If you are visiting this blog for the first time, welcome! Please feel free to visit past blogs... We are a family with two "natural" children with Down syndrome...
Have you ever needed help? Some times it is really difficult to admit that help is needed... It becomes even more difficult when that help is some what abstract (when the answer is not clear cut or the answer is emotionally hard to accept). Yet... when those emotional hurdles are jumped the and help is accepted there is a bit of freshness to life... Why is help so hard to accept?
Accepting help is admitting that whatever we are doing or how we are doing is not working. Or, that our circumstance is beyond what we can handle on our own. Accepting help requires humility and honesty... it is saying, "I don't have it all figured out... I need help..."
In the past few months some very exciting things have been happening with the boys: Caleb is becoming more potty friendly, he is learning to read, and he is becoming very independent. Joshua has learned to walk, he can feed himself, and he wants to do everything Caleb is doing. The boys are making great stride and we are so proud of them! Yet they frequently need help (dressing, tying shoes, wiping, bathing, walking, staying focused, cutting food...). I give them help gladly and willingly...
A long with these very exciting accomplishments I have had to stop and admit that I could use some help. (Okay you can laugh...) We were not sure that Joshua would be walking for pre- school. He not only has low muscle tone (from the DS) but he was born with clubbed feet. We have done surgery, casting, braces... nothing seemed to help. His left foot trips him up all the time (literally). With the help of his Physical therapist we started looking into a "push chair" (wheel chair) that would be transport safe for on the bus. She was bold enough to mention that Caleb may benefit form a chair as well. (He likes flop on the ground when he does not want to do something - like in the middle of Walmart, the parking lot, church, school, zoo, park, restaurant...) Not only does he "flop and drop," he has serious sensory issues so with the wrong type of noise or touch he has a complete melt down. Please... I did not want one wheel chair let alone two! "Come on, people already stare at us! I don't want two wheel chairs for people stair at as well!" I did not say that out loud of course... but can you hear the little tantrum I am throwing?! I agreed to meet with the representative but made it very clear that I did not want "push chairs" that looked like a wheel chairs!
By the grace of God someone gave us a "transport" chair for Joshua!!! Amazing... these things are thousands of dollars. And yes, it looks like a wheel chair... I am not selfish (or wealthy) enough to say, "Sorry, I don't want this free chair because it looks like a wheel chair." We (the PT, the boys and I) meet with the "wheel chair" guy to look at options for Caleb and take measurements. Caleb was beyond crazy that day and Joshua likes to be just like his big brother. It was a fun day (do you hear the sarcasm?). We also talked about funding (we can't afford these chairs)... Insurance first than if that does not work Variety Club St. Louis' Children's Charity http://varietystl.org/ said they would help pay for it.
We could move forward.... so what was my problem? Me! I was my own problem... Emotionally I was not ready to admit that I needed help... That my boys needed a chair... "I don't want to be stared at..." "I don't want to explain..." "I don't need..." I... I... I... But it is not about me! Let's be real honest, we will always be stared at... I will always get to explain and educate about DS... and I need to be willing to accept any help I can get! Once I could see past myself the chairs became a blessing! A HUGE blessing... a back saving blessing! We are still waiting on Caleb's to arrive, but Joshua's is wonderful! No frills, but it can carry up to 100 lbs. and moves like no stroller out there (that would be because it is a "chair" not a stroller)! Even though it is way too small, there are many times Caleb has been stuck in the "chair" because he would not get up off the ground (back saving, I tell you).
Help?... yes, please, I will take all the help I can get!
Sunday, December 20, 2009
Tuesday, December 8, 2009
Pee Party!
If you are joining this blog for the first time, welcome! Feel free to read past posts...
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
Wednesday, October 7, 2009
Just another crazy day!
If you are joining the blog for the first time, welcome! Please feel free to browse past entries...
Today was just another day... busy, non eventful, crazy day! So here's how today went:
6:30 a.m.: I open my eyes but do not hear the boys so I try to close them again for a few more minuets. No need for the alarm, because I just get up. I do not sleep that soundly any way... so I hear the boys when ever they wake
6:45 a.m.: I hear the boys laughing and "talking"... that always puts a smile on my face! I say a quick "Thank you Lord for my boys!" and I hit the ground running.
6:45 - 7:45 a.m.: It is all about getting my slow-poke Caleb ready for school. Coaxing him to pee in the toilet, which takes forever... Trying to convince him to eat... Putting on one sock, then the other, now time for shoes... Chasing him to put on his Lift Vest (his special vest that he wears at school)...Combing a few hairs against his will... Now time for the jacket... Do I hear the bus? Yep, grab the back pack... herd him out the door (more like carry)... Redirect his attention to the bus not the yard toys... Clap as he walks up the stairs on the bus... Stand and wave "I love you!" good buys...
Sigh, take a deep breath...
8:00 - 8:30 a.m.: Change Joshua's very soggy diaper... Sit at the table and eat some very yummy Raisin Bran while Joshua pigs-out on his yogurt and the rest of Caleb's yogurt and some crackers and some milk. I get Joshua cleaned up from his "fun" breakfast that he is wearing. I let him watch some Super Why while I run up stairs to get his sheets to throw in the wash before Joshua's Physical Therapist comes... oops, the door bell... grab the sheet and run to open the door.
8:30- 9:30 a.m.: I say hi to PT and excuse myself for a moment to put on some "real" clothes... Joshua walks and tries to kick the ball... Oh, poor guy he tripped on the ball and hurt his pride... He needs his mommy for a moment... I quickly throw the laundry in the wash while waiting for Joshua to fallow my voice... We are playing a little "walking" hide-and-seek game... Because of the Down syndrome (low muscle tone) and clubbed feet Joshua (2 1/2 years old) is just now wanting to walk most of the time... his knees still give out quite a bit and his feet trip him, but he has drive... He wants to walk!
9:30 - 10:00 a.m.: Say buy to PT... switch laundry to drier... make a few peanut butter and honey sandwiches and pack a few gold fish for latter... Finally I get to go pee (oh, to the little things in life!)... Load Joshua in the van and head to school to get Caleb.
10:00 - 11:25 a.m.: Sign Caleb out of school for a hematology appointment... I could have let him stay home but to be honest I LOVE seeing his wide, excited, loving eyes when he sees me... Call it vain if you wish... I call it pay day! Load the boys in the van an drive to St. Louis... Talk on the phone in the van (on the blue tooth)... The boys eat their sandwiches... Get to Cardinal Glennon Children's Hospital... Unload stroller for Joshua and get the boys out... Sign in at the desk.
11:25 a.m. -1:30p.m.: Waiting room full of really cool toys... A kid named Huey is volunteering in the waiting room so plays with the boys... Huey has some sort of medical condition that makes he head really small, but his heart is larger than life! He said he loves what he does and enjoys playing with the kids... Huey does a great job keeping the toys and his hands very clean! "Caleb Caines!" I have a quick discussion with the nurse about having two children with Down syndrome... "Yes, it is VERY unusual to have two children with Down syndrome... No, we don't know what the chances are because Caleb has trans location and Joshua does not... Yep, we are the lucky pick (more like the blessed)!" Time to see the doctor... he is not concerned with Caleb's blood work (slightly low white counts)... he orders one last set of lab... We are off to the lab down the hall... Now back to the car we go...
1:30 - 3:20 p.m.: Get the boys settled into the van and we head home... but now I am feeling a little guilty that Joshua has been sitting for so long... We stop at a McDonald's that has an outdoor play land on the way home... I love the dollar menu! They play and eat for a while and I laugh and watch... They are so cute playing together and trying to "play" with the other kids... Oh, no I smell a poopy... time to go! We load up and go home.
3:20 - 6:00 p.m.: Joshua fell asleep in the van so I carry him to bed for his nap... Caleb sees our high school neighbor girl and hugs her to pieces... She brought him a special treat and a book that she thought he would like... Caleb is a ladies man! I cut the power to the house and switch out four outlet in our 100 year old home, while Caleb enjoys his new book... Turn on the electric and test my little project... they work! Time to start dinner, get Joshua up, and help Caleb with sight words...
6:00-8:00 p.m.: "Thank you God for our day and our food and our family... Yea, God!" We eat... I try to get Caleb to say his sight words and after pain staking efforts he starts saying them... Lots of praise and high-fives and Caleb is ready for some Elmo as he reward... I fold and put away clothes as the boys watch Elmo Potty Time... Now it is time for bathes and bed...
Sigh... sit and relax for a moment...
Time for me to lay in bed and read my Bible and fall asleep... resting for the day to come...
Today was just another day... busy, non eventful, crazy day! So here's how today went:
6:30 a.m.: I open my eyes but do not hear the boys so I try to close them again for a few more minuets. No need for the alarm, because I just get up. I do not sleep that soundly any way... so I hear the boys when ever they wake
6:45 a.m.: I hear the boys laughing and "talking"... that always puts a smile on my face! I say a quick "Thank you Lord for my boys!" and I hit the ground running.
6:45 - 7:45 a.m.: It is all about getting my slow-poke Caleb ready for school. Coaxing him to pee in the toilet, which takes forever... Trying to convince him to eat... Putting on one sock, then the other, now time for shoes... Chasing him to put on his Lift Vest (his special vest that he wears at school)...Combing a few hairs against his will... Now time for the jacket... Do I hear the bus? Yep, grab the back pack... herd him out the door (more like carry)... Redirect his attention to the bus not the yard toys... Clap as he walks up the stairs on the bus... Stand and wave "I love you!" good buys...
Sigh, take a deep breath...
8:00 - 8:30 a.m.: Change Joshua's very soggy diaper... Sit at the table and eat some very yummy Raisin Bran while Joshua pigs-out on his yogurt and the rest of Caleb's yogurt and some crackers and some milk. I get Joshua cleaned up from his "fun" breakfast that he is wearing. I let him watch some Super Why while I run up stairs to get his sheets to throw in the wash before Joshua's Physical Therapist comes... oops, the door bell... grab the sheet and run to open the door.
8:30- 9:30 a.m.: I say hi to PT and excuse myself for a moment to put on some "real" clothes... Joshua walks and tries to kick the ball... Oh, poor guy he tripped on the ball and hurt his pride... He needs his mommy for a moment... I quickly throw the laundry in the wash while waiting for Joshua to fallow my voice... We are playing a little "walking" hide-and-seek game... Because of the Down syndrome (low muscle tone) and clubbed feet Joshua (2 1/2 years old) is just now wanting to walk most of the time... his knees still give out quite a bit and his feet trip him, but he has drive... He wants to walk!
9:30 - 10:00 a.m.: Say buy to PT... switch laundry to drier... make a few peanut butter and honey sandwiches and pack a few gold fish for latter... Finally I get to go pee (oh, to the little things in life!)... Load Joshua in the van and head to school to get Caleb.
10:00 - 11:25 a.m.: Sign Caleb out of school for a hematology appointment... I could have let him stay home but to be honest I LOVE seeing his wide, excited, loving eyes when he sees me... Call it vain if you wish... I call it pay day! Load the boys in the van an drive to St. Louis... Talk on the phone in the van (on the blue tooth)... The boys eat their sandwiches... Get to Cardinal Glennon Children's Hospital... Unload stroller for Joshua and get the boys out... Sign in at the desk.
11:25 a.m. -1:30p.m.: Waiting room full of really cool toys... A kid named Huey is volunteering in the waiting room so plays with the boys... Huey has some sort of medical condition that makes he head really small, but his heart is larger than life! He said he loves what he does and enjoys playing with the kids... Huey does a great job keeping the toys and his hands very clean! "Caleb Caines!" I have a quick discussion with the nurse about having two children with Down syndrome... "Yes, it is VERY unusual to have two children with Down syndrome... No, we don't know what the chances are because Caleb has trans location and Joshua does not... Yep, we are the lucky pick (more like the blessed)!" Time to see the doctor... he is not concerned with Caleb's blood work (slightly low white counts)... he orders one last set of lab... We are off to the lab down the hall... Now back to the car we go...
1:30 - 3:20 p.m.: Get the boys settled into the van and we head home... but now I am feeling a little guilty that Joshua has been sitting for so long... We stop at a McDonald's that has an outdoor play land on the way home... I love the dollar menu! They play and eat for a while and I laugh and watch... They are so cute playing together and trying to "play" with the other kids... Oh, no I smell a poopy... time to go! We load up and go home.
3:20 - 6:00 p.m.: Joshua fell asleep in the van so I carry him to bed for his nap... Caleb sees our high school neighbor girl and hugs her to pieces... She brought him a special treat and a book that she thought he would like... Caleb is a ladies man! I cut the power to the house and switch out four outlet in our 100 year old home, while Caleb enjoys his new book... Turn on the electric and test my little project... they work! Time to start dinner, get Joshua up, and help Caleb with sight words...
6:00-8:00 p.m.: "Thank you God for our day and our food and our family... Yea, God!" We eat... I try to get Caleb to say his sight words and after pain staking efforts he starts saying them... Lots of praise and high-fives and Caleb is ready for some Elmo as he reward... I fold and put away clothes as the boys watch Elmo Potty Time... Now it is time for bathes and bed...
Sigh... sit and relax for a moment...
Time for me to lay in bed and read my Bible and fall asleep... resting for the day to come...
Saturday, September 19, 2009
Life is tough!
If you are joining this blog for the first time, welcome! Feel free to read through past blogs...
The logical side of me knows that life is tough... Everyone faces tough times (death, sickness, challenging situations, bad news, fevers, moves, job changes ...), yet I always seem shocked and disappointed when "tough life" happens! Maybe these challenging times reach far beyond the "logic" of life and into the emotional and soul of who I am...
Life is very tough right now! Unfortunately it is only going to get harder and darker...
About two weeks ago my mother-in-law was diagnosed with small cell lung cancer. This form of cancer is extremely aggressive and there is no cure. Frank will be spending lots of time traveling between Grayson, Ky. and Mascoutah, IL (7 hour drive with out the kids) quite a bit in the next year or so. This is a very sobering time in all of our lives. We all love Mamaw Caines very much! The boys of course are to young to understand what is going on; however, we are trying to call Mamaw as much a possible to let her know that we love her!
During this very stressful time in Frank's life (our entire family's life, really) I am trying to be the supportive wife, a stable mother, and be ready to do what ever I need to do. We beg you for your prayers! The whole family needs them!
While Frank was in Kentucky last week Caleb had some blood drawn. Once a month for three months Caleb has had labs drawn because of some low white blood counts. Leukemia is 10-30 times more prevalent in children with Down syndrome than in the general population, so the boys have annual blood work. In July Caleb's came back abnormal. Because they have not rushed him to the hospital, I am still hopeful that maybe this is just nothing. Having two kids with Down syndrome has taught me many things one of which is: Don't freak out until the doctors tell me it is time to freak out! So,I am trying to remain calm (easier said than done sometimes).
If small cell cancer and the possibility of a blood disorder are not enough to deal with, we also learned that our best friends of 9 years are being transferred to Japan! Not just across the United States or a few states over, no all the way around the world! "Lord, could we please slow down here so I can take a breath and catch up!" (Do you hear the shouting in my voice?) The logical side of me is excited for them! Japan will be an awesome place to live and learn about! Their kids will have an experience like no other, and they will learn about a culture that is incredible! The emotional side of me is screaming, "NO! Not now! We will miss you sooooo much! What will we do without you?!"
Life really hurts right now... The hard part is looking in the near future and realizing that this is not the darkest time yet... The only thing that I hold onto is that God will never leave no matter how tough it gets, no matter how loud I yell, and no matter what happens... He will be there!
Romans 8:35, 37-39 says, "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sward?... No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angles nor demons, neither present nor the future, nor any powers, neither heights nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." That is my strong hold and my prayer!
The logical side of me knows that life is tough... Everyone faces tough times (death, sickness, challenging situations, bad news, fevers, moves, job changes ...), yet I always seem shocked and disappointed when "tough life" happens! Maybe these challenging times reach far beyond the "logic" of life and into the emotional and soul of who I am...
Life is very tough right now! Unfortunately it is only going to get harder and darker...
About two weeks ago my mother-in-law was diagnosed with small cell lung cancer. This form of cancer is extremely aggressive and there is no cure. Frank will be spending lots of time traveling between Grayson, Ky. and Mascoutah, IL (7 hour drive with out the kids) quite a bit in the next year or so. This is a very sobering time in all of our lives. We all love Mamaw Caines very much! The boys of course are to young to understand what is going on; however, we are trying to call Mamaw as much a possible to let her know that we love her!
During this very stressful time in Frank's life (our entire family's life, really) I am trying to be the supportive wife, a stable mother, and be ready to do what ever I need to do. We beg you for your prayers! The whole family needs them!
While Frank was in Kentucky last week Caleb had some blood drawn. Once a month for three months Caleb has had labs drawn because of some low white blood counts. Leukemia is 10-30 times more prevalent in children with Down syndrome than in the general population, so the boys have annual blood work. In July Caleb's came back abnormal. Because they have not rushed him to the hospital, I am still hopeful that maybe this is just nothing. Having two kids with Down syndrome has taught me many things one of which is: Don't freak out until the doctors tell me it is time to freak out! So,I am trying to remain calm (easier said than done sometimes).
If small cell cancer and the possibility of a blood disorder are not enough to deal with, we also learned that our best friends of 9 years are being transferred to Japan! Not just across the United States or a few states over, no all the way around the world! "Lord, could we please slow down here so I can take a breath and catch up!" (Do you hear the shouting in my voice?) The logical side of me is excited for them! Japan will be an awesome place to live and learn about! Their kids will have an experience like no other, and they will learn about a culture that is incredible! The emotional side of me is screaming, "NO! Not now! We will miss you sooooo much! What will we do without you?!"
Life really hurts right now... The hard part is looking in the near future and realizing that this is not the darkest time yet... The only thing that I hold onto is that God will never leave no matter how tough it gets, no matter how loud I yell, and no matter what happens... He will be there!
Romans 8:35, 37-39 says, "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sward?... No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angles nor demons, neither present nor the future, nor any powers, neither heights nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." That is my strong hold and my prayer!
Monday, September 7, 2009
Got the cruds.
Welcome back! For those who are just joining, please feel free to read past blogs...
Today I have the cruds. It started a few days ago and really hit me hard after church yesterday. I am still hoping that this "head cold" is just allergies, but after sleeping in until 9 a.m. is morning and coughing up yellow junk I'm just not that so sure.
Why am I sharing this? We'll if I truly want to share my life I must be transparent. I am not a "rock start" mom all the time. I am just like other moms. I have the good, the bad, and the ugly days. Today is one of those ugly days. I have not showered yet, the boys will be watching way to much television, and I just pray neither boys has blow-out poopy diaper - just can't handle that today.
"Where is Frank?" you may ask. He is off work today thus me being able to sleep in. But, he is also in school (as well as working full time). In order for him to finish his Bachelor's in Nursing this semester he is taking a pretty hefty load of classes. He took off to the library and will check in on us every so often.
Please just say a quick prayer for us. I will get better soon. And the boys, well they will absolutely LOVE watching television all day... kids dream come true!
Today I have the cruds. It started a few days ago and really hit me hard after church yesterday. I am still hoping that this "head cold" is just allergies, but after sleeping in until 9 a.m. is morning and coughing up yellow junk I'm just not that so sure.
Why am I sharing this? We'll if I truly want to share my life I must be transparent. I am not a "rock start" mom all the time. I am just like other moms. I have the good, the bad, and the ugly days. Today is one of those ugly days. I have not showered yet, the boys will be watching way to much television, and I just pray neither boys has blow-out poopy diaper - just can't handle that today.
"Where is Frank?" you may ask. He is off work today thus me being able to sleep in. But, he is also in school (as well as working full time). In order for him to finish his Bachelor's in Nursing this semester he is taking a pretty hefty load of classes. He took off to the library and will check in on us every so often.
Please just say a quick prayer for us. I will get better soon. And the boys, well they will absolutely LOVE watching television all day... kids dream come true!
Friday, September 4, 2009
Oh, Crap!
If you are joining this blog for the first time, Welcome! Feel free to check out some of the archived blogs! I hope you enjoy...
Yes, I am going to talk about poop! Let me educate you first. Kids with Down syndrome tend to have low muscle tone (weaker muscles). This can effect every part of their body that has muscles from their head to their toes (and everything in between). As a result of this low tone, potty training can be quite challenging. If you don't poop for a few days or a week, well you know what happens (time to eat a bag of prunes!).
Caleb is 6, and he is still not potty trained. We are working on it, but like every other aspect of his life this is just taking a bit longer to learn. Caleb does stand at the toilet to pee, and back in June we had him pooping on the toilet quite regularly. Then we took a trip to Kentucky and Caleb seemed to have left his "pooping skills" in that beautiful Bluegrass State!
The rest of the summer has been spent trying to "catch" Caleb right before he needed to have a BM, run him to the toilet, and then pray he would excrete on the pot. No luck, until this past week! After lots of singing, a few tears and even a bag of fruit snack, he did it! He pooped in the potty for the first time in 2 1/2 months. This turd was HUGE! It would have made a grown man cry, poor kid... No wonder he hates to poop!
Caleb has this great skill of waiting to use the bathroom until we are out. Most of the time I have to take him to a public toilet (nasty, I hate public restrooms!). A few days after Caleb's "successful" bowl movement we stopped by a friends house. Of course, he had to go to the bathroom as soon as we got there. What we did not know is that he had to poop! Frank spent several minuets with him in the restroom encouraging him to do his business. He did! He pooped on the potty again! We were so proud of him that we did the "potty dance" and made up a silly song about pooping. Then the flood waters came. Caleb's ginormous BM not only stopped up the toilet, it caused the toilet to overflow! The entire bathroom was flooded and the contaminated waters began rushing into the hall way. "Holy crap!"
After shop-vaccing and scrubbing their floors Frank's only comment was, "I would gladly clean an over flowing toilet if it means Caleb pooping on the potty!" Thank goodness these are really good friends! They laughed. We laughed. And Frank left them with a very clean bathroom!
Yes, I am going to talk about poop! Let me educate you first. Kids with Down syndrome tend to have low muscle tone (weaker muscles). This can effect every part of their body that has muscles from their head to their toes (and everything in between). As a result of this low tone, potty training can be quite challenging. If you don't poop for a few days or a week, well you know what happens (time to eat a bag of prunes!).
Caleb is 6, and he is still not potty trained. We are working on it, but like every other aspect of his life this is just taking a bit longer to learn. Caleb does stand at the toilet to pee, and back in June we had him pooping on the toilet quite regularly. Then we took a trip to Kentucky and Caleb seemed to have left his "pooping skills" in that beautiful Bluegrass State!
The rest of the summer has been spent trying to "catch" Caleb right before he needed to have a BM, run him to the toilet, and then pray he would excrete on the pot. No luck, until this past week! After lots of singing, a few tears and even a bag of fruit snack, he did it! He pooped in the potty for the first time in 2 1/2 months. This turd was HUGE! It would have made a grown man cry, poor kid... No wonder he hates to poop!
Caleb has this great skill of waiting to use the bathroom until we are out. Most of the time I have to take him to a public toilet (nasty, I hate public restrooms!). A few days after Caleb's "successful" bowl movement we stopped by a friends house. Of course, he had to go to the bathroom as soon as we got there. What we did not know is that he had to poop! Frank spent several minuets with him in the restroom encouraging him to do his business. He did! He pooped on the potty again! We were so proud of him that we did the "potty dance" and made up a silly song about pooping. Then the flood waters came. Caleb's ginormous BM not only stopped up the toilet, it caused the toilet to overflow! The entire bathroom was flooded and the contaminated waters began rushing into the hall way. "Holy crap!"
After shop-vaccing and scrubbing their floors Frank's only comment was, "I would gladly clean an over flowing toilet if it means Caleb pooping on the potty!" Thank goodness these are really good friends! They laughed. We laughed. And Frank left them with a very clean bathroom!
Wednesday, September 2, 2009
Friends!
I am going to try to blog more thanks to the encouragement of a friend! I have been really struggling with what to blog... My life seems so hectic and so boring all at the same time. So, I would love to get your suggestions. What do you want to know about my family or raising two children with Down syndrome? Mom2tri21boys@gmail.com
Today I am going to talk about friends! Caleb's friends. Joshua's friends. My friends. I wish I could thank all of you by name and give you all a big hug, however I want to respect the privacy of other so I will not mention names... but you know who you are!
I have always worried that my boys would have no friends. Or worse, that they would get picked on. Every mother to some degree struggles with this. I want my boys to be accepted by others just the way they are and to accept others just the way they are. This fear is quickly disappearing.
I received an email the other day from a friend. She told me how her son got a "good job" token for helping Caleb find his ball on the play ground at school. This sounds small but Caleb can be hard person to befriend. He does not always share, he can be very moody, and at times just wants to be left alone. Caleb has more friends though, there are the twins in his class that love him! On one "supper fun" (please hear the sarcasm) trip to McDonald's the twins meat us there. While all of the boys were trying to climb the play equipment one little girl started to pick on Caleb. Huge night mare for a mother! The twins became my hero that day. They stood by Caleb and "protected" him from this She-Bully. One of the twins began screaming at the top of his lungs, "Stop doing that! Stop! That's my friend!!!!" I believe both me and the twins' mom had tears of joy and pride in our eyes! Unfortunately this little conflict ended with me climbing to the top of the jungle gym and asking (telling) the little girl to be nice.
There are our "best" friends! The friends that are more like family. Their four kids have known both boys since birth. Caleb and Joshua know what is expected of them at their house and are very comfortable there. Caleb tries to push the limits but knows he won't get away with it. These are the friends who are there in the good times, not so good times and down right scary times! They lift us up when we need to be reminded that we are loved. They laugh with us when laughing is a healthier choice than crying. They are also there when crying is the only option. Not many people have this kind of friend. We do! Trust me, we know they are a gift from God! We don't even introduce them as our "best friends" any more, they are Aunt and Uncle and cousins. Their kids have just started to ask questions about Down syndrome, because they never really noticed that there was anything "different" before. These kids are amazing little people! The whole family advocate for Caleb and Joshua. The mom gets stopped all the times by newer families asking about the boys. She has encouraged may frustrated parents when she recognized their child has Down syndrome. The kids are always including Caleb and Joshua in the games they are playing with their friends. Or letting their friends know it is okay to play with our boys (teaching their peers how to accept others). We love this family!
We also have an "extended" family through our church, Cornerstone Christian Church. So many people that just flat out love us. Like the couple who have become the "Illinois Grandparents". They will call and say, "We miss those boys. When do we get to watch them again? Time for you kids to go out." Thank you! Or one of my Bible study ladies who is like an aunt to Frank and I. She always stops us kisses the boys and then asks how Frank's studies and work are going. She has been one of many prayer warriors for our family! There are so many friends that call all the time or just when they can. These friends lift my spirits every time I talk to them! Friends that call to say they care or to check on the boys or to make sure I am taking care of myself.
Than you to all of our friend! There are many times we could not do this with out you!
Get your tissues and just listen http://www.youtube.com/watch?v=84FHZhB5__Y !
Today I am going to talk about friends! Caleb's friends. Joshua's friends. My friends. I wish I could thank all of you by name and give you all a big hug, however I want to respect the privacy of other so I will not mention names... but you know who you are!
I have always worried that my boys would have no friends. Or worse, that they would get picked on. Every mother to some degree struggles with this. I want my boys to be accepted by others just the way they are and to accept others just the way they are. This fear is quickly disappearing.
I received an email the other day from a friend. She told me how her son got a "good job" token for helping Caleb find his ball on the play ground at school. This sounds small but Caleb can be hard person to befriend. He does not always share, he can be very moody, and at times just wants to be left alone. Caleb has more friends though, there are the twins in his class that love him! On one "supper fun" (please hear the sarcasm) trip to McDonald's the twins meat us there. While all of the boys were trying to climb the play equipment one little girl started to pick on Caleb. Huge night mare for a mother! The twins became my hero that day. They stood by Caleb and "protected" him from this She-Bully. One of the twins began screaming at the top of his lungs, "Stop doing that! Stop! That's my friend!!!!" I believe both me and the twins' mom had tears of joy and pride in our eyes! Unfortunately this little conflict ended with me climbing to the top of the jungle gym and asking (telling) the little girl to be nice.
There are our "best" friends! The friends that are more like family. Their four kids have known both boys since birth. Caleb and Joshua know what is expected of them at their house and are very comfortable there. Caleb tries to push the limits but knows he won't get away with it. These are the friends who are there in the good times, not so good times and down right scary times! They lift us up when we need to be reminded that we are loved. They laugh with us when laughing is a healthier choice than crying. They are also there when crying is the only option. Not many people have this kind of friend. We do! Trust me, we know they are a gift from God! We don't even introduce them as our "best friends" any more, they are Aunt and Uncle and cousins. Their kids have just started to ask questions about Down syndrome, because they never really noticed that there was anything "different" before. These kids are amazing little people! The whole family advocate for Caleb and Joshua. The mom gets stopped all the times by newer families asking about the boys. She has encouraged may frustrated parents when she recognized their child has Down syndrome. The kids are always including Caleb and Joshua in the games they are playing with their friends. Or letting their friends know it is okay to play with our boys (teaching their peers how to accept others). We love this family!
We also have an "extended" family through our church, Cornerstone Christian Church. So many people that just flat out love us. Like the couple who have become the "Illinois Grandparents". They will call and say, "We miss those boys. When do we get to watch them again? Time for you kids to go out." Thank you! Or one of my Bible study ladies who is like an aunt to Frank and I. She always stops us kisses the boys and then asks how Frank's studies and work are going. She has been one of many prayer warriors for our family! There are so many friends that call all the time or just when they can. These friends lift my spirits every time I talk to them! Friends that call to say they care or to check on the boys or to make sure I am taking care of myself.
Than you to all of our friend! There are many times we could not do this with out you!
Get your tissues and just listen http://www.youtube.com/watch?v=84FHZhB5__Y !
Thursday, May 28, 2009
Thank you for the prayers!!!
Thank you for all the prayer, everyone! I have to be honest... I have been avoiding the Internet. I was over whelmed by the responses I received about Dad! The prayers, encouragements, and "e-hugs" really touched my heart! I've avoided looking at them because I knew I would cry, and I did. I just had to be ready to let the tears flow. The sincere condolences and words really mean so much!
For those who are just starting to read this blog feel free to read any of my previous postings...
The past few weeks have been busy, in that respect we are no different than everyone else in the world... Caleb (our almost 6 year old) has been home all week after having tonsils removed and more tubes (5th set) put in his ears! This kind of surgery is just second nature for us and life really does not skip a beat. I just get to have more cuddle time and reading time with Caleb each day! I must admit I do get a bet stir crazy and miss being outside or just being more active.
I seem to be reminded daily that having children with special needs really is an incredible blessing. The smiles that Caleb brought to the O.R. were amazing! Every new person that walked in the room he greeted with a BIG bear hug! Even people that didn't "need" to see him came in just to say "hi", like the nurse that called to do pre-admissions. She even came to check on him post operation... just to make sure "her little buddy was OK!"
In so many ways my life as a mom with two children with Down syndrome is just like any other mom. I struggle with all the "normal" mom things like: Am I too strict? Am I strict enough? Were those words too harsh? Will my kids make good choices? Well the other kids like them? What if none of the other kids will play with them? Have I yelled too much and given too few hugs today? Do they know I love them? Do they love me? Why won't they listen? When will he tell me he has to potty? Why does he wait to poop in the public toilet (yuck!)? Did I spend enough time with them today? Am I modeling the person I want them to become? I should say I am sorry for that! I need to be more involved. I need to give them a bit more space. The list is endless...
My boys go through the same "stages" of life as other kids. They just spend a bet more time in those phases! The two-year-old's have lasted about four years for Caleb and now Joshua is entering this fun time of life (do you hear the sarcasm?). Potting training is taking, well... forever for Caleb. But at least I know some day he will get there. Then I will be better equipped to handle that time with Joshua! Speaking of Joshua, he is over two years old and still not walking... Yet, Caleb is runs all the time. Joshua will get there in his time and with lots of physical therapy! Words and talking do not come easy for Caleb yet Joshua seems to have the gift of gab (I don't know where he gets it from... oh yeah, it's me!).
Each day I seem to wake up and ask God for the same things. "God will you help me to show grace to my kids in the same ways you have shown grace to me? I know I am not perfect and I know they are not perfect. And at times that is a really bad combination! Please help me to show them love, mercy and patients! I love them and I know you love them even more." These words are uttered before I open my eyes or put my feet on the floor. There are days I listen to God's leading and I am embarrassed to say there are days I don't.
In many ways we will never be a "normal" family. We are always going to be dealing with specialized needs and issues that many families will not. We are at times that family that make others feel like their situations is really not that bad. Or, seeing our kids will secretly allow another mom to think, "Well at least my kids don't act like that." To be honest I don't have a problem with that. We all need a little perspective in our lives. I know I have had those moments when looking at another family's situation. Yet, more times than not I am dealing with very similar issues as everyone else. Praying at the end of the day that we (Frank and I) help our kids grow into responsible adults! We are all so unique with different situations, yet we are so very much the same - loving our kids and wanting what is best for them!
For those who are just starting to read this blog feel free to read any of my previous postings...
The past few weeks have been busy, in that respect we are no different than everyone else in the world... Caleb (our almost 6 year old) has been home all week after having tonsils removed and more tubes (5th set) put in his ears! This kind of surgery is just second nature for us and life really does not skip a beat. I just get to have more cuddle time and reading time with Caleb each day! I must admit I do get a bet stir crazy and miss being outside or just being more active.
I seem to be reminded daily that having children with special needs really is an incredible blessing. The smiles that Caleb brought to the O.R. were amazing! Every new person that walked in the room he greeted with a BIG bear hug! Even people that didn't "need" to see him came in just to say "hi", like the nurse that called to do pre-admissions. She even came to check on him post operation... just to make sure "her little buddy was OK!"
In so many ways my life as a mom with two children with Down syndrome is just like any other mom. I struggle with all the "normal" mom things like: Am I too strict? Am I strict enough? Were those words too harsh? Will my kids make good choices? Well the other kids like them? What if none of the other kids will play with them? Have I yelled too much and given too few hugs today? Do they know I love them? Do they love me? Why won't they listen? When will he tell me he has to potty? Why does he wait to poop in the public toilet (yuck!)? Did I spend enough time with them today? Am I modeling the person I want them to become? I should say I am sorry for that! I need to be more involved. I need to give them a bit more space. The list is endless...
My boys go through the same "stages" of life as other kids. They just spend a bet more time in those phases! The two-year-old's have lasted about four years for Caleb and now Joshua is entering this fun time of life (do you hear the sarcasm?). Potting training is taking, well... forever for Caleb. But at least I know some day he will get there. Then I will be better equipped to handle that time with Joshua! Speaking of Joshua, he is over two years old and still not walking... Yet, Caleb is runs all the time. Joshua will get there in his time and with lots of physical therapy! Words and talking do not come easy for Caleb yet Joshua seems to have the gift of gab (I don't know where he gets it from... oh yeah, it's me!).
Each day I seem to wake up and ask God for the same things. "God will you help me to show grace to my kids in the same ways you have shown grace to me? I know I am not perfect and I know they are not perfect. And at times that is a really bad combination! Please help me to show them love, mercy and patients! I love them and I know you love them even more." These words are uttered before I open my eyes or put my feet on the floor. There are days I listen to God's leading and I am embarrassed to say there are days I don't.
In many ways we will never be a "normal" family. We are always going to be dealing with specialized needs and issues that many families will not. We are at times that family that make others feel like their situations is really not that bad. Or, seeing our kids will secretly allow another mom to think, "Well at least my kids don't act like that." To be honest I don't have a problem with that. We all need a little perspective in our lives. I know I have had those moments when looking at another family's situation. Yet, more times than not I am dealing with very similar issues as everyone else. Praying at the end of the day that we (Frank and I) help our kids grow into responsible adults! We are all so unique with different situations, yet we are so very much the same - loving our kids and wanting what is best for them!
Tuesday, May 19, 2009
Reflections about Dad...
Ten years ago my dad (Bill Ticknor) and my mom (Susie Ticknor) took Frank and I on a vacation as a graduation gift from college. On our way to our ultimate location, the Grand Canyon, we took a side trip and did some white water rafting. We never made to the Grand Canyon! Dad drowned on the river... That day is by far with out question or hesitation the worst day of my life! In no way will I ever look at that day with some "silver lining". Not only did we loose my dad but all four of us came face to face with death! The water showed no mercy and I thought several times that I would not live to see the next day. At times I also believed I would be a 21 year old widow.
My entire family grieved! The hole town of Grayson, Kentucky grieved! For years I had flash backs of water or I would have dreams with dad in them. I am beyond the darkest parts of grief now. I can finally hear the words "white water" with out a panic attack. I can finally see kids playing soccer with out tearing up (Dad was a huge soccer advocate in my home town). I am able to live life now! Still yet, with every new phase in life (buying a house, having one son, having another son, buying a car...) I miss my dad.
I honestly believed that very tragic day in May would forever be my story... would always haunt my dreams or be the only thing I thought about. That day is only part of my story! Live keeps moving forward, and so have I! Now I have two beautiful boys with Down syndrome and they need their mom to live in the present. Caleb (our oldest) is Caleb William after his Grandpa that he will never meet on this earth.
In many ways that day has help shape my life. I do not take life for granite. I realize that life is a gift, that my family is a gift! Down syndrome may be a challenge but there is life not death! I did not loose my children to death, they just brought their own uniqueness to my life. There is hope and adventure with every new day! I am not quite as adventurous. I saw how quickly life can be taken from someone. I know how helpless I felt in those waters. It is truly by the grace of God that the three of us did survive! I still love the outdoors and enjoy a great day in God's creation, I'm just not as extreme.
The funny thing is I never can remember the date of his death! Quite honestly, I really don't want to! I know it was after his birthday (May 21) and before Memorial day. Kind of strange how my mind can remember where my husband put things (when he can't) yet I have blocked that date.
I will always love and miss my dad! With everything in me I wish he were hear to know his kids now and meet his grand kids! Life just keeps moving forward and so do I!
My entire family grieved! The hole town of Grayson, Kentucky grieved! For years I had flash backs of water or I would have dreams with dad in them. I am beyond the darkest parts of grief now. I can finally hear the words "white water" with out a panic attack. I can finally see kids playing soccer with out tearing up (Dad was a huge soccer advocate in my home town). I am able to live life now! Still yet, with every new phase in life (buying a house, having one son, having another son, buying a car...) I miss my dad.
I honestly believed that very tragic day in May would forever be my story... would always haunt my dreams or be the only thing I thought about. That day is only part of my story! Live keeps moving forward, and so have I! Now I have two beautiful boys with Down syndrome and they need their mom to live in the present. Caleb (our oldest) is Caleb William after his Grandpa that he will never meet on this earth.
In many ways that day has help shape my life. I do not take life for granite. I realize that life is a gift, that my family is a gift! Down syndrome may be a challenge but there is life not death! I did not loose my children to death, they just brought their own uniqueness to my life. There is hope and adventure with every new day! I am not quite as adventurous. I saw how quickly life can be taken from someone. I know how helpless I felt in those waters. It is truly by the grace of God that the three of us did survive! I still love the outdoors and enjoy a great day in God's creation, I'm just not as extreme.
The funny thing is I never can remember the date of his death! Quite honestly, I really don't want to! I know it was after his birthday (May 21) and before Memorial day. Kind of strange how my mind can remember where my husband put things (when he can't) yet I have blocked that date.
I will always love and miss my dad! With everything in me I wish he were hear to know his kids now and meet his grand kids! Life just keeps moving forward and so do I!
Wednesday, May 6, 2009
Day at doc's office
Monday, May 4 I had to take Caleb to the orthopedic surgeon's for a follow up appointment. He has a rare, but not completely uncommon for people with Down syndrome, neck instability. Because of this issue he is not allowed to participate in contact sports (makes dad sad) or go horse back riding (makes grandma sad) or do gymnastics (makes me sad). Any activities from heights or that could cause a whip lash motion are strictly forbidden because of the risk of spinal cord damage. He loves to run, bowl, swim, and play in the dirt - all very good activities for him to be a part of! While in the waiting room I was reminded of how beautiful Caleb's personality is! Let me set the stage for you...
Joshua and I spent the morning at a special needs play group. We had a bite to eat. Then I had to wake up Joshua from his nap and leave my house by 1 p.m. so I could pick Caleb up from school to make it to his 2:30 appointment. We barley made arrived on time. Cardinal Glennon Children's Medical Center is a very busy place so it was packed! Consequently we spend a solid hour in the waiting room. This clinic has several specialist in one "office" so the waiting area is huge. Caleb likes automatic doors so he spent most of the hour trying to open the door and run out. We also walked laps around the rows and rows of chairs and people. I am sure everyone knew Caleb's name and did not envy my efforts to keep up with him! I even had a parent ask me if he had autism. In a clinic this size there are children of all shapes, sizes, and special issues.
In the midst of this chaos and stress Caleb reminded me that love is the most beautiful gift! As we paced up and down the waiting room Caleb would stop and touch someone or hug a baby. But Caleb's love does not discriminate. He walked right up to a young man in a wheel chair. This young fellow is blind and has virtually no use of any limbs. Most kids (and adults I am sure) would have been afraid of his chair and physical abnormalities. People spend their energy trying not to stair, I know I have been on both sides I am sad to say. Not Caleb! He came right up to Alex and gave him a huge hug and even tried to kiss him on the cheek. As I stood and talked to his mother Caleb remained next to Alex with one hand on his shoulder. Caleb stood touching Alex in the most relaxed natural fashion, like they had know each other for years. We learned that Alex is 15 years old and is now completely blind, but that he can hear realy well. We "talked" with Alex as well. Caleb did not care what Alex's issues are he just wanted to show love! Caleb did not care who was looking or what Alex looked like. He was just being Caleb... hugging anyone he felt like hugging. Caleb especially loves men (he calls them all Daddy - now that is embarrassing) and Alex was no exception. What a kid! He can show love with out regard to out ward appearances or preconceptions.
I am ashamed to say that would have not stopped to talk to Alex. Now I will. I would have not touched him, and I would have never tried to hug him... I am shamed by my 5 and 1/2 year old son! Caleb did not care what Alex looked like or what his limitations are. This type of uninhibited love reminds me of the love God shows to us every day! We look at the out side and make judgements (too dirty, too foolish, too poor, too rich, too different) about why we won't even look in their direction. God sees past that and reaches out to touch them, but here's the catch... sometimes we are meant to be the hands God uses! Caleb is not a perfect child and that days was very stressful, yet God used Caleb to touch Alex with love. All it takes is a touch, a smile, a hug, a kind word, an acknowledgement...
I am so proud of my Caleb! There is so much I am learning from him!
Joshua and I spent the morning at a special needs play group. We had a bite to eat. Then I had to wake up Joshua from his nap and leave my house by 1 p.m. so I could pick Caleb up from school to make it to his 2:30 appointment. We barley made arrived on time. Cardinal Glennon Children's Medical Center is a very busy place so it was packed! Consequently we spend a solid hour in the waiting room. This clinic has several specialist in one "office" so the waiting area is huge. Caleb likes automatic doors so he spent most of the hour trying to open the door and run out. We also walked laps around the rows and rows of chairs and people. I am sure everyone knew Caleb's name and did not envy my efforts to keep up with him! I even had a parent ask me if he had autism. In a clinic this size there are children of all shapes, sizes, and special issues.
In the midst of this chaos and stress Caleb reminded me that love is the most beautiful gift! As we paced up and down the waiting room Caleb would stop and touch someone or hug a baby. But Caleb's love does not discriminate. He walked right up to a young man in a wheel chair. This young fellow is blind and has virtually no use of any limbs. Most kids (and adults I am sure) would have been afraid of his chair and physical abnormalities. People spend their energy trying not to stair, I know I have been on both sides I am sad to say. Not Caleb! He came right up to Alex and gave him a huge hug and even tried to kiss him on the cheek. As I stood and talked to his mother Caleb remained next to Alex with one hand on his shoulder. Caleb stood touching Alex in the most relaxed natural fashion, like they had know each other for years. We learned that Alex is 15 years old and is now completely blind, but that he can hear realy well. We "talked" with Alex as well. Caleb did not care what Alex's issues are he just wanted to show love! Caleb did not care who was looking or what Alex looked like. He was just being Caleb... hugging anyone he felt like hugging. Caleb especially loves men (he calls them all Daddy - now that is embarrassing) and Alex was no exception. What a kid! He can show love with out regard to out ward appearances or preconceptions.
I am ashamed to say that would have not stopped to talk to Alex. Now I will. I would have not touched him, and I would have never tried to hug him... I am shamed by my 5 and 1/2 year old son! Caleb did not care what Alex looked like or what his limitations are. This type of uninhibited love reminds me of the love God shows to us every day! We look at the out side and make judgements (too dirty, too foolish, too poor, too rich, too different) about why we won't even look in their direction. God sees past that and reaches out to touch them, but here's the catch... sometimes we are meant to be the hands God uses! Caleb is not a perfect child and that days was very stressful, yet God used Caleb to touch Alex with love. All it takes is a touch, a smile, a hug, a kind word, an acknowledgement...
I am so proud of my Caleb! There is so much I am learning from him!
Monday, April 20, 2009
My new hero!
I will warn everyone that I am not a writer by trade. Please be patient with me as I exercise some "brain muscles" that I have not used in quite some time!
Have you ever met some and thought, "I want to be like that?" or "Now that's a person to look up to?" Have you ever met one of your heroes? Well, I have!
No, I did not meet a pro sports player or a movie star. I did not get to meet Beth Moore or Julia Roberts. No, I did not get back stage passes to a Micheal W. Smith or Steven Curtis Champman concerts. My new hero is not famous. He doesn't make lots of money. He is my hero because he is just himself!
My hero is Ryan! He is a 32 year old man with Down syndrome. Why is he my hero? Why do I look up to him? Ryan gives me hope! He allows me to have a glimpse into the future. He helps me see beyond the here-and-now of Caleb and Joshua's lives.
We meet Ryan about 9 months ago when he and his family moved back into the area. When I first meet Ryan I knew I had found a friend, a person to look up to. Over the past few months Ryan's family has opened their hearts and home to us. We have had the chance to talk, laugh and (of course) eat together. Each time my heart is warmed.
I some times see "typical" families and think, "Will my boys ever ____ (fill in the blank)?" Ryan helps answer that question. Ryan graduated from High School. Ryan is taking Life Skills Classes at college. Ryan can dress himself. Ryan takes great pride in his job. He can go to the bathroom by himself. He has his own room and is very proud of it. He mows the lawn. Ryan likes to pour drinks for his dinner guests. He loves meat, but not veggies. He dresses himself. He loves to goof off with Frank (my husband). Ryan has taken a mission trip with is family. He is an usher at church. Ryan is giving me hope!
We've all heard the heart warming stories about people with Down syndrome who get married or live "on their own". These are beautiful! They are... but when I am elbow deep in being a Mom of two little ones with Down syndrome I don't want to think about marriage or living on their own. I start dreaming of two way conversations with my boys or of road trips with "potty breaks" not diaper changing breaks. I long for the day we can tell jokes (and they get the punch line) or of playing pranks and they understand when and when not to do it. I look forward to Caleb saying, "Mom, don't come in here! I can go to the bathroom by myself!" If my boys want to get married or move out okay... I'll deal with it then. Reality is they may not. Let me be really honest, many kids want to be astronauts when they grow up, but very few people go to space. Just because a child does not became an astronaut does not mean they do nothing!
Ryan is just Ryan! He does not have to be famous or rich or extra ordinary to touch my life. He just needs to be himself. Ryan gives me hope that some day my boys will ____ (fill in the blank)!
I pray someday my boys will be a "Ryan" in someone's life!
Have you ever met some and thought, "I want to be like that?" or "Now that's a person to look up to?" Have you ever met one of your heroes? Well, I have!
No, I did not meet a pro sports player or a movie star. I did not get to meet Beth Moore or Julia Roberts. No, I did not get back stage passes to a Micheal W. Smith or Steven Curtis Champman concerts. My new hero is not famous. He doesn't make lots of money. He is my hero because he is just himself!
My hero is Ryan! He is a 32 year old man with Down syndrome. Why is he my hero? Why do I look up to him? Ryan gives me hope! He allows me to have a glimpse into the future. He helps me see beyond the here-and-now of Caleb and Joshua's lives.
We meet Ryan about 9 months ago when he and his family moved back into the area. When I first meet Ryan I knew I had found a friend, a person to look up to. Over the past few months Ryan's family has opened their hearts and home to us. We have had the chance to talk, laugh and (of course) eat together. Each time my heart is warmed.
I some times see "typical" families and think, "Will my boys ever ____ (fill in the blank)?" Ryan helps answer that question. Ryan graduated from High School. Ryan is taking Life Skills Classes at college. Ryan can dress himself. Ryan takes great pride in his job. He can go to the bathroom by himself. He has his own room and is very proud of it. He mows the lawn. Ryan likes to pour drinks for his dinner guests. He loves meat, but not veggies. He dresses himself. He loves to goof off with Frank (my husband). Ryan has taken a mission trip with is family. He is an usher at church. Ryan is giving me hope!
We've all heard the heart warming stories about people with Down syndrome who get married or live "on their own". These are beautiful! They are... but when I am elbow deep in being a Mom of two little ones with Down syndrome I don't want to think about marriage or living on their own. I start dreaming of two way conversations with my boys or of road trips with "potty breaks" not diaper changing breaks. I long for the day we can tell jokes (and they get the punch line) or of playing pranks and they understand when and when not to do it. I look forward to Caleb saying, "Mom, don't come in here! I can go to the bathroom by myself!" If my boys want to get married or move out okay... I'll deal with it then. Reality is they may not. Let me be really honest, many kids want to be astronauts when they grow up, but very few people go to space. Just because a child does not became an astronaut does not mean they do nothing!
Ryan is just Ryan! He does not have to be famous or rich or extra ordinary to touch my life. He just needs to be himself. Ryan gives me hope that some day my boys will ____ (fill in the blank)!
I pray someday my boys will be a "Ryan" in someone's life!
Monday, April 6, 2009
I have been thinking about the ways my boys have touched lives without trying... They truly are blessings!!!!
Some times when Joshua is feeling his two-year-old-ness I will tell him, "Joshua, it is not so special have Down syndrome in this house. So you can't play the DS card on me!" The truth is all kids are special... The Psalms say that "children are a gift from God..." My boys just seem to touch lives by just being themselves! They don't try they just are!
Let me explain... Caleb will just hug a perfect stranger in Sam's or WalMart and time and time again they will say something to the affect of, "That is exactly what I needed!" Some times the words are uttered through soft tears.
Just today I read www.tammynischan.blogspot.com on the beginning of the Hope Basket (Feb. 28, 2009). Tammy told of how the birth of our Joshua was an inspiration for launching the Hope Basket in their area. I did nothing... Joshua did nothing but come into this world! Yet now hundreds of Families will receive the blessing of the Hope Basket. Tammy you are one of my heroes in the faith...
Some days I feel so sorry for myself... Wondering why we were given two kids with Down syndrome? There are other days I feel sorry for anyone who does not have a child with Down syndrome! Today I am on the edge of both..
My kids are a blessing! God is faithful and I know he will give me the love, patience, and strength I need... Thank you, God, for my boys!
Some times when Joshua is feeling his two-year-old-ness I will tell him, "Joshua, it is not so special have Down syndrome in this house. So you can't play the DS card on me!" The truth is all kids are special... The Psalms say that "children are a gift from God..." My boys just seem to touch lives by just being themselves! They don't try they just are!
Let me explain... Caleb will just hug a perfect stranger in Sam's or WalMart and time and time again they will say something to the affect of, "That is exactly what I needed!" Some times the words are uttered through soft tears.
Just today I read www.tammynischan.blogspot.com on the beginning of the Hope Basket (Feb. 28, 2009). Tammy told of how the birth of our Joshua was an inspiration for launching the Hope Basket in their area. I did nothing... Joshua did nothing but come into this world! Yet now hundreds of Families will receive the blessing of the Hope Basket. Tammy you are one of my heroes in the faith...
Some days I feel so sorry for myself... Wondering why we were given two kids with Down syndrome? There are other days I feel sorry for anyone who does not have a child with Down syndrome! Today I am on the edge of both..
My kids are a blessing! God is faithful and I know he will give me the love, patience, and strength I need... Thank you, God, for my boys!
I am just starting this blog... really don't know what I am doing yet.
For those who may not really know me (or just don't know me any more), Frank and I have two boys with Down syndrome (Trisomey 21). They have a duplication of their twenty first chromosome. This bit of extra information reek havoc on their bodies... every cell is affected. I don't know how often or what I will be blogging yet...
I just know that Down syndrome awareness is what I am called to be doing. So in trying to be faithful to the beautiful boys that God has given me I will share who we are, the blessing, the struggles and our lives
God bless to all!
betsy caines
For those who may not really know me (or just don't know me any more), Frank and I have two boys with Down syndrome (Trisomey 21). They have a duplication of their twenty first chromosome. This bit of extra information reek havoc on their bodies... every cell is affected. I don't know how often or what I will be blogging yet...
I just know that Down syndrome awareness is what I am called to be doing. So in trying to be faithful to the beautiful boys that God has given me I will share who we are, the blessing, the struggles and our lives
God bless to all!
betsy caines
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