Hello all! Much has happened in the last several years... Frank attended (and completed) graduate school, I was working outside of the home during that time, and I was the "main" parent for several years while our family went on this schooling journey.... We are all glad that time is behind us! We are ecstatic to be a whole family once more. The boys love having Daddy home and to have a remotely sane Mommy again... With the freshness of a new year and a new chapter in our life, I am committing posting weekly blogs.
We are a family blessed with two sons (Caleb 10 and Joshua 6)! In all of God's wisdom - maybe hummer is a better word - He created both my boys with Down syndrome. So this is a glimpse into our life the good, the bad and the goofy!
I will do a little catch up this first post... Caleb is now a 4th grader... sigh... He is nearly 5 feet tall! He is thriving at Franklin School in Belleville, Illinois participating in their autism program. So... My Caleb is a "special" sort of boy... I knew very soon after his younger brother, Joshua, was born that something else was going on with Caleb. He has always had sensory issues (loud noises and too much stimulation drive him crazy ... literally.) But it took several years, a butt load of doctors, and some REALLY bad behavior issues at school before I was able to find a psychologist who got it! The doc nailed it the moment we walked into his door... I think I even started crying... I was so exhausted from the constant phone calls and no one wanting to believe he had autism! Caleb has to be in a self-contained classroom (limited interaction with kiddos outside of his classroom) and a VERY structured environment!
Joshua has a serious issue as well it is called "youngest child syndrome" (wink, wink) this is far worse than Down syndrome! I say this tongue in cheek, but it is true. He can be so charming and yet a stinker at the same time... He is so darn cute and VERY theatrical! This deadly combination is his secret weapon! Joshua is now a fist grader and the transition from preschool to "real" school was a bit of a shock to his system. But he is doing well and has an amazing teacher (thank you Mrs. Fanous) and personal aid (Tamara you're the best)! Joshua likes to be in charge... so he is learning to cope with this...
The boys are truly best buddies! But they are very much brothers - loving each other one moment and arguing the next... They keep us entertained!
We are very blessed! I look forward to many of fun blogs with all of you!
Wednesday, January 15, 2014
Tuesday, September 20, 2011
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...
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!
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 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...
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!)
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!
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! |
 |
| New Medical Building |
 |
| Caleb & Jonny |
 |
| Caleb & Jonny swimming! |
 |
| Caleb on a trail ride! |
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/
Wednesday, June 1, 2011
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!
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!
Subscribe to:
Posts (Atom)