Monday, May 19, 2014

A Miracle,3500 Miles, the Plague, A Book and A Dance - part 1

Oh my word friends, it has been too long. I was going to apologize and say just how crazy it has been but what's the fun in that.  I am after all a story teller and the past few months are one heck of a story.  This will take a moment or two.....or twenty; so pull up a chair, grab some sweet tea, and settle in, the journey starts:now.

April first dawned bright and early, there was a buzz of excitement all around Skiffdom, today was the day we'd been planning for almost a year.  Today we were driving back to Virginia, as a family, for the first time since we moved to Texas more than six years ago.  We'd prepared for  this trip, unlike other Skiff adventures.  At Christmas, all the boys received a personal electronic gadget to keep them occupied over the long trip; each child had brought their favorite blanket, stuffed animals, books, toys, etc, in a personal bag that they kept with them at their seat.  The back of the truck was piled high with fourteen days worth of luggage for the seven of us, and Phil the cat had a pet sitter arranged.  We all piled into the truck and headed to Brookshires (the local grocery store) to have breakfast and wait for the pharmacy to open to pick up a few prescriptions.  What fun, the boys ate pastries, I bought "clean" snacks for the long hours in the truck and hubby and I sipped our coffee.  Okay we guzzled our coffee; sipped just sounds so much more genteel but there was nothing genteel about the way we clasped our mugs and downed the caffeinated ambrosia.
Finally, an hour later, the pharmacy opened and we were on the road, the bright sky and open road spread out before us.  
We were heading back east for my sister Jennifer's wedding. Normally, if there is a family function, I just hop on a plane, fly out for 48 hours and then I'm back home. No fuss, no muss.  But Jennifer really wanted the whole family at her wedding if possible. That combined with my father's recent heart attack made it important that we all travel the 1400 miles back to the state that is for lovers. 
Ah yes, my father's heart attack, here is where the miracle of our story enters.

I remember the day like it was yesterday, Sunday December 8th all of the Dallas area, where we live, was under at least 4 inches of  solid ice.  Everyone was completely iced in, a rare sight here in the land of 100+ degree summers and mild winters.  So we all sat around, watching movies and thanking God that our electricity had not gone out like thousands of others had.  It was late afternoon when my phone rang, flashing my mother's number.  I answered happily, expecting that my mom was checking in on us because of the weather. Instead it was my sister Stephanie, calling in tears, to tell me that my father had had a massive heart attack while on a plane in Salt Lake City, where he had a layover on a business trip.  
Dad had died twice, my sister relayed; once on the plane where he was brought back by a Cardiologist and a doctor who just "happened" to be on the same flight and once in the ambulance on his way to the hospital.  Things were looking really bad.  I have never felt the amount of complete helplessness that I did at that moment.  My father, the man who had always been so strong, stronger than any ten men I knew, was laying in a hospital in Utah and I had no way to get there.  The ice that had been a mere nuisance before was now a cage, keeping me trapped, far away from where I needed to be.
He stabilized over the next few days and I was finally able to fly out early Thursday morning.  My Father was scheduled to have a stint placed that afternoon, just as an emergency hold over until they could get him stabilized and back home for open heart surgery at a later date, when he was stronger.  I sat in the waiting room with my mom and four of my brothers, when fifteen minutes later the doctor came out and asked us all to follow him back to the cath lab, where my father still laid sedated, with wires hanging everywhere, a picture of his heart beating on a monitor before us.  The doctor was grim and we all stood by while he explained that things were much more dire than anticipated and my father would have to undergo open heart surgery the next morning.   My last brother and two sisters made arrangements to fly out to Utah that night and the doctors began to prep my Dad for surgery.
The surgery started before six am the next morning. We all sat huddled in the waiting room, now all eight of us siblings and my mom were there.  We pretty much took over the whole room.  We did all we could to pass the hours by, praying, playing cards, talking, praying more.  The nurses called every hour to give us an update but it was taking much longer than predicted.  Fourteen hours later the surgeon came out, so exhausted he could barely talk.  His prognosis was not good.  He said if Dad made it through the next three days he would then have a 50% chance of making it.  The days ticked slowly by, the progress slower than the doctors wanted. It was the slowest three days in my memory.  This was the first time my brothers and sisters and I had been together sans spouses and kids since I was married fourteen years before.  The one positive thing that happened was that we all drew much closer together.  One of my favorite memories of that time is my sisters and I sitting alone in the waiting room praying and singing worship songs together.  Such a poignant, sweet moment in time.
hospital and mountains in Salt Lake City
Dad made it through those three days, but when they removed the intubation tube he was not himself at all, he couldn't speak and his personality was gone.  The doctors confirmed he'd had a stroke during the surgery.  As the days passed, one by one, we all had to fly back to our families, leaving mom with my Dad.  Two days before I was to fly back our rental car was broken in to, in the hospital parking lot.  It was late and we had done a quick run into the hospital to drop food off to the sibling staying with Dad that night.  My brother Joe, who is a Maryland State trooper, was due to fly out first thing the next morning.  Thankfully he was able to stay and help work out the details of the robbery and the insurance on the rental car covered the cost of everything stolen. God was even in this, that next day my father was still pretty sedated and he seemed to only respond to Joe when he needed to eat because they were going to put a feeding tube in if he was unable to eat
Me at the Hospital in Salt Lake City
.  Had the car not been robbed Joe would have been gone and would not have been there to get Dad to eat!  My brothers and uncle flew out at different times to be with mom, so she was alone as little as possible.  The doctors were saying that Dad would probably have to stay in Utah until at least February.  They didn't know my Dad.  Once Dad set his mind on recovery, there was no stopping him.  The Meier stubborn streak has no equal and it was put to good use in this instance.  The first week of January my father was flying back to Virginia, medication ports still in his arms.  

After that dramatic crisis it was doubly important for the whole family to be together to celebrate my sisters wedding and my Dad's miraculous recovery. 
We Skiffs were excitedly driving through state after state on our way to celebrate. That first day we drove through Texas, Louisiana, Alabama, Mississippi and stopped in Atlanta for the night.
While in Louisiana, we stopped at Duck Commander to stretch our legs for a few minutes, it was literally a mile off the highway.  The boys liked the show, especially Benny, so it was a fun little breather.  We bought a few souvenirs, saw Willy, and grabbed some pictures.  The boys were particularly impressed with the Duck Dynasty RV's.  Then we were back on the road, driving, driving, driving.  
The boys were enjoying the trip, they were all getting along, without any meltdowns.  Talk about miracles!!!
Duck Commander
Duck Dynasty RV at Duck Commander West Monroe, LA
By the time we made it to Atlanta for the night it was 1 am and we were exhausted.  I had made reservations online at one of our favorite hotel chains, The Country Inn and Suites, once we knew for sure where we would stop for the night.
My eyes were practically held open with toothpicks when I went to check in.  The night manager was as sweet as pie but she was just confounded as to why she couldn't find our room.  It seemed Travelocity had booked us a room that didn't exist.  She was very apologetic but she only had the smaller suites; we didn't REALLY need all those beds did we? I assured her we absolutely needed ALL those beds.  She resolved the issue by comping us a second smaller suite.  All was good, we were so tired, we just wanted some beds.  I put some boys in the first room and made my way to the second room to get the other boys settled.  I slid my key card into the lock, excited to be getting to bed; I opened the door to a completely unmade bed, stripped down to the mattress and the room hadn't been cleaned.  I called down to the front desk and explained the issue, the manager apologized profusely and promised us ANOTHER room.  We all crammed into the first room to wait. Another fifteen minutes and the manager was at our door with the key card to another room.  This time Hubby brought the older boys to the room, as soon as they walked in Sam began to have an asthma attack; although it was a nonsmoking room, someone had been smoking in it.  Once again we called down to the front desk and once AGAIN they gave us another room. I would like to say I found humor in this all to Skiff hotel adventure but alas I was exhausted and irritated but at least they would have a good breakfast in the morning (my boys absolute favorite part of any hotel stay is the breakfast).  The hubby and I finally settled in for a very uncomfortable nights sleep on the pull out couch in the room with the smaller boys around 2 am.  But Breakfast was going to make it all right, really it was.
Around seven am we began making our way to the breakfast room in batches. The delightful smell of coffee and waffles assailed my senses as I walked down the hallways with the younger boys.
We made our way to the breakfast line only to discover there were no clean plates, forks, or made coffee!!! They were out of everything.  I wanted to cry, no room, no bed, now no coffee!!!  After another 40 minutes they brought in clean dishes and began to refill the depleted food trays but there was still no coffee.  I was not a happy camper.  That was the worst $130.00 we'd spent on a night at a hotel in a long time.  The hubby was in a much more gracious mood than I and discouraged my impending rant to the hotel manager. Lucky for her that I have such a good guy for a husband.  By nine am we were back on the road, making our way steadily towards Virginia.  We drove through Georgia, South Carolina, North Carolina and finally made it my parents in Virginia at nine o'clock that night.  1400 miles, two days of driving and the boys were still doing great! 
The next day I had to go buy my bridesmaids dress for the wedding.  This is another miracle, let me tell you.  My sister was having a casual wedding with her bridesmaids in pink. Now it seems like finding a pink bridesmaids dress would be no big deal but add to that I am plus sized and we bigger women don't usually wear pink, I had one day to find it and the malls near my parents didn't have a single plus sized store!! I was truly sweating the whole dress thing.  My mom and I looked everywhere and finally ended up at Dillards where I found a casual but not too casual dress, in pink, in my size, ON SALE, and it actually looked good on me!!! Let me tell you, I was doing a happy dance because I was thinking I would be rolling it down the aisle in jeans and a t-shirt at the rate the dress shopping was going.
The rest of my days before the wedding were spent in wedding prep, while my amazing, wonderful, terrific, cannot brag enough about him, husband took care of the boys, bringing them to all our old haunts. I was sad to miss out on the trips down memory lane but I loved being a part of my sister's wedding preparations.  I worked on decorations with the girls while my Dad was busily baking my sisters wedding cake.  Five months from being brought back to life, surgery and a stroke and my Dad was not only well enough to walk my sister down the aisle but he made her wedding cake!!!!!
Martha, Mary and I working on wedding prep
Boys at General Shephard Crump Memorial Park Glen Allen, VA
Alex at Crump Memorial Park with sheep
Paul in front of trains at Crump Memorial Park
Boys at Maymont, Richmond VA
More Maymont
Maymont April 2014




The Big Day arrived, bright and beautiful.  Jennifer made a beautiful bride and her wedding could not have been more perfect.  She had her wedding at the historic Carillon in downtown Richmond.  Friends and family came from all over to celebrate my sister's marriage and my Dad's miraculous recovery.
The Boys at Jen's Wedding

My beautiful sister Stephanie and I getting in place for the wedding
The cake my Dad made 5 months after his heart attack!!

Alex and I at the reception
The wedding was a huge success; after the reception there was a huge "after" party at my parents house.  It was so good to catch up with everyone we just didn't want it to end!! The fun lasted late into the night, with hubby and many of my family playing poker.  I however was exhausted and went to bed around 9.  Sunday we visited with family and started to pack up. Our plan had been to stay in Virginia for the remainder of our trip, doing fun day trips but in true Skiff fashion we just couldn't do a "normal" near cross country trek.  Nope, on a whim we decided we might as well go to upstate New York to visit my husband's family, we were after all a mere 600 miles away!  Stay tuned for the rest of the story!!!


The picture of my whole family: brothers. sisters, spouses, grand-kids, my mom and Dad and Jen and her new husband, Hunter 4/5/2014

Saturday, February 8, 2014

A Glimpse of Acceptance

Come my friends, pull up a chair, while I bend your ear about things unclear
Things of import, things of faith, things of beauty and things of grace
This world, of mine, so precious and dear, I wish to share
Now that you are here
I've waited a while, so let us begin
Here is my story, my friends and kin

That little poem pretty much sums up the way I see this blog.  It is my virtual living room and you are my guests.  I am a story teller, a weaver of tales and my life has given me plenty of thread to weave with.  I'm never sure what each story tapestry will look like as I begin.  I pick out a few threads and just begin to tell you the story that those particular threads are a part of.  I am always surprised what the finished product is. For this reason,  people often have a hard time defining my blog.  Is it about motherhood? Autism? A personal diary? A creative venture, perhaps?  Yes, to all those and so much more.  This blog is a series of glimpses into my life, my family, my heart and my head.  No one glimpse is enough to tell the whole story but if you step back and view all the glimpses as a whole, the tapestry of me will emerge.
I say this to clarify for some of my newer guests.  You are all welcome, I am enjoying our conversations together.

The story I have to tell today is one that is still developing.  The threads are still a bit tangled and I am still working out the knots to see my way clear to the beauty inside.  So bare with me, as I may travel a few rabbit trails, or even get hung up on a brier or two.

I have been very honest about our autism story , if you will.  It has been a huge, life changing, beautiful journey.  I am blessed beyond measure by the boys God has entrusted me with.  However  even in great blessing there can be great heartache.  The trick is to feel the heartache, accept it's reality and move on to the beauty God has.
I have alluded to the rough year my oldest son had in 2013, without giving the details.  For you to understand, I am going to give more specifics.  Paul has always struggled with high levels of anxiety directly connected with both the Asperger's and his giftedness.  In February of 2013, he had an appendectomy.  
This started  full year of spiraling anxiety (though for a long time we didn't know that was what was going on).  He spent months in pain, laying in one position on the sofa, after the surgery.  We sought out specialist after specialist, made repeated runs to the ER, had every test imaginable, only to be told they could find nothing wrong.  We had to remove him from school because he would have major pain attacks almost as soon he got there.  Over the summer he seemed to improve so we decided to give school another try.  We are so blessed to have a middle school that more than worked with us.  They twisted themselves into a pretzel to accommodate Paul but in the end he still could not handle it.  A month after enrolling him I was once again unenrolling him.  It was October, this journey had started at the end of February and Paul was continuing to shrink his world.  He now confined himself to one spot, on our sofa.  His pain-free, safe zone.  Our doctor said Paul needed to be medicated for his anxiety and sent us to a Psychiatrist.  After three and a half months and two medications, Paul is doing much better.  As a matter of fact he is slowly working his way back into school! This is fabulous news.  I cannot tell you how incredible it is to see my goofy Paul coming back after a year of him being completely paralyzed by his anxiety.
Seeing how well this had worked for Paul, we decided to bring Jamie.  As Jamie has entered the pre-teen years he has become much more difficult to deal with.  He still does not correlate his action to consequences and still has a very big problem with any sort of boundary to contain his compulsive behaviors  I wanted to get a another professional opinion.
The Psychiatrist sat with Jamie and I for an hour and twenty minutes.  Jamie did most the talking and she mostly observed and asked questions.  Jamie then left the room and she and I had a long talk.  I expressed my concern about his lack of development in several key areas.  Jamie is so advanced in other areas and has been in therapy since he was about 3.  Most of the time people think I'm crazy when I express concern that Jamie may never be able to live independently.  I think a large part of me wanted to hear a professional tell me I was an overly concerned mom and everything was going to be fine. That isn't the conversation that occurred however.
Instead the doctor confirmed that there were significant developmental concerns that she could see and that unless Jamie built some of these bridges over the next few years, I was correct in thinking he would not live independently.  She also said that his major splintering (he is highly advanced in some areas and has major deficits in others) further complicated the situation.  She was not negative at all and I thought I was prepared for this news, after all I had seen it coming.  Instead hearing my intuition confirmed, broke my heart all over again.
Friends please don't tell me that the doctor can be wrong and that he still has more years of growing and maturing to do.  I know this.  We have already overcome such monumental hurdles that we were told impossible to overcome when it comes to Jamie.  I am not giving up but you need to hear my heart here, this news just about crushed me.  Even I need a moment to feel my feelings, to scream out "This sucks!" before moving on to the business of fighting and forging and finding beauty.  
It sucked that my beautiful, talented, sweet child may not be able to drive or live independently or go away to college. It sucked enough that I broke down in tears in front of a random stranger who was kind to me.  Talk about embarrassing!!  It sucked enough that all I wanted to do was curl up into a ball and cry for two days,  I didn't because life doesn't stop just because your world is falling apart.  
I called my two best friends and they listened to my heart and didn't judge me.  I cried and then I accepted it and began to move on.  This is life folks.  All the time people ask me how in the world I handle five boys, four of whom have ASD, a husband on the spectrum, both my husband and I having lifelong diseases and all the other stuff our daily life entails.  Here it is folks.  Here is the secret.  You grieve, you cry, and then you accept.  Once you accept God's plan, the why of it all doesn't matter nearly as much as the how. How is this going to work?  How are we going to plan for this or that?  In finding the how, you find the beauty of God's perfect plan, his complete provision and his amazing grace  This may read like a Pollyanna reality but it's not.  I have hard days, my heartbreaks.  I know it isn't easy, believe you me.  But in fixing my eyes on what is and not on what I wish was, I have found peace, I have found grace, and yes I have found amazing beauty.         

Saturday, January 18, 2014

Too Fat and Back- a glimpse of my journey of acceptance and healing

Hello friends!!!!  It has been way too long.  I have taken a break from my writing to focus on a few things that I was working through.  My mamma always said if you can't say anything nice then don't say anything at all.  Sage advice that I have followed these last few months.  I must say I have missed you all so very much.  I cannot let so much time elapse between our chats again.

Warning- this is going to be a very personal blog, maybe the most currently personal I've ever posted.  I would ask that you understand that this is my story, which I have hesitated in writing for the past year and a half.  My counselor told me that when I was ready to share, I should; that this would be healing not only for me but for others out there who have walked a similar path.  This is written not to wound but to heal.  Unfortunately, others have been a part of this journey (for good or ill); I will try my best to protect them but I will no longer be shamed into silence.

A year and half ago I wrote a blog about being fat ( read here http://www.glimpsesofskiff.com/2012/10/a-glimpse-of-being-fat.html).   I thought after that blog that I had exercised my fat demons. I thought I was whole.  I was wrong.
The church I wrote about, we did leave.  The story of why is long and convoluted.  It involved a lot of hurt and brokenness for both my husband and I.  We had loved our church and the people we worshiped with.  We weren't planning on leaving but a circumstance arose that put me in a position where I could either stay silent about something I felt was very wrong or I could address it (with the appropriate people).  I, being the meek and mild mannered person that I am, tried to address it.  My thoughts on the subject were not appreciated, as I was told in no uncertain terms.  In the midst of this, heart wrenching conversation, someone I loved and respected very much, looked at me and said  "The only thing I see when I look at you is your weight".  Of all the things said that night, that crushed my spirit.  I had been fat shamed straight out of God's house and it took me over a year to be able to go back.
The person who said that to me, did me a HUGE favor (I'm not even being sarcastic).  What was said as an off the cuff, hurtful, barb, eventually drove me into counseling.  My whole life I have lived life ashamed of my body, ashamed of who I am on the outside.  I tried every diet imaginable, to no avail.  I prayed, fasted, exercised, tried to starve myself (I make a lousy anorexic, it just wouldn't take), tried to make myself throw up (it seems I have very little in the way of a gag reflex, so I failed at bulimia too), I even tried diet pills.  I berated myself and was berated by others.
The stories of what made me hate myself are numerous.  Once as a young girl, I was wearing a spaghetti strapped shirt as we went out to dinner with friends (a BIG treat in a large family with limited funds).  I was excited and thought I looked pretty cute.  While eating someone looked over at me and told me my arms were too fat.  I shouldn't wear shirts without sleeves. On my eleventh or twelfth birthday'  I was told that I was too fat to have a birthday cake; they were just looking out for me you know.  I was made to weigh myself and record my weight on a chart in our bathroom,every week, an utter humiliation for a teenage girl, already struggling with self image issues.  Grandparents, parents, friends, family and strangers all reminded me that I was a sub-par woman because I weighed too much.  I was even told that I would never get married because though I had a pretty face, I was too fat .  No man would want me; if by chance I was lucky enough that one would, he would be old and fat and just looking for someone to take care of him.
I tell these stories, not to make others look bad, or to make people feel sorry for me.  I tell them simply to give background on why that last comment, made in the bastion of the only place I had ever felt truly accepted (the church) cut so very deeply.
After a few months break, we tried to go back to church but every time we did, all I could think was that I was so fat these new people obviously were judging me and wouldn't really want me in their congregation.
It got so bad that I finally went into counseling.
young me
Let's be honest, there are a lot of things in my life that I needed counseling for.  But the one thing that became very clear was that I was deeply damaged.  I could not accept that others could love me because I felt so unworthy of their love.  My weight had literally become the barometer by which I gauged my acceptability to the world. Over several months, I slowly began to work through my issues.  I came to begin to accept and even embrace the woman God created me to be, no matter what numbers on the scale read.  I began to shop for fashionable clothes and to buy jewelry and make-up for myself.  Before I had always felt guilty if I did those things because I didn't deserve them in my mind.  I always made those things a reward I I lost ten or twenty or thirty pounds, because anything pleasurable or nice was dependent on if the scale said I earned it.   I was depressed because I could never, ever be thin enough to earn all the things I needed (forget wanted, I went for two years with a coat that was basically in tatters because I refused to buy a new one until I lost more weight). I even refused to go to MD's because I was so ashamed of what the scale said.  Once when I was 8 months pregnant with my last son, I had to go for an unscheduled appointment at the OB/GYN (we thought I was going into labor).  My normal doctor wasn't in so I got one of her partners.  He was in the hall reading my chart and looked up at the nurse and said "You seriously want me to check on her and she weighs this?!?"  I was mortified.  He didn't know I had heard him, so I smiled and politely spread my legs; knowing the whole time what he thought of me as he examined me in my most vulnerable of positions.  I haven't been back to the gynecologist since my son was born over nine years ago.  This week I scheduled my first appointment.  This is a huge step in the healing that has happened in me over the past year.
As I have learned to love the woman I am, an amazing thing has happened, I've become stronger and healthier.  I have made changes to my diet, not with the focus of losing weight, but with a focus on my over all health.  As I've made these changes the numbers on the scale have been steadily falling.  The amazing thing is that this fact is so very secondary to me.  Other people are more excited about the weight loss then I am.  To me it is the fact I was able to scale the cliff (okay more of a steep ledge) to go fossil hunting with my boys that is the bigger deal.  The fact I now have energy and creativity to make my home into the home I want my boys to love and treasure is HUGE.  The fact that I now can enjoy the holidays with my family instead of being nearly comatose from the amount of pain I am in from preparing for them, is the most treasured huge deal.
My focus has changed.  I like me, regardless of the scale.  I hope one day others who can only see my weight can come to appreciate the amazing person I am but if not, that's okay.  I am no longer shamed by their prejudice and ignorance.  I am fine with who I am and I really do like the me I see in the mirror.  I look pretty darn cute with my hair done up and my red lipstick on.  I look just as cute in my pj's with wrinkle cream on my face because who I am doesn't change because of what I'm wearing or what I weigh.  Who I am is a child of the most high God and he finds me beautiful.
Me now


Friday, September 6, 2013

A Glimpse of Samuel John

Sunday, December 2nd 2001 dawned overcast and cold in our upstate New York home, pretty much par for the course in that part of the country.  I was bustling around trying to get our family of 3 ready for church. Being one week of shy of eight months pregnant and having a sickly 17 month old, I felt maxed out.  My husband had gone back to college and was working full time.  Money was so tight, I had yet to buy anything for the new baby girl who was due to arrive in 5 weeks. Serenity Joy Skiff was to be her name.  Serenity in the midst of chaos, Joy coming from sorrow.  There had been much sorrow during this, my second pregnancy.  September 11 had happened a few short months before. We had family near both the New York attack and the Pentagon.  Blessedly, they were unscathed, but like all of America we were still in shock and mourning the loss of so many lives, our sense of security, and the death of the illusion of invincibility.
Personally, our marriage was stressed to the point of almost breaking.  Between classes and work my husband was hardly ever home and when he was we argued (this was before we knew about Aspergers and we were struggling with what seemed to be insurmountable communication issues)  I was stuck at home with a very sick 17 month old and not many friends or family.  I was a stranger in a strange land.  Despite it all, I was very excited for the upcoming birth of our second child, our child of promise.

After I fed Paul breakfast, I bent to pick him up to give him his iron drops.  Then I felt a pop and my water gushed all over our kitchen floor.  I called out to my husband that there was a change of plans.  We weren't going to church.  Instead we were going to Walmart to buy diapers, wipes, powder, onsies, etc. and then we would be heading to the hospital because we were gonna have a baby.  I called the MD and off to Walmart we went. Walking through Walmart, with your water broken and having contractions is NOT an experience I would recommend.  They don't have a special queue for laboring mothers (Walmart this may be something you want to do, just saying) so you are stuck in the regular old queue that on the best of days feels like it takes eternity to go through, this was not the best of days.  I was pretty sure my baby was going to be born, grow up and graduate high school by the time we checked out.  Of course that could have been the contractions talking.  

Unfortunately, my contractions stopped completely after we left Walmart and I would not deliver my darling baby until the next day. December 3, 2001.  The MD was running late, my husband was sick as a dog, laying next to me on a cot, and I was feeling great, singing Christmas songs with the nurses, when my baby made their appearance (this is the glory of an epidural.  After having done a natural birth the first time around, I was not going down that particular road EVER again.  Feel free to judge me;)

Sam, almost one year
Once our beautiful baby entered the world it became abundantly clear the ultrasound was a liar, liar pants on fire.  We didn't have a baby girl at all but a beautiful baby boy, with the roundest head I've ever seen and the most piercing blue eyes you can imagine. He was perfect, and he was most definitely NOT a Serenity Joy.  Unfortunately, we were not prepared to name a male baby specimen so we had to pray over night what his name was supposed to be.  The next morning , I knew what his name was to be, Samuel John Skiff.

Sam is now a few months shy of 12 years old.  He is a creative soul and a bit of a perfectionist.  He recently took four months building a HUGE Lego X-Wing fighter.  He finally finished it and as he was showing it to us a large portion fell apart.  Though he was frustrated, he didn't give up.  He went right back to building it!   Patience is not my greatest virtue and tedious tasks drive me to distraction!  Sam definitely did not inherit this kind of patience and perfectionism from me!

Sam is our only child not on the ASD spectrum. Being the NT sibling to one child who isn't NT (neuro-typical) comes with it's own set of challenges and complications.  Sam has four brothers and a father on the spectrum.  He could have become bitter because in our house he is the different one, the one on whom more responsibility falls, the one who isn't the squeaky wheel.  Instead, he has become a compassionate, strong,  mature young man.  I am so proud of the man I see growing in the boy.   He looks out for his brothers,  explains things they may not understand to them with great patience and sweetness, he is always looking out for the under dog, even at school.  
 It can be so easy to over look the child who always does his homework without being reminded, who does not meltdown at the slightest noise, who remembers to shower and brush his teeth without constant reminding.  As a parent, it is my responsibility to make sure I don't allow him to fall into the background, his needs drowned out by the much louder and noticeable needs of his brothers. I try to make special time for Sam, to make sure I listen intently when he talks, that he has a sounding board for the frustrations he does experience as our only NT child.   I never want Sam to feel he is carrying more than his share or that he is under appreciated.  For this reason, we always pay him for the chores he does above and beyond the regular chores all the boys are required to do.
 He still carries more than his fair share simply because he can.  God has given him wide shoulders in every sense of the expression.   If it sounds like I'm bragging, I am. So often, I write about our four boys on the spectrum, their struggles and triumphs.   Today, I wanted to talk about our NT child, who is surrounded by the spectrum in our home.
 Sam the Merciful, Sam the Strong, Sam the Kind of Heart.  I love you Sam.
Sam almost 12




Wednesday, August 14, 2013

A Glimpse of a Miracle Worker

Once upon a time there was a special little boy.  Though he was born prematurely, he was perfectly formed with a beautiful olive complexion, rosy cheeks and an the sweetest angel kissed lips.  From the day he was born he had an other worldly presence about him; as if  a part of him had remained in heaven to worship with the angels.  He was innocent and frail and beautiful.  His twin brother came into the world seventeen minutes later than him.  Whereas he was frail and ethereal, his brother was handsome,robust, and alert.   Even as a newborn, the stronger, younger twin guarded over him, always looking for him, reaching for him and crying out for his needs.  After an arduous pregnancy, their mother wept tears of joy over their perfection.  They were such beautiful gifts from heaven.
As the boys grew, the younger twin was adventurous and bold.  He loved to test his limits and was independent to a fault.  The older twin, however, remained disconnected from the world around him.  It was as if he was locked in a tower, deep within his soul, waiting for someone with the right key to set him free.
He sat by himself, oblivious to all that happened around him.  He was content but so very far removed from the world around him.  
Jamie 2yrs old

That sweet, ethereal baby boy was Jamie.  His younger, stronger twin was of course Alex.
My pregnancy with them had been very traumatic.  I have written about it before so I will just hit the highlights (or low lights, depending how you look at it).  At 25 weeks pregnant I fell down a flight of stairs while carrying my one year old, Sam, down for breakfast.  Blessedly, Sam was completely unharmed but I shattered my elbow and spent the remainder of my pregnancy in and out of the hospital, mostly in.  The twins were protected but Jamie's sack had a small rupture, that slowly leaked amniotic fluid.  I watched them develop daily (sometimes several times a day) on the ultrasounds that I had.  That was pretty cool. I had many amniocentesis (where they insert a long needle into the sack and withdraw amniotic fluid for testing).  During those tests Alex would move around until he was close enough to bat at the needle to keep it away from Jamie.  What an amazing, amazing thing to watch.  I got to know my boys personalities a little before they were even born!
They were born at 35 weeks.  Jamie was in distress and had to be placed on oxygen. From the moment they were born
Jamie was different.  He never responded to human contact.  He seemed to be other worldly almost. 

As they grew, my concerns for Jamie grew.  He never broke out of that shell.  He remained alone in his own little world.  He started to talk around one years old but stopped by two.  He did not respond to pain, cold, heat, hugs, darkness, tickling, conversation or anything.  He never sought human affection on his own.  Then he started screaming, all day, every day.  He would violently beat his head.  I spent all day holding him, singing to him, counting in a monotone voice (that helped to calm him).  We brought him to his pediatrician, who sent us to a pediatric neurologist.  He diagnosed Jamie with severe autism.  He gave us very little hope that Jamie would ever improve.  He wanted us to put him on heavy seizure medications and psychotropic drugs to manage his meltdowns.  He recommended some therapies but said in his opinion Jamie would probably not respond to them. 

Our pediatrician recommended that we contact the school system.  We lived in a county, in Virginia, that had a very good autism program.  He thought they may be able to help, or at the very least give me a break a few hours a day.  We applied and Jamie was accepted into their preschool autism program.  He was barely three but everyday I loaded him and his stuffed animal onto the special bus.  He was so very tiny.

Then an amazing thing happened.  I met a miracle worker.  Her name was Erin and she completely changed our lives.
Erin was Jamie's teacher but she was oh so much more.  She came to our house to visit and observe Jamie in his home environment.  She had so much love and passion for the kids she taught.  She poured her soul into each and everyone of them.  Under her and her team of amazing therapist, Jamie began to break out of his tower of isolation.  He started talking through stuffed animals.  I will never forget the day he told me "Bunny wants a drink".  It was the first time he had expressed any kind of need or desire verbally!  Later he started talking in the third person "Jamie wants a drink".   
I cried the day Jamie looked up at me, after a meltdown and said "Jamie's broken."  I held him and rocked him and told him without a doubt Jamie was NOT broken, while my heart shattered inside my chest.  
I cried again the day Jamie came up to me and said "Jamie loves Mommy."  I picked him up and held him and rocked him and told him how much I loved him, as my heart exploded with joy inside my chest.
I cried the first time Jamie sang a song with me. There are so many, many moments like these.  Every single one of them was made possible by his teacher, our angel incognito, Erin.
Tomorrow, we will see Erin for the first time in six years.  Jamie is now ten.  He is mostly on grade level at school.  He carries on full conversations, plays with his brothers and the neighborhood kids.  He is an extremely gifted artist, loves music (especially Johnny Cash), plays video games.......all things that the pediatric neurologist gave us very little hope of ever happening.  I cannot wait to hug Erin and thank her for the gift of my son.
Jamie 10 years old



Monday, July 29, 2013

Here I Raise my Ebenezer

Today, as I was sitting in my closet sorting clothes, the events of the past year hit me like a ton of bricks.  So many things have happened, so many things have changed, so many struggles, and so many huge blessings.  Almost like a silent movie, image after image, played in a steady stream, through my minds eye.  I started to tear up at the enormity of it all and I knew I needed to document it, to set it all down in writing,as an ebenezer of God's amazing, divine grace.  An ebenezer is a commemoration of divine assistance according to Miriam Webster's Dictionary.  In the Bible, Samuel had called on Israel to repent of their sins.  Their enemies, the Philestines, heard of this huge gathering Israelites , and decided to use it as an opportunity to attack.  But God showed Himself great and powerful and won the Israelites a great and wondrous victory.  "Then Samuel took a stone, and set it between Mizpeh and Shen, and called the name of it Ebenezer, saying, Hitherto the Lord has helped us."  I Samuel 7:12 This blog is my personal Ebenezer, my banner staked in the ground, saying "By God's grace and God's grace alone, we have overcome."

It all started August of 2012, when we very unexpectedly had to leave our church, a church we were very involved in and loved.  I am not going into the details of the how's and why's on this blog, simply because that is superfluous to the point.  The point is, I was shattered and broken-hearted.  I am not a new Christian; I have seen my fair share of craziness and pain in the church.  After all the church is made up of us crazy, fallible humans.  For some reason, this particular thing, broke my heart as nothing in my previous church experience had.  We tried to get back into church but the more we visited different churches the more heart broken I became.  The church I loved, the church I grew up in and wanted my children to experience, the community of strong, faith filled Believer's, Sunday night and Wednesday night services, Sunday school, and real genuine heart-felt worship, no longer seemed to exist.  Instead we kept coming across what seemed to be a great big production of church; lots of lights, sermons timed down to the minute, worship that was hard to differentiate from a concert, children's church that entertained more than it taught.  I wept many, many tears of heart break and disillusionment.  I was not disillusioned in Christ, but my heart-broke for his bride.
Along with the heart break of losing our church, came the hurt and pain of lost relationships.  We live in a small town and that leaves very little room for healing.  Rumors fly, people speculate and the pain is compounded.

Time stops for no man and soon I was swept up in back to school madness, Holiday preparations, birthday parties, and all the extra planning, shopping, trimmings and trappings that go along with that.  In the midst of it all, I started having some serious health issues.  Because of some of the medications I am on, there was serious concern that it could be my heart.  I was admitted into the hospital over night, had many, many appointments and tests,and was ultimately blessed it was not my heart but another serious condition I had already been diagnosed with, rearing it's ugly head.  Blessedly, a change up in medication resolved most of the symptoms.
 Then it was Christmas.  What a fun, blessed day.  Things seemed to be working themselves out.  I was still heart broken but I had my wonderful family.

Then the bottom fell out again.  On December 27th my husband decided to make breakfast (he loves to cook big breakfast).  He put a pot of oil on the stove and left it on high, forgetting about it for a few minutes.  The pan burst into flames, not little flames but flames hot and high enough they melted parts of our hood above the stove. The fire was rapidly burning out of control, and our fire extinguisher would not work (lesson to be learned here folks:check the pressure in your fire extinguishers regularly.).  I was busily getting the boys out of the house and starting to call 911.  My husband, meanwhile, bravely carried the flaming pan of oil out of our house, so that we didn't lose the house.  It could have been way worse but he he did receive 3rd degree burns on his hand from the radiant heat of the pot.  He is a computer programmer, which of course uses his hands, so he was out of work on disability for six weeks.
We were so blessed his hand healed well, and did not become infected.  He has a nasty scar but of all the things that could have happened we are so blessed that was the extent of the damage (that and the need for a new stove, but I'm not complaining.  I love my new stove;)

During his six weeks of disability, my husband decided it was time to start looking for a new job.  He was blessed with an awesome job but they were downsizing.  His job was relatively secure but the downsizing had created a very stressful work environment.  
A week after he returned to work, our oldest son awoke in agonizing pain.  I rushed him to the hospital.  He had to have an appendectomy.  The surgery seemed to go well, so they released him the next day.  Unfortunately, we were back in the hospital the next day.  Paul had an incision site infection.  He was placed on antibiotics.  The infection healed but Paul was still in incredible pain.  He was stuck in one position on the sofa for nearly four months.  We went to doctor after doctor, had test after test, and yet no one could tell us why he was in such pain.  Paul's school was incredibly understanding and bent over backwards to work with us.  In the end, we had to homeschool him the last month of school.  He simply could not be there more than twenty minutes before the pain had him immobilized.
While all this was happening, my husband was still job hunting.  He had many, many offers and interviews but none were what he was looking for.  He was still working in a very stressful job and had the added stresses of looking for a job and a son who was in chronic pain.

Everything was closing in on me.  The incident at the church had raised hurts and pains from my past that needed to be dealt with.  The stresses of our marriage were coming to a head, not to mention the everyday stresses of being the mom of five boys, four of whom are on the autistic spectrum, and having an autoimmune disease myself.  I was a mess!  I put myself in therapy.  It was the absolute best decision I have ever made for myself!!  I cannot tell you how much this has revolutionized my life. I. AM. NOT. THE SAME PERSON!! 
I am blessed with a qualified, Christian therapist.  She challenges me, listens to me and prays with me.  

Then God moved!  Well to be honest, I believe He started moving with me going into therapy.  My husband found the perfect job he had been looking for.  He fits there perfectly and is challenged (boredom is one of the things that drives my husband bonkers).  He has found friends there.  I have never seen him this at peace in a job.
Both of our vehicles died within a month of each other.  We were kind of freaked out at how we were going to handle this but God made a way.  We bought two new vehicles, one brand new and the other had only 11,000 miles on it,  in a week!!  I cannot tell you what a blessing it is to have safe, reliable vehicles.  Not only are they reliable, they have all the extra's that I never imagined we would actually have, things like leather seats, seat warmers, remote starters, navigation.........the list goes on and on.  When God gives a gift, it is above and beyond what we could ever imagine.
Suddenly there is so much more peace in our home.  My boys have started maturing in ways that I had honestly started to give up on.  We have been able to go on several mini-vacations this summer.  In the past, this just wasn't an option both financially and because our boys just couldn't handle it.  Autism and change, even fun change, don't mix well.  It is awesome to see my boys growing and maturing.
Paul has finally started healing.  Most days he spends pain free, though he does still have the occasional pain attack.  The doctors never really discovered what caused all the pain and distress.  Many, many people have lifted him up in prayer.  I believe God has heard those prayers and is healing him.  Sometimes healing doesn't happen in our time, quickly and instantly.  Instead God uses the process to develop our character and spiritual walk.  I have seen both develop greatly in Paul through this process.

One last huge change is happening.  We are moving. That's right, the kingdom of Skiff is moving into a new castle.  We have been in this house for five and half years (longer than I have lived any place in my entire life) but it is time to move.  This is a very good thing for us.  I'll have more details concerning this in a later blog.

I finally feel healed enough to start church hunting again.  We have yet to find the place where we fit (our boys special needs makes this a little more difficult).  However, I finally, for the first time in a year, feel ready and EXCITED to find our new church home, our tribe if you will.

This past year has been hard, difficult, heart wrenchingly painful at times but that isn't what stands out the most when I look back.  What I see shining through all of it is God's amazing grace and provision.  This is my Ebenezer, my testimony of God's continuing victory on our behalf.   I'm going to end with the second verse of one of my favorite hymns, Come Thou Fount of Every Blessing by Robert Robinson

Here I raise my Ebenezer;
Hither by Thy help I'm come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood.


Tuesday, July 16, 2013

Have Truck Will Travel -Part 2

Finally we crossed the border into New Mexico!!! There was much rejoicing in the Skiffmobile 2.0, or as the boys call it, The Zebra. 
We drove into downtown Hobbs, and though it was quite artsy and fun, NOTHING was open.  Now, we had driven all the way to New Mexico with the promise of food for these boys.  Let me tell you, we were gonna find food come hell or high water!!  We drove around and finally found the food district (as I like to call it).  There were restaurants galore: steak houses, Mexican, Seafood, chicken, Chinese, and so many more.  So where did we eat, after driving ALL day from just outside of Ft Worth, TX all the way to exotic Hobbs, New Mexico, you ask?  We ate at Burger King of course.  That's right, 444 miles, 6 hours of driving, to eat at Burger King....with a play place! WhooHoo!!!  We Skiff's know how to live the high life.  As we were dining on our gourmet Burger King, my husband was barely coherent, he was so exhausted.  I could tell that there was no way he was up to driving back home.  I could have driven for a while but once it had gotten dark we'd be out of luck because I have terrible night vision.  Basically I would have been able to drive us back into the shinnery (the scrubland) and we'd have been stuck for the night, with all the lovely creatures that live out there.  Coyotes do not make great camping partners, in my humble opinion.  There was no choice, we needed a hotel for the night.  Hubby is blessed with a pretty flexible job so he was able to call into work for Monday without any major issues.  It helps that he goes in early and works late almost every day.  Lucky for us Hobbs had a plethora of choices in the hotel department.  We found a great hotel at a reasonable price, loaded all the kids back into the Zebra and headed to our suite for the night.  The boys had been stuck in a vehicle for two days straight at this point.  There was no way they were going to sit calmly in a hotel room.  They were literally bouncing off the walls (as in Benny was running into one wall, turning around and running into the other)!  We decided that the only way we would have a modicum of peace was to head over to Walmart, our clothier of choice on these impromptu Skiff getaways, pick up some swimsuits and other basic necessities and then spend the evening in the pool and the hot tub at the hotel.  Bliss would once again reign supreme.
In true Skiff style, we stepped out of the hotel to find a dust storm raging.  Never in my life have I seen anything like it.  There was fine dust blowing everywhere, so thick it was hard to see a few feet in front of you.  The wind whipped the dirt and sand at you like tiny bullets.  It coated the roof of your mouth and got into your eyes and nose.  Nasty, nasty stuff.  We made it to Walmart only to see the parking lot strewn with carts, blowing every which way.   Hubby parked where it would be unlikely for the truck to be hit by anything and we made our way through the store.  After digging through the racks and finding everyone's correct size  we headed to the front to check out.  As is the Walmart way, there were only a few registers open, with lines that nearly wrapped around the store, each moving at a snail's pace.  We were all hot and tired and cranky and just wanted to get into the dang pool already!!  Hubby and the boys went out to the truck whilst I waited in the Walmart line, like the seasoned pro I am.  FINALLY, it was my turn to check out.  I swiped my card and asked to get cash over because I need to do laundry at the hotel.  We had no extra clothing on this obviously well thought out and planned vacation.  After all, when we had left on Saturday we were only planning on going to the Peach Festival.......which shall be spoken of no more of in Skiffland.  So let it be written, so let it be done!
I told her I needed my cash back in two fives and a ten.  She said "I'm sorry ma'am we only give cash back in twenty dollar increments."  "I understand.  Can you give me a ten and two fives?" I asked.  "No ma'am.  As I said, we can only give out cash in twenty dollar increments."  Fine whatever.  I'll take the twenty.  Ain't nobody got time to school you on basic math right now! I think (Note I DID NOT SAY THIS, I simply thought it.  I'll repent later.  No one's perfect y'all).  I thanked her for my twenty and finally made it back to the truck.

We managed to get back to the hotel while the dust storm still swirled around us.  We wrangled everyone into their swimsuits and down to the pool.  It was worth every freakin' minute at Walmart, let me tell you!  The spa was pure bliss.  Hubby just laid back and completely unwound.  The kids all swam and swam and swam.  Then the most amazing thing happened: Jamie got into the spa.  Water has always been one of the things that calms Jamie when he is getting worked up.  After two days in the car he was very worked up.  On a scale of 1-10, Jamie was probably at a 9.The moment he stepped into the spa he completely relaxed like nothing I have ever seen.  He was a completely different kid after a few minutes.  Forget a pool, I told hubby, we need to get a hot tub!!
After everyone showered, I gathered up all the laundry and headed to the handy dandy hotel laundry facility. I took out the  $20 bill that the Walmart cashier had so graciously insisted on giving me.  But alas, the hotel change machine only took ones and fives.  I wish I had thought to ask the Walmart cashier for fives, oh wait I had! sigh.  I headed downstairs to ask the receptionist for change for the twenty.  "I'm so sorry." she said, not all that apologetically "I've had three people pay in cash and now I don't have anything smaller than a fifty.  I'm sure the Walmart down the street will give you change."  I thanked her and headed upstairs to beat my head on a wall. I dug through every pocket in my purse and my husband's wallet and came up with two fives!  Thank you Jesus!!!!! I had two loads to do because all my Peach Festival nasty clothes had to be washed in their own special load.  After buying soap for each load I was going to be short $1.75.......ugh.  I threw the nasty load into the washer and headed out to the truck to find $1.75 in quarters because there was no way, no how, that I was going to head back to that stupid Walmart for change!!! Had we been in the old Skiffmobile this would have been an easy task but this was Skiffmobile 2.0, a far superior vehicle in every way but there wasn't loose change floating around under seats!  I found one quarter.  I still needed $1.50.  I was so tired.  I REALLY didn't want to be on a quarter scavenger hunt, I just wanted to curl up and go to sleep!  I found .50 in my purse front pocket.  Now I was short only $1.00.  It might as well have been a million!!  My nasty load was done and low and behold I found a dollar in the pocket of my freshly washed capris.   "PLEASE take this slightly wet, crumpled dollar." I silently begged the change machine.  It took it with no problem!  There was singing, there was dancing, there may have been a tear or two shed!!  Miracles do happen, even in hotel laundry rooms.  Finally around 1am , I piled my weary body into bed.  I slept soundly knowing all the laundry was clean!
The next morning we awoke to a monsoon, a literal monsoon!  It turns out in New Mexico the dust storms (also called a haboobs, according to the hotel staff) are often followed by a week long monsoon! 
The boys and hubby went downstairs for breakfast and I took the opportunity for a leisurely shower.  I actually took the time to put on my make-up BEFORE going to breakfast!!!  That right there is the true sign of a vacation in my book folks!  
By the time I made it down for breakfast most of the boys were already done eating.  I got to hang out with Sam and Jamie for a while and received all kinds of compliments on their behavior.  Proud mommy moments!  Then I was alone, at the breakfast table, with my coffee, texting with my sister friend.  Oh the luxury!!!!
It was time to hit the road.  The monsoon followed us the whole trip home.  We stopped a few times for meals, gas and bathroom breaks but mostly we were pushing to get home.  A gas station, somwhere in west Texas, had cool hand made memorabilia like wiggly snakes,  carved wooden horned toads, and bobble head armadillos.  The boys, who were driving us crazy in the truck by this point, picked out some souvenirs and quieted down for a while.  We pushed on, making pretty good time despite the rain. The rain was coming down in sheets, when we hit Fort Worth, at rush hour, in tons of construction.  As we were stuck in traffic, on an over pass, I got sick, again!!   Luckily, we were able to get off the road in downtown Fort Worth and I made it to a restroom.  I have decided Fort Worth doesn't like me and just  makes me sick.  It was an unexpected detour but my husband, who is a city guy at heart, really enjoyed seeing the city.  Then we were back on the highway again!  The construction made for an impossibly complicated trip.  None of the exits were signed well and traffic was at a stand still.  Once we made it to Grapevine, TX we decided to just get off the road, go to the mall food court for dinner and wait out traffic.  The kids had an absolute blast.  They each ordered what they wanted for dinner and then we went to the Legoland Discovery Center store.  Sam, my Lego maniac, was in absolute heaven.  They spent some money they had earned and it was time for the last, blessedly uneventful,leg of our trip.
The Bass Performing Arts Center, Fort Worth, TX
So what started out as a simple day trip to The Peach Festival, ended up with an 888 mile drive, two hotel stays, EMT's being called, the need for Depends, vomit, three desperate wardrobe changes  a dust storm, a monsoon, an amazingly heroic hubby, ghost towns, gas adventures, laundry mishaps, fun, laughter, beautiful scenery and  family memories that will always be treasured.  This is the Skiff life.  This is my life and I wouldn't trade it for the world!!!

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