Friday, September 19, 2014

Oh, The Things They Can Do

In the world of special needs there is a great deal of focus on all the things your child can't do.  We go to physical therapy because they can't walk or run or kick a ball.  At occupational therapy we're told they can't clap their hands or stack blocks or properly hold a spoon, as if maybe we hadn't already figured that out.  And stringing beads or sorting shapes?  Well, for some of us that's just not in the foreseeable future.  Or maybe not even in the forever future.  The speech therapist helps out when they can't say "R" or "L" or, in our case, they can't utter a single word.  The feeding therapist, who happens to be the same as the speech therapist, draws our attention to the fact they can't move their food from side to side.  I'm willing to bet most people are blissfully unaware that a child is supposed to move their food from side to side. But if they can't, a feeding therapist will be sure to tell you.  And the developmental therapist? It seems like she should be all of the above mentioned therapists wrapped into one, but she's not.  She's there to tell you that your child can't play right.  He can't make eye contact with other kids, or take turns rolling the ball (the ball that he can't roll in the first place) and he most assuredly can't stand to have his hands in the grass. The list goes on and on.  He can't. He can't. He can't.

 I appreciate all of these therapists.  They are an invaluable resource who help us reach for the stars. But at times it's discouraging. No.  It's discouraging all the time. We really don't need anyone to tell us most of the can't do's.  All we need to do is go to a playground or a church nursery or sit in the pediatricians office to know that most three year old's dance circles around your 13 year old in the area of development. And if you thought maybe your two year old was catching up, that notion is quickly squelched when the nine month old sitting next to you is doing things your kid can't even think of doing.  But as mama's we can't go there.  We can't allow ourselves to get into the funk of discouragement.  So we work. We push. We encourage.  We dust off the creativity that's been shelved in our mind and we find things that they can do.  And we never give up.  We never, ever give up.

Kruz can't roll a ball, but by golly he can crawl backward like lightning.  He can't say please or thank you but he can blow raspberries so hard his eyes cross. And toilet paper?  Oh man, this boy can play with toilet paper like none other. 

 He's rockin' that push toy and if this mama has anything to say about it, he'll be dancing the macarena soon.

Kruz makes slow but steady progress in pretty much all areas of development.  He's delayed. No question about it. But on a normal day, when we're busy playing at home, who's keeping track?

 Moise, on the other hand, is not progressing quite so steady.  Two words sum it up. He's Blind. All the things that we taught him to do with his vision are no longer useful. Now that we have come to terms with his vision loss and he has too, I think, we are struggling to find things he can do. He needs some of his independence back, that sense of self worth that comes from doing something for himself.  He also needs something to occupy his mind and his time. His list of can do has been dramatically reduced as a result of the vision loss and the wheelchair confinement.  Winter is quickly approaching and without being able to take him out much in the cold temperatures, it has potential to be a very long and unpleasant season. I'm trying to be proactive, to come up with things he can do from his wheelchair and without his vision. And what I am finding is amazing.  He can do lots of things.

There is that game of Perfection that had been stuck up on a shelf because "he can't" see the shapes.  But he can feel them and he can still match the shapes with the holes.  The process pains me slightly as it takes five times as long as it took with vision but he's meticulous and persistent and he can do it. We set the timer after he's done and the shapes popping when time's up still elicits a giggle.

He can still work with his vegetable men.  The feet may or may not end up on top of the head and the ear may protrude from the mouth. But, hey, we live a life of things that aren't always exactly right.  He's the  creator, constructing them exactly as he thinks they should be. And so.......they're perfectly imperfect.

Without my girls home to help out with the cooking and baking, I'm missing my kitchen help.  The electric mixer is a new favorite for my boy.  A master chef in the making.  We have to make some minor adjustments for the wheelchair height but bar stools serve the purpose and he hangs on to that bowl as if his very life depends on it.  We won't mention the frosting that flies all over the kitchen because he can't see it and I'm not looking.

 Moise is no different than any other 13 year old.  Emptying the dishwasher is not his favorite chore but he is diligent.  Putting the silverware away is his new after school job.  After careful hand washing he places each utensil exactly where it belongs.  When he's done everyone knows it as that drawer closes with a loud bang. I'm working at figuring out how to let him empty more of the dishwasher but the wheelchair does pose some challenges.

 He loves his baby brother and he's careful, so careful to hold him tight.  He sits there and smiles as Kruz yanks his glasses off and tugs at his shirt.  It turns my heart to mush every single time.

For awhile, I lost my vision for Moise.  The world felt upside down without his vision or mobility.  It felt like life had knocked us down flat and kept kicking us.  But we're getting up now and finding that these boys are just as wondrous as ever. In spite of all they can't do's, there are so many things they can do. 

For those of you reading, especially other special needs mama's or educators, I'm open to suggestions.  I would love any thoughts on things a boy can do from a wheelchair without his vision.  After all, we all know it takes a village to raise special kids.  We're all in this together. 

God is good, all the time. 

Tuesday, September 16, 2014

God Meant It For Good

I used to think it was a figment of my imagination. That I was simply hypersensitive around the anniversary of Laynee's accident and, therefore, normal life events seemed bigger or more difficult at that time.  But it's true, unpleasant things happen around that time, things that drag me down even further.  I no longer think it's my imagination nor do I think it's mere happenstance.  It is the enemy of souls attacking when I am at my weakest, most vulnerable state. He seeks to destroy me. That's the ugly truth. 

 The beautiful truth is that "God meant it for God."  

This past heaven day anniversary was no different.  A series of events took place that left me feeling wounded and exhausted.  Within a matter of days my emotions ran through the cycle of grief, over and over again. Stunned. Angry. Exhausted. Hurt. Broken.  I could feel the battle raging within my own heart.  One side wailing, "I'm so tired. I can't do this anymore." The other side quietly whispering, "Learn from this. Find the good in this.  Grow from this."  

I spent a great deal of time in prayer.  I shed many, many tears.  And through it all my eyes were opened to areas of my own life where I could do better, things that I need to change.   I had been blinded by my own, often times, desperate need and didn't see the painfully obvious truth. 

God uses those moments, when we are at our lowest, to refine us.

I am a huge fan of radio minister, Pastor David Jeremiah.  I listen to him faithfully every day as a regular part of my morning routine  In the midst of all the events that took place over the last weeks, when my heart was struggling to right itself, David Jeremiah spoke words that seemed to penetrate through all of the ugliness. 

 "The vine dresser is never closer to the vine than when he is pruning it."  

Pruning hurts.  Having our eyes opened to our own failures and inadequacies hurts.  But it is in those times, when we are low and battles rage, that God draws near and whispers "I meant it for good."  

"You intended to harm me but God intended it for good, to accomplish what is now being done." 
 Genesis 50:20

God is good, all the time

Sunday, September 7, 2014

God of the Small Things

Five years ago today, our beautiful Laynee went to heaven.  She was beautiful beyond words, so sweet, so happy, so mischievous.  Never, ever had I known a child who radiated so much love and pure joy.   She touched the hearts of more people in 2 years, 7 months and 7 days then I could ever hope to do in a lifetime, through adulthood.  Laynee has Down Syndrome and I have the wonderful, heavenly gift of being her mommy. My husband is her proud daddy.  My children have the honor of calling her sister. We are blessed beyond measure.

The pain of losing her was and still is deeper and more intense than words can describe. But if this pain is the price for having loved her, we would pay it over and over again.  We hurt so much because we loved her so much. Heaven is so much closer, so much sweeter knowing that she is there.

I miss her.  My heart aches for her every single day.

The first week of September is always poignant.  Her accident is remembered on both Labor Day and today, September 7.  I cannot separate the two dates.  Both evoke keen memories of loving her and losing her.  It is a week in which we hang precariously between joy and grief.

Through it all, I continue to be amazed at the provision of a loving and merciful heavenly father, one who draws near to the brokenhearted and saves those who are crushed in spirit. (Ps 34:18)  He knows exactly what I need and when, and provides so fully.  Time and time again, I have seen his provision come in the softest, gentlest of ways.  So soft, in fact, that it would be easy to mistake it for something other than his loving attention to our needs. If I didn't know that my God is there, in all the details of my life, I would think of these things as nothing more than a friend being kind,  a song on the radio, or just a nice coincidence. But I know.  I know that He is God of all things,  God of big things and the very smallest of things.

Last Friday I was having an especially difficult morning.  My mind was tormenting me with memories and flashbacks of her accident.  I became submerged in the murky, messy cycle of self deprecation, particularly in the area of parenting.  You see, when your child drowns in your backyard pool, on your watch, any thoughts you may have ever entertained of being a good or even a decent parent are purged from your mind.  You are stripped, instantly, of any sense of pride or reputation or self worth. You lose sight of your true identity, often focusing only on the fact that you are "the one whose child drowned."   That morning, in the midst of my own negative thoughts, I received a text from a friend whom I have only met one time.  She has come to know my son, Grant, quite well but did not know the significance Labor Day week holds for us or the painful direction of my thoughts.  The last line of her text said "You guys are super parents."  Had this text come from someone who knows us well I would merely have thought they were trying to lift my spirits on a painful week.  But as it was I know that it was the Holy Spirit speaking through a new friend, soft words of encouragement, words that I desperately needed that day.  

A few days later I went outside in the afternoon to find this leaning against my door frame.

 I have no idea who left it there for the attached card had words of encouragement but no signature.  I was confused by it at first and it drove me a little crazy, knowing that I couldn't tell the giver "thank you. Then I realized that God, once again, was saying "Trust me.  I've got this." I have spoken and written these six words thousands of times in the last five years.  They are embedded into my brain and yet, sometimes during the difficult times, my heart forgets them. 

Both of these experience serve as a reminder that God speaks to us, through his spirit,  in the stillest, smallest  of voices.  So often he puts thoughts of someone upon my heart.  I pray for them and then I move onto the activities of my day.  Sometimes I think to encourage that person, but more often I don't.  We are his servants, his hands, his feet, his lips.  Sometimes a simple word spoken by us is exactly what someone needs to be reminded that He is God, God of the big things and the very smallest of things. 

God is good, all the time. 

Monday, September 1, 2014

To Honor Laynee

 Five years ago, Labor Day was just another holiday. It was a day off work, a day without the alarm clock, a day to spend working in the yard, or with family and friends, with cookouts and yard games.  A wrap up of another summer and the welcome ushering in of the glorious fall season.  That's all it was to me, nothing more, nothing less.  A holiday that somehow, as part of the working class of America, I thought I was entitled to.

Until that day.

 The day our world fell apart. The day the idealistic lens, through which we'd been viewing life through, was shattered and broken. From that day forward, our world began to spin on an entirely different axis.   Life as we knew it was gone and Labor Day 2009 would forever be the pivotal point of before and after. 

On that day, at the age of 2 years, 7 months and 7 days, our beautiful daughter, Jalayne "Laynee" Grace, stepped from this world into the arms of Jesus.  We were thrust, in an instant, into the fiery inferno of grief and trauma but more importantly, it was an inferno of refinement.

For five years I have writhed against the pain of child loss. In the process, out of nothing less than sheer necessity, I have found myself going deeper, spiritually, than I had ever been before. Deeper than is possible without the searing heat of trial and devastation.

Today, on this Labor Day,  5 years after the death of my precious child, I begin this new blog in honor of Laynee Grace.  I do not and never will pretend to understand why she was taken from this earth.  In my finite mind and in my mother heart, I feel that she was taken much, much too soon.  But I know that she is "in the place of God" and that "God meant it for good, to accomplish what is now being done."
 Genesis 50: 19-20

God is good, all the time.

As a result of this new blog, I will no longer be posting on our Family Blog. I will be posting family updates here as well as much refelection of  all that God has brought us to and through.   Because Laynee's Blog is one of the places that I feel closest to her, I will likely continue to post there, in letter form to her, on significant days.