I don't want to forget because the remembering gives me more compassion.

I know that I can't do all this learning and changing by myself and I can't do it in just one year.  It will take the rest of my lifetime.   It will take help from my creator and it starts with knowing Him better and loving Him more. 

And here's one of the most beautiful scenes of 2015 so far.
I want to notice more sunsets.

Here's to making changes for life.

God is good, all the time.

Thursday, January 1, 2015

The Very Best of 2014

One year is gone and another has begun.  

Last night we ushered in 2015 with a few of our closest friends. Today, in the very beginning hours of a new year, our home is peacefully quiet.   I find myself in reflection, looking back at where this year has taken us and wondering, for just a moment, where 2015 will lead.  I don't linger long in the wondering for I know that it's futile.  None of us has a crystal ball and I'm glad.  I've learned over the years that life would look much too big if we could see into the future.  

2014 was a quiet year, otherwise known as a year void of major crisis or monumental loss. For this I am thankful.  Quiet is so very good.  We had a lot of beautiful and some very exciting.  We made new relationships and said goodbye to some.  Relationships can be funny like that.  People come into our lives and then go so quickly.  Their here, a part of our lives, for such a very short time and we almost wonder "what was that all about?"  Yet we know that they came for a reason.  They were a part of our learning and growing and, no matter how quickly they came and went, they are a part of who we will be.  

I spent this first morning of the year scrolling through files of photos that we've taken.  I love photos.  My camera and I make people crazy sometimes but I've never taken a picture that I've regretted.  The photos speak.  True illustrations of this particular chapter in our story.  They tell of relaxation, peace and exciting milestones.  They tell of growing up, maturing, aging.  We use a different word for different parts of life but it all means the same, that time is marching on and we....all of us..... the very young and the very old and everyone in between..... are marching right along with it. 

This year brought so much happiness. I know that there were also some hard days,  some tear filled days (I may have even had one of those last week) but I can hardly remember them because, at least for now, the happy is so much bigger than the sad.

Here's a look at some of my very favorites of 2014

































The new year feels so fresh, so unblemished.  I'm so excited to see what it brings.

Happy New Year!!!

God is good, all the time.