Saturday, November 22, 2014

Grace, According to the Measure of the Gift of God (Part 1)

There's a verse that I love tucked away in the pages of my bible.  Unlike Romans 8:28, Jeremiah 29:11, John 3:16 and a host of other scripture verses that most Christians, and maybe even some non-Christians, can quote instantly, I find that very few know this verse. For those of us raised in Christian families or in weekly Sunday school classes, this verse probably didn't make the memorization list.  

 For unto everyone of us is given grace, according to the measure of the gift of God.  
Ephesians 4:7

 I think of this verse, written by the apostle Paul, as "my life verse."  It's almost as if God whispered it to me one day and said "This is your verse, you'll need for it for the rest of your life."  It brings peace and contentment and calm assurance to my heart.  Even though I know it well, I go to it often in my Bible. It's not enough just to recite it. I need to read it, to see it written on the pages of God's word. The word that gives me the strength to face each new day.

This verse rooted itself deep into my heart many years ago, on the day that Moise was placed in our arms.  Jim and I were so young, so unsuspecting, so oblivious to the fact our life was about to be irrevocably altered.  That day, before heading to the airport to meet the private jet that would bring Moise to us, there was a sense of nervous anticipation.  I searched randomly through my bible for anything that would calm my spirit.  That's when I found it, though I openly admit that I didn't fully comprehend the verse at that time.  I understood the grace part but the rest eluded me.  Understanding would come in due time.

 As we stood at the airport waiting for the plane, the verse rolled around in my head.  My arms and legs quaked as the pilot placed the tiny bundle in my arms and I knew, in an instant, that this baby was critically ill.  Suddenly I wanted out.  I didn't want to take this baby, with his rashes and filth and ashen lips to my home.  I had known the baby would be sick, but this was much more than sick.  I didn't think we could do it.

But then Moise's radiant smile pierced my heart and grace stepped in.  I knew then that we would take him home.  We would care for him in the best way we could.  We would do whatever it took to get him back, safe and healthy, to the mother whose heart ached for him.  As I buckled him into his car seat I asked Jim, "why do I have a feeling our life is never going to be the same?" Jim answered simply, "because it's not." We didn't know how or to what extent, but we knew that this child would change our life.

Grace became a mainstay as we struggled through months of hospital stays and surgeries.  It whispered to me through countless hours of rubbing his tiny head and singing to him, not knowing if he could hear me or not.  It became our hands and feet when weariness and exhaustion threatened to overtake us.

 That same grace held us up when we feared that we would give him back to his creator rather than his birth mother.

Grace held me that awful afternoon when through a fog, I heard the devastating CT results.  "The entire frontal lobe is calcified, the myelination pattern is grossly abnormal. He has severe brain damage.  Moise will likely never walk, or feed himself or hold his own head. He will be an eternal child."   Grace lay there on the bedroom floor with me as I was immobilized by disbelief and pain and fear for this child's future, his life.

Grace steadied us as the doctors voice crackled through the line of a telephone call from Haiti. "I have Moise's mother here with me," he said.  "She doesn't want him to come back to Haiti.  She knows he'll die here."  And then the words that took my breath away, "She wants you to keep him.  She wants you to be his mother."  I couldn't have spoken a word if I tried. Then a woman's voice came softly on the line.  Moise's mother. She said three words, "Merci, Merci, Merci."  (Thank You, Thank You, Thank You) They were words that felt like a punch to my soul.  This woman just assumed we would keep her baby, that I would be his new mother.  We never said "Yes" Why was she thanking me?

Grace was there as Jim and I agonized over the impossible decision that lay before us.  We could start the adoption process for a child whose future seemed so dismal or we could send him back to Haiti, where he would undoubtedly die. To adopt meant that our family would never have what the world views as a normal life, a lifetime of challenges and fears.  To not adopt meant the death of a child.  Grace stayed with us as we prayed and cried and explained it all to our children. Grace spoke through the mouths of our children, (who knew one thing above all, that we loved our little baby) when they said they wanted him to be their brother.

And Grace gave Jim the courage to speak the words that we both knew were true.  "There's not really a decision to make.  God made this decision when he placed our little boy in our hearts."  

Grace has promised never to leave us and it hasn't.  It has traveled this journey through all the bumps and twists and turns. Through all of the sunshine and the many, many storms, grace has carried us.

For unto everyone of us is given grace.  Grace!  It's for you and for me and it meets us right were we are.  Grace is the strength and the courage and the ability to do that which we cannot do.... according to the measure of the gift of God. be continued

God is good, all the time. 

Thursday, November 20, 2014

This Is Why It's Worth It

In the world of special needs, there are days when the world seems to stand still for just a moment. You hold your breath, afraid to move a muscle lest you break the spell.  Something big's about to happen.  You know it, can see the look of sheer determination in their eyes.  The next milestone, the next big hurdle is right there, about to be cleared. The effort, the endless therapy sessions, the frustrations, the mind numbing weariness.  All of those things fade into distant memory when, suddenly, the thing you've worked so hard for is happening right before your eyes.

Today was one of those days.  One of those wonderful, beautiful days when I know, without a doubt, that regardless of how hard it can be or how long it takes, it's worth it.

During his physical therapy session his therapist, Shannon said, "let's see what he does with a walker."  She found one, although a bit large for him, in their stash of adaptive paraphernalia.  He was uncertain at first but Shannon didn't give in to his objection.  

 Tears came to my eyes at the glorious sound of his little feet step, step, stepping on the tile.

He is so proud.  I am so proud.  It's moments like this and the feeling it brought to my heart that trump all the difficult moments.  I remember exactly what it is that we are fighting for.  That smile is worth every grueling moment that we have put into getting here.

God is good, all the time

Let us not grow weary in well doing, for in due season we will reap if we faint not
Galatians 6:9 

Thursday, November 13, 2014

Kids Need Kids

"I continue to believe that if children are given the necessary tools to succeed, 
they will succeed beyond their wildest dreams!"
-David Vitter
As mother of a 2 year old in my mid forties things are a bit different than they were when I raised my first set of kids. I'm different; older and, dare I say, wiser.  I am much more laid back or maybe that's just a disguise for having a lot less energy.  I attribute the fact that I am less structured almost entirely to raising special needs where my days rarely look like I think they will.  My appreciation for each stage of development is much greater because I don't just accept the word of older parents when they say "they grow up so fast. "  I know it.  I've lived it. Jamee was just a baby and now she's almost completed college. I know also that tomorrow doesn't always come and if, God forbid, it shouldn't come for another one of my children, I want to know that I loved with every fiber of my being, that I gave the very best that I had to give.

While advanced maternal age ( I think that term is generally used for pregnant women but if the shoe fits...)  has many, many perks, I have discovered one major draw back.   Children of older parents do not have a lot of other children to play with.  This is a problem.  And when the child is developmentally delayed and desperately needs other children to model after, it is an even bigger problem.  As our older children grew up, they were surrounded by kids of all ages.  My siblings, Jim's siblings, and the majority of our close friends all had kids with whom our children played. Play dates and park visits with friends were a regular part of every week.  Weekends were packed with picnics and cook outs or just getting together with families.  Not to mention that our 5 children played all day long with each other and their cousins next door.

Kruz, on the other hand, lives in an adult world. And not just any adult world, but one where every single one of us positively adore him.  His days are filled with kisses and snuggles and "look how cute he is." We dote and gush and cootchie coo him all day long.  These are all really good things but the fact is he is going to grow up and when he's five no one else will think it's all that cute.  Kids need kids, friends, someone to imitate and play with and even fight with.  I've never liked the idea of Kruz growing up thinking the whole world revolves around him but our entire social circle is made up of people with teen or young adult children.

My first attempt to remedy this problem was an epic fail.  I took him to our church nursery one Sunday morning and he screamed so long and hard that he vomited on the nursery volunteer.  But I was persistent and it gradually got better.  One week started with the nursery volunteer taking him from me outside of the nursery and then taking him around the other kids. We made baby steps and now he explores all over the nursery but doesn't exactly interact with the other kids.  I'm told he insists on sitting his little rear at the bottom of the slide so others can't go down and...well.....we'll work on that one.  But he goes, he stays, he seems genuinely happy and content when I pick him up. Those nursery ladies are the best.

But was one hour a week enough?  Did that give him the peer interaction he needs to help him develop? It was a start but given the severity of his developmental delays, I knew he needed more.  So I started my own little play group for Wednesdays.  His new friends being .....I think the correct term would be "first cousins once removed" but I never was good at that so let's just call them....  my great nieces and nephews.  That "great" in there makes me feel much older than I really am. It means my nieces and nephews are all grown up with babies of their own.

It took a few play dates but now he maneuvers himself right in the midst of the other kids. He wants to be a part of them and it melts my heart.

We play and sing songs and read lots of books.  I've read If You Give a Pig a Pancake more times than I count.  But we're not really counting anyway and that pig and all his silliness sure can make little people giggle.  We do crafts too and that scene takes me back a few years to my older children's toddler and preschool days.  Those were good days.  Sometimes I wish I could have a do over.  Some things I'd change but lots of things like I'd keep the same.

A certain little miss is self appointed "keeper of all that Kruz does" and that's okay. She has her own form of hand over hand instruction and, amazingly, he doesn't seem to mind. An enormous step in the right direction. This scene would not have gone over well a few months ago.  It's progress. What she doesn't know is that she's really only two weeks older than him.  That developmental gap is glaringly obvious but it IS progress and that's what matters.

Okay, so little miss might be self appointed keeper, not only of Kruz but of all the others. She's the oldest by a little and she takes that role very seriously.

It gets a little hairy at times.  Five kids under two is bound to create a little chaos.  But chaos is good.  It's part of learning and growing and becoming.  It's part of being a normal kid and we're striving for doing normal as much as possible.

I love watching little minds soak up good things.  Friendships are forming and I'm getting a beautiful glimpse into little personalities.  I see their mommies and daddies in them and stand in awe of the whole genetic thing and how a God so great can create these little people and pass traits along through the ages.  It's beautiful. Life is beautiful. Growing up is beautiful.  Kids needing kids is beautiful.  My life is blessed to be a part of so much beautiful and in the meantime Kruz is learning.  It's a win, win.

God is good, all the time.

Saturday, November 8, 2014

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.

Wednesday, November 5, 2014

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 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 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.

Monday, November 3, 2014

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