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...
Wednesday, October 7, 2009
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!
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