Camp 2011

Welcome back!  For those who are new to this blog, welcome! Please feel free to read though past posts... we are a family blessed with two natural children (Caleb - 8 & Joshua - 4) who happen to have Down syndrome.  This is my attempt to encourage other families facing the challenges of DS and educate those who are "on the outside looking in"!

Back in January I started looking into summer fun... call it tiered of cold, call it "planning", call it crazy... all apply....

Years before Caleb was even born a St. Louis pro-football player (Kurt Warner) was invited to be a "celebrity" on a game show (I am so bad at trivia I don't even remember what game show it was... oops).  Well, he won! The charity that Warner was playing for was a Christian camp for children with "special" issues - Camp Barnabas!  I thought, "Wow, that is so neat that he's helping THOSE kids..."  Not knowing we would be blessed with some of THOSE kids! (all I can do is smile and laugh now!)

So in January I started looking into this Camp Barnabas... only to find that there was just one session with any availability left!  A bit shocked, I emailed the contact person... her response... "if you at all think you want to send Caleb to camp you need to register today!  If you wait any longer there won't be a slot..."  Despite some questions I went ahead and filled out the application... the VERY detailed application.... "Ok... they have thought of everything.... that is comforting..."  Still a little unsure I called the office a few days later... that is when I learned that every camper (with issues) has a one-on-one volunteer who will be within an arm's length from their camper at all times... "Ok... ok... that sounds good too... I can let Caleb stay 5 nights at camp... Can't I?... I think I can..."

August 1st finally rolled around and we (my Mom, Joshua & I) were taking Caleb to camp!  All of Caleb's belongings (shoes to underwear, toothbrush to swimming trunks, camera to sleeping bag) were labeled and packed... paper work filled out... medications in a large zip lock bag... gas in the van... cell phone charged... "official" directions in hand... we where on our way to Camp Barnabas!  Five hours later we were pulling off the interstate...

Waiting for gates to open!

We arrived almost 45 minuets early.  So, we decided to just see where the gate was and then "drive around a bit" to kill some time... Well... the line was already 15-20 cars long!  So, we joined the line... excitement was in the air... a few girls reunited and were hugging, laughing, and singing.  They quickly got Caleb and Joshua to join the fun... parents were smiling and talking... the line of cars was never ending...  The time had come... the gates opened!

New Medical Building

The organization of the first day was beyond amazing!  Not to mention the facilities were top notch!  We were greeted by Mr. Teas (co-founder).  He put a name tag on Caleb's back and a star in our window (witch indicated Caleb was a first-year camper)... as we drove in a lady saw the star and hopped in the van with us... she told us how the process would work and that she would help walk us though it... At the drop-off spot a swarm of young people unloaded the van and helped Caleb get out... soon we were walking down the hill into the "welcome zone"... some where in there Caleb's "buddy" found us... This massive crowd yelled and cheered as each camper was announced!  Caleb does NOT like loud noises, so he covered his ears... someone in the crowd yelled, "Happy hands!" Just like that the crowd went dead quiet but their enthusiasm did not miss a beat... It was like someone hit the mute button on this massive group of people! 

Caleb & Jonny

Caleb was ushered to his cabin while I checked in his medication... the organization of this process was astounding.  For every three cabins there were at least 3 medical personnel. They went though all of Caleb's meds and made notes of how and when each should be given... then I was off to say good-by to Caleb... He was waiting in cabin B2 with his "buddy" Jonny.  I was greeted with a, "Hi, Mrs. Caines. I am Jonny."  (Wow!... a young person using Mrs. ... come on that is impressive in it's self!)  We talked for some time... Jonny even pulled out a paper with a list of questions!  I soon learned that Jonny is a runner (SCORE!), because Caleb is a "runner" too (just normally not in the right directions)!  I finally said, "Caleb, I love you!"  And I left...

Caleb & Jonny swimming!

Yes, of course I cried... no, no, no... not sad tears. In fact, it was quite the opposite! I cried tears of "praise"... tears that only come when you are SO blessed there's simply nothing else to do... All of these people (hundreds of people) were volunteering their time to make camp possible for my child... for my Caleb!  I left knowing Caleb would be just fine... I left knowing that there are many, many years of memories to be made here by my boys... I left knowing that God had placed this dream in the hearts of so many people... I left knowing that His hand was upon this place... I left knowing the only fear I had was that Caleb would not want to leave! (a very true prediction!)

Caleb on a trail ride!

As we drove away, I turned to my Mom and said, "I feel like I just dropped Caleb off at the rich kid camp!"  We laughed and drove off in total & complete amazement of the this place called Camp Barnabas!

Now, over a month later... Caleb is registered for Camp Barnabas 2012!  Every time we mention camp Caleb says "YES!" or "That's right!" or "Swimming!" (his favorite activity at camp) 
Please check this camp out (for your kid... to help send a kid... to volunteer... or just to be snoop...) http://www.campbarnabas.org/

Lord, thank you for Paul and Cyndi Teas who followed Your calling... the calling to have a camp where "being different is normal.." Thank you for people like Jonny who gave up a week of their summer to make Camp Barnabas possible!  Lord, I am so blessed to see Caleb excited about Camp Barnabas.  I am simply amazed at Your camp and Your people there!

Healing Tears

Welcome back!  If this is your first time reading this blog, Welcome!  We are a family with two natural sons (Caleb 7 & Joshua 4) who have Down syndrome.  Yes, the picture needs to be up dated... sigh... None the less, feel free to read through earlier posts.

We are blessed here in the St. Louis area to have a fabulous Christian radio station (Joy FM http://joyfmonline.org/).  Personally, I am not one who is gifted with any musical talent, but music touches my soul in a way that nothing else can.  No words are adequate enough to explain how a song can speak to me... So many times the artists played on Joy FM can sing what I am unable to express myself.  At times I honestly sing their songs as a prayer or expression of love to God because my "unartistic" mind could never do so it's own...

One such song is "Blessings" by Laura Story (I post the link later on).  The first time I heard this song I had to turn it off because I started to cry... and it was a day that I just DID NOT want to cry (grrrr)... Of course, I finally allowed myself to listen and to cry.  Some times I have to be in the right mood for "those" types of  tears... I call them my healing tears. The chorus goes, "Cause, what if your blessings come through rain drops. What if your healing comes through tears.  What if a thousand sleepless nights are what it takes to know you're near."

So many moms (dads too) can relate to sleepless nights!  There is a smaller population of parents who can relate to grief-stricken sleepless nights... you are out there I know, because some of you are my friends... some of you I have cried with... some of you have comforted me... some of you have begged for the same things that I have...some of you are walking a road that is far more difficult then my own... some of you are in that "fog" now!  The truth is there may not be an answer to the endless why's or how's... if there is one thing I have come to understand it is this: there are still BLESSINGS!

Before we got the "official" diagnosis of Down syndrome for Caleb we asked the Elders of our church to pray for Caleb's healing.  They did... but God choose not to answer that pray in the way we wanted.  Rather, God choose to give us a greater gift - Caleb with Down syndrome!  Little did we know that we would be receiving another blessing of Down syndrome when we had Joshua... I begged God to heal Caleb... rather He healed me... I spent many sleepless nights with a very sick baby Joshua... God gave me strength when there was just none left in my body... I have cried tears of pain for both of my boys... but I have cried just as many tears of joy - wondering why I was chosen to be blessed with two truly amazing children with Down syndrome! 

All of my tears (anguish, joy, fear, amazement, shock, love...) have in some way produced healing in my life.  The song "Blessings" - though not written by me nor for me - says everything! http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related

Lord, I know my boys are a blessing!  Thank you for giving us the gift of Down syndrome.  Thank you for the tears that have healed my heart.  Lord, thank you for the "rain" in my life that allows me to see how truly merciful you are!  Thank you!

The Art of Simpilicty

Welcome back!  If this is your first time joining us, Welcome!  Please feel free to browse past posts.  We are a family with two natural sons (Caleb 7 & Joshua 4) who both happen to have Down Syndrome!  Our boys are a great blessing but with great blessings comes great responsibility (or something to that effect)!

I was raised in a "family on the move".  We were ALWAYS busy (soccer, gymnastics, track, church groups, Girl Scouts, out door adventures, honors clubs, road trips, and the never ending remodeling of the home stead... you get the picture)!  This to me was the picture of a healthy, well balanced family... And it really was just that.  I had a very rich and blessed childhood!  Naturally I dreamed of this sort of family life (minus the remodeling, of course) for my own children... but with Down syndrome came a few more challenges than what my family faced "back-in-the-day"...

We, Frank & I, have learned (or are learning) the art of simplicity.  The way Down syndrome has affected our boys requires us to slow down the pace.  In other words, there is no such thing as an "all-day" event.  Both boys fatigue quite easily, producing very tired children after an hour or less of any given activity (walking, swimming, hiking, playing).  One statement that has become a "staple" during family outing is: "Let's quit while it is still fun!"  Our thought is to leave on a good note, before the point of total exhaustion... for a melt down is sure to come (if not several melt downs).  It would be incredibly easy just to say, "Forget it!  It is too much trouble to take the boys any where!"

But we ABSOLUTELY see value in allowing our children to experience new and age appropriate activities! In the past few months we went on a few new outings.  We took the boys to the movies!  Once a month a local movie theater offers a special needs showing of a family movie.  This means the lights stay on and volume is turned down... Awesome!  Frank can not wait to have a "guys night" at the movies with his boys!  But this will not happen with out some very purposeful "training".  So we will continue these special showings until the boys learn how to set in their seats the entire movie, and how to be quiet... Trust me this will take some time (a few years even), but it will be well worth the effort!  The movie went better than expected... however, we did not go out to eat after wards... We ended on a positive note, no need rune that!

We also took our "maiden voyage" to Chuck E. Cheese.  Yes, we have been invited to birthday parties held there.  But we have always politely declined (Caleb is easily over stimulated by noise and crowds).  So, for Joshua's 4th birthday we did a family "party" at Chuck E. Cheese (no friends... we did not want feel obligated to stay if things did not go well).  We also choose to go at 4 o'clock in the evening (little, to no crowds on a week day)... They had a blast!  Joshua ran ME to total exhaustion!  Caleb enjoyed playing a few games, but he and Daddy enjoyed eating pizza and watching the "show".  After an hour or so the crowds started to come and the boys become a little moody... so again we left on a good note! 

We are not the family that gets-our-moneys-worth when going places... so rarely do we spend much when we do try new adventures.  No Six Flags or Disney for us at this point in life... but as the boys grow and get stronger we will add bigger and bigger events.  For now we will continue to use the art of simplicity when we are out and about. 

Lord, help me to have patience with our beautiful boys.  Help me to slow down and have fun!  Give Frank & I strength as we help our boys grow to become men.  When we have those difficult outings, help us to learn from them rather than give up all together.  I know Caleb and Joshua are YOUR gifts to us!  Thank for blessing me with such an amazing family!

Catching up...

Welcome back!  Sorry it has been a while... I will explain why... If this is your first time joining us, welcome.  Please, feel free to read through past blogs.  We are a family with two natural sons (Caleb 7 & Joshua 3) who have Down syndrome. 

Life has been a bit crazy for the Caines house hold in the past year!  We are going through several changes.

Frank was accepted into the Nurse Anesthetist program at Southern Illinois University of Edwardsville!  It is an incredible honor and privilege for him to go back to school, but the program is VERY demanding.  As a result, he had to quit his job and focus solely on school and clinical hours.

For the first time sense Joshua was born, I went back to work... very part time at a local day care... Just because I am working out side of the home does not mean that doctors appointment, school meetings, or home duties have slowed down!  There are just a few more piles of dishes and a few more stacks of clothes...

This year Caleb has made some great strides!  His vocabulary and "conversation" language is blossoming!  Now when I say Caleb's name he will answer with a very concise, "What?"  Until recently he would not respond or just say no.  This is a huge improvement!  He is also reading!  Yes, I said READING!  Caleb has 4 to 5 line "stories" that he can read without any prompting... Amazing!  His behavior seems to be calming a bit as well; however, his "calmness" may be a direct result of my "calmness".

I finally humbled myself and talked to my doctor about anxiety!  Come on, what do I have to be anxious about (spoken very sarcastically)?!  For so long I have lived on pure adrenaline... About the time Caleb was growing out of being "sick" all the time, Joshua was born.  Poor Joshua was a bit medically fragile (I hate to even use "medically fragile" because so many kids we know are VERY medically fragile)!  But Joshua did keep me busy (feet surgery at 4 months old, followed by casting every week on his feet for three months, at 6 months he had his first set of ear tubes, then that winter he was hospitalized three separate weeks for lung/pneumonia issues, all the while juggling physical, occupational & speech therapies)!  My ears turned into super sonic radars... resulting in NO sleep and one very anxious mommy!   But rest is so important and I have not had good rest in years!  I thank the Lord for anxiety medication that also helps me rest at night.  This is the year for me to get healthy, an all around healthy.  So, I have also re-joined the gym... I have missed being in healthy shape, plus the child care is included! Bonus!!!  Mommy gets some "destress time" (without fear of a cold sending Joshua to the hospital) and the boys get some "social time"... this is going to be a beautiful thing!

Speaking of "good" things, Joshua's ASD (a hole in his heart) closed without repair!  No more Cardiology for him!  I almost feel bad mentioning this because sooooo many of our friends have children with very serious heart issues... An ASD is nothing compared to what so many little ones go through.  But this is also one less fear and one less doctor!

So, more good news... Caleb will be going to summer camp this August.  He will be attending Camp Barnabas http://www.campbarnabas.org/ in western Missouri.  This camp is a Christian based, high adventure camp for children with physical impairments and/or developmental delays!  Believe it or not Caleb will be among the "higher" functioning children.  Every child is paired with a volunteer buddy and the activities are "modified" for each child's abilities!  I am SUPPER excited for him!

Life is all about moving forward... so we just keep putting one foot in front of the other...

Lord, please help me to continue to "get healthy"!  Help me set an example that I would be proud of my boys to follow!