Well, we have had a fun-filled weekend....not! Caed's complaining of his g-tube went from mild irritation to full out crying in pain. And a pain that Todd and I could virtually do nothing about. (I remember those days in the hospital and I hate them!) The last 2 nights have been really difficult for him. He would wake up in the middle of the night in severe pain, and we had no idea how to help relieve it for him. It seemed so simple. This button is causing him pain....so take it out!! Oh, that's what I wanted to do so badly! But, when you have a g-tube you can't just take it out or the stoma will begin to close up. (which would ultimately mean surgery again to fix it) Sure, we did the normal Tylenol drill, but that only goes so far. Last night, we were so very close to loading him up and heading for the ER so we could get a new button. But, praise the Lord he finally fell off to sleep.
Basically the prognosis is that he has outgrown his current g-tube. Because of that, it has been pulled so tight up against the stomach wall and possibly even into the stoma tract. There is a water filled balloon that is inflated on one end of the mic key, and that is what has been causing the pressure and irritation.
Long story short.....we received a new mic key button this afternoon (thanks to the efforts of our beloved nurse in NE). However, they didn't have the size we needed. So we went for the next one up. Let's just say it is WAY TOO BIG! It literally hangs out about a 1/4 - 1/2 inch. (which is a lot for mic keys) We put a layer of 4 split gauze pads underneath it to secure it in place. The good news is......it has seemingly relieved a lot of the pain he was in. Now if we can just find a button that fits! Antibiotics and other medications are still be discussed as possibilities if he continues to have problems. But, for now....we will pray a new mic key is all that was needed!
Sunday, August 30, 2009
Saturday, August 29, 2009
MIC.....KEY
This all familiar word can be heard on a daily basis in our home. For two reasons:
First off......Caed's Make-a-Wish Disney trip is in "t minus 14 days!" We fly out on Sept. 12. We all are quite gitty about it, and can't believe it's finally here. Caed and Reagan want me to go online daily and show them pictures of Disney World. They start laughing.....jumping up and down.....unable to contain their enthusiasm. I will admit, even at the ripe old age of 36......my heart as well is bursting with excitement for this much needed adventure.
Our Make-a-Wish coordinator contacted me several weeks ago regarding a "send-off party" they want to throw for Caed. They wanted us to invite our families and a few of Caed's closest friends. The location was his choice, and he chose the Wiggly Play Center in Frisco. Caed has loved the Wiggles ever since he was a toddler, so when we moved here 3 yrs. ago and discovered this wonderful play land that is dedicated to big red cars, a dinosaur named Dorothy, and 4 of the "coolest" dancing dads we know......well, Caed was hooked. Although we were a bit surprised by this choice thinking he might have outgrown them. Apparently not.....and whatever makes him happy.....we'll do! This party is set for next Sat.
However the second reason "Mic Key" is being talked about so much has nothing to do with the happy little mouse that wears white gloves. Caed has been complaining of his button hurting the last couple of days. He has been scratching at it quite a bit too. So far (the past 16 mos) we have been VERY fortunate with his button. At every clinic visit they always ask if there is any pain or irritation with it.......never! So, for this to be happening for the first time now, we count as a huge blessing. Our nurse coordinator in NE said we first need to try a longer mic-key. She said the balloon might be migrating into the tract, therefore causing pain and irritation. Hopefully this will be a simple, quick fix. (although it will require Mommy to do the dreaded changing out of tubes.......ugghhhh!) If that doesn't work, she said he may have an infection and we'll need to get on an antibiotic. Our home health co. said we needed a dr.'s order to get a bigger button. So, we probably won't get anything accomplished until Tues. or Wed. (slightly frustrating) Caed will be ok, but I hate knowing he isn't feeling well. He has played outside a little today, but continues to come in ever so often to let us know "it hurts." All I know to do right now is give some Tylenol and let him rest. His site is leaky, red, and irritated. I can just tell by looking at it, something isn't right.
Sometimes just wish I could blink my eyes and make it all go away.
one day.......
First off......Caed's Make-a-Wish Disney trip is in "t minus 14 days!" We fly out on Sept. 12. We all are quite gitty about it, and can't believe it's finally here. Caed and Reagan want me to go online daily and show them pictures of Disney World. They start laughing.....jumping up and down.....unable to contain their enthusiasm. I will admit, even at the ripe old age of 36......my heart as well is bursting with excitement for this much needed adventure.Our Make-a-Wish coordinator contacted me several weeks ago regarding a "send-off party" they want to throw for Caed. They wanted us to invite our families and a few of Caed's closest friends. The location was his choice, and he chose the Wiggly Play Center in Frisco. Caed has loved the Wiggles ever since he was a toddler, so when we moved here 3 yrs. ago and discovered this wonderful play land that is dedicated to big red cars, a dinosaur named Dorothy, and 4 of the "coolest" dancing dads we know......well, Caed was hooked. Although we were a bit surprised by this choice thinking he might have outgrown them. Apparently not.....and whatever makes him happy.....we'll do! This party is set for next Sat.
However the second reason "Mic Key" is being talked about so much has nothing to do with the happy little mouse that wears white gloves. Caed has been complaining of his button hurting the last couple of days. He has been scratching at it quite a bit too. So far (the past 16 mos) we have been VERY fortunate with his button. At every clinic visit they always ask if there is any pain or irritation with it.......never! So, for this to be happening for the first time now, we count as a huge blessing. Our nurse coordinator in NE said we first need to try a longer mic-key. She said the balloon might be migrating into the tract, therefore causing pain and irritation. Hopefully this will be a simple, quick fix. (although it will require Mommy to do the dreaded changing out of tubes.......ugghhhh!) If that doesn't work, she said he may have an infection and we'll need to get on an antibiotic. Our home health co. said we needed a dr.'s order to get a bigger button. So, we probably won't get anything accomplished until Tues. or Wed. (slightly frustrating) Caed will be ok, but I hate knowing he isn't feeling well. He has played outside a little today, but continues to come in ever so often to let us know "it hurts." All I know to do right now is give some Tylenol and let him rest. His site is leaky, red, and irritated. I can just tell by looking at it, something isn't right.
Sometimes just wish I could blink my eyes and make it all go away.
one day.......
Wednesday, August 26, 2009
"I just can't stop smiling!"
....those were Caed's words as we drove him to school on Monday. He was so very excited, which of course made it much easier on Mommy and Daddy. He has a wonderful teacher who is a good friend of our family. That simple fact has taken much anxiety off my heart. She KNOWS Caed. She knows all he has been through, and loves him very much. I am so thankful that the Lord has surrounded Caed with many teachers/staff at the Elem. who are watching out for him. I have talked with his teacher and also the school nurse. They feel it would be beneficial for us to share with his class about Caed, what he went through and also show them his mic key button.
I made a little book with pictures so we could read it to them and then let Caed keep it in the classroom the rest of the year. I know it will be good for his friends, but this will be really beneficial for Caed as well. To be able to tell his story to his peers is so good for him! (his play therapist would be so proud) :)
Now, all that needs to be done is taking these to Staples and get them laminated and bound. Caed loves "his book" and has asked me to read it to him many, many times. He especially loves to "read" it to Mommy now. He is excited to take it to his classroom!
Reagan also has had a great first few days of school. Her only complaint the first day was that she didn't have any homework! ha Let's see how long that attitude lasts.
I, on the other hand, have had a lousy back-to-school week! Began getting sick on Sunday afternoon.....and finally hit me HARD Mon. night. I don't think I have felt this sick in a very long time. What started out as a cold, soon went from bad to worse. Ended up with the stomach junk. I am finally starting to feel a little better. The fact that I can sit at the computer is pretty significant.
However......now we have another sickie on our hands. Caed began throwing up early this morning! Oh...I hate this for him. Stomach bugs will hit him harder, and I can only pray his won't last long. So...he made it to school 2 days before getting sick! Hopefully this is just a 'fluke' thing, and won't become a problem. Something the principal and nurse were concerned about when we visited with them last spring. (Caed being exposed to rampant "public school stomach bugs"). This will be a big prayer request for him this school year.
Thank you to all who have been praying specifically for ME lately. I did have a rough few days, but of course God has already eased my heart and given me peace. (just what I prayed for!) I am a home school mom who feels passionately about it and believes in it 100%. So, sending my children off to school 7 hrs. a day has been difficult for me. Although I KNOW God has called me to take some time "off" and use it for some much needed (emotional) rest. I still struggle with issues that led me to home school to begin with. I know this year is going to be GREAT for Reagan and Caed. They will flourish and learn and have lots of fun!! Please don't misunderstand me. I am not bashing public school!!! I am simply saying it is more difficult for me than most are realizing. Just because I am sending my kids off to school this year, doesn't mean my heart has all of a sudden changed. There are those nights when I sit and rock Caleb to sleep and have to stare at my bookshelves lined with hundreds of books and curriculum. Torture....by the way! :) I miss it. It is who I am! And yet, I also know I cannot give them what they need and deserve right now. Hopefully I can use this time to simply catch my breath. I know the Lord has multiple purposes for this year...not just for me, but also Todd, Reagan, Caed, and Caleb!
Ready to see all He has in store for us!
*just something that made me laugh:
Caed has thrown up several times this morning, but a few minutes ago, he sat up and asked me if he could "walk."
Mommy - "Sure! Just take it easy."
Caed - "Well, I remembered in the hospital the doctors said I would get better if I walked."
(ha!.....that was because of the surgeries!!!!) Anyway, I didn't let on.....just smiled and told him he was RIGHT!
Saturday, August 22, 2009
Sleepless in Celina
It's currently 4:45 am, and here I am wide awake. I've never been one to struggle with insomnia. Lori loves her sleep and has always needed an extra helping of it. But something is different tonight. The Lord has awoken me with a heavy burden filled heart.
As hard as I tried, I kept running the usual thoughts in my mind. Those truths that I have come to know and love so dearly.
God is in control.........He knows what is best.......TRUST Him......He uses all things to work out His purpose and plan.......It will all be ok.
And yet.....why am I struggling so? Is it satan coming in to not only steal my slumber but also my joy.....my peace? Or is it GOD? Is He using this to speak to me....to raise some concerns? I have NO clue. And that is why I restlessly sit here in the dark while my family is peacefully asleep.
Dear Lord,
I literally cry out to you tonight! I ask you to reveal Yourself to me. Make your will be known.....and (selfishly) I ask for it to be quick and with clarity. Help me to not worry about others' opinions, to truly seek YOUR will in this manner. God...in my limited understanding I want to cry out "WHY?".......why did it come about this way? It wasn't supposed to be like this! Please help me to stop playing scenarios out in my head that haven't even happened yet. I am worrying about things that may never come about. Oh Lord.....I ask for You to cover me with PEACE. Peace that passes all understanding (just as you did before). I KNOW You are asking me to trust.....to just stop.....to rest in YOU! Cover the situation with Your protecting arms and fill this Mommy's heart with peace.
As hard as I tried, I kept running the usual thoughts in my mind. Those truths that I have come to know and love so dearly.
God is in control.........He knows what is best.......TRUST Him......He uses all things to work out His purpose and plan.......It will all be ok.
And yet.....why am I struggling so? Is it satan coming in to not only steal my slumber but also my joy.....my peace? Or is it GOD? Is He using this to speak to me....to raise some concerns? I have NO clue. And that is why I restlessly sit here in the dark while my family is peacefully asleep.
Dear Lord,
I literally cry out to you tonight! I ask you to reveal Yourself to me. Make your will be known.....and (selfishly) I ask for it to be quick and with clarity. Help me to not worry about others' opinions, to truly seek YOUR will in this manner. God...in my limited understanding I want to cry out "WHY?".......why did it come about this way? It wasn't supposed to be like this! Please help me to stop playing scenarios out in my head that haven't even happened yet. I am worrying about things that may never come about. Oh Lord.....I ask for You to cover me with PEACE. Peace that passes all understanding (just as you did before). I KNOW You are asking me to trust.....to just stop.....to rest in YOU! Cover the situation with Your protecting arms and fill this Mommy's heart with peace.
Monday, August 17, 2009
Will I EVER get used to it?
Disclaimer: if you are a parent of a Short Gut child, then please do yourself a favor and close out of this particular post. This one is not for you. :)
I have many fellow short gut moms all across the country (and now WORLD!) that I stay in contact with on a weekly basis. We all read each other's blogs/websites, and have somehow formed this unique kindred friendship. Very few of us have ever met face to face, but yet there is a bond between us that is strangely closer than the relationships we have with our very best friends. We can share and vent and cry and rejoice together knowing someone else truly understands! Another mom has had to go through what I've gone through.....the pain and frustrations. The loss of our dreams for our child. We can talk in "short gut terminology" and can completely relate to one another. Our pantries have been transformed into pharmacies and most of us did not go to school to become a nurse; however, the calling has been placed on our lives whether we wanted it or not. With that being said.....I know my SBS friends will roll their eyes and laugh aloud at what I am posting today. You see, this is something that is quite common for them. Just another nursing skill they have all mastered, and probably have had to use more times than they care to admit. Most of these moms have had an SBS child since birth. That means they have had to go through all the tubes, pumps, meds even during the "terrible 2's." (which is something I literally cannot even imagine....seeing as I have a healthy one of those right now)
Because Caed was 4 1/2 when his volvulus occurred, he was at an age when he may not have understood what was happening and what the drs. were doing to him. BUT....he knew all the devices hooked up to his little body were not right....it wasn't normal. Therefore, he has always been extremely cautious of his central line and G-tube. Always SO very careful not to pull on them, and instinctively protecting them with every move. We have laughed at how (once he started feeling better) he would always "fall" on his right side. (when playing football or wrestling with Reagan) It is automatic with him...to protect his mic-key button.
For those of you who have faithfully kept up with Caed's blog, you might remember a very similar posting back in Nov. while we were still at UNMC in Omaha. Caed was dancing on the bed.....and all of a sudden his mic-key fell out! It was the first time, and I was a nervous wreck (although trying to be as calm as a cucumber on the outside). I got through it, and it hasn't happened again.
....until Friday morning. We were loading the van at 6am heading out for Lubbock to celebrate Caed's birthday with family. He was simply climbing into the car when he started crying. I looked at him...... and then my eyes fell to the ground where I saw his g-tube/button still attached lying in front of us. I immediately went into frantic mode, all the while trying to calm a scared little boy. I called Todd to run get his "backup" out of the med bag carefully packed away in the van. As I lifted Caed's shirt......the sight was something I don't think I can ever get used to. We have been through a lot with Caed....and ALL his battle scars. He has had tubes going into every inch of his body at some point. And yet....the simple sight of a bloody hole the size of a dime on my little boy's tummy.....can be too much. It reminded me of a gun shot wound. Something completely unnatural, and something mommies shouldn't ever have to do to their small children. The image is burned into my head and quite frankly sends chills up my spine. As I wiped off the blood that was dripping down his belly, my heart was racing and hands shaking. I did what I had to do. Lubricated another button, pushed it back into his abdomen, and inserted the water-filled syringe. All was fine. All was back to "normal" and yet I couldn't calm myself. I wanted to lay down right there on the kitchen floor and cry my eyes out. Not because his button fell out. But just the reminder that this nightmare is still not over. Caed is doing miraculously well! He has made tremendous progress that even the drs. have been amazed at. And yet......it's times like this for me that it all comes crashing back. The emotions. The sadness. The fear. The disbelief.
As I was still standing in the kitchen cleaning up the blood, the counter and floor, Caed walked up squeezing his arms around me and whispered....."I love you Mommy!"
To this little boy, I was his hero that early morning. He was terrified and his mommy fixed it and made it all better!
I feel very similar in many ways. There are those times when the unthinkable happens, we become paralyzed and cry out to God for help. He calmly scoops us up in His big arms....whispering all the while "It's going to be ok. I'm HERE! I will take care of you." And HE does! He doctors our wounds and seals them with a heavenly kiss. He is our ever-present hero......always there to save the day.
I am very aware of my fellow short gut friends and the nightmares that they continue to live each day as well. I am humbled and eternally grateful for where we are today. Where the LORD has brought us. I know that if this is the very worst thing that has happened lately, then we are truly blessed! There are many kids out there who are still suffering. They are still waiting for their miracle of healing and quieter days. We pray for each of them and have grown to love them like they were one of our own.
I have many fellow short gut moms all across the country (and now WORLD!) that I stay in contact with on a weekly basis. We all read each other's blogs/websites, and have somehow formed this unique kindred friendship. Very few of us have ever met face to face, but yet there is a bond between us that is strangely closer than the relationships we have with our very best friends. We can share and vent and cry and rejoice together knowing someone else truly understands! Another mom has had to go through what I've gone through.....the pain and frustrations. The loss of our dreams for our child. We can talk in "short gut terminology" and can completely relate to one another. Our pantries have been transformed into pharmacies and most of us did not go to school to become a nurse; however, the calling has been placed on our lives whether we wanted it or not. With that being said.....I know my SBS friends will roll their eyes and laugh aloud at what I am posting today. You see, this is something that is quite common for them. Just another nursing skill they have all mastered, and probably have had to use more times than they care to admit. Most of these moms have had an SBS child since birth. That means they have had to go through all the tubes, pumps, meds even during the "terrible 2's." (which is something I literally cannot even imagine....seeing as I have a healthy one of those right now)
Because Caed was 4 1/2 when his volvulus occurred, he was at an age when he may not have understood what was happening and what the drs. were doing to him. BUT....he knew all the devices hooked up to his little body were not right....it wasn't normal. Therefore, he has always been extremely cautious of his central line and G-tube. Always SO very careful not to pull on them, and instinctively protecting them with every move. We have laughed at how (once he started feeling better) he would always "fall" on his right side. (when playing football or wrestling with Reagan) It is automatic with him...to protect his mic-key button.
For those of you who have faithfully kept up with Caed's blog, you might remember a very similar posting back in Nov. while we were still at UNMC in Omaha. Caed was dancing on the bed.....and all of a sudden his mic-key fell out! It was the first time, and I was a nervous wreck (although trying to be as calm as a cucumber on the outside). I got through it, and it hasn't happened again.
....until Friday morning. We were loading the van at 6am heading out for Lubbock to celebrate Caed's birthday with family. He was simply climbing into the car when he started crying. I looked at him...... and then my eyes fell to the ground where I saw his g-tube/button still attached lying in front of us. I immediately went into frantic mode, all the while trying to calm a scared little boy. I called Todd to run get his "backup" out of the med bag carefully packed away in the van. As I lifted Caed's shirt......the sight was something I don't think I can ever get used to. We have been through a lot with Caed....and ALL his battle scars. He has had tubes going into every inch of his body at some point. And yet....the simple sight of a bloody hole the size of a dime on my little boy's tummy.....can be too much. It reminded me of a gun shot wound. Something completely unnatural, and something mommies shouldn't ever have to do to their small children. The image is burned into my head and quite frankly sends chills up my spine. As I wiped off the blood that was dripping down his belly, my heart was racing and hands shaking. I did what I had to do. Lubricated another button, pushed it back into his abdomen, and inserted the water-filled syringe. All was fine. All was back to "normal" and yet I couldn't calm myself. I wanted to lay down right there on the kitchen floor and cry my eyes out. Not because his button fell out. But just the reminder that this nightmare is still not over. Caed is doing miraculously well! He has made tremendous progress that even the drs. have been amazed at. And yet......it's times like this for me that it all comes crashing back. The emotions. The sadness. The fear. The disbelief.
As I was still standing in the kitchen cleaning up the blood, the counter and floor, Caed walked up squeezing his arms around me and whispered....."I love you Mommy!"
To this little boy, I was his hero that early morning. He was terrified and his mommy fixed it and made it all better!
I feel very similar in many ways. There are those times when the unthinkable happens, we become paralyzed and cry out to God for help. He calmly scoops us up in His big arms....whispering all the while "It's going to be ok. I'm HERE! I will take care of you." And HE does! He doctors our wounds and seals them with a heavenly kiss. He is our ever-present hero......always there to save the day.
I am very aware of my fellow short gut friends and the nightmares that they continue to live each day as well. I am humbled and eternally grateful for where we are today. Where the LORD has brought us. I know that if this is the very worst thing that has happened lately, then we are truly blessed! There are many kids out there who are still suffering. They are still waiting for their miracle of healing and quieter days. We pray for each of them and have grown to love them like they were one of our own.
Saturday, August 15, 2009
One more birthday blessing......
HAPPY 6th BIRTHDAY Caed!!!!
Our hearts are full today. There is excitement in the air. Caed has officially turned 6 yrs. old! There will be a small party with family this afternoon.....a Spiderman cake, balloons, and of course some presents. And yet, once again there are a mixture of emotions. Celebration, joy, and happiness....coupled with contemplation, thankfulness, and humble hearts. God has showed His faithfulness and mercy.....and truly as we look back even one year ago......we are in awe. Amazed at the change....the progress......the "normalcy." We praise God for this day. A day to remember his love and how He has BLESSED our socks off!
Caed, you are our JOY! You can light up a room with just your smile. God has gifted you with a spunky personality and an entertaining spirit. May you continue to bring JOY and laughter to all those you are around. We pray for more birthdays just like today. We love you!
Caed...our born-to-be drummer. He has taken to his new set of drums like a charm. Todd has been giving him pointers and he practices constantly. (sorry...Lee & Teri - hope they don't keep you up at night!!)
Our hearts are full today. There is excitement in the air. Caed has officially turned 6 yrs. old! There will be a small party with family this afternoon.....a Spiderman cake, balloons, and of course some presents. And yet, once again there are a mixture of emotions. Celebration, joy, and happiness....coupled with contemplation, thankfulness, and humble hearts. God has showed His faithfulness and mercy.....and truly as we look back even one year ago......we are in awe. Amazed at the change....the progress......the "normalcy." We praise God for this day. A day to remember his love and how He has BLESSED our socks off!
Caed, you are our JOY! You can light up a room with just your smile. God has gifted you with a spunky personality and an entertaining spirit. May you continue to bring JOY and laughter to all those you are around. We pray for more birthdays just like today. We love you!
Caed...our born-to-be drummer. He has taken to his new set of drums like a charm. Todd has been giving him pointers and he practices constantly. (sorry...Lee & Teri - hope they don't keep you up at night!!)
Tuesday, August 11, 2009
The Trade In
Big things are happening here in the Hollingsworth household.
First off.....Caed is now down to night feeds only. Therefore that means....NO MORE BACKPACK! We have been weaning him down over the last 9 months, and the time has finally arrived. Currently Caed is only receiving about 10-12 hrs. of tube feeds/daily (or should I say...nightly). This is SUCH a praise! Where do we go from here? Not exactly sure. I'm guessing they will want to keep him hooked up at night for awhile. Then...we will probably continue to wean until.....he no longer needs any of it! Honestly, I can't even imagine that day. As much as I have longed for that, it will be "strange" not having that daily duty. Even now.....there is an odd feeling seeing his backpack hidden behind the piles of paper goods on the bottom shelf of the pantry. There are such deep memories associated with it. Memories of a time when our life centered around doctors and hospitals. A time when we became unofficial members of the "sick child club." (I think we still have that membership unfortunately) However....it is a secret membership that only other parents of sick kids can relate to. It involves going out in public and getting "the stares." Something is different about that child......he is wearing a backpack and it's not even time for school! Oh, but wait....there's more! This backpack seems to be connected to him....to his stomach. Oh dear! Don't look! Well, maybe just one more glance...... We've all experienced it in some form or fashion. Those of us in this "secret club." But now....my little boy doesn't have that distinguishing trademark of 'sickness.' He looks, acts, talks, completely normal. This is an answer to prayer! And yet....it's hard to let it go. It has defined us now for the past 18 months. People rarely talk to us without mentioning Caed. He has been the center of a traumatic filled year for our family. And now....the page seems to be turning. Turning to a new chapter. One instead filled with joy, thanksgiving, and a return to life as we once knew it. Well, almost. You see, the membership to this "secret club" unfortunately never expires....it's lifelong. So, there will always be aspects that have to be dealt with. And without getting too ahead of myself, I have to remember we ARE only 18 mos. out. (although it sure seems like a lifetime!) I know there are no guarantees that Caed's little backpack will stay tucked away. But, for now....WE WILL REJOICE....for the Lord heard our earnest pleas and saw fit to grant our humble requests.
The second bit of exciting news is that Reagan and Caed will be attending public school this year. Yes....I am the proud (and overly emotional) mom who will be sending not 1...but 2 kids off to school for the first time in 12 short days!!!! Most of you probably know that I have home schooled for the last 3 years. It was a decision I felt 100% confident in. It was plain and simple....a CALLING I felt so strongly from the Lord. I can't describe it, but will only say....if you have felt God calling you to do something....then you know how hard it can be to run away from it. And believe me, I tried. From my own personal experience, homeschooling was tough only in the sense that my family was in the great minority. It was difficult always feeling that others looked down on you and this crazy decision you had made for your kids. And yet, Todd and I felt so very passionate about it. I STILL feel passionate about it! But things have changed in our family. They have changed in ways I never would have dreamed. My motto during the last 3 years has always been.....I will continue to do this until the Lord makes it clear otherwise. Well.....I assume you can guess what has happened.
This past year and 1/2 has honestly been the most difficult time of my life. Period. Like all tragic experiences, it hit us blind sighted without any warning....or permission. Our life was full of newness and utter joy the 2 weeks leading up to Caed's illness. We had a brand new baby. Everything was as it should be. But God had a different plan for our family. He wanted to take us to an alternate route. It was an exhausting, uphill climb.....and at times, it seemed this "new trail" had gotten the best of us, and we just couldn't take another step. But like good Fathers do, He picked us up and carried us the entire journey. We are now past the most rigid and difficult parts, and I am so incredibly grateful. This alternate route was hard (no, it was down right excruciating), but totally worth it. He taught us things and revealed His character in ways we would have NEVER seen other wise.
But now.....I feel the need to rest. This is something that I have fought for many months now. I began to see evidences of it physically, emotionally, and spiritually. It was affecting every area of my life. As most of you moms all know.....one of the hardest things for us to do is TAKE CARE OF OURSELVES. I believe God naturally gives us that "maternal....nurturing" instinct. The NEED to take care of others. However, I have learned the hard way that we cannot be all we need to be for our families if we ourselves are not "well." I guess the old saying......"If Mama aint happy, aint no body happy" actually rings some truth. This has been one of the toughest decisions I have had to make in a very long time. It has absolutely nothing to do with public school. I, myself have a degree and taught in the public school for several years. It is more the matter of a calling I feel that was placed on my life. God gave me the desire and passion for it! I believe in it wholeheartedly, and yet for many reasons....I also feel 100% that He is calling me out right now. I desperately need this time to simply catch my breath. And to restore a bond that was painfully broken with Caleb. It is something I have had a terribly difficult time admitting, but I need time for ME....time to heal.....and a time to be refreshed. With the way things have been, I was doing my family more harm than good by "toughing it out!" I know there will be critics. Those who do not understand (just like before....when we chose to home school), but I have learned SO much through our experience. One of which......it doesn't matter what anyone else is doing or what their opinion of you is......do what is BEST for your family. Period.
So with ALL that being said.......we have gone school-shopping for the very first time. We have bags filled with all the necessary supplies......crayons, paper, pencils, and glue. And have even had to worry about back-to-school clothes. For some reason, public school doesn't allow you to "do school" in your pajamas......like we were sometimes accustomed to. The kids are excited...and a little nervous. Just like their Mommy. But, Todd and I have a peace about this decision, and know the same God who held us through the "storm" of 2008.....will also be with us through the (Lord-willing) "calm" of 2009!
Trading one model in..............................
for another................!!
First off.....Caed is now down to night feeds only. Therefore that means....NO MORE BACKPACK! We have been weaning him down over the last 9 months, and the time has finally arrived. Currently Caed is only receiving about 10-12 hrs. of tube feeds/daily (or should I say...nightly). This is SUCH a praise! Where do we go from here? Not exactly sure. I'm guessing they will want to keep him hooked up at night for awhile. Then...we will probably continue to wean until.....he no longer needs any of it! Honestly, I can't even imagine that day. As much as I have longed for that, it will be "strange" not having that daily duty. Even now.....there is an odd feeling seeing his backpack hidden behind the piles of paper goods on the bottom shelf of the pantry. There are such deep memories associated with it. Memories of a time when our life centered around doctors and hospitals. A time when we became unofficial members of the "sick child club." (I think we still have that membership unfortunately) However....it is a secret membership that only other parents of sick kids can relate to. It involves going out in public and getting "the stares." Something is different about that child......he is wearing a backpack and it's not even time for school! Oh, but wait....there's more! This backpack seems to be connected to him....to his stomach. Oh dear! Don't look! Well, maybe just one more glance...... We've all experienced it in some form or fashion. Those of us in this "secret club." But now....my little boy doesn't have that distinguishing trademark of 'sickness.' He looks, acts, talks, completely normal. This is an answer to prayer! And yet....it's hard to let it go. It has defined us now for the past 18 months. People rarely talk to us without mentioning Caed. He has been the center of a traumatic filled year for our family. And now....the page seems to be turning. Turning to a new chapter. One instead filled with joy, thanksgiving, and a return to life as we once knew it. Well, almost. You see, the membership to this "secret club" unfortunately never expires....it's lifelong. So, there will always be aspects that have to be dealt with. And without getting too ahead of myself, I have to remember we ARE only 18 mos. out. (although it sure seems like a lifetime!) I know there are no guarantees that Caed's little backpack will stay tucked away. But, for now....WE WILL REJOICE....for the Lord heard our earnest pleas and saw fit to grant our humble requests.
The second bit of exciting news is that Reagan and Caed will be attending public school this year. Yes....I am the proud (and overly emotional) mom who will be sending not 1...but 2 kids off to school for the first time in 12 short days!!!! Most of you probably know that I have home schooled for the last 3 years. It was a decision I felt 100% confident in. It was plain and simple....a CALLING I felt so strongly from the Lord. I can't describe it, but will only say....if you have felt God calling you to do something....then you know how hard it can be to run away from it. And believe me, I tried. From my own personal experience, homeschooling was tough only in the sense that my family was in the great minority. It was difficult always feeling that others looked down on you and this crazy decision you had made for your kids. And yet, Todd and I felt so very passionate about it. I STILL feel passionate about it! But things have changed in our family. They have changed in ways I never would have dreamed. My motto during the last 3 years has always been.....I will continue to do this until the Lord makes it clear otherwise. Well.....I assume you can guess what has happened.
This past year and 1/2 has honestly been the most difficult time of my life. Period. Like all tragic experiences, it hit us blind sighted without any warning....or permission. Our life was full of newness and utter joy the 2 weeks leading up to Caed's illness. We had a brand new baby. Everything was as it should be. But God had a different plan for our family. He wanted to take us to an alternate route. It was an exhausting, uphill climb.....and at times, it seemed this "new trail" had gotten the best of us, and we just couldn't take another step. But like good Fathers do, He picked us up and carried us the entire journey. We are now past the most rigid and difficult parts, and I am so incredibly grateful. This alternate route was hard (no, it was down right excruciating), but totally worth it. He taught us things and revealed His character in ways we would have NEVER seen other wise.
But now.....I feel the need to rest. This is something that I have fought for many months now. I began to see evidences of it physically, emotionally, and spiritually. It was affecting every area of my life. As most of you moms all know.....one of the hardest things for us to do is TAKE CARE OF OURSELVES. I believe God naturally gives us that "maternal....nurturing" instinct. The NEED to take care of others. However, I have learned the hard way that we cannot be all we need to be for our families if we ourselves are not "well." I guess the old saying......"If Mama aint happy, aint no body happy" actually rings some truth. This has been one of the toughest decisions I have had to make in a very long time. It has absolutely nothing to do with public school. I, myself have a degree and taught in the public school for several years. It is more the matter of a calling I feel that was placed on my life. God gave me the desire and passion for it! I believe in it wholeheartedly, and yet for many reasons....I also feel 100% that He is calling me out right now. I desperately need this time to simply catch my breath. And to restore a bond that was painfully broken with Caleb. It is something I have had a terribly difficult time admitting, but I need time for ME....time to heal.....and a time to be refreshed. With the way things have been, I was doing my family more harm than good by "toughing it out!" I know there will be critics. Those who do not understand (just like before....when we chose to home school), but I have learned SO much through our experience. One of which......it doesn't matter what anyone else is doing or what their opinion of you is......do what is BEST for your family. Period.
So with ALL that being said.......we have gone school-shopping for the very first time. We have bags filled with all the necessary supplies......crayons, paper, pencils, and glue. And have even had to worry about back-to-school clothes. For some reason, public school doesn't allow you to "do school" in your pajamas......like we were sometimes accustomed to. The kids are excited...and a little nervous. Just like their Mommy. But, Todd and I have a peace about this decision, and know the same God who held us through the "storm" of 2008.....will also be with us through the (Lord-willing) "calm" of 2009!
Trading one model in..............................
for another................!!
Tuesday, August 4, 2009
unfulfilled passion
It's amazing what one simple compliment can do.
There are many times I feel genuinely positive about something or someone, and yet never get around to actually TELLING them! Why do I allow myself to remain quiet?
For I know what one single compliment did for me.....many many years ago.
I am not certain the year, but think it was around the time Todd and I got married. (1996-ish) I was attending a bridal shower for a sweet friend and was spontaneously handed a camera at the door and asked if I would mind taking pictures that afternoon. I didn't think much of it. Click here. Click there. Captured the "normal" wedding shower shots. Several days or weeks later, the bride came up to me at church and......changed my life. She offered what I believed to be a genuine heart felt compliment regarding the photos I took of her shower. And unknowingly, she gave me a boost of confidence that the Lord knew I needed.
From that day so long ago, until now.....her words still echo in my head. It has been a driving force, and has provoked a passion in my heart for photography. For many years to follow I did not have the money to buy the camera I truly desired. Therefore, I felt trapped. The potential and deep desire were there, but yet I didn't have the means by which to carry it out the way I wanted. So, I did the next best thing. Bought books. Lots and lots of photography books. And yet, even then it was hard to learn about the features of great quality cameras and not have one to actually learn on.
Finally, last summer.....my dream came true! ha! My parents helped me to buy my very first digital SLR. A Nikon D60. I have absolutely loved every minute of it, and yet.....something is still missing......... an unfulfilled passion.
One of my worst characteristics is my low self-confidence. I have struggled with it now for 36 years. There may have been things throughout my life that I had some natural talent in, and yet I never achieved my full potential because in my head....I wasn't good enough. "Others are better, smarter, faster......" As you can guess, I struggle with this in the area of photography too. To be completely honest, I am scared to death of failure. To set myself out there...... only to be told....."you can't do it."
Maybe I am getting wiser in my "old age." Either that, or I'm just realizing time is passing me by. Whether or not the Lord has given me a talent in this area or simply put a passion for it in my heart, it doesn't matter. I deeply feel the need to finally begin chasing this "crazy dream." Despite the fact that I don't have a clue what exactly it entails.
I literally look at EVERYTHING as though my eye is a camera. (kinda a weird confession I guess). And if I could permanently attach one to my face, that would be even better. ha! I have been researching photography institutes online and local college courses. There is SO much I want to learn. I think I have found something that just might work for this stay home mom of 3. It won't be easy, and the precious family time that I covet so much......will have to be compromised some. But, little by little.....I hope to turn this secret desire into a full reality!!!
Looking forward to what the future holds.............
(and by the way Christy B., THANK YOU!!)
There are many times I feel genuinely positive about something or someone, and yet never get around to actually TELLING them! Why do I allow myself to remain quiet?
For I know what one single compliment did for me.....many many years ago.
I am not certain the year, but think it was around the time Todd and I got married. (1996-ish) I was attending a bridal shower for a sweet friend and was spontaneously handed a camera at the door and asked if I would mind taking pictures that afternoon. I didn't think much of it. Click here. Click there. Captured the "normal" wedding shower shots. Several days or weeks later, the bride came up to me at church and......changed my life. She offered what I believed to be a genuine heart felt compliment regarding the photos I took of her shower. And unknowingly, she gave me a boost of confidence that the Lord knew I needed.
From that day so long ago, until now.....her words still echo in my head. It has been a driving force, and has provoked a passion in my heart for photography. For many years to follow I did not have the money to buy the camera I truly desired. Therefore, I felt trapped. The potential and deep desire were there, but yet I didn't have the means by which to carry it out the way I wanted. So, I did the next best thing. Bought books. Lots and lots of photography books. And yet, even then it was hard to learn about the features of great quality cameras and not have one to actually learn on.
Finally, last summer.....my dream came true! ha! My parents helped me to buy my very first digital SLR. A Nikon D60. I have absolutely loved every minute of it, and yet.....something is still missing......... an unfulfilled passion.
One of my worst characteristics is my low self-confidence. I have struggled with it now for 36 years. There may have been things throughout my life that I had some natural talent in, and yet I never achieved my full potential because in my head....I wasn't good enough. "Others are better, smarter, faster......" As you can guess, I struggle with this in the area of photography too. To be completely honest, I am scared to death of failure. To set myself out there...... only to be told....."you can't do it."
Maybe I am getting wiser in my "old age." Either that, or I'm just realizing time is passing me by. Whether or not the Lord has given me a talent in this area or simply put a passion for it in my heart, it doesn't matter. I deeply feel the need to finally begin chasing this "crazy dream." Despite the fact that I don't have a clue what exactly it entails.
I literally look at EVERYTHING as though my eye is a camera. (kinda a weird confession I guess). And if I could permanently attach one to my face, that would be even better. ha! I have been researching photography institutes online and local college courses. There is SO much I want to learn. I think I have found something that just might work for this stay home mom of 3. It won't be easy, and the precious family time that I covet so much......will have to be compromised some. But, little by little.....I hope to turn this secret desire into a full reality!!!
Looking forward to what the future holds.............
(and by the way Christy B., THANK YOU!!)
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