Wednesday, October 29, 2014

All Together In One Place

It was a glorious fall weekend here in the midwest.   Autumn is always bittersweet as we bid farewell to summer and all that goes with it: swimming, boating, camping, cookouts shorts, sleeveless tops and bare feet. We pull out jackets, boots and mugs for hot drinks. I'm not necessarily sad to leave behind the hectic pace of summer.  Yet there is an ache that comes from knowing that another year is fast coming to an end. We are older, our children more mature, our faith deeper.  We have taken all that we can from the summer months.  We've basked in happiness and love and sweet togetherness and made memories to last for all of time.  And all those things.. the love, the togetherness...they continue on but the colors, the sounds, the tastes are different with each new season.

The weekend was packed with activity.

We started out on Friday with a trip to Chicago to visit a deaf/blind school with Moise.  I'll write more on that visit after my heart and mind have fully digested all that we observed.  For now, I'll leave you with the simple fact that, regardless of what went on within the walls, regardless of our opinions or decisions, outside it was wonderfully, colorfully fall.

By Friday evening both girls were home from college and my heart was comforted by their close proximity.  Even though they were out doing things with friends, I knew they were here, in our quiet little community with people who are familiar.  In my mind, here is where they are safest.

Saturday morning we hit the ground running.  We rushed off to watch Brock run in his regional cross country meet after a dense morning fog burned off, giving way to more glorious weather.

Our team wore headbands with Jeremiah 29:11 inscribed on them in honor of their coach's wife who is battling cancer.  Small gestures filled with love and compassion to cheer other's on in their trials, the world needs more of them. 

I love watching my boy run.
We made a mad dash home and quickly changed out of cross country meet clothes and into those more wedding appropriate.  Our nephew married his sweet heart.  She was beautiful and Jade and Grant were both in the wedding.  They were beautiful too.
Jade and my niece Dani,  also in the wedding. 

Grant and..... Dani again., because I didn't have a picture of  Jade and Grant together.
Sunday we made our annual trip to the apple farm.  Mother nature gave what I suspect will be the year's last big, happy smile upon us in the form of sunshine, crisp air and perfect temperature.  

I felt like a teenager again as I dashed behind the girls in a race through the corn maze. It's perfectly safe to assume their map reading skills were not inherited from me.  

Okay, so what I really did was take note of the very obvious  reality that I am no longer a teenager.  I'm not even in my 20's anymore.  I barely kept up but I'm giving myself a break because they're runners and they don't know how fast they are. 

We all loved on our Kruzy because somewhere along the way that seems to have become one of the things that we all do best.

We didn't bypass the animals, as we probably would have without him, because he is learning and growing. There's a whole big world out there to be explored and his exploring is just beginning.

 I missed Moise at this point, knowing he would have loved the feel of the goat's ears but we've tried the wheelchair in the corn maze once and he hated that.  The truth is, with the exception of the goat's ears he wouldn't have enjoyed the apple farm at all.  He likes familiarity and routine and terrain that doesn't make him feel off balance. I missed Laynee too because I know she would have loved the goats.  She was a lover of  all things living.

We breathed in corn and apples and pumpkins. Our feet crunched leaves and corn husks, creating the sound that can only be described as fall.  We sipped hot carmel cider and coffee and bought donuts and turnovers. I could have bought the entire store but I held back.

My family is growing up.  I love just sitting, listening to them talk.  They have big people conversations about big people topics and sometimes that just slays me.  There are significant others now and they are always welcome.  We love them too and delight in coming to know their personalities, their strengths. Alway keenly aware that this could possibly be a member of our family one day.  

We soaked up laughter and sunshine and all things fall.  I tucked this time of togetherness away in my heart because I knew that this was the last time we would all be together this season.  The girls would return to school, as they should.  And life goes on.

 We all will contine to become whoever we are becoming.

 I know that our days of being together in one place, at one time will become fewer and farther between. I accept that as the way it should be.  It's what we have raised our children to do. I know also that it is up to Jim and I, as head and heart of this family, to bring us all together.  It is up to us to find and point out the strengths and positive attributes of each individual family member. It is our job to foster love and appreciation for each one and any who may come in the future, in spite of whatever differences we may or may not have.

This picture makes me deliriously happy!!
This season, this fall, this day will never be again. But the joy continues.  Memories were made and they are cherished.

And in one last attempt to give fall the praise she deserves.  She greets us each morning in a way that can only be described as majestic.  She takes my breath away.

God is good, all the time. 

Wednesday, October 22, 2014

Until they don't

As mother of four "typical children" before I became mother to "special needs", I know what it means to take things for granted.  By "typical children," I mean children to whom learning comes at a pace similar to that of most of the children around them.  By "special needs" I mean......well.....children who do not learn at that same pace.   As parents, we expect that our children will reach each new milestone, rolling, sitting, crawling, walking, talking.  It seldom occurs to us that they won't.

Until they don't.

When we first took Moise into our home, thinking, at that time, that it was only temporary, we knew he had a serious congenital heart defect.  We didn't know the rest of his story.  We didn't know that a vicious virus was wreaking havoc with his body, or that he had significant brain damage, or that he had cerebral palsy, or that he was deaf.  But after we finally came through all of the surgeries and countless other crises he faced in the hospital, after we had him in our home for awhile, something began to nag at me.  He was nine months old and never moved his legs. I had never seen a baby that didn't kick it's legs all around.  He couldn't lift his own head.  He never made eye contact or turned to the sound of children's voices.  All those typical things that happened, almost without my notice, weren't happening with Moise. Suddenly we noticed those things, or lack thereof.  As he grew, the list of things that he didn't do on time, or that he will never do, got longer and longer.

With Jalayne we knew before we ever laid eyes on her that she had Down Syndrome and that new things would come more slowly for her.  But her progress was steady and we hardly noticed her delays.  Her bigger than life personality made it difficult to feel like she lagged behind other children her age.  Whatever she lacked in development, she made up for in joy and happiness.  She walked at twenty one months and I had little doubt that she would talk one day soon.  But she didn't.

 Kruz came into our lives with a genetic disorder so rare that no one could even take a guess at what we might expect for his future.  Everything comes slow for Kruz and there seem to be some developmental stepping stones that he completely skips over.  We don't dwell on the things he doesn't do, but when we go out, when he's around other children, his delays are glaringly obvious.

 People frequently ask "do you think he will ever walk? Will he be able to talk?"   My heart wants to say "of course he will."  It was never a question with our first four children.  We never, not once, considered that they might not walk or talk. When we were together with other parents, we didn't think to ask of their children "will she walk?" but rather "is she walking?"

 We never thought about the little things our children naturally did.  Things like grasping a rattle at just a few months old,  putting objects in their mouth, banging blocks together, clapping their hands in delight, taking off their socks, turning the pages of a book.  These things are so simple, so normal, so expected that we hardly notice that our children are doing them. Until they don't.

  Now I know.   After the agonizing journey of watching my children work so hard to do the simplest of things, I am keenly aware that sometimes they don't. I know that sometimes they never talk. Some children never walk.

 All of the things that our children learn to do as they grow are gifts.  They are priceless, immeasurable gifts to be cherished. But we don't know it. Until they don't.

God is good, all the time.

Sunday, October 12, 2014

2 Years Later

Two years ago,  October 11, 2013, is forever marked in my memory as one of the worst days of my life.  The day before, our sweet baby Kruz underwent a large surgery on his stomach and intestines. The surgery was expected to be fairly routine.  In fact, Moise had had a very similar surgery when he was 15 months old.  I knew many, many children who had the Gtube placement and Nissan procedure. Kruz had an extra procedure included as his ileostomy, a result of a perforated bowel at birth, would be reversed.  Still, the surgery was expected to be uneventful.  But I left the hospital that evening after the surgery with an uneasy feeling in my gut.  The baby's pain seemed out of control, his breathing was more like panting, his body very swollen, his dark skin ashen. 

The next morning I went to work, anxious for the end of the day so I could go back to the hospital to be with him.  I had called the hospital several times during the night and knew that he was not resting comfortably as his body so desperately needed.  At noon, my cell phone rang and I answered to the voice of the pediatric ICU doctor asking me to come quickly. 

 "Kruz is not doing well," she said.  "His hemoglobin and platelet levels are critically low and dropping." She explained that they needed to intubate him to help him breathe and they needed signed consents.  "I'm not sure we can wait until you get here to sign," she said.  "He needs the vent now. If you will give us verbal consent we will go ahead and intubate."  I consented and, with the help of a dear friend, headed straight to the hospital.

My head swam with the enormity of what was happening. I felt like I was walking through a fog as I walked into the hospital.  Just days before, it was Jim and I and our five living children in our home.  Another child was not in our plan. Now I was praying fervently for the life of a dear child that had a hold on my heart. 
A team of doctors stood around his little isolette when I walked into his room.  Machines surrounded him with countless tubes and wires protruding from his tiny little body. Beeping monitors and the whooshing sound of the ventilator brought a sense of deja vu.  I'd done this before, with Moise and with Laynee, and it felt surreal that I was here, doing this fight for life thing all over again. Regardless of how familiar this scene may be, nothing can fully prepare us for seeing a child we love lying in that bed. I wanted to turn around and run.  I hated this hospital scene and I willed my quaking legs to support me. 

The swelling in his body was alarming.  His distended abdomen looked like it could pop.  I didn't even know that it was possible to be alive with a body temperature as low as his was. I suspected that his being alive was due only to the blinking machines. But the one thing that bothered me the most was his obvious distress.  In spite of the sedation meds, his body twitched and jerked in discomfort.  One of the doctors explained that they had gone as high as they could on the ventilator settings but the excessive fluid in his belly was pushing up on his diaphragm, leaving no room for his lungs to expand with life sustaining air.

That afternoon and evening, Jim and I, along with Kruz's birthparents, paced and prayed in the waiting room for 6 hours while the doctors worked on him. The events of Laynee's accident played over and over in my mind as we waited. The pain was still so raw.  I wondered how and why this was happening to us again.

 I don't know what they did during those 6 hours.  I never asked.  I didn't need or even care to know.  He was alive, the vent was doing it's job and he seemed to rest more peacefully.  In that moment, nothing else mattered.

The next several days were precarious.  Due to his bleeding disorder,  Kruz was in a cycle of bleeding, which required more blood products, which caused excessive fluid build up, which put strain on his heart and lungs.  And on and on and on it went.  

But we witnessed the miracle of modern medicine and felt the miracle of love growing in our hearts. A month later we brought him home from the hospital. 

And he brought healing to our hearts that ached from child loss. 

We didn't know we needed him.  But God knew.  
Now, 2 years later, we rejoice in every new milestone our little warrior meets.  
We are strengthened by his perseverance and awed by his resilience.
  And we thank our great and mighty God for the miracle of life.  

"Lord heal me, and I will truly be healed.  Save me, and I will truly be saved. You are the one I praise."
Jeremiah 17:14

God is good, all the time. 

Wednesday, October 1, 2014

It'll Be Alright

"It feels like it's never going to be alright again!!" those were the vehement words of 13 year old Jade as she sat, head on her crossed arms, perched upon our kitchen bar stools. We had just returned home from Laynee's visitation, where we received the sympathy and condolences of hundreds of friends, family and co workers. There we witnessed the ache and sorrow that her death had left within the hearts of so very many people.

I don't know how Jim and I responded to her statement. I know we cried. I know we held her close.  I suspect we probably offered platitudes of how we would get through this, how we would be okay someday, how we were strong and we had each other, and blah, blah, blah. We were, after all, her parents.  It was our job to see her and her siblings through the horror that was now our life. But in truth, Jade was exactly, 100% correct.  She, being 13, didn't have to guard her words.  She didn't need to be tactful or gracious or worry about offending someone in her grief. She could be ever so real and speak the truth of whatever filled her heart and mind.

Regardless of whatever words of comfort we offered her.  I, myself, felt like "it's never going to be alright again."  I had no idea how we were going to survive.  How were we going to face the next hour, much less the rest of our life, without our baby girl?  I barely knew how to breathe and yet, somehow, Jim and I had to be okay, we had to make sure our children were okay.

As time went on, I began to wonder what being "alright" looked like.  We got out of bed each day.  We put one foot in front of another, took one breath at a time, stood against each wave of pain that came.  Did that mean we were "alright?"  Did the fact that we functioned and performed whatever menial tasks were put before us indicate being "alright?"  Or was it when we could actually make it through one day without an onslaught of fresh tears and wailing agony? Maybe "alright" came after the proverbial one year mark when most assumed the hurt would diminish. Did it mean I was "alright" when I no longer needed to visit her burial spot every single day?

Laynee's First Birthday, January 30, 2008

It wasn't okay that our Laynee had died.  I once had someone ask me, "what would it take for you to be okay with the fact that your daughter is in heaven?"  I thought long and hard before answering. "Heaven.  It'll be okay that she's in heaven when I'm in heaven too. Until then, I will carry on but that will never be okay." Today, five years later, the answer remains the same. It's not okay that Laynee is gone from this earth, but it will be someday.

And the rest of it......the living.......the going on with life in spite of the unthinkable?'s alright.  We're alright.  Being alright looks dramatically different than it did before.  There's a piece of our heart missing that will never be replaced.  Being alright doesn't mean that it doesn't hurt or that we are "over it."  It doesn't mean that the dark memories never threaten to overwhelm us or that the pain never drives us to our knees. It doesn't mean that we have ceased to ask "why? Why would God take our precious child?" It doesn't mean that we go one single day without missing her.

It means that we are stronger, our shoulders broader, our hearts softer. We are different, for sure, but it's "alright."

St. Petersburg, FL--November, 2008
We're going to see our Laynee again someday.  And because we know that.
Because we know that we know that we know that.....
It'll be alright

God is good, all the time.