Justin had his first appointment today with the pediatrician to see what stage we're in with the neurofibromatosis (funny thing, I've spelled this so much I don't have to look it up anymore?). The pediatrician had him strip down and searched him for discolorations on his body called cafe au laits. After searching him extensively (checking for discolorations, checking his joints, spine, etc), she told me that he has zero cafe au laits on his body. None. The problem is (or the praise?) that one of the main symptoms of neurofirbromatosis type one is these spots. She said you can have it without them, but it's very uncommon. She also said that his muscle tone is great, so she's extremely confused by the diagnosis. She's marking it down as a mild case for now and said she wants him to go ahead and see the opthamologist (tomorrow @ 1:00), get his MRI (they called to schedule, but since he has to be sedated, they're calling back), and see the geneticist (he'll have ALL the answers, apparently...).
The absence of the cafe au laits made me research type two a bit more, also and I'm praying fervently that's not what we're dealing with. It concerns me because the tumor they removed from his neck was on a nerve to the ear (if you recall, he had some major ear pain post-surgery). So please, be in prayer that's not what this is all indicative of because type two would be so much harder on him, regardless of the severity.
Another thing about neurofibromatosis is the tumors that grow cause pain. While Justin's tumor didn't cause pain directly to the spot, he was in pain and he wasn't resting well. Since that filth has left his body, we've noticed a significant improvement in his sleep patterns (not sleeping as much) and his mood altogether. So if nothing else good comes of this, praise God my baby's not in whatever pain this was causing him anymore.
If everything there comes back clear, she's going to request a second opinion on the biopsy reading (another pathologist will review it). She said it is all pretty black and white as far as diagnosing this particular disease, but there's just enough grey that it could be read differently by a different set of eyes. If the second opinion still shows neurofibromatosis, then one of two things is going on. One, it is a very, very mild case or, two, it just hasn't started progressing yet. As I said yesterday, the common diagnosis age is 3-10, so he's just on the edge of being where it's even diagnosable (is that a word? Not sure, but I like it...). It could appear to be nothing and then just break out rampantly, it could just be a very mild form, or it could be a misread.
I'm not holding my breath for a misread. This doesn't mean I don't have faith, but it means I'm already going through the process of accepting it and I don't want to get my hopes up and start all over in the process. I didn't sleep last night and neither did Jesse. Funny thing is, I don't think either of us realized the other didn't sleep. How does that happen?
On the docket for tomorrow- Justin and Jaleigh both have follow ups to be released from Dr. Vaidya @ 10:30 in the morning, then Just will have his eye tests done @ 1:00 tomorrow. Then, we'll finish the day off with my OB appointment, where we'll hopefully get another sono to tell us exactly what our little bean is. This will be huge and we'll celebrate. I think our little family needs something to celebrate and I'm hoping baby cooperates and removes the foot from the crotch. :)
Many of you have asked how Jess and I are doing. We're okay. I'm exhausted, he's exhausted. We have so many questions and they're the type of questions you can't google. We WILL get through this, though. God may not provide us all the answers, but he'll provide us with peace and a means of coping. We just need rest. We need rest for our bodies and rest for our souls. It doens't look like rest for either is coming anytime soon, but again, He'll carry us through. It's seriously just a LOT to process when you look at your perfect, beautiful blessing of a child who has already been through so much and know it's just beginning. Thank you all for your continued prayers and support. We love each and every one of you and we're so blessed to have you as a part of our lives.
Tuesday, May 24, 2011
Monday, May 23, 2011
Justin's biopsy results
First and foremost, thank you all for your continued prayers over our family, specifically our babies. I'm happy to report Jaleigh is finally in good health. She's happier and sleeping better since her surgery, which makes for a better rested mommy and daddy. She's also very quickly putting on the pounds and resembling the Michelin baby. I'll not complain, though, because I'd rather her fat and happy than malnourished and miserable.
Justin's ENT called today and gave us his biopsy results. Let me say first we are seriously blessed with a very sincere ENT who truly, truly cares about his patients. He informed me first that Justin's lump was a tumor, but that it was benign. He said it was not, however; on his lymph node as they originally suspected. He said it was a growth called a neurofibroma, which is a result of a rare genetic disorder (think: 1 in 3k for type one, 1 in 50k for type 2) called neurofibromatosis. He told me he'd already called our pediatrician (again- AMAZING doctor, we're so blessed) and filled her in. He said in all the time he'd been doing surgeries and biopsies, he'd never seen a neurofibroma come back and that he actually had to go to the books to give me answers. He said our pediatrician was doing research as we spoke and we needed to follow up with her for x-rays, MRIs and bloodwork.
I called his pediatrician's office and made an appointment, and then (naturally, as every freaked out mother would...) I hit google. By the time I had myself good and freaked out, the pediatrician called me. Like I said, I seriously have the best pediatrician on the planet. She told me that she'd received the news and been researching ever since. She said she put herself in my shoes and knew she'd be freaking out so she had to call me personally to talk through it all.
Basically, from what she has said, there are two types of neurofibromatosis and further testing will determine which he has. She said she is almost certain we're dealing with type one, which is more common and less severe. The first specialist we will see is an opthamologist. He will do images of Justin's eyes to ensure there are no tumors on his eyes or the optic nerve. If there are tumors on his eyes or optic nerve, it will require semi-annual screening to monitor the tumors. They will also monitor his vision closely, as these tumors can cause complete and/or partial blindness. If Just has any type of growths on his eyes, that will automatically mean Jaleigh and our little bean will need annual testing, as well.
We will also see a geneticist, who will do some pretty extensive testing on Justin and the rest of us. The majority of the time, a parent passes this gene on to their child but this specific disease has also been known to spontaneously show up in a child and they will be a carrier from then on. They will test Jesse, Justin, Jaleigh and me to see which of us are potentially carriers. The blood tests aren't always completely conclusive, but his doctor said they'd at least see if they could get some results from it.
Justin will also be scheduled for an MRI of his brain. This is very important because it will determine whether he has type one or two. They will sedate him for the MRI. If he comes back with bilateral lesions on his brain it will mean an automatic type two diagnosis. It will also determine whether there are any other lesions or tumors on his brain.
Type one neurofibromatosis is a disease of the nervous system. Basically, anywhere he has a nerve, he can have a tumor grow. They will monitor any growths he has because, while they don't grow outwardly, they can "grow roots," if you will, and grow inwardly, damaging vital organs. There is a 3-5% chance each of these benign tumors could turn cancerous. Anyway, the most common places for these tumors to pop up (though they can pop up virtually anywhere) are the spine, eyes/optic nerve, brain, kidneys, and neck region. As long as they've 1) not turned cancerous and, 2) aren't affecting vital organs in life-threatening manners, they will not surgically remove them because many times the risk of surgery is greater than the benefit.
His pediatrician said that, even in the mild cases, we can expect there to be growths on the eyes/optic nerve, scoliosis (very common in children with type 1), and, if there are any growths on the brain, we can expect behavioral changes to occur (think: ADD, attention issues).
The ages where this disease is typically caught is from 3 years-13 years, so Just falls right in the criteria where it can be caught. Children who have it typically are shorter in stature, have larger heads, growths under or on top of the skin, and spots with skin discoloration. We go in to the pediatrician in the morning where she will strip him down and do a full exam so they can start monitoring any other growths on his little body.
Some of you probably remember the unexplained seizures he had when we were back in NC. This diagnosis explains the seizures, his short stature, and his oversized melon. :)
I'd had full faith when the phone rang today the doctor would tell us it wasn't cancerous and everything was fine. I've spent the afternoon in a state of shock. I know this is better than cancer but let's face it, it still sucks. Bad. I wouldn't wish it on anyone, but I don't understand why it has to be my baby. We'll not hold our heads up, rather we'll get on our knees because this is just another storm that God will carry us through. Jess, the babies and I are blessed in a big way and this is just another means of testing our faith. By the grace of God, we'll prevail and God will use this for His glory.
I got the phone call today at 2:00, and then one of my friends pulled up in the driveway. She stayed and watched the kids, talked me through stuff, researched, and just loved my family and me until 8:00 this evening. Then she took Sis home with her so we could take time to figure out what our next move will be, communicate with Justin what's ahead of him and just be with him. As difficult as it is to be away from our families, God has provided us a family here and we're so grateful to each of them. The impact they've had on our lives is unspeakable.
So what can you pray for? Pray for peace and understanding as all this unfolds. They will be doing a LOT of checking, poking, prodding, blood-drawing, and questioning to my little angel in the weeks and years to come. Pray for peace and understanding for him. It's so much for his sweet little brain to comprehend. This is something we must monitor for him for the rest of his life.
Momentarily, as this all unfolded, I was so mad at God. How in the WORLD could he do this to MY baby? My perfect baby? Another dear friend called and prayed with me and I realised, God didn't do this TO my baby and this is no surprise to Him. He knew what was coming, how we would react and He was there waiting for us once we processed it all. We're finding comfort in that for now. So, thank you for your prayers, past, present and future. The support you've given us has carried us through to this point. I've taken a muscle relaxer, brought my son downstairs to snuggle, and I'm ready to climb up in the Father's lap and rest in him. Good night.
Justin's ENT called today and gave us his biopsy results. Let me say first we are seriously blessed with a very sincere ENT who truly, truly cares about his patients. He informed me first that Justin's lump was a tumor, but that it was benign. He said it was not, however; on his lymph node as they originally suspected. He said it was a growth called a neurofibroma, which is a result of a rare genetic disorder (think: 1 in 3k for type one, 1 in 50k for type 2) called neurofibromatosis. He told me he'd already called our pediatrician (again- AMAZING doctor, we're so blessed) and filled her in. He said in all the time he'd been doing surgeries and biopsies, he'd never seen a neurofibroma come back and that he actually had to go to the books to give me answers. He said our pediatrician was doing research as we spoke and we needed to follow up with her for x-rays, MRIs and bloodwork.
I called his pediatrician's office and made an appointment, and then (naturally, as every freaked out mother would...) I hit google. By the time I had myself good and freaked out, the pediatrician called me. Like I said, I seriously have the best pediatrician on the planet. She told me that she'd received the news and been researching ever since. She said she put herself in my shoes and knew she'd be freaking out so she had to call me personally to talk through it all.
Basically, from what she has said, there are two types of neurofibromatosis and further testing will determine which he has. She said she is almost certain we're dealing with type one, which is more common and less severe. The first specialist we will see is an opthamologist. He will do images of Justin's eyes to ensure there are no tumors on his eyes or the optic nerve. If there are tumors on his eyes or optic nerve, it will require semi-annual screening to monitor the tumors. They will also monitor his vision closely, as these tumors can cause complete and/or partial blindness. If Just has any type of growths on his eyes, that will automatically mean Jaleigh and our little bean will need annual testing, as well.
We will also see a geneticist, who will do some pretty extensive testing on Justin and the rest of us. The majority of the time, a parent passes this gene on to their child but this specific disease has also been known to spontaneously show up in a child and they will be a carrier from then on. They will test Jesse, Justin, Jaleigh and me to see which of us are potentially carriers. The blood tests aren't always completely conclusive, but his doctor said they'd at least see if they could get some results from it.
Justin will also be scheduled for an MRI of his brain. This is very important because it will determine whether he has type one or two. They will sedate him for the MRI. If he comes back with bilateral lesions on his brain it will mean an automatic type two diagnosis. It will also determine whether there are any other lesions or tumors on his brain.
Type one neurofibromatosis is a disease of the nervous system. Basically, anywhere he has a nerve, he can have a tumor grow. They will monitor any growths he has because, while they don't grow outwardly, they can "grow roots," if you will, and grow inwardly, damaging vital organs. There is a 3-5% chance each of these benign tumors could turn cancerous. Anyway, the most common places for these tumors to pop up (though they can pop up virtually anywhere) are the spine, eyes/optic nerve, brain, kidneys, and neck region. As long as they've 1) not turned cancerous and, 2) aren't affecting vital organs in life-threatening manners, they will not surgically remove them because many times the risk of surgery is greater than the benefit.
His pediatrician said that, even in the mild cases, we can expect there to be growths on the eyes/optic nerve, scoliosis (very common in children with type 1), and, if there are any growths on the brain, we can expect behavioral changes to occur (think: ADD, attention issues).
The ages where this disease is typically caught is from 3 years-13 years, so Just falls right in the criteria where it can be caught. Children who have it typically are shorter in stature, have larger heads, growths under or on top of the skin, and spots with skin discoloration. We go in to the pediatrician in the morning where she will strip him down and do a full exam so they can start monitoring any other growths on his little body.
Some of you probably remember the unexplained seizures he had when we were back in NC. This diagnosis explains the seizures, his short stature, and his oversized melon. :)
I'd had full faith when the phone rang today the doctor would tell us it wasn't cancerous and everything was fine. I've spent the afternoon in a state of shock. I know this is better than cancer but let's face it, it still sucks. Bad. I wouldn't wish it on anyone, but I don't understand why it has to be my baby. We'll not hold our heads up, rather we'll get on our knees because this is just another storm that God will carry us through. Jess, the babies and I are blessed in a big way and this is just another means of testing our faith. By the grace of God, we'll prevail and God will use this for His glory.
I got the phone call today at 2:00, and then one of my friends pulled up in the driveway. She stayed and watched the kids, talked me through stuff, researched, and just loved my family and me until 8:00 this evening. Then she took Sis home with her so we could take time to figure out what our next move will be, communicate with Justin what's ahead of him and just be with him. As difficult as it is to be away from our families, God has provided us a family here and we're so grateful to each of them. The impact they've had on our lives is unspeakable.
So what can you pray for? Pray for peace and understanding as all this unfolds. They will be doing a LOT of checking, poking, prodding, blood-drawing, and questioning to my little angel in the weeks and years to come. Pray for peace and understanding for him. It's so much for his sweet little brain to comprehend. This is something we must monitor for him for the rest of his life.
Momentarily, as this all unfolded, I was so mad at God. How in the WORLD could he do this to MY baby? My perfect baby? Another dear friend called and prayed with me and I realised, God didn't do this TO my baby and this is no surprise to Him. He knew what was coming, how we would react and He was there waiting for us once we processed it all. We're finding comfort in that for now. So, thank you for your prayers, past, present and future. The support you've given us has carried us through to this point. I've taken a muscle relaxer, brought my son downstairs to snuggle, and I'm ready to climb up in the Father's lap and rest in him. Good night.
Saturday, May 21, 2011
If you're reading this, you weren't left behind...
I had a dear friend message me on facebook today, asking me how I could be so at peace with the potential of being raptured today. Don't get me wrong; I knew there was no way in the world we were going to be raptured 5-21-2011 at 6:00 p.m. via earthquake (think- Matthew 24:36), but a part of me was completely at peace if for some reason it did happen. And, just for the record, I'm thinking it won't be 12-21-2012, either...
Those of you who know me know I was married in my past life. If you know that, you also know that it was a terrible relationship. Here's the thing- I've been a Christian since I was in 8th grade (I'll never forget it, my daddy and I were saved and baptised together), but I've always been terrified of death. I've been terrified at the potential of being raptured. Looking back, that's just crazy, isn't it? To be terrified at spending an eternity with God, no sickness, no crying, no pain. Just me and my sweet husband, our babies and our loved ones for eternity (think: Revelation 21:4). Who would be terrified of that?
Anyway, I remember praying to God while I was married to my ex husband to PLEASE, PLEASE, PLEASE not kill me (yes, kill me. Again, if you know my past, you understand) or send His son back until I had the opportunity to do two things: One, I wanted to know what it was to be loved unconditionally as husband and wife and two, I wanted to have a child to know the love of a parent. I felt, at the time, it was God's promise to me. And let's be honest, I'm married to the man of my dreams and we have 2.5 beautiful babies, so it must have been his promise, no? God has made many promises to us and if there's one thing I've learned about Him, it's that He keeps His promises. AND...and, usually He goes above and beyond keeping his promises and blesses us ten-fold. I knew it was a stretch to have ONE baby and God outwitted every doctor I've ever seen and gave me two more babies on top of my sweet son. I can see God up there going, yeah, you ain't seen nothing yet, kid. I'm not even CLOSE to being done (I like to envision God with a sense of humor...)
Yes, as a matter of fact, I am blessed. Big time.
Anyway, if you'd asked me when the y2k scare happened if I was ready for the world to end and spend eternity in heaven, I'd have told you no way. If you'd asked me at any of these other times when people claimed the world would end at X on Y, I'd have told you I wasn't ready and I was scared out of my ever-lovin' mind.
And let me just say, bless poor Reverand Camping's heart. He's devoted (see: wasted) nearly all his life to trying to determine when his life will end, rather than live it. It really, really is heartbreaking. Do I think he's a false prophet? No. I think he's a confused child of God who is so ready to be with His Savior that he made it his life's work to figure out WHEN it would happen. The bible does tell us, though, to beware of false prophets (think- Matthew 7:15). I do believe there will be many, many more predictions of when Christ's second return will be and I believe they too, will be wrong.
I can honestly look at my life right this very second and say it is complete. I'm so full of joy and appreciation for all my Savior has blessed me with. I have the best husband on the planet, he loves me like I've never been loved before (and I'm certain I'll never be loved again; I'm a difficult person to love). I have two of the most beautiful, sweetest spirited babies anyone could ever ask for. I have my faith, a roof over my head, peace with my parents (long time coming- I love you, momma and daddy). I know there's still so much more to live for (first days of school, high school, prom, college, marriage, grandbabies...), and live I will until He calls me home. But if God decided to end it all today, all I can say is bring it on!
So, when I told my friend this morning I was at peace with it all, it really got me to thinking why. When I look back at the old me, the me before my faith was 110% in Christ alone, I had a big problem with loving and accepting myself. The fact of the matter is if I don't love me, I can't expect anyone else to love me. Better still, if I don't love me, I'm less likely to let anyone IN to love me (think: Christ). Once I allowed Christ to live and dwell within me, He opened my life (eyes, heart...) to a whole new kind of love. He opened my eyes to a love for myself, a love for Him and a love for others.
You can call it maturity in age or maturity in spirit (I like to think both...), but while I knew there was no way we'd be raptured this evening, part of me was just a smidge disappointed at 6:05 pm when there was no earthquake. I can't wait for the day I don't have to worry about my babies' health, the bills piling up, our lights staying on. I'll get to see my Nampaw, my Paw-paw, all the relatives who've gone before me. I'll see Kara, Kindle, JD. They'll all be waiting for my sweet family and me as we are raptured up into heaven to spend eternity just loving and being with each other and with our Savior. Seriously? What could be better than that?
Those of you who know me know I was married in my past life. If you know that, you also know that it was a terrible relationship. Here's the thing- I've been a Christian since I was in 8th grade (I'll never forget it, my daddy and I were saved and baptised together), but I've always been terrified of death. I've been terrified at the potential of being raptured. Looking back, that's just crazy, isn't it? To be terrified at spending an eternity with God, no sickness, no crying, no pain. Just me and my sweet husband, our babies and our loved ones for eternity (think: Revelation 21:4). Who would be terrified of that?
Anyway, I remember praying to God while I was married to my ex husband to PLEASE, PLEASE, PLEASE not kill me (yes, kill me. Again, if you know my past, you understand) or send His son back until I had the opportunity to do two things: One, I wanted to know what it was to be loved unconditionally as husband and wife and two, I wanted to have a child to know the love of a parent. I felt, at the time, it was God's promise to me. And let's be honest, I'm married to the man of my dreams and we have 2.5 beautiful babies, so it must have been his promise, no? God has made many promises to us and if there's one thing I've learned about Him, it's that He keeps His promises. AND...and, usually He goes above and beyond keeping his promises and blesses us ten-fold. I knew it was a stretch to have ONE baby and God outwitted every doctor I've ever seen and gave me two more babies on top of my sweet son. I can see God up there going, yeah, you ain't seen nothing yet, kid. I'm not even CLOSE to being done (I like to envision God with a sense of humor...)
Yes, as a matter of fact, I am blessed. Big time.
Anyway, if you'd asked me when the y2k scare happened if I was ready for the world to end and spend eternity in heaven, I'd have told you no way. If you'd asked me at any of these other times when people claimed the world would end at X on Y, I'd have told you I wasn't ready and I was scared out of my ever-lovin' mind.
And let me just say, bless poor Reverand Camping's heart. He's devoted (see: wasted) nearly all his life to trying to determine when his life will end, rather than live it. It really, really is heartbreaking. Do I think he's a false prophet? No. I think he's a confused child of God who is so ready to be with His Savior that he made it his life's work to figure out WHEN it would happen. The bible does tell us, though, to beware of false prophets (think- Matthew 7:15). I do believe there will be many, many more predictions of when Christ's second return will be and I believe they too, will be wrong.
I can honestly look at my life right this very second and say it is complete. I'm so full of joy and appreciation for all my Savior has blessed me with. I have the best husband on the planet, he loves me like I've never been loved before (and I'm certain I'll never be loved again; I'm a difficult person to love). I have two of the most beautiful, sweetest spirited babies anyone could ever ask for. I have my faith, a roof over my head, peace with my parents (long time coming- I love you, momma and daddy). I know there's still so much more to live for (first days of school, high school, prom, college, marriage, grandbabies...), and live I will until He calls me home. But if God decided to end it all today, all I can say is bring it on!
So, when I told my friend this morning I was at peace with it all, it really got me to thinking why. When I look back at the old me, the me before my faith was 110% in Christ alone, I had a big problem with loving and accepting myself. The fact of the matter is if I don't love me, I can't expect anyone else to love me. Better still, if I don't love me, I'm less likely to let anyone IN to love me (think: Christ). Once I allowed Christ to live and dwell within me, He opened my life (eyes, heart...) to a whole new kind of love. He opened my eyes to a love for myself, a love for Him and a love for others.
You can call it maturity in age or maturity in spirit (I like to think both...), but while I knew there was no way we'd be raptured this evening, part of me was just a smidge disappointed at 6:05 pm when there was no earthquake. I can't wait for the day I don't have to worry about my babies' health, the bills piling up, our lights staying on. I'll get to see my Nampaw, my Paw-paw, all the relatives who've gone before me. I'll see Kara, Kindle, JD. They'll all be waiting for my sweet family and me as we are raptured up into heaven to spend eternity just loving and being with each other and with our Savior. Seriously? What could be better than that?
Wednesday, July 1, 2009
The Love Dare- day one
So mom and dad got Jesse and me The Love Dare for Christmas last year. It sat on our bookshelf for over six months and I finally picked it up the other day. It is basically 40 days and 40 different things to do to help improve your marriage. So I thought I'd give it a go.
Day one was that you had to essentially NOT say anything negative to your spouse. Accomodate them in everything and not fight.
Oh, my GOSH! I didn't think I'd survive day one. Day one turned into day three...and day four. Finally, on day four...I managed to make it only arguing ONCE. Woe is me, I think I'm a terrible wife.
Stay tuned. For day two/four, I am required to do something unexpected and kind for him.
This should be interesting...and it COULD be fun. ;)
Day one was that you had to essentially NOT say anything negative to your spouse. Accomodate them in everything and not fight.
Oh, my GOSH! I didn't think I'd survive day one. Day one turned into day three...and day four. Finally, on day four...I managed to make it only arguing ONCE. Woe is me, I think I'm a terrible wife.
Stay tuned. For day two/four, I am required to do something unexpected and kind for him.
This should be interesting...and it COULD be fun. ;)
Myspace transfer- I love you more.
April 13, 2009 - Monday
I remember...
Current mood: amorous
Category: Life
I remember when, shortly after bringing you home from the hospital, I would wake you just so I could hear your little cry or I would startle you just to be sure you were breathing. Looking back, I totally blame it on the out of whack hormones because no one in their right mind would wake a sleeping newborn. Seriously. My mom told me that on several ocassions. I woke you, though, because I wanted to see your smile. I wanted the world to see your smile. I wanted to see your beady little brown eyes, looking up at me with love. I loved you. I loved you so much that my heart probably should have exploded.I had no idea I could possibly love you more. Yes, I love you more. Your favorite thing to tell me is "I love you more, mommy!" in your growly little Linda Blair voice (we're still not sure where you picked that one up....). But little boy, you couldn't possibly love me more.
I love you more than life. I love you more than Dr. Pepper (face it dude, that's huge). I love you SO MUCH and my love for you is SO BIG and SO SINCERE that you couldn't possibly love me more. So I'll let you think that you love me more but you really have no idea, munchkin.I can't believe how much you've grown. Right before my very eyes. My little 7 lb. 15 oz. boy weighs 29 lbs. now! That's like, four times what you weighed when you were born, dude. Seriously. When you came home, size 1 shoes fell off your fat little paddies. Now? We're busting the seams of size 7's. Dude. You're huge. I brought you home in a 0-3 month outfit that was falling off of you (everywhere but the fat head...the cap was too tight) and now you're in 3T's. It breaks my heart, little boy. It breaks my heart and at the same time, I'm just overcome with joy.
You're two. You're huge, man. You speak in full sentences (you have for a while) and your vocabulary has just...exploded. You're so precious running from room to room, jumping, climbing, yelling, playing. You wear me out just watching you. That isn't good enough, though, is it? You're constantly telling me to "Come ON mommy!" dragging me from room to room. I cherish the time we spend together, little one. Mommy is so sorry that she has to work and spend so much time away from you. If I could change anything, that would be it. I miss our time together more than you can even begin to imagine. I miss you, little boy.You're so smart. You're so precious.
People tell me you should be a model. Just so you know, I said no. I want you to be a little boy. I want you to laugh and play and grow and get dirty and smelly (you definitely already posess that funky boy smell) and even get scrapes and bruises without having to worry about anything. You know you're cute. That's what is so bad. You're fully aware of it and, at two years old, you play it like no one's business. A handshake here, blown kisses there...a "hey, baby" now and then....you're so good at being adorkable. I'm absolutely exhausted, little boy. It is nearly 11:00 and I'm famished.
I just...now got you asleep. Your cute little pudgy boy snores fill your room and you're all snuggled up with blanky, woof-woof, blackie, junior, daisy, max and daisy jr. (thank God you're in a twin size bed with your brood) and while it may be true that a newborn is prettiest when fully awake, nothing could be more beautiful than a two year old...fast asleep.
Sleep sweet, my angel. Mommy loves you more.
I remember...
Current mood: amorous
Category: Life
I remember when, shortly after bringing you home from the hospital, I would wake you just so I could hear your little cry or I would startle you just to be sure you were breathing. Looking back, I totally blame it on the out of whack hormones because no one in their right mind would wake a sleeping newborn. Seriously. My mom told me that on several ocassions. I woke you, though, because I wanted to see your smile. I wanted the world to see your smile. I wanted to see your beady little brown eyes, looking up at me with love. I loved you. I loved you so much that my heart probably should have exploded.I had no idea I could possibly love you more. Yes, I love you more. Your favorite thing to tell me is "I love you more, mommy!" in your growly little Linda Blair voice (we're still not sure where you picked that one up....). But little boy, you couldn't possibly love me more.
I love you more than life. I love you more than Dr. Pepper (face it dude, that's huge). I love you SO MUCH and my love for you is SO BIG and SO SINCERE that you couldn't possibly love me more. So I'll let you think that you love me more but you really have no idea, munchkin.I can't believe how much you've grown. Right before my very eyes. My little 7 lb. 15 oz. boy weighs 29 lbs. now! That's like, four times what you weighed when you were born, dude. Seriously. When you came home, size 1 shoes fell off your fat little paddies. Now? We're busting the seams of size 7's. Dude. You're huge. I brought you home in a 0-3 month outfit that was falling off of you (everywhere but the fat head...the cap was too tight) and now you're in 3T's. It breaks my heart, little boy. It breaks my heart and at the same time, I'm just overcome with joy.
You're two. You're huge, man. You speak in full sentences (you have for a while) and your vocabulary has just...exploded. You're so precious running from room to room, jumping, climbing, yelling, playing. You wear me out just watching you. That isn't good enough, though, is it? You're constantly telling me to "Come ON mommy!" dragging me from room to room. I cherish the time we spend together, little one. Mommy is so sorry that she has to work and spend so much time away from you. If I could change anything, that would be it. I miss our time together more than you can even begin to imagine. I miss you, little boy.You're so smart. You're so precious.
People tell me you should be a model. Just so you know, I said no. I want you to be a little boy. I want you to laugh and play and grow and get dirty and smelly (you definitely already posess that funky boy smell) and even get scrapes and bruises without having to worry about anything. You know you're cute. That's what is so bad. You're fully aware of it and, at two years old, you play it like no one's business. A handshake here, blown kisses there...a "hey, baby" now and then....you're so good at being adorkable. I'm absolutely exhausted, little boy. It is nearly 11:00 and I'm famished.
I just...now got you asleep. Your cute little pudgy boy snores fill your room and you're all snuggled up with blanky, woof-woof, blackie, junior, daisy, max and daisy jr. (thank God you're in a twin size bed with your brood) and while it may be true that a newborn is prettiest when fully awake, nothing could be more beautiful than a two year old...fast asleep.
Sleep sweet, my angel. Mommy loves you more.
Myspace Transfer- this is brutal.
March 31, 2009 - Tuesday
So what?
Current mood: contemplative
Category: Life
So what makes a marriage fall apart?
What makes two people, who at one point, loved one another SO much, not even be able to be carry on a conversation without hostility?
Forget being in the same room together.
What makes a marriage go from good to worse?
Is it an overnight thing...or is it a gradual process?
How does one go about reversing the negative effects that have ocurred as a result of the hostility and discontentment?
Is it possible to reverse the said effects or is it just better to walk away and cut your losses? When does it become unhealthy to be together anymore?
Is it a natural progression when you aren't getting the love you've gotten used to having, to pursue it elsewhere?
Since when did crossing that line from dreaming about it to inactive pursuit and into actively pursuing it become grey, rather than black and white?
Isn't grey an excruciatingly compromising color when speaking of a marriage?
Is it just an imaginary color that should absolutely NOT exist in a marriage?
Am I wrong in thinking that it shouldn't?
So what does one do when it does?
How does one justify the color grey and all that it entails?
Forget being faithful to one another.
What can one do, at this point, to fix it?
Can one fix it?
When is a band-aid just not good enough?
How many band-aids must one exhaust before stitches are given?
Or superglue? Or a cast?
When is it salvageable?
Is it ever salvageable when it gets to the point of no return?
What IS the point of no return?
Can one take a bus to the point of no return? A train?
Forget going backward. All you can do at this point is move forward.
Move forward where?
With or without one another?
Then what?
Love someone else?
What if you're not capable of loving anyone else?
But at the same time...incapable of loving the one you're with?
Forget love. Apparently you're not cut out for it.
So what?
Current mood: contemplative
Category: Life
So what makes a marriage fall apart?
What makes two people, who at one point, loved one another SO much, not even be able to be carry on a conversation without hostility?
Forget being in the same room together.
What makes a marriage go from good to worse?
Is it an overnight thing...or is it a gradual process?
How does one go about reversing the negative effects that have ocurred as a result of the hostility and discontentment?
Is it possible to reverse the said effects or is it just better to walk away and cut your losses? When does it become unhealthy to be together anymore?
Is it a natural progression when you aren't getting the love you've gotten used to having, to pursue it elsewhere?
Since when did crossing that line from dreaming about it to inactive pursuit and into actively pursuing it become grey, rather than black and white?
Isn't grey an excruciatingly compromising color when speaking of a marriage?
Is it just an imaginary color that should absolutely NOT exist in a marriage?
Am I wrong in thinking that it shouldn't?
So what does one do when it does?
How does one justify the color grey and all that it entails?
Forget being faithful to one another.
What can one do, at this point, to fix it?
Can one fix it?
When is a band-aid just not good enough?
How many band-aids must one exhaust before stitches are given?
Or superglue? Or a cast?
When is it salvageable?
Is it ever salvageable when it gets to the point of no return?
What IS the point of no return?
Can one take a bus to the point of no return? A train?
Forget going backward. All you can do at this point is move forward.
Move forward where?
With or without one another?
Then what?
Love someone else?
What if you're not capable of loving anyone else?
But at the same time...incapable of loving the one you're with?
Forget love. Apparently you're not cut out for it.
Myspace Transfer
August 18, 2008 - Monday
Lessons
"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:288:02 pm.
I was in Justin's room, sitting in the rocking chair, watching him wailing and kicking on the floor. It has been a long week. I'm exhausted, he's exhausted and his daddy is exhausted. The medication that our 19 month old little boy is on makes him have awful temper tantrums randomly throughout the day for no apparent reason. That is what we were in the middle of, right then and there…at 8:02 pm.
He was wailing into the floor, gasping, kicking, hitting himself, pulling his hair- likely thinking "Woe is me." I sat there patiently and told him over and over again, "Mommy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright." I wouldn't touch him, though because I knew that would only send him into further hysterics. Outrage, even. It isn't that I can't handle the physical pain that he may potentially inflict on me. That isn't it at all. He could scratch me, bite me, kick me…it wouldn't even hold a candle to the hurt in my heart for him right at that very moment. My heart hurt for him because he was in a state of complete and utter despair. He wanted nothing but to lay there and sob about how miserable his little life is. I'll give this to him, too. His little life is pretty rough right now. My heart breaks for him several times a day, especially over the last week or so.
I told him again, barely above a whisper, "Mommy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."
After five minutes of utter hysteria, he looked up at me, sobbing. 8:07. He sat up and grabbed his blanket off his bed and starts walking toward me. He laid his head in my lap and just sobbed. Then he started hitting me. He was close enough at that point that I was able to pick him up and hold him. As soon as I pick him up, he arched his little back and screamed. He hit me several more times and I just held him tight. Not tight enough to hurt him, I could never hurt him. I held him tight enough that he knew that I'm not ever going to let him go. I whispered in his ear, "Mommy and daddy love you, little boy. We aren't going anywhere. We love you so much. "I told him over and over of our love for him and how special he is to us. He screamed still, trying to push me away. My heart broke into pieces. I just love this little boy with everything inside of me. If he hurts even a little bit, I feel like I've been stabbed in the side. The pain and the confusion that he has endured this last week has been more than even I can bear. Tears started rolling down my cheeks as I sang to him softly. "Amazing grace, how sweet the sound…that saved a wretch like me. I once was lost but now I'm found, was blind but now I see….T'was grace that taught my heart to fear and grace my fears relieved, how precious did that grace appear the hour I first believed….Thro many dangers, toils and snares I have already come. His grace has lead me safe so far and His grace will lead me home…When we've been there……ten thousand years…..Silence. My little guy had given in. His precious little snores and his breathing in and out were all that was left to be heard.
There is nothing more beautiful than silence at a moment like this. 8:18.God wasn't finished with me, though. There was a lesson to be learned here. At that very moment, I was hurting. I was hurting because my little boy was hurting and because my hsuband was hurting. I was hurting and I was angry. Right in the middle of my misery and my agony, God spoke to me. I heard him say, "Daddy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright."
No God. Everything is NOT alright. My little boy…he had seizures. Two of them in one day. Do you hear that, God? TWO in ONE DAY! And no one knows why! They want to diagnose my little boy with Epilepsy! Do you know what that means, God? Do you!?! He hurts….I hurt…Jesse hurts. We hurt. We love that little boy and we were so afraid we'd never hold him again. Do you hear me, God? Are you listening? Do you know what I've been through? Are you punishing us, God? Are you?
"Daddy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."
Do you not HEAR me, God??? They drew blood and drew tears…they kept him up all night, they gave him PHENOBARBATOL…a VERY dangerous drug, God! Then they gave him MORE drugs! Do you know how LITTLE sleep I've had? You don't get it, do you? My life is awful right now! Where are you, God??? Why won't you come help my family? WOE IS ME! Why have you left us, Lord? Why? My baby doesn't even want to touch me…he doesn't want his momma to hold him! He can't even stand up on his own because he is so drugged up! Don't you get it, God? If you can't help me, I don't need you!"Come, let me hold you. Let me rock you, let me bear this burden. This is not yours to suffer alone. Not yours, not Jesse's, but mine. You are not equipped to carry such a heavy load, child. Give it to me. Give it all to me. Let me comfort you, let me hold you."The thing about it is this: I have not outwardly blamed God. Inwardly, though, I have managed to get so caught up on how bad things are that I've failed to see God's work shining in our lives. Our son, the little boy that they said would be so off kilter for a minimum of two weeks while the drugs get in his system…he went to the beach this morning and flew his kite all by himself. He played and laughed and had a great time with us today. He threw a few violent fits, sure but he's already overcome the worst of it. We have more tests, but we have the Ultimate Physician in control of these tests. We have a thousand prayer warriors on our side and there is NOTHING the power of prayer can't conquer.
So where is God now? He's here, He never left us but the thing about it is, just like with Justin, we have to be willing to let him hold us, if even for just a little while. We don't go through these struggles alone. God never leaves us, He never forsakes us and what He calls us to do, He also equips us to do.
8:28 pm I didn't go to sleep right then, but I laid my little guy down and my Father, God carried me out of there with a new sense of peace. I was still and I knew that He was and is God and that He is in control...
Lessons
"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:288:02 pm.
I was in Justin's room, sitting in the rocking chair, watching him wailing and kicking on the floor. It has been a long week. I'm exhausted, he's exhausted and his daddy is exhausted. The medication that our 19 month old little boy is on makes him have awful temper tantrums randomly throughout the day for no apparent reason. That is what we were in the middle of, right then and there…at 8:02 pm.
He was wailing into the floor, gasping, kicking, hitting himself, pulling his hair- likely thinking "Woe is me." I sat there patiently and told him over and over again, "Mommy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright." I wouldn't touch him, though because I knew that would only send him into further hysterics. Outrage, even. It isn't that I can't handle the physical pain that he may potentially inflict on me. That isn't it at all. He could scratch me, bite me, kick me…it wouldn't even hold a candle to the hurt in my heart for him right at that very moment. My heart hurt for him because he was in a state of complete and utter despair. He wanted nothing but to lay there and sob about how miserable his little life is. I'll give this to him, too. His little life is pretty rough right now. My heart breaks for him several times a day, especially over the last week or so.
I told him again, barely above a whisper, "Mommy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."
After five minutes of utter hysteria, he looked up at me, sobbing. 8:07. He sat up and grabbed his blanket off his bed and starts walking toward me. He laid his head in my lap and just sobbed. Then he started hitting me. He was close enough at that point that I was able to pick him up and hold him. As soon as I pick him up, he arched his little back and screamed. He hit me several more times and I just held him tight. Not tight enough to hurt him, I could never hurt him. I held him tight enough that he knew that I'm not ever going to let him go. I whispered in his ear, "Mommy and daddy love you, little boy. We aren't going anywhere. We love you so much. "I told him over and over of our love for him and how special he is to us. He screamed still, trying to push me away. My heart broke into pieces. I just love this little boy with everything inside of me. If he hurts even a little bit, I feel like I've been stabbed in the side. The pain and the confusion that he has endured this last week has been more than even I can bear. Tears started rolling down my cheeks as I sang to him softly. "Amazing grace, how sweet the sound…that saved a wretch like me. I once was lost but now I'm found, was blind but now I see….T'was grace that taught my heart to fear and grace my fears relieved, how precious did that grace appear the hour I first believed….Thro many dangers, toils and snares I have already come. His grace has lead me safe so far and His grace will lead me home…When we've been there……ten thousand years…..Silence. My little guy had given in. His precious little snores and his breathing in and out were all that was left to be heard.
There is nothing more beautiful than silence at a moment like this. 8:18.God wasn't finished with me, though. There was a lesson to be learned here. At that very moment, I was hurting. I was hurting because my little boy was hurting and because my hsuband was hurting. I was hurting and I was angry. Right in the middle of my misery and my agony, God spoke to me. I heard him say, "Daddy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright."
No God. Everything is NOT alright. My little boy…he had seizures. Two of them in one day. Do you hear that, God? TWO in ONE DAY! And no one knows why! They want to diagnose my little boy with Epilepsy! Do you know what that means, God? Do you!?! He hurts….I hurt…Jesse hurts. We hurt. We love that little boy and we were so afraid we'd never hold him again. Do you hear me, God? Are you listening? Do you know what I've been through? Are you punishing us, God? Are you?
"Daddy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."
Do you not HEAR me, God??? They drew blood and drew tears…they kept him up all night, they gave him PHENOBARBATOL…a VERY dangerous drug, God! Then they gave him MORE drugs! Do you know how LITTLE sleep I've had? You don't get it, do you? My life is awful right now! Where are you, God??? Why won't you come help my family? WOE IS ME! Why have you left us, Lord? Why? My baby doesn't even want to touch me…he doesn't want his momma to hold him! He can't even stand up on his own because he is so drugged up! Don't you get it, God? If you can't help me, I don't need you!"Come, let me hold you. Let me rock you, let me bear this burden. This is not yours to suffer alone. Not yours, not Jesse's, but mine. You are not equipped to carry such a heavy load, child. Give it to me. Give it all to me. Let me comfort you, let me hold you."The thing about it is this: I have not outwardly blamed God. Inwardly, though, I have managed to get so caught up on how bad things are that I've failed to see God's work shining in our lives. Our son, the little boy that they said would be so off kilter for a minimum of two weeks while the drugs get in his system…he went to the beach this morning and flew his kite all by himself. He played and laughed and had a great time with us today. He threw a few violent fits, sure but he's already overcome the worst of it. We have more tests, but we have the Ultimate Physician in control of these tests. We have a thousand prayer warriors on our side and there is NOTHING the power of prayer can't conquer.
So where is God now? He's here, He never left us but the thing about it is, just like with Justin, we have to be willing to let him hold us, if even for just a little while. We don't go through these struggles alone. God never leaves us, He never forsakes us and what He calls us to do, He also equips us to do.
8:28 pm I didn't go to sleep right then, but I laid my little guy down and my Father, God carried me out of there with a new sense of peace. I was still and I knew that He was and is God and that He is in control...
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