Something Extra Special

"Your child has Down Syndrome."  I'm told that those are devastating words to hear. They snatch air from lungs and turn near perfect worlds upside down.  They send mother's and father's into a spiral of sorrow and heartache.  They shatter dreams for a child long awaited.

Although Jim and I have the awesome privilege of parenting a child with Down Syndrome, we have never heard those words or known the heartache they can bring.  For us it went more like this:

A call from our social worker came one cold February afternoon.  "There's a three day old baby girl in the hospital that needs a family right away," she said.   "Her mother surrendered her parental rights right after delivery.  She's a delightful little girl but here's the thing.....she has Down Syndrome and a significant heart defect."  After a period of dead silence, she added,  "You've done special needs and heart defects before so I think you could do this. Will you take her?"

We weren't sure we could be her family.  We already had five children.  Number five was severely disabled. The last thing we needed was another baby and certainly not one with Down Syndrome. 

Then we met her.  The nurse gently placed her in my arms.  I noticed the low set ears,  the flat features of her face. I traced my finger along the tiny simian crease of her hand. She opened her eyes; beautiful, wide set, almond shaped eyes, and looked at me.   Tears ran from my own eyes and my heart puddled around me.  Her heart, imperfect as it was, seemed to speak to my own. "I need you.  And you need me," it said.  Already, she had changed my life.  A voice in my ear said, "Love my child.  She is my gift to you.  Love her."

And we did.  We took her home, adopted her, became her family.  We loved her so much that sometimes it hurt.  We hadn't known that we needed her but we did.  We needed her to teach us about love in it's purest and simplest form.  We needed the joy and peace that she exuded.  We needed her smile, her laughter, her enthusiasm.  We needed her, all of her, everything about her.

Down Syndrome crushed our hearts.  Not because it came into our lives but because it was taken from us far too soon, long before we were ready.  She came to us quickly and unexpectedly and she left us in the same way.  There are those who think that we have been "spared" the challenges of raising a child with Down Syndrome to adulthood.  But we would gladly have faced every single one of those challenges with her.  

I know that when families learn that their child has Down Syndrome their world stands still for a time.  I get it.  I understand it.  I would never trivialize it. They are suddenly thrust into a frightening world of unknowns. This child will not be what they thought he would be.  Their hopes, dreams, expectations are unequivocally altered and all of the should have's must be mourned and grieved to make room for what will be. But soon they will know.  When the veil of sadness begins to lift they will know that they have been given a gift most precious.

Nearly a year ago my twenty year old son, Grant, was baptized.  Before baptism he publicly shared a testimony of his faith.  As part of his testimony he told of the dramatic impact that our three adoptions have had on his life and his faith.  He spoke of Laynee, her life and her death.  There is not a single member of our family who can discuss our faith without mention of Laynee.  She was a building block of faith for all of us.  Grant told of his struggle when Laynee passed away.  He said, "I couldn't understand why God would take away the one thing I loved most in all the world."

 Grant was well acquainted with the challenges of Down Syndrome, he lived them for 2.5 years. He knew that his baby sister was different than other children her age, that development came a little more slowly for her.  A twenty year old young man, born and raised in the "me first-it's all about me" generation.  He's on his way to becoming an engineer. He likes shiny cars and fast motorcycles. He knows great beauty when he sees it. He hunts and is well acquainted with guns and bow and arrows.  He has grown up in a world of technology, where instant everything is at his fingertips.  He's strong and healthy and active and can do and have just about anything he puts his mind to do.  He practically has the whole world by it's tail.  But the one thing he loved most in all the world was a little bitty girl with Down Syndrome.

I wish every parent whose heart is broken by "your child has Down Syndrome" would know what Grant knows. That an extra 21st chromosome is something extra special.

God is good, all the time.

A Place for Moise

In late October Jim and I took Moise to visit the deaf/blind school near Chicago. The anticipation of this visit evoked myriad emotions in me.  I wanted to be objective, to see the school with my mind and not just with my mother heart.  My friend, Joyce, went with us as a special needs educator, as one who knows Moise very well, as one who knows my heart and knows well the struggles that we face on a daily basis, as one who could be more objective than I.

I've visited a lot of schools over the years and it's always been a source of great stress for us.   Moise's education needs are very simple and yet very complex. Together with our school district's special education coordinator, his teachers, and therapists, we have reevaluated his school placement each year to determine what is best for him.  It's a team effort in which everyone's voice is heard. We started, when he was three, with a school specifically for children with cognitive disablities.  The school was wonderful but they were ineffective in meeting his hearing impairment needs.  We then moved him to a school for the hearing impaired.  His first year there was amazing.  But then his two teachers, who had been deaf educators for many, many years retired and two new, fresh out of college teachers took their place. What once seemed like a dream, quickly became a nightmare. I am sure that these two young women were wonderful deaf educators but they had little tolerance for Moise's other disabilities. They were idealistic, wanting to teach deaf children who learned several new signs a week and would soon be fluent in sign language. That wasn't going to happen with Moise.  We had come to a place where it seemed there just wasn't an appropriate school out there that could meet all of Moise's educational needs.

Up until this point, it had never even occurred to me that Moise could go to school in our home district, where our other children attended.  But our sp.ed coordinator, fully aware of the situation we had faced, said "I don't see any reason we can't teach him here, at our school."  It was unprecedented. Our small community does not have large special needs population and no one as complex as Moise, and certainly not a deaf child, had ever been taught there.  But it was worth a shot. At the start of the new year, Moise was assigned a one on one aide and he started early childhood right down the hall from Brock.  It was fabulous.  Moise blossomed. Together, he and his aide, his beloved O'Keefe learned sign together, one word at a time. He learned his shapes and colors and eventually learned basic math and reading. Each year we would reevaluate and each year we came back to our school. As he got older a simple "life skills" program was developed and several other children benefitted along side of him.  O'keefe stayed with him until he transferred to the middle school and she stayed in elementary.

There have been a few, very few, over the years who have had a problem with Moise being mainstreamed into a typical school.  Those who think "he doesn't belong."  But, while that attitude causes the she bear in me to rise up, I remember that they don't know.  They are ignorant of the great deal of effort, the meetings, the discussion between our family and the school that goes into finding the best place for him.  They don't know that Moise is not just cut from a mold designated for children with challenges. They are oblivious to the fact that his being deaf and now blind make it almost impossible to find a perfect fit for him.  They are clueless to the fact that in developing "life skills" programs in our school, we pave the way for others who come after him and keeping children in our district is ultimately cost saving.

Last spring we contacted the deaf/blind school near Chicago, seeking guidance on how to teach him and give him back some of his independence without his vision.  The consultant from the school has visited us several times and has given Jim and I, as well as the professionals at the school, excellent recommendations which we are slowly implementing into his daily life.  She also shared with us that the school is residential.  Moise could live there if we chose that option. And she told us that we would be amazed at what he could learn to do in a deaf/blind environment.  From that point on, our hearts have been in turmoil.

From the day that we learned of Moise's disablities, we have had one goal.......to help him reach his greatest potential. We've tried to never limit what he can do in spite of his challenges.  Learning comes slowly, sometimes painfully for him.  But like the rest of us, there is no end to what he can learn.  We have always, regardless of how difficult or inconvenient or painful it might be, tried to do what is best for him.  And in so doing we have been repeatedly amazed.  There are so many things that we never thought he would do but he did them anyway.

Suddenly with the knowledge that there is a deaf/blind school near Chicago, a school that reportedly could "do wonders" for him,  we struggled to know and understand what truly is best for him.  Could it really be that "doing what's best' meant sending him away to live?  We never doubted for a second that the school could do wonderful things for him.  They are professionals.  Teaching deaf/blind is what they do.  But this time helping him reach his greatest potential would come at a very great cost.  The love and nurturing of mother and father and family would be sacrificed in doing "what's best."

I would be a liar if I were to say that we never gave thought to how much a residential placement would simplify our lives.  We thought of it alot.  It would solve so many problems for us.  It would give some semblance of "normal" to our every day life.  The constant issue of "who's going to stay with Moise" would become obsolete.  The ever present physical strain on our bodies would end.  The endless appointments to doctors and therapists would no longer be our concern as they have doctors and therapists right there at the school.   Jim and I could actually go to church together.  We could go to dinner without worrying if Moise will grow weary of waiting and attempt to throw everything off the table.  Jim and I could enjoy time together without the astronomical cost of a specialized care giver.  We could not deny that the ways in which this school would make our lives much easier were endless.

In early September Jim and I had an experience that left us feeling broken and weary.  I came to a place of  "I can...not...do.... this anymore."  The strain of 24 hour caregiving felt like it was sucking the life from me. The timing of this particular experience had me considering that maybe a residential placement would be best.

I lost countless nights of sleep agonizing over this. My heart writhed at the thought of taking him and leaving him somewhere, knowing we probably wouldn't see him more than once a month.  They would teach him well. But they probably wouldn't make sure his clothes match, his shoes are clean, his nails clipped. They wouldn't spray a little cologne on him before school each day or let him wear button shirts, even though they are a pain sometimes, because they make him feel proud.    They wouldn't massage his arms and legs with lotion after every shower.  They wouldn't lie next to him at night and watch the moon light on the wall or sing the Bumble Bee song just because it makes him smile. They wouldn't tuck him in and tell him they love him every night or kiss his cheeks and forehead, chin and nose.  They wouldn't pray with him every single morning.  The school would be great.  I know that. But they wouldn't be his parents.  They could never love him like we do. They could give him a lot but not the things that matter most.

On that beautiful October morning we drove to Chicago, not entirely sure of what we expected to find.  We met with the director. He was wonderful.  We toured the residential facility which was old but clean and wonderfully geared toward deaf/blind individuals.  We saw the school. Met the teachers, the professionals and para professionals, the students. My mind nearly exploded with thoughts and ideas of how to teach Moise.  The grounds were beautiful with a park clearly set up for disablities.  There really was not a single negative thing that we could say about the school.

 Towards the end of the day, in spite of all the good things that we saw, I knew with every fiber of my being, that this was not the place for Moise, at least not yet.  I feared that Jim would not feel the same, that this would become a huge source of contention between us. We really didn't dscuss it much on the drive home, each of us processing it all in our own minds.  But when we got home, Jim came in from outside, rubbed Moise's head and said "That school's not right for him.  He is our little boy. He belongs here at home with us."

Relief flowed through me.  Jim and I were exactly on the same page.  The agony of this decision was over.  Moise will not be going to the wonderful deaf/blind school.  He will stay right here with us, where he belongs.  We will continue to seek guidance from the professionals at the school and we will find a way to teach him and help him become all that he can become.  It won't be easy.  It never has been easy.  But God is faithful.  He has always met our needs.  And Jim and I and Moise...........we'll do this thing together, right here, one moment at a time.

God is good, all the time.

Winning and Losing

  Running has been a monumental part of our children's growing up years.  With the exception of Grant, who chose to pour his energy into wrestling, they've all been running competitively since they entered middle school. My heart swelled Saturday morning as I watched Brock prepare for his sectional race, which marks the eleventh consecutive sectional that our children have competed in.

Both running and wrestling have blessed our lives immeasurably, teaching our children self discipline, mental toughness and the value of hard work and dedication. We have watched our children run through extreme heat and humidity, rain, sleet, snow and gusting winds. Our children have ran more miles than I can begin to tally.  They have known great triumphs and great disappointments.

 While running is, as a whole, an individual sport.  There is also a team aspect to it that most are unaware of.  This year we saw the importance of pulling together as a team as never before. Cross country is the only sport that I know of where teams compete for the lowest score.  It's simple really.  Hundreds of kids line up at the starting line and points are scored by whatever place you finish.  The first place finisher scores 1 point for his team, the 150th finisher scores 150 points.  The team score is the sum of the team's top five finishers.  Each of those top five runners is critical to the team.  The top five teams with the lowest scores advance to the state meet that will be held next week. The state meet is the climax of every cross country season, where all of the best runners in the state come together in one huge race.  It's a culmination of months of hard work.

This year our team endured a devastating blow when our number two runner suffered a broken bone in his foot last week. So it is that, as the team prepared for Saturday's meet, tensions were high.  Each runner bearing the burden of the rest of the team.  Each runner knowing that they had to step it up to make up for the points lost without our number two runner. Each runner knowing they had to run the fastest race of their life to pull their team to the state meet.

The tension was nearly palpable as our team prepared for the start of the race on a cold but beautiful Novemeber morning.  Tears formed in my eyes, knowing that my days as a cross country parent our quickly drawing to an end. Jim and I have watched and cheered and loved this sport as middle school, high school and college level parents.  

Our kids ran hard but they missed the mark, finishing with a team standing of sixth place by a mere five points.  For the first time in many years, Jim and I will not stand along the sidelines as parents of one of the state runners.  Still, I can't think of a time when I have ever been more proud of one of my kids.  Brock closed out this season by taking nearly 20 seconds off of his previous best time.  It was a cold day, which often causes stiff muscles and slower times.  Additionally, the course is known for slower times because of many hills.  But Brock fought hard.  The whole team fought hard.  The disappointment over not advancing to state was great but I am so proud of these young men.

And Brock?  There is nothing to not be proud of when one gives their all.  We couldn't ask anything more of him.  He dug down deep inside of himself and found that he there was room for improvement.  He found that he had a little more to give for his team and a coach who has helped to mold and shape him. A coach who loves his runners, who mentors them, not just to be better runners but to be better human beings.

His smile at race's end was one of great dignity.  It was a smile that said, "I didn't win and that's okay.  I gave my best." Sometimes I think there is more to be learned from not winning than from winning.

Running is so much like life.  We're all in  a race.  Sometimes we win.  Sometimes we don't.... and that's okay.  Sometimes it hurts so bad but the pain makes us better.  We keep fighting, even when we have nothing left to give.  We dig down deep inside of ourselves to find there's still more. It's about finishing the course with dignity. And winning or losing, God give us grace for it all.

I have fought the good fight, I have finished the race, I have kept the faith. Henceforth there is laid up for me the crown of righteousness, which the Lord, the righteous judge, will award to me on that Day, and not only to me but also to all who have loved his appearing. Do your best to come to me soon.

II Timothy 4:7-9

God is good, all the time

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. 

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.

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. 

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?  Well........it'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.