Changes

The winds of change are once again blowing.  I, and my entire family, are facing another big change.  But this time it is a (hopefully) good change.  One that we, as a family, have chosen.  It’s not been forced upon us by medical necessity….we have chosen, together, to embark upon this new path.  What, you wonder, in the world am I rambling on about?  Well, let me tell you….

I have accepted a position with the Green River Area Down Syndrome Association.  Beginning January 1, 2009, I will be the new Executive Director of this organization.  My good friend Cindy has decided that she needs a change, and has officially resigned from this position. 

I am excited about this!  In some ways, it feels like “coming home”.  One of the biggest changes that came into my life with Jonah’s deteriorating health two years ago was the reality that I needed to make some important decisions.  Since I walked around in a daze most of the time, not certain even what day it was… I resigned my positions on the board of both the DS group, and Dream Riders of KY, the horseback riding program which allows Jonah to ride Jimbo.  Out of necessity, my focus moved inward…on Jonah and our immediate family.  There just wasn’t time in my days for anything else.  And I am very excited and happy about the reality of once again being involved, and “up to speed” on that which is happening in the world of Down syndrome. 

One of the very biggest blessings about this position is the flexibility.  There are several very important responsibilities which come with this position….but the absolute best thing is that I will work from home, about 95% of the time.  How great will that be?!?!  The position is part time, so that, too is a blessing.  I don’t care how organized or efficient I try to be…I simply cannot imagine working full time again.  I don’t know how in the world I ever did it…and my hats are off to you moms who are doing it. 

So, after the holidays I am going to be working again.  You can’t know how strange that sounds to me.  Only this time…I am working for me.  On my terms.  The financial rewards are there, yes.  And very appreciated, and much needed.  But the real rewards are all mine.  The opportunity to stretch my intellect a bit.  Use my rusty technical and people skills.  The chance to focus on something outside the inner circle of Jonah and my immediate family for a few hours….the chance to offer something of importance to other parents of children with Down syndrome again…. to say that I’m a bit excited is probably an understatement! 

And today I am thankful and grateful for the changes that are in store for me.  I am looking ahead with anticipation and joy.  Sometimes I wondered if that would ever happen again.  Thank you God for this time of calm, peace, and health for Jonah.  And for the good changes coming our way in the new year.

What changes are you looking forward to in the new year?  Can you believe that it will be here so soon?  My gosh, where has 2008 gone?!?!

I’m thankful for….

This is the time of year that always has me reflecting upon my life.  The good, the bad and the ugly, so to speak.  We have been trudging along in the darkness, with fear, confusion, and anger our main companions.  These past  years with Jonah have been hard.  Too hard for me to even explain.  Unless you’ve faced the very real possibility of your child’s death, or the actuality of your child’s death…you can’t understand.  But I am so thankful for the friends and family that TRY to understand…who try to empathize, and who genuinely care…. We, as a family, have been through the ugly. 

We’ve faced the bad, we’ve triumphed over the ugly, and we are intent on finding the good.  And it is becoming easier and easier to find that “good”.  And this year we have more than ever to be thankful for, more blessings than ever to count… And today I want to share some of those blessings with you.

I am thankful for…

My husband.  The strain, the bickering, the coldness, and the exhaustion of these past two years have made themselves known in our marriage.  Fear and stress and confusion don’t bring out the best in me, and I have been MORE than “ugly” during these years.  But today I am thankful for the reality of Larry’s love and committment to me, our marriage, and our children.

My children.  These years have been hard on them, too.  But today I am thankful for the reality of their happiness.  More than anything or anyone else in my life, Sarah, Jacob, and Levi have shown me the “light” during these dark years.  They’ve taught me far more than they will ever know.

Jonah.  Oh my goodness, where do I begin with him?  The fact that he is alive today speaks volumes about his strength, his willingness to fight to live, and his purpose.  These years have been horribly painful, scary and hard for him.  And he still lives his life with a smile on his face, a song in his heart, and his “good” displayed prominently for all who care to see.  I am thankful for his health today, and refuse to spend time wondering about what tomorrow will bring.  Today is enough.

And that brings me to my biggest blessing.  The reality that I can say “today is enough” and MEAN it.  I’ve learned that I CAN be happy and content and peaceful in today…regardless of the storm clouds that hover on tomorrow’s horizon.  TODAY IS ENOUGH, and I am thankful for that reality.

God has worked miracles in my life on many occasions.  What may seem trivial to you is my miracle.  And I selfishly gather those moments of miracles to me….and never fail to give Him the thanks and glory for them.

Don’t forget to click on the button on the right side of the screen to read more stories of blessings.  And tell me…what are YOUR biggest reasons to be thankful during this season?

Silence…

How does it make sense for Buzz Lightyear, Space Ranger, to ride on a stuffed unicorn?  Somehow, to Jonah, it makes sense.  And he plays endlessly…alone, without words or sound.  Lost in the world that only he can see………….

Jonah spends hours alone…splashing in the creek, throwing rocks, and exploring.  No words…no contact with others.  Lost in the world only he can see……Alone, throwing rocks into the creek, Jonah sits.  In the silence.  Lost in the world only he can see….

For years I battled the silence.  I stood on the outside, battering against the doors, pleading for a glimpse of the world only Jonah can see.  Convinced that hundreds, no thousands, of hours of speech therapy would one day “open the door” for Jonah.  That somehow, someway, he would break free from the silence and enter the world of “normal” communication.

What I missed all those years was the reality that the door was already “open”.  I simply needed to walk through.  In my quest to open the door I have missed some very important, very special communication opportunites with Jonah.  Jonah DOES communicate.  Sometimes with his voice, sometimes with sign language, and other times Jonah communicates through his silence.  You just have to listen…. and I am learning.  Slowly, slowly…I am learning to listen.  It is not the communication that I wanted.  Not what I worked for.  Not what I dreamed for.   But it is OK.  Learning to listen to Jonah through his silence has taught me to hear…not necessarily with my ears….but with my heart.  And that reality is far sweeter than my hoped for speech production in Jonah. 

Thank you God today for silence.  And the opportunity to “hear” the very important things Jonah has to say…

Christmas Traditions

Over to the right side of my page, you’ll notice a new button.  Click on this button and it will take you to Christian Women Online, where we are celebrating the holidays EVERY Thursday for the next six weeks.  Today is the first of those Thursdays, and the theme for today is Holiday Traditions.  After reading my traditions, click on the button and go on over and check out some other Christian women sharing their traditions.  And for those of you just itching to start blogging…here is your chance to jump in and get started!

Christmas has become so commercialized in the United States that Jesus himself must have a hard time seeing that the day is supposed to be in honor of His birth.  Frantic people rushing around, watching the days slide by in a frenzy of parties, gifts and credit card bills often are too exhausted and too distracted to enoy the true meaning of this season.  As Christians, we celebrate December 25 each year as a symbol of the day of our Savior’s birth.  When we strip everything else away, that is the only reason we should be celebrating.  And this is often one of the best times of year to spread the News that Jesus did come to Earth, He was crucified on that cross, He did rise again after three days, and He will save you from an eternity of judgement.  We need to be on the lookout for those opportunities to witness and share the Gospel, especially during the holiday season.  People’s hearts are softer, hurts are bigger, and people in general seem to “looking”.  Let’s not be so busy that we can’t help them “find”.

For our family, there are a few holiday traditions that we have developed over the years.  One of our favorites is participating in the Operation Christmas Child shoebox ministry.  We pick our child(ren) and their ages and genders, and then we spend a day shopping.  All of my children have shown tremendous understanding of exactly what kind of living conditions the children who receive these boxes are in, and the choices of toys and goodies reflect that understanding.  I am always amazed to see my youngest child pondering the choice of a toy, and then deciding that it wouldn’t be practical, or hold up to repeated use.  On that Sunday morning when the church deposits their boxes on the steps of the altar, my youngest son is amazed, and feels certain that “every kid in the whole world” will now receive a box!  The lessons learned by my children through this ministry are priceless, and the memories I have accrued of my children laboring over these boxes are precious.  Our entire family is blessed to participate in this ministry.

On Christmas Eve, after attending the candlelit service at church, our family gathers at my sister’s house.  There is lots of good food, laughter, and a carol or two is usually sung at some point.  Before the gift exchange, everyone gathers around and one of the children reads the Christmas story from Luke.  The honor of reading the story has changed hands over the years, and before any of the children could read, my sister always read the story.  We spend some time talking about Christ’ birth, death, and resurrection.  This is one of the most precious traditions to me.  It is a true blessing to hear the story read in the clear tones of a child. 

One of my children’s favorite traditions is that Saturday in December when we all crowd into the kitchen and make candy.  We make pounds and pounds of candies, dozens of cookies and entirely too many goodies!  We spend the day making, packing and labeling the treats.  And all of the kids enjoy gifting everyone they know with a sample of our homemade treats.  We always have Christmas music playing in the background.  Our tastes are a bit eclectic and range from “Grandma got run over by a reindeer” to Handel’s “Messiah”.  We usually listen to them all during the day!  The joy, laughter and teamwork of this day, coupled with the feel-good emotions of making something to give….help keep us close during this very busy season.  It’s a day that we look forward to all year long!  Our recipes have evolved over the years, and we have tasks that even the youngest child can perform.  This is a family day…and that means everyone!

Our holiday season culminates on Christmas Day.  All of our socializing, gift giving and holiday gathering is over.  We arrive home late on Christmas Eve and fall into bed exhausted.  Christmas Day is for our immediate family only.  We don’t visit, we don’t have guests over…we spend the day in our PJ’s, eating, laughing, playing with new toys….and celebrating our Savior’s birth with our family.  The most important people on this Earth to me….and we spend the entire day laughing, loving and playing. 

So come on and share with me some of YOUR family’s favorite Christmas traditions.  What do you enjoy most about this season?

Acceptance

While corresponding with a new friend recently, about the period of time surrounding the birth of her son with Down syndrome, I was reminded of that period of time surrounding the birth of MY son with Down syndrome.  And today, what I want to write is especially for those moms (and dads!) who have children with special needs.  It is a topic which, in my opinion, rarely gets the attention it deserves.  I want to talk about acceptance.  Not necessarily acceptance of a diagnosis, per se….but acceptance of our children.  And they are two very different things…..

When Jonah was born we had absolutely no idea that he had Down syndrome.  There was some concern that he had a structural abnormality with one of his kidneys, but the true diagnosis was missed by the ultrasound technician.  The markers are there on the video of the ultrasound taken just weeks before Jonah’s birth….and they were blatantly misinterpreted.  Today I can thank God for that blessing.  I don’t envy the parents who opt for prenatal testing, get a diagnosis, and then worry their way through the rest of their pregnancies.  For me, ignorance was a true blessing.

So, in my ignorance, I was totally unprepared for the reality of a diagnosis in my child.  (Don’t you hate that word?  I do…but it applies, so I will continue to use it.)  Jonah’s birth was marred by my first glimpse of him, and the fears that glimpse awakened….I KNEW something wasn’t “right”.  But had no idea what was “wrong”.  And that first night after Jonah’s birth, when everyone was gone from my room, Larry was home tucking the other kids in bed, and it was just me and God….let me just say that it wasn’t pretty.  God has big shoulders, and that night I tested His strength to the breaking point, believe me.  I hurled every fear, every accusation, every broken dream that I was experiencing right onto Him.  In anger and defiance.  In blatant disregard for the reality that He is in charge, and not me.  Endlessly, I raged, I cried, and screamed and proclaimed His unloving, uncaring attitude towards me….by giving me this child.  My rage changed to pleading…and I made more un-keepable promises to God in that one night that you would think possible.  Dear God, if You will just make this go away, I promise ________________…… you can insert any outlandish promise here, cause I made them ALL that night.  Trust me.  I did.  And then came the self-pity.  God didn’t reach down and touch Jonah in the nursery and miraculously heal him….so He must be either uncaring, or incapable.  Yep.  You heard me right.  I questioned God’s ABILITY.  Blatantly disregarding the reality that I KNEW to be true…that He is ABLE to do as He pleases.  But, since He didn’t do it for me…it must be beyond HIs capability, right?  God and I had a somewhat strained relationship during the months following Jonah’s birth….So, I wallowed in my self-made pit of misery.  Certain that I would never laugh again.  Never feel happiness or joy or anything resembling normalcy.  I cried for myself.  I cried for my husband.  I cried for the changes that would be inevitable for my other two children.  I cried for Jonah…for what I perceived to be his “loss”.

And there were some very long months following his birth, in which I didn’t laugh.  I didn’t feel joy.  Darkness, fear and death were my constant companions.  To this day, I still cry when I remember the day, when Jonah was 10 days old and my parents had brought Sarah and Jacob to visit us in the PICU in Louisville.  I hadn’t seen my 3 and 4 year old “babies” for 9 days.  The ache in my breast was more than just the fact that Jonah was too weak to nurse, and my body didn’t know what to do with my milk supply.  I physically HURT with missing my babies.  My parents had brought the kids up for the day, and they were able to peek at Jonah through a glass wall.  Mostly, they were able to sit on my lap, and I was able to hold them.  They loved seeing the Ronald McDonald House, where Larry and I were staying.  To this day, they both remember it as looking like a “castle”….when it came time for them to leave, they were upset.  And started clinging to me and crying “Mommy, come home.  I want to stay with YOU Mommy.  Mommy….” Their tears and confusion and fears shattered my heart.  That is one of the darkest days in my memories of those months.  My parents and Larry literally pulled the kids off me, and carried them to the car.  I stood inside the door to drown out their cries.  The memory of their little tearstained faces and outstretched arms reaching back for me still rips my heart to shreds….

Several weeks later, my heart was ripped to shreds again when I had to leave Jonah lying in the ICU, recovering from his first open heart surgery.  Jonah had surgery on Monday.  Larry and I went home on Saturday morning.  Sarah and Jacob needed us every bit as much as Jonah did.  Jonah’s aunt and uncle came up and stayed with him, while we were gone.  But it was still physically and emotionally draining to walk away from his room, get in our car and drive away from that hospital…with Jonah still recovering inside.

Throughout the months of those first chaotic, trying-to-keep-Jonah-alive-with-midnight-runs-to-the-ER and-emergency-flights-to-Louisville-years, acceptance came.  I will never forget the spring morning, when Sarah and Jacob were in pre-school, and Jonah and I were playing in the floor.  Sunshine was streaming through the window, and Jonah was enjoying the warmth.  “Playing” was often another word for “physical therapy” in those days…. we were practicing on Jonah rolling over.  Jonah was 15 months old, and while he had been rolling over months earlier, he was recovering from a 2 week hospital stay which had weakened him physically.  So we were re-learning how to roll over.  With no help from me, Jonah rolled over, and got himself to a sitting position.  (any other moms remember the 3 point sitting position?)  He looked me in the eye and laughed out loud.  That is the day that acceptance came to live in my heart.  The joy and pride shining from Jonah’s chocolate brown eyes that day melted the layers of ice that my shredded heart had accumulated.  And right there, sitting in the living room floor, watching Jonah practice his newfound skills….God and I had a talk.  This time there was no anger.  No accusations.  No finger pointing and no blame.  For the first time that day, I looked at Jonah and saw Jonah.  I didn’t see the Down syndrome.  It was still there, a very real and present diagnosis.  It was simply invisible to me for the first time. 

So it took me a long time to accept Jonah just as he is.  A fearfully and wonderfully made child of God, just as my other three children are.  And the forgiveness that I sought, and was granted by God, for my earlier behavior was made all the sweeter by the reality of Jonah’s place in my life.  There is no “right” way to come to acceptance of your child and his/her diagnosis.  There is no “wrong” way to come to that acceptance.  There is just the reality that God WILL bring you to that place of acceptance…if you will let Him.

As I look back now at those early months of Jonah’s life, I am so thankful that the shame is gone.  I’m sorry that I wasn’t able to immediately accept Jonah.  But the shame of that inability has been stripped away.  And is now a mere memory.  And Jonah’s laughter and pride in his achievements today still bring the same joy and thankfulness to my heart today as they did all those years ago. 

Thank you God, for the gift of Jonah.

Left Behind Audio Theater

I stumbled across this really, really cool site recently.  Probably everyone reading this already knows about it, and as usual, I am the last to find out.  Hey people, share these cool things with me, would ya?  I’m kinda busy here with the kids and chickens and housework and such.  I don’t KNOW about these things unless you TELL me…or I stumble across them.  ‘Kay, thanks!

In the Garden Radio is a Christian radio station where you can find broadcasts of various Christian radio shows.  I don’t know who all is listed there, cause I got sidetracked on the Left Behind series, so I can’t say for certain that they’re all GOOD.  I DID see Joyce Mayer’s name on the list, and all I can tell you about her is to avoid her show.  Anyway, this post isn’t about Joyce, or anyone else you might find on this site.  It’s about the Left Behind Dramatic Audio Theater presentation of ALL twelve of the Left Behind books.  WOW!  And it’s FREE!

I love the Left Behind series.  Now, I don’t necessarily agree with all of Tim LaHaye’s views on eschatology.  However, when I overlook those, I really, really LOVE this series of books.  The movies, on the otherhand, really, really stink.  But, I digress.  This series truly has impacted THOUSANDS of individuals for Christ.  And I enjoyed it enough that I purchased the series for my home library.  I love books.  I really do.  And I only purchase books that I am certain that I will want to read…again and again.  Otherwise I borrow books from friends, or from the library.  Because if I BOUGHT every book I read…well we’d be bankrupt AND homeless.  Cause our home would be filled with books, with no room for US. 

But, I stumbled upon this website and was instantly hooked.  I hate listening to books on CD.  I do not enjoy listening to someone read to me.  Never have, never will.  I somehow get caught up in the speaker, and can’t concentrate.  Especially if they have a lisp, or a funny way of pronouncing something….. But, when I listened to the first episode of Left Behind done in DRAMATIC AUDIO THEATER….well, now I changed my opinion of books on CD.  The characters, the music, the soundeffects….it’s like your mind is the movie screen, and the sound is provided, but YOU provide the pictures in your head.  OK, that sounds weird, but it’s true.  I’ve now completed the series.  And let me say that this is the PERFECT choice for cleaning house.  I can’t tell you the number of times I’ve stood at the sink, washing dishes with tears running down my face.  The emotions that the books brought out were amazing to me.  However, it’s NOTHING compared to hearing the story in Dramatic Audio.  I’ve folded countless loads of laundry while laughing at something.  Cried while mopping the kitchen floor…laughed my way through cleaning Jonah’s room.  And now that I’m finished with the series…I’m experiencing letdown. 

Very often, while reading a series, I’ve felt like I’ve come to “know” the characters in the books.  And once the series is over, there is a bit of sadness.  As if you’re saying goodbye to friends.  But THIS goodbye has been so much harder….because the characters have become REAL to me through this audio series.  Unless you are an avid reader, I don’t expect you to understand…but trust me when I say it’s true.

So, I wanted to share this series with your.  You can find it at: http://www.itgmradio.com Go on, check it out.  Each episode is about 20 minutes in length.  Take your time, and ENJOY! 

So tell me.  Are there any series of books on CD that YOU’VE enjoyed?  Now that I know what I’m missing, I may just have to try another series…

Financial Peace University

Finances.  Ugghhh.  We all hate them.  We all procrastinate, putting off balancing the checkbook, cause we really don’t WANT to know how broke we are.  Or maybe that’s just me….anyway, Larry and I have embarked on a new journey.  A journey that, according to Dave Ramsey, will lead to happiness, lighter hearts, and financial peace.  I’m not certain that I’m entirely buying all THAT, but…

As things have settled down here at home, with no travel for medical care for Jonah, I couldn’t put it off any longer.  I HAD to sit down and add up the medical bills and credit card bills.  Credit cards are evil.  I just wanted to share that tidbit.  Over the two years that we have been travelling to Cincinnati with Jonah, we’ve too often found ourselves short of cash.  Need to stay a week in a hotel?  No problem, we’ll just put it on the credit card.  Gas is $4.50 a gallon?  No problem, here’s my credit card.  Food?  Credit card.  You get the picture…and when I finally bit the bullet and pulled all of our bills together at once, and added them up… I fainted dead away…..not really, but I sure felt like I was going to have a stroke.  I’m certain my blood pressure was off the charts….

So, Larry and I, and good ‘ole Dave, have come up with a plan.  And it makes sense.  Really it does.  It doesn’t matter HOW you get into financial trouble.  There are various paths.  I take little comfort in knowing that ours wasn’t frivolous spending.  At the time, it was necessary to ensure Jonah’s health.  But it matters not that the pile of bills sitting on the counter was accrued through perceived necessity or through stupid choices.  The result is still the same.  I can’t breathe when I get all the bills together at one time.  And we don’t want to live that way any longer. 

So we got to work on Dave’s plan.  Baby step one.  Check.  We have our “small emergency fund” in place.  And as hard as it’s been, I have not TOUCHED it for Christmas.  I really, really deserve a pat on the back for that one….anyway, we are now beginning the process of the “debt snowball”.  We’ve tweaked Dave’s plan a bit, to make it more applicable to our situation.  Basically what we did was sat down with all of our bills.  We decided that we wanted to be debt free (from these specific creditors, we’re not tackling our mortgage, that comes later in the plan) in 16 months.  So we figured out what we would need to pay each month on EACH of our bills in order to meet that goal.  Dave’s plan is a bit different, and targets ONE creditor at a time.  I’m too impatient for such a thing.  The principle is the same…the application is different in our scenarios.  Then we figured out how much money would be left over at the end of the month, making these new payments.  And we explained to the kids that we would NOT be taking a family vacation in 2009, and that they would be “surprised” at the financial changes for the year.  That wasn’t fun, let me tell you….

So, as we go along each month, I’m going to document our progress.  Because I can already tell that I am going to need some encouragement along this path.  And reading my progress can help. 

November ‘12 08  Each penny of income got a “job” to do BEFORE it came in.  Every penny is accounted for.  All bills are paid, with the new adjusted amounts to help us get out of debt in 16 months.  One month down… no unexpected bills yet, so emergency fund is intact.  No credit card usage AT ALL….Made changes to Larry’s 401k.  Planning December’s income now, not including the extra income from the 401k.  Whatever excess there is from that change will go to the hospital, split between Levi, Sarah and Jacob’s bills.

So, wanna come along on this journey to financial peace with us?  Check out www.DaveRamsey.com  He really does make sense.  And when we finish this journey, I’ll let ya know about the happiness, and lighter hearts… also make sure to check out the section on his site called “Stupid Tax”.  No matter HOW bad you feel about your current finances….you can ALWAYS find something here that makes you feel better!!