I am flooded with so many emotions as I begin to write this post.
I have always hated good-byes.
How do you say good-bye to something that has become such a part of you?
I could not have known, when I sat down at our little dining room table that cold December evening, what I was beginning as I created this blog. Landons Letters has been so beautiful to me. It's been my safe place. On days where I couldn't face the world, when I couldn't even face Ryan, I could escape to this blog, stare face to face with my computer screen, and somehow reach down far enough into my heart to the place where my words were hiding.
On the days when I couldn't speak a word, this blog was always here to listen to my heart.
Each of your lovely comments was used by God to show me that I truly was not alone.
This blog holds things that my memory has already forgotten.
This blog holds healing and transformation, you can find it if you look closely. It's subtle, but it's there.
So as I turn this last page, I turn it slowly, not wanting to rush away from it because I owe it so very much.
I know that the thing that made this blog so beautiful, was not my words or even the journey it tells. What makes it so incredibly beautiful is you. Each of you, who have come alongside me and my family as we walked out the story hidden away in this special website. God used this blog to make our story go further than we could have every taken it on our own.
Thank you for journeying with us.
We would be honored if you would turn this page and embark on our new chapter with us. As I said in a recent post, it's almost as if this chapter is ending mid sentence so we should be able to pick up right where we left off :)
Thank you Jesus for writing this amazing story and allowing me to be a part of it. I pray I never forget the beauty that lies in a broken heart.
To continue our journey follow us to our new blog here
Landons Letters
Our blog about what's happening in the life of our first born son; Landon Anthony Maxwell, born on April 3rd, 2012 with Pulmonary Artresia & Intact Ventricular Septum.
Tuesday, January 29, 2013
Wednesday, January 16, 2013
One week post surgery!
We have had so many people ask us how Landon is doing. I wonder sometimes if people really believe me when I say that he is doing amazing. I tell them that truly if you didn't know it, from looking at him, you would have no idea that Landon has just had a major open heart surgery.
Yesterday marked one week since surgery and I figured that the best way to update all of you on how our Landon is doing is to let him tell you himself :)
Everyday I wake up and I'm reminded that God still performs miracles.
I feel one everyday in the strong beat of my child's heart.
That smiling face right there, is a result of your prayers.
It doesn't seem like much but, thank you. Thank you so very much for believing and praying for a miracle for our son.
Yesterday marked one week since surgery and I figured that the best way to update all of you on how our Landon is doing is to let him tell you himself :)
Mom what are you holding? I want it!
Everyday I wake up and I'm reminded that God still performs miracles.
I feel one everyday in the strong beat of my child's heart.
That smiling face right there, is a result of your prayers.
It doesn't seem like much but, thank you. Thank you so very much for believing and praying for a miracle for our son.
Saturday, January 12, 2013
Storms, home, and the flu!
I was just cuddling my sweet boy, no more tubes or cords! He is clothed in monkey pj's and wrapped tightly in his favorite hooded monkey blankie. Discharge papers are done and we can leave whenever we want this morning!! Landon is doing awesome and they want us to get out of here as soon as possible because it has become safer for him to be home then here in the hospital.
We have been told that all of the hospital's in Minneapolis are overrun with cases of the flu. There are even several on the CVICU floor right now that we are on, because the ICU is completely full. Yesterday, after Landon got his oxygen and the last of his monitors off, we were able to pick him up and walk him around the floor. Later in the day we were told that we shouldn't leave our room anymore because of the risk of Landon catching the flu virus. You just have to watch the news for 5 minutes to see how scary this is! We are still in the small PICU room because they figured it wouldn't be smart to move us to the recovery floor since they knew we would be discharged this weekend anyway. A doctor yesterday told us to get Landon out of here ASAP. He said we could leave yesterday, but we wanted to wait one more day since Landon had just gotten off his oxygen.
Landon's sats without oxygen were sticking around 85-95, which we didn't think was good. He had an echo done yesterday and what they found was that there is still a small hole in the ASD (hole) they patched up. The surgeon told us that he left a hole very small and that Landon most likely wouldn't use it, but our little man, for some reason, feels he needs it right now to get adequate flow to the right side of his heart. This is "not" a bad thing. We have been told that it is perfectly fine for Landon to use the hole, but because he is using it, it is going to bring down his sats. So for the next couple months Landon's sats will be lower, until the hole closes and his body slowly adjusts to this change. After the hole closes, his sats should be completely normal. We will meet with Fernandez right away when we get home and have an echo done. Fernandez will want to monitor the size of the hole by performing monthly echo's until he can no longer find it.
Landon's immune system is close to normal now, because he is older and he has had this surgery to make it so he has a normal two ventricle heart, but we still need to be very careful for a while. We were told to error on the side of caution with him. So sadly, there will be no more church or fun outings for our family for the next couple months. We'll probably hang pretty low until Spring comes and this nasty flu is long gone.
They are also concerned for Landon because of the horrible winter storm (Gandolf :) that is supposed to sweep in on us bad today. They obviously do not want Landon driving home, but they agreed that we can leave as long as we wait out the storm at my aunts house. So that's where we're headed this morning. We will stay there over the weekend and leave for home early Monday morning.
Landon... oh my goodness!! Our Landon, he is known as the rockstar of this floor. All of the doctors and nurses that pass his room usually stop in just to get some of his smiles. I was so worried about how this surgery would put his physical development back, but Landon quickly proved to us that he wasn't going to let us hold him back. I didn't know how much pain he would have when he sits up, but he doesn't seem to have any. Yesterday we found ourselves questioning that this child actually had open heart surgery three days prior. He was sitting up, reaching, playing, laughing. You could tell that everyone who looked in his room was just filled with hope. He is such a strong child! They took him off of all of his pain meds yesterday (isn't that unbelievable) and told us that he could have tylenol as he seemed to need it, but the whole day passed and he didn't seem to be in any pain! We did give him a couple doses last night just to settle him so he could sleep well. I just continue to be blown away by my child's strength. I am so blessed to be his mama.
Landon hated the "no no" they put over his IV so that he couldn't pull it out. He hated is so much that somehow last night he actually succeeded in pulling it off and taking the IV out right along with it. I almost passed out when I realized what he had done! I have watched him get his chest and breathing tubes out more then once, but for some reason him pulling out his IV seemed more serious to me. I couldn't look at his hand for the longest time, even though there was only a drop of blood and the nurse said it just saved her from having to do it in the morning. Ryan wont quickly let me forget how I overreacted haha :)
Please pray for protection from germs for our family. Pray for safe travels for our parents and our friend Krista who are headed back to Warroad, MN and Bismarck today. Pray that the storm passes quickly so that we can get home and get back to our normal life. Please continue to pray for pain relief for Landon and that his strength will continue to improve with each day.
This experience has been so full of ups and downs. I am brought to tears when I think of the fact that Landon will not remember any of this. We know that we have such a responsibility to tell Landon about his special heart and how God has used it to shape our families life and the lives of so many others. We are so glad that Landon will not remember this pain, but we want him to know where His scar came from. We want Him to know how God has had His hand on his life at such a young age and that everyday he lives, runs plays, is a miracle and an immense, unspeakable, gift (Oh, the tears!). Ryan and I believe that Landon's journey was much more for us then for Landon. God has used Landon's heart to open our eyes to pain and beauty and how you truly cannot have one without the other. We have grown more in this past year with Landon then we ever could have dreamed for ourselves, our marriage, and our family. Everyday we see Landon's scar we are filled with gratitude. Most families wish that they could take their child's scar away, but I would never wish that. I love that we have a constant reminder of how God has been faithful to our family.
I do not know where You will take us from here Jesus, but know that we will never forget what You have shown us through Landon's heart. Thank you for healing and restoring it. Thank you for protecting our baby boy through the horror he has had to endure. Thank you for the beauty we have discovered while walking the path called suffering. We never would have chosen this path on our own so thank you for knowing that it was exactly what we needed. Above all, thank you for walking this path before us, showing us that it can be done. Telling us that You will never abandon us along the way.
We will always remeber.
A broken heart will always be rooted in the foundation of our family.
Lord break our hearts for the things that break Yours.
We have been told that all of the hospital's in Minneapolis are overrun with cases of the flu. There are even several on the CVICU floor right now that we are on, because the ICU is completely full. Yesterday, after Landon got his oxygen and the last of his monitors off, we were able to pick him up and walk him around the floor. Later in the day we were told that we shouldn't leave our room anymore because of the risk of Landon catching the flu virus. You just have to watch the news for 5 minutes to see how scary this is! We are still in the small PICU room because they figured it wouldn't be smart to move us to the recovery floor since they knew we would be discharged this weekend anyway. A doctor yesterday told us to get Landon out of here ASAP. He said we could leave yesterday, but we wanted to wait one more day since Landon had just gotten off his oxygen.
Landon's sats without oxygen were sticking around 85-95, which we didn't think was good. He had an echo done yesterday and what they found was that there is still a small hole in the ASD (hole) they patched up. The surgeon told us that he left a hole very small and that Landon most likely wouldn't use it, but our little man, for some reason, feels he needs it right now to get adequate flow to the right side of his heart. This is "not" a bad thing. We have been told that it is perfectly fine for Landon to use the hole, but because he is using it, it is going to bring down his sats. So for the next couple months Landon's sats will be lower, until the hole closes and his body slowly adjusts to this change. After the hole closes, his sats should be completely normal. We will meet with Fernandez right away when we get home and have an echo done. Fernandez will want to monitor the size of the hole by performing monthly echo's until he can no longer find it.
Landon's immune system is close to normal now, because he is older and he has had this surgery to make it so he has a normal two ventricle heart, but we still need to be very careful for a while. We were told to error on the side of caution with him. So sadly, there will be no more church or fun outings for our family for the next couple months. We'll probably hang pretty low until Spring comes and this nasty flu is long gone.
They are also concerned for Landon because of the horrible winter storm (Gandolf :) that is supposed to sweep in on us bad today. They obviously do not want Landon driving home, but they agreed that we can leave as long as we wait out the storm at my aunts house. So that's where we're headed this morning. We will stay there over the weekend and leave for home early Monday morning.
Landon... oh my goodness!! Our Landon, he is known as the rockstar of this floor. All of the doctors and nurses that pass his room usually stop in just to get some of his smiles. I was so worried about how this surgery would put his physical development back, but Landon quickly proved to us that he wasn't going to let us hold him back. I didn't know how much pain he would have when he sits up, but he doesn't seem to have any. Yesterday we found ourselves questioning that this child actually had open heart surgery three days prior. He was sitting up, reaching, playing, laughing. You could tell that everyone who looked in his room was just filled with hope. He is such a strong child! They took him off of all of his pain meds yesterday (isn't that unbelievable) and told us that he could have tylenol as he seemed to need it, but the whole day passed and he didn't seem to be in any pain! We did give him a couple doses last night just to settle him so he could sleep well. I just continue to be blown away by my child's strength. I am so blessed to be his mama.
Landon hated the "no no" they put over his IV so that he couldn't pull it out. He hated is so much that somehow last night he actually succeeded in pulling it off and taking the IV out right along with it. I almost passed out when I realized what he had done! I have watched him get his chest and breathing tubes out more then once, but for some reason him pulling out his IV seemed more serious to me. I couldn't look at his hand for the longest time, even though there was only a drop of blood and the nurse said it just saved her from having to do it in the morning. Ryan wont quickly let me forget how I overreacted haha :)
Watching Curious George this morning. Ready to leave whenever papa wakes up
This experience has been so full of ups and downs. I am brought to tears when I think of the fact that Landon will not remember any of this. We know that we have such a responsibility to tell Landon about his special heart and how God has used it to shape our families life and the lives of so many others. We are so glad that Landon will not remember this pain, but we want him to know where His scar came from. We want Him to know how God has had His hand on his life at such a young age and that everyday he lives, runs plays, is a miracle and an immense, unspeakable, gift (Oh, the tears!). Ryan and I believe that Landon's journey was much more for us then for Landon. God has used Landon's heart to open our eyes to pain and beauty and how you truly cannot have one without the other. We have grown more in this past year with Landon then we ever could have dreamed for ourselves, our marriage, and our family. Everyday we see Landon's scar we are filled with gratitude. Most families wish that they could take their child's scar away, but I would never wish that. I love that we have a constant reminder of how God has been faithful to our family.
I do not know where You will take us from here Jesus, but know that we will never forget what You have shown us through Landon's heart. Thank you for healing and restoring it. Thank you for protecting our baby boy through the horror he has had to endure. Thank you for the beauty we have discovered while walking the path called suffering. We never would have chosen this path on our own so thank you for knowing that it was exactly what we needed. Above all, thank you for walking this path before us, showing us that it can be done. Telling us that You will never abandon us along the way.
We will always remeber.
A broken heart will always be rooted in the foundation of our family.
Lord break our hearts for the things that break Yours.
Wednesday, January 9, 2013
beauiful blend
I started writing a blog last night, but didn't get it finished. I don't really want to remember yesterday, but I figure I should fill all of you in since so many of you have been praying for our sweet boy non stop.
Quick update...
Surgery went amazingly well. They were successful in everything that they did. When we talked with the surgeon afterwards we were told that Landon's sats were at 100. The highest they have ever gotten was like 95, but they usually hang in the high 80's so we were thrilled with this news. The surgeon told us that he will need monitoring and check ups probably still monthly for this year, but then he will likely only need an echo and checkup about once a year. We were told that he will need another surgery, but he wont need it for another 10 to 15 years, it will not have to be open heart and who knows by that time, it will most likely be a very minor procedure to fix his pulmonary valve.
Clearly we were ecstatic about this news.
We were then told we could go to the PICU waiting room and wait until they got Landon settled into his new room, then they would call us back.
We had just started eating the pizza our parents had ordered for us, when they said we could go see him.
You can never really prepare yourself for that first moment of seeing your baby, glazed eyes, tubes, blood, cords, it is just wrong.
It is just so wrong.
Our playful goofy boy was just staring lifelessly and it was painful for us to see him that way.
You can't really see it, but there's a tear coming out of his eye. The nurse told me that it was just because his eyes were dry, but I knew that it was because he was hurting.
I stood by his bed and wiped every tear as it would start to slide down his cheek. I knew my baby was still in that lifeless body and it was like he was trying to communicate with me when his eyes would twitch certain ways and he would push out his tears.
"Mama I hurt."
I could hear him saying.
My heart was already breaking, but I had no idea what lay ahead for Ryan and I in the next long hours.
Slowly but surely the sedation meds started to wear off. That was when it really started to get painful. Landon started looking around, still with the glazed eyes, but definitely looking around and following voices. Every now and then he would attempt to open his mouth a little, but you could tell that this movement was very painful for him because of the tubes down his throat. He would feel the pain and then he would bring his hands up to his mouth to pull on the breathing tube. We did our best to hold his hands down, but with every time we stopped him, he would just get more frustrated and upset.
As time passed it just got harder and harder for us to see him in so much pain. We all wanted him to be able to get his breathing tube out and we were told that he would most likely be extubated soon.
We thought that getting the tubes out of his throat would help his pain, but it only seemed to get significantly worse after he was extubated. His throat was extremely sore.
He kept getting more and more agitated. He was doing everything he could to get the oxygen out of his nose and scratch his eyes. His eyes were taped shut during the surgery so we don't know if that's why they were so itchy to him or if it was a side effect of the morphine. We were told probably a combination of both.
Landon started getting so upset that he began wrenching his back, kicking his legs and flailing his arms. We could tell that every breath was very painful for him because he would cry and writhe. It started getting to the point where it was so painful for him to breath that he was simply choosing not to. He started holding his breath for longer and longer amounts of time.
I don't think I've ever felt so helpless.
I had to fight my baby boy, grabbing and pinning down his arms, over and over and over again. He would get so upset and all of a sudden his mouth would just stay open, no breaths taken in, no breaths going out. His eyes were so wide, I knew he was scared and in pain, but the absolute worst part was when he would turn his head and open his eyes. Oh his eyes! They were so full of pain. He would look right at me with his frozen eyes and my heart would just stop. I knew he didn't understand why I was hurting him. He was trying to fix his pain in the best way he knew how, by pulling and scratching, but I wouldn't let him. He didn't understand why I wouldn't help him.
All I could do was lean over, place my mouth against his face, and whisper to him. "I'm sorry.... I'm sorry baby boy.... Mama's so sorry. I know it hurts honey. I know... I know." and then I realized...
I don't know.
I have no idea.
I have never been through any kind of pain like my baby was feeling in that moment. The only instance I could think of where I have actually suffered intense physical pain, was my labor and delivery with Landon.
You can call me crazy, but as I was thinking about that, (tears streaming down my face, still trying to calm my hysterical child) I was so thankful for that pain.
I was so glad that I chose to feel every once of the pain that it took to bring Landon into the world.
It just felt right.
It felt right that I endured pain for my child because in that moment I wished with all of my heart that I could take my baby's pain. I wished that I could free him from the agony and carry it for him.
I didn't think about this yesterday, but as I'm writing that I'm struck by the thought that maybe that is how Jesus felt when He went to the cross. He didn't want to endure the pain, but He chose to because of His immense and unconditional love for us. Because, He wanted to relieve us of the sin that consumes our bodies and souls like a terminal cancer.
All I know is I would of sacrificed anything to relieve Landon of his pain then and there...
We begged the nurse to give him more pain medication. So eventually she upped his Morphine.
Then another 45 min passed with us holding Landon down and begging him to keep breathing (it's really scary when the nurse even joins in on your begging).
The nurse was clearly beginning to get worried. A child who has just had his chest cut open, his sternum separated, and who has tubes, cords and IV's coming out of him, should not be moving, let alone throwing himself around.
So again she upped his Morphine thinking that all of his writhing is due to the pain he is in.
Another hour went by and nothing had changed.
I was beginning to get light headed. A person can only take so much trauma, especially when it's your child going through it.
Obviously the morphine wasn't doing squat so the nurse ordered in Fentanyl (100 times more potent then Morphine)
So we waited and waited for it to kick in, but it never seemed to.
By this point I was feeling drained and hopeless.
Landon had not stopped screaming and fighting since he got his breathing tube out, which was at 5:30. It was nearing 10:30 and it seemed there was no end in site. He had not slept AT ALL since before he was extubated.
They were discussing with us other meds they could try, when Ryan just hit his breaking point. He told them that they had tried so many pain meds and nothing was helping so it obviously is something more then just pain. He told the nurse that no amount of pain medication is going to stop his hunger. He told her that he is starving and needs to eat, but she told us again what we had already been told, that they don't want him to eat until morning.
When the nurse left the room, I told Ryan I couldn't do it much longer, by "it" I meant watching Landon gasping and writhing in pain... I just couldn't take it anymore. I'd been standing by his bed for hours and I was emotionally dying inside. I knew I was on the verge of just breaking.
So Ryan made me take a break and go sit down in the corner of the room. That's when I went on facebook and begged people to pray for Landon.
When the nurse came back in and saw that Landon was still going strong she asked me if I wanted to hold him. I said yes and that I didn't know that I could or I would have a long time ago. She said that they like to wait 24 hours after surgery, but she thought that maybe that would calm him down enough to get him to sleep.
I thought for sure... YES!! This will work! My baby will relax in my arms and finally give into to rest.
It took three nurses to get Landon lifted out of his bed and into my arms. At first it seemed to be going well, but then he just started squirming, arching his back, pulling, scratching, screaming. I begged him to calm down.
I felt so helpless.
Nothing I did, as a mama, could soothe my baby.
He kept getting worse and worse and worse. I don't know if the move just made him that much more uncomfortable, but he wouldn't stop screaming and then it happened...
We were no longer surprised by his bouts of breathe holding, but that didn't make them any less scary. This time was different though... as soon as I noticed him doing it, I started whispering to him to breathe, he continued to hold his breathe. Soon Ryan was down by his face talking to him to. Then the nurse started moving his legs and arms in hopes that the movement might get him to take a breathe. By this time, 15 to 20 sec had passed and I was now screaming at Landon to take a breathe. His eyes were closed, his mouth was wide open and he was making somewhat of a choking sound. His color was turning dark reddish blue before our eyes. His alarms were going off because his sats were falling into the 60's. My arm was supporting his head and I was bouncing it trying to startle him into breathing. He opened his eyes half way and I was horrified to see that his eyes were rolling to the back of his head. I was crying and Ryan and I were just screaming his name.
Finally, after what seemed like forever, he GASPED.
I just remember holding him and staring at his face. I have never seen it so lifeless.
After that he was still upset, but he calmed down a little, probably due to the fact that he just had absolutely no strength left.
He stopped fighting, but he was still whimpering in pain.
The nurse returned again with something she told us was an anti anxiety med. She said it would kick in right away and thank God it did.
After the first couple minutes passed of him laying still with his eyes closed, Ryan and I grabbed our bag of subway that had been sitting on the table untouched for 3 hours, and headed to the waiting room down the hall.
Ounce we got there, Ryan sat down, pulled me onto his lap, and we both just BROKE. It was 11:30 and I'm sure my cries woke up every sleeping body on the floor. I just sobbed and sobbed, releasing all of the emotion that was bleeding out of my heart.
I told Ryan that I felt like Landon thinks we're the enemies. I sobbed at the fact that I'm his mama and I could do absolutely nothing to help my baby. I sobbed thinking of the face that looked up at me numerous times and just begged me to do something to fix his pain. I sobbed because I had to use force to pin my child's arms down when all he wanted to do was relieve his pain, because no one else was doing it for him. I sobbed because I know my child and I know when he's hungry. I sobbed because I couldn't satisfy this most basic need of his. I sobbed because I watched my child choose suffocation over the pain it takes for him to breathe.
After Ryan and I had spent each of our tears and finally ate something, we went back into Landon's room to pull out our chairs and hopefully get some sleep.
It seemed like I had hardly laid my head on the pillow when I was awoken by Landon's screams. I wanted so badly to ignore them. I was so exhausted, but I knew there was no way I could sleep when my baby was hurting like that.
I looked at the clock and it was 1:30AM. Landon's voice was scratchy so the nurse told me she was going to see if she could suction any of it out. I helped another nurse sit Landon up and I watched as Landon's nurse proceeded to push a tube through Landon's nose and all the way down his throat. Every now and then she would push a button that pulled tons of bloody gunk out of Landon's throat. I was startled by the blood and they told me that it's not uncommon after having breathing tubes in because the tubes are large and they can scratch against the esophagus.
After they were done, Landon's breathing was much better. I was kicking myself for not telling them to try that sooner.
Although that helped Landon's breathing, it didn't seem to help his agitation.
Finally at around 2 o clock in the morning, after three nurses and the charge nurse, called the big guns to plead Landon's case for a simple bottle of formula, the request was granted. I'm sure so many of the nurses joined Landon's team because they were getting sick of his screaming waking up their patients, but whatever the reason. I couldn't have been happier making that bottle. Landon grabbed it right out of my hands, which fed my fear that he had lost all trust in his mama :(
He downed 3 ounces in 10 min and was O...U...T before the bottle had even dropped from his hands.
I wanted to share about our horrible, awful, no good day because maybe another heart (or just hurting) mama will read it someday and I can give you hope that even the worst days don't last forever. They will soon turn into yesterday and my hope is that your today will renew your hope just like mine did.
Yesterday I looked into my sons eyes and didn't see the love and adoration that I had grown so accustomed to. I feared that his trauma would scar his love for me. I was sure that I would have to earn back his trust, but then today I was reminded of the goodness and faithfulness of our God. He created children with a resilience that is unbelievable.
I tried to change my memories to words and use them to paint for you a clear picture of our yesterday. I titled the picture "pain" because everything about yesterday seemed to be painful. But today I was reminded that pain can often lead straight into joy and healing.
Today...
Quick update...
Surgery went amazingly well. They were successful in everything that they did. When we talked with the surgeon afterwards we were told that Landon's sats were at 100. The highest they have ever gotten was like 95, but they usually hang in the high 80's so we were thrilled with this news. The surgeon told us that he will need monitoring and check ups probably still monthly for this year, but then he will likely only need an echo and checkup about once a year. We were told that he will need another surgery, but he wont need it for another 10 to 15 years, it will not have to be open heart and who knows by that time, it will most likely be a very minor procedure to fix his pulmonary valve.
Clearly we were ecstatic about this news.
We were then told we could go to the PICU waiting room and wait until they got Landon settled into his new room, then they would call us back.
We had just started eating the pizza our parents had ordered for us, when they said we could go see him.
You can never really prepare yourself for that first moment of seeing your baby, glazed eyes, tubes, blood, cords, it is just wrong.
It is just so wrong.
Our playful goofy boy was just staring lifelessly and it was painful for us to see him that way.
You can't really see it, but there's a tear coming out of his eye. The nurse told me that it was just because his eyes were dry, but I knew that it was because he was hurting.
I stood by his bed and wiped every tear as it would start to slide down his cheek. I knew my baby was still in that lifeless body and it was like he was trying to communicate with me when his eyes would twitch certain ways and he would push out his tears.
"Mama I hurt."
I could hear him saying.
My heart was already breaking, but I had no idea what lay ahead for Ryan and I in the next long hours.
Slowly but surely the sedation meds started to wear off. That was when it really started to get painful. Landon started looking around, still with the glazed eyes, but definitely looking around and following voices. Every now and then he would attempt to open his mouth a little, but you could tell that this movement was very painful for him because of the tubes down his throat. He would feel the pain and then he would bring his hands up to his mouth to pull on the breathing tube. We did our best to hold his hands down, but with every time we stopped him, he would just get more frustrated and upset.
As time passed it just got harder and harder for us to see him in so much pain. We all wanted him to be able to get his breathing tube out and we were told that he would most likely be extubated soon.
We thought that getting the tubes out of his throat would help his pain, but it only seemed to get significantly worse after he was extubated. His throat was extremely sore.
He kept getting more and more agitated. He was doing everything he could to get the oxygen out of his nose and scratch his eyes. His eyes were taped shut during the surgery so we don't know if that's why they were so itchy to him or if it was a side effect of the morphine. We were told probably a combination of both.
Landon started getting so upset that he began wrenching his back, kicking his legs and flailing his arms. We could tell that every breath was very painful for him because he would cry and writhe. It started getting to the point where it was so painful for him to breath that he was simply choosing not to. He started holding his breath for longer and longer amounts of time.
I don't think I've ever felt so helpless.
I had to fight my baby boy, grabbing and pinning down his arms, over and over and over again. He would get so upset and all of a sudden his mouth would just stay open, no breaths taken in, no breaths going out. His eyes were so wide, I knew he was scared and in pain, but the absolute worst part was when he would turn his head and open his eyes. Oh his eyes! They were so full of pain. He would look right at me with his frozen eyes and my heart would just stop. I knew he didn't understand why I was hurting him. He was trying to fix his pain in the best way he knew how, by pulling and scratching, but I wouldn't let him. He didn't understand why I wouldn't help him.
I don't know.
I have no idea.
I have never been through any kind of pain like my baby was feeling in that moment. The only instance I could think of where I have actually suffered intense physical pain, was my labor and delivery with Landon.
You can call me crazy, but as I was thinking about that, (tears streaming down my face, still trying to calm my hysterical child) I was so thankful for that pain.
I was so glad that I chose to feel every once of the pain that it took to bring Landon into the world.
It just felt right.
It felt right that I endured pain for my child because in that moment I wished with all of my heart that I could take my baby's pain. I wished that I could free him from the agony and carry it for him.
I didn't think about this yesterday, but as I'm writing that I'm struck by the thought that maybe that is how Jesus felt when He went to the cross. He didn't want to endure the pain, but He chose to because of His immense and unconditional love for us. Because, He wanted to relieve us of the sin that consumes our bodies and souls like a terminal cancer.
All I know is I would of sacrificed anything to relieve Landon of his pain then and there...
We begged the nurse to give him more pain medication. So eventually she upped his Morphine.
Then another 45 min passed with us holding Landon down and begging him to keep breathing (it's really scary when the nurse even joins in on your begging).
The nurse was clearly beginning to get worried. A child who has just had his chest cut open, his sternum separated, and who has tubes, cords and IV's coming out of him, should not be moving, let alone throwing himself around.
So again she upped his Morphine thinking that all of his writhing is due to the pain he is in.
Another hour went by and nothing had changed.
I was beginning to get light headed. A person can only take so much trauma, especially when it's your child going through it.
Obviously the morphine wasn't doing squat so the nurse ordered in Fentanyl (100 times more potent then Morphine)
So we waited and waited for it to kick in, but it never seemed to.
By this point I was feeling drained and hopeless.
Landon had not stopped screaming and fighting since he got his breathing tube out, which was at 5:30. It was nearing 10:30 and it seemed there was no end in site. He had not slept AT ALL since before he was extubated.
They were discussing with us other meds they could try, when Ryan just hit his breaking point. He told them that they had tried so many pain meds and nothing was helping so it obviously is something more then just pain. He told the nurse that no amount of pain medication is going to stop his hunger. He told her that he is starving and needs to eat, but she told us again what we had already been told, that they don't want him to eat until morning.
When the nurse left the room, I told Ryan I couldn't do it much longer, by "it" I meant watching Landon gasping and writhing in pain... I just couldn't take it anymore. I'd been standing by his bed for hours and I was emotionally dying inside. I knew I was on the verge of just breaking.
So Ryan made me take a break and go sit down in the corner of the room. That's when I went on facebook and begged people to pray for Landon.
When the nurse came back in and saw that Landon was still going strong she asked me if I wanted to hold him. I said yes and that I didn't know that I could or I would have a long time ago. She said that they like to wait 24 hours after surgery, but she thought that maybe that would calm him down enough to get him to sleep.
I thought for sure... YES!! This will work! My baby will relax in my arms and finally give into to rest.
It took three nurses to get Landon lifted out of his bed and into my arms. At first it seemed to be going well, but then he just started squirming, arching his back, pulling, scratching, screaming. I begged him to calm down.
I felt so helpless.
Nothing I did, as a mama, could soothe my baby.
He kept getting worse and worse and worse. I don't know if the move just made him that much more uncomfortable, but he wouldn't stop screaming and then it happened...
We were no longer surprised by his bouts of breathe holding, but that didn't make them any less scary. This time was different though... as soon as I noticed him doing it, I started whispering to him to breathe, he continued to hold his breathe. Soon Ryan was down by his face talking to him to. Then the nurse started moving his legs and arms in hopes that the movement might get him to take a breathe. By this time, 15 to 20 sec had passed and I was now screaming at Landon to take a breathe. His eyes were closed, his mouth was wide open and he was making somewhat of a choking sound. His color was turning dark reddish blue before our eyes. His alarms were going off because his sats were falling into the 60's. My arm was supporting his head and I was bouncing it trying to startle him into breathing. He opened his eyes half way and I was horrified to see that his eyes were rolling to the back of his head. I was crying and Ryan and I were just screaming his name.
Finally, after what seemed like forever, he GASPED.
I just remember holding him and staring at his face. I have never seen it so lifeless.
After that he was still upset, but he calmed down a little, probably due to the fact that he just had absolutely no strength left.
He stopped fighting, but he was still whimpering in pain.
The nurse returned again with something she told us was an anti anxiety med. She said it would kick in right away and thank God it did.
After the first couple minutes passed of him laying still with his eyes closed, Ryan and I grabbed our bag of subway that had been sitting on the table untouched for 3 hours, and headed to the waiting room down the hall.
Ounce we got there, Ryan sat down, pulled me onto his lap, and we both just BROKE. It was 11:30 and I'm sure my cries woke up every sleeping body on the floor. I just sobbed and sobbed, releasing all of the emotion that was bleeding out of my heart.
I told Ryan that I felt like Landon thinks we're the enemies. I sobbed at the fact that I'm his mama and I could do absolutely nothing to help my baby. I sobbed thinking of the face that looked up at me numerous times and just begged me to do something to fix his pain. I sobbed because I had to use force to pin my child's arms down when all he wanted to do was relieve his pain, because no one else was doing it for him. I sobbed because I know my child and I know when he's hungry. I sobbed because I couldn't satisfy this most basic need of his. I sobbed because I watched my child choose suffocation over the pain it takes for him to breathe.
After Ryan and I had spent each of our tears and finally ate something, we went back into Landon's room to pull out our chairs and hopefully get some sleep.
It seemed like I had hardly laid my head on the pillow when I was awoken by Landon's screams. I wanted so badly to ignore them. I was so exhausted, but I knew there was no way I could sleep when my baby was hurting like that.
I looked at the clock and it was 1:30AM. Landon's voice was scratchy so the nurse told me she was going to see if she could suction any of it out. I helped another nurse sit Landon up and I watched as Landon's nurse proceeded to push a tube through Landon's nose and all the way down his throat. Every now and then she would push a button that pulled tons of bloody gunk out of Landon's throat. I was startled by the blood and they told me that it's not uncommon after having breathing tubes in because the tubes are large and they can scratch against the esophagus.
After they were done, Landon's breathing was much better. I was kicking myself for not telling them to try that sooner.
Although that helped Landon's breathing, it didn't seem to help his agitation.
Finally at around 2 o clock in the morning, after three nurses and the charge nurse, called the big guns to plead Landon's case for a simple bottle of formula, the request was granted. I'm sure so many of the nurses joined Landon's team because they were getting sick of his screaming waking up their patients, but whatever the reason. I couldn't have been happier making that bottle. Landon grabbed it right out of my hands, which fed my fear that he had lost all trust in his mama :(
He downed 3 ounces in 10 min and was O...U...T before the bottle had even dropped from his hands.
I wanted to share about our horrible, awful, no good day because maybe another heart (or just hurting) mama will read it someday and I can give you hope that even the worst days don't last forever. They will soon turn into yesterday and my hope is that your today will renew your hope just like mine did.
Yesterday I looked into my sons eyes and didn't see the love and adoration that I had grown so accustomed to. I feared that his trauma would scar his love for me. I was sure that I would have to earn back his trust, but then today I was reminded of the goodness and faithfulness of our God. He created children with a resilience that is unbelievable.
I tried to change my memories to words and use them to paint for you a clear picture of our yesterday. I titled the picture "pain" because everything about yesterday seemed to be painful. But today I was reminded that pain can often lead straight into joy and healing.
Today...
The physical therapist showing me that it's okay for Landon to sit up
He wanted to move around and play with his toys :)
Reaching for my hair and melting my heart all over again
He wanted the light on his toe
"I still love you mama."
Content and watching Cars
Everyday is a "new" day!
Some days are so much harder then other's, but I am learning that if we embrace each one and grab every ounce of the mercy God is giving us, the good and the bad days can blend together into a life that is beautiful and worth living.
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
for his compassions never fail.
They are new every morning;
great is your faithfulness.
great is your faithfulness.
Lamentations 3:22
Thank you again to each of you who prayed for us yesterday. I don't know if there has ever been a day where our family has needed it more.
We love you!
Tuesday, January 8, 2013
The waiting
I'm tempted to just leave this blog completely blank because that is how I feel right now. With every time we enter this waiting room, we feel a little more prepared, but with each visit it only seems to get harder. I always wonder how I will feel in this moment, but now the wondering has turned into the present moment and I'm only left wondering why I ever wonder in the first place because it's always the same feeling... complete and total numbness.
Life seems to stand still in this waiting room.
There is no laughter, you rarely ever hear people talking. This room is respected. This room has been the bearer of good news, but it has also been the place where parents hearts have stopped beating. Most people who are beckoned to spend long L...o...n...g hours in this room stare aimlessly at the many tvs or sit on their laptops or ipads.
Ryan is playing mindless games on his phone and I usually try to waste time on facebook. Whatever we can do to keep our minds numb. I think the numbness is a gift from God. It would be too hard to feel at a time like this.
Right now hearing laughter makes we want to throw up.... just being honest.
Ryan and I ventured out to the coffee shop a while ago. When we got there the young girls who were working were all singing with the song on the radio. Usually this would of made me smile or even giggle, but not today. Today it just seemed like a cruel joke. The sun shining through the windows just feels wrong because it is such a polar opposite from the dark gloom that hovers over my heart.
Unless you have gone through something like this it is impossible for you to understand these kind of feelings. I no longer judge people who come across as crabby because I've learned that you just don't know what people are going through. Who knows, maybe that person you just judged had to say a hard good-bye recently.
Good bye was excruciating today.
Up until a couple weeks ago, Landon has been great with any one he meets. I don't know what switched in his mind, but he definitely has stranger anxiety going on now. So I knew this good bye would most likely be different then the last couple we've had at the "kissing corner", but I wasn't prepared for how Landon reacted. He clung to me, buried his head in my chest and cried. The nurse was waiting for us to put him in the bed so they could wheel him back into the OR, but I just couldn't let my baby go while he was so upset.
I knew that I couldn't take him and run, so eventually, with shaking hands I peeled Landon off of me and laid my screaming baby down in the bed. His choking sobs are still echoing in my head. Ryan and I watched as the doors opened and the nurse pulled Landon's bed through them. After the doors closed and we could no longer see the bed that held our baby boy, Ryan and I clung to each other, turned around, and began our walk down the hall that leads to this room... this dreaded room. As we were walking we heard the most blood curdeling scream I've ever heard, and I knew in a nano second that it was coming from my baby. At that moment I broke. I couldn't keep walking, it took all of my strength just to remain on my feet. Ryan pulled me in and we both cried. Well Ryan cried and I sobbed.
I know that this day is a victorious day in the eyes of God. Although I believe with all my heart that God is crying right along with us, because He doesn't disconnect Himself from our pain (Jesus proved that), I also believe that God is pleased because God is accomplishing a miracle in Landon's little heart. The doctors are so hopeful that this will be Landon's last surgery. There are no words to explain the relief and joy my heart feels when I think of that.
Sadly knowing the outcome of this day, doesn't immune us from the fear and sorrow that it carries. The only thing that we can do is wait. We wait for the phone to ring to hear any updates on what is happening in our babies OR room. We will wait the 4 to 5 hours until we can see our baby again and then we will wait with our eyes glued to monitor screens to see how Landon's body reacts to the changes that are taking place in his heart, then we will wait and wait and wait for our little man to slowly wake up. Then we will wait and wait and wait for his little body to heal.
Wait.... wait.... wait... apart from praying with our every breath, that is just all we can do right now.
Thank you for the prayers. Thank you for each of the words of encouragement. On days like today, that is what gets us through the long minutes.
Getting our snuggles in
I don't know how often I will be able to blog, but like I said, I'll be on fb most of the time. Again, all comments and prayers left on my wall are read and so appreciated by our family. We took one of the biggest sections in this large room and it's amazing for me to think about the many MANY people who are with our family, not physically, but spiritually. People of all different colors and nationalities. I see people kneeling praying in languages that I don't know, sending up prayers to our Father on behalf on our little boy.
Truly words can't express our thanks. We were informed that although this will most likely be Landon's last surgery, it is still a very high risk surgery. Your prayers are our protection against all of the scary words the doctors throw at us.
Life seems to stand still in this waiting room.
There is no laughter, you rarely ever hear people talking. This room is respected. This room has been the bearer of good news, but it has also been the place where parents hearts have stopped beating. Most people who are beckoned to spend long L...o...n...g hours in this room stare aimlessly at the many tvs or sit on their laptops or ipads.
Ryan is playing mindless games on his phone and I usually try to waste time on facebook. Whatever we can do to keep our minds numb. I think the numbness is a gift from God. It would be too hard to feel at a time like this.
Right now hearing laughter makes we want to throw up.... just being honest.
Ryan and I ventured out to the coffee shop a while ago. When we got there the young girls who were working were all singing with the song on the radio. Usually this would of made me smile or even giggle, but not today. Today it just seemed like a cruel joke. The sun shining through the windows just feels wrong because it is such a polar opposite from the dark gloom that hovers over my heart.
Unless you have gone through something like this it is impossible for you to understand these kind of feelings. I no longer judge people who come across as crabby because I've learned that you just don't know what people are going through. Who knows, maybe that person you just judged had to say a hard good-bye recently.
Good bye was excruciating today.
Up until a couple weeks ago, Landon has been great with any one he meets. I don't know what switched in his mind, but he definitely has stranger anxiety going on now. So I knew this good bye would most likely be different then the last couple we've had at the "kissing corner", but I wasn't prepared for how Landon reacted. He clung to me, buried his head in my chest and cried. The nurse was waiting for us to put him in the bed so they could wheel him back into the OR, but I just couldn't let my baby go while he was so upset.
I knew that I couldn't take him and run, so eventually, with shaking hands I peeled Landon off of me and laid my screaming baby down in the bed. His choking sobs are still echoing in my head. Ryan and I watched as the doors opened and the nurse pulled Landon's bed through them. After the doors closed and we could no longer see the bed that held our baby boy, Ryan and I clung to each other, turned around, and began our walk down the hall that leads to this room... this dreaded room. As we were walking we heard the most blood curdeling scream I've ever heard, and I knew in a nano second that it was coming from my baby. At that moment I broke. I couldn't keep walking, it took all of my strength just to remain on my feet. Ryan pulled me in and we both cried. Well Ryan cried and I sobbed.
I know that this day is a victorious day in the eyes of God. Although I believe with all my heart that God is crying right along with us, because He doesn't disconnect Himself from our pain (Jesus proved that), I also believe that God is pleased because God is accomplishing a miracle in Landon's little heart. The doctors are so hopeful that this will be Landon's last surgery. There are no words to explain the relief and joy my heart feels when I think of that.
Sadly knowing the outcome of this day, doesn't immune us from the fear and sorrow that it carries. The only thing that we can do is wait. We wait for the phone to ring to hear any updates on what is happening in our babies OR room. We will wait the 4 to 5 hours until we can see our baby again and then we will wait with our eyes glued to monitor screens to see how Landon's body reacts to the changes that are taking place in his heart, then we will wait and wait and wait for our little man to slowly wake up. Then we will wait and wait and wait for his little body to heal.
Wait.... wait.... wait... apart from praying with our every breath, that is just all we can do right now.
Thank you for the prayers. Thank you for each of the words of encouragement. On days like today, that is what gets us through the long minutes.
Here's some pictures from our morning...
Fell asleep on the drive to the hospital. We got here around 5:45
I know he's a boy, but if there ever was a sleeping beauty... am I right? :)
Playing with the train set in the OR waiting room, waiting to go back to the pre-op room.
Back in the pre-op room, changed into his hospital jammies now.
Getting our snuggles in
Papa my tummy is grumbling. Where's my nanner oatmeal
The dreaded walk.. :(
The worst good-bye
I don't know how often I will be able to blog, but like I said, I'll be on fb most of the time. Again, all comments and prayers left on my wall are read and so appreciated by our family. We took one of the biggest sections in this large room and it's amazing for me to think about the many MANY people who are with our family, not physically, but spiritually. People of all different colors and nationalities. I see people kneeling praying in languages that I don't know, sending up prayers to our Father on behalf on our little boy.
Truly words can't express our thanks. We were informed that although this will most likely be Landon's last surgery, it is still a very high risk surgery. Your prayers are our protection against all of the scary words the doctors throw at us.
Tuesday, January 1, 2013
Our hope for 2013: Two more Miracles
Last night the world said good-bye to 2012. We watched as millions of people gathered at Time Square in NY city, dressed in big blue hats and shiny glasses shaped to make the numbers 2013. The announcers walked around like they do every year and asked some of the people what their hopes are for 2013. I was disheartened by some of the answers, they seemed shallow, the kinds of things that I'm sure everyone wishes for every year. Things that don't need to even be mentioned, like losing weight, a house, a puppy (really?). None of those things are wrong, they are just so..... earthly.
You see, 2012 gave me more then I ever bargained for. It ruined me for a normal life. As Ryan and I sat in the comfort of our home, playing games, sipping sparlkling cider, and somewhat listening to what was being brodcasted from Time Square, I couldn't help but think about the wishes that matter. The wishes that wont be heard by the world because their hiding in hospital rooms, locked away in their mama's tummy, or adandoned in orphanages.
Wishes for life.
Some parents couldn't care less, about the size of their house, all they want is to bring their child into something that they could together, as a family, call home.
Some babies speak their wish, not with words, but the fact that everyday their tiny body is growing and developing in miraculous ways. Ways that are meant to sustain them for a lifetime that their mother is contemplating not allowing them to have.
There were children that went to bed last night, not even knowing that a new year is upon them. Every year, everyday is the same for them, hopeless and alone. They have no family to teach them of the joys of change. They have no idea what it means to pass from one thing into something different.
What about them?
Can we so easily forget about them because our focus is on, getting that new job or building that dream house? Or here's a noble cause, actually doing some of the Pinterest projects you have pinned?
2012 led us to a strange place. In a sense, we feel like God is offering us our normal back. We have been told that after Landon's next surgery he will have a two ventricle, normal functioning heart and will not need anymore surgeries in his future. This is such a miracle! I can't lie, my heart almost burst when it heard the word "normal".
It was like the mention of an old friend.
But the more I had time to think about it the more I realized that "normal" is no friend to us at all. All she did was distract us from the things that really mattered. "Normal" made us selfish and shallow. Don't get me wrong, everybody has their own normal, but the normal I'm talking about is the one that society tries to pin us with. The one that can never be attained, but is like a mirage in our minds and leads us to believe that every one else has already attained it.
I don't want that for our family. Call me crazy, but I don't want that for Landon. We want him to know that there's so much more to life then just his accomplishments.
So we're not going back to "normal", not even just to look around and remember what it was like to not be burdened by the injustices and pain of this world. Yes, it might make for a nice little vacation, but we know that it's way to enticing. Ryan and I know that we could so easily get sucked back into the stress of our old life. Chasing things that don't matter because they promise to make us happy, but only leave us unsatisfied because we also need this "other" thing to actually seal the deal to happiness. Nope, we're not falling for that one. You're sly "normal", but you underestimate the power of the cross.
Sorry church, but God didn't call us to pick up our la-z boy recliners and follow him. What?!? Nope, He didn't even call us to pick up our 72" TV and follow him. No, it doesn't even make a difference if you got it on a Black Friday special and you paid for it with cash. That might make Dave Ramsey proud, but it's not going to get you any crowns in the Kingdom of Heaven... sorry.
We are called to pick up our crosses. There's no getting around it... we're called to suffer in this life. We're called to put others needs in front of our own. We're called to die to ourselves. We're called to not conform to the world. We're called to be transformed into the likeness of Christ.
So as much as Ryan and I would like to live carefree lives, where we could ignore the fact that innocent life is being abused and murdered,
we can't.
I wasn't planning on telling you guys this until after Landon's surgery, but I feel like God is saying "do it." so here goes...
2013 holds so much hope for us. We feel as though God is closing one chapter, but it leads so perfectly into the next it's as though one chapter is ending mid sentence and the next chapter is picking up right where it left off.
Our sleepless nights, our fears, our need to be our child's advocates are far from over. In fact, we feel as though they are truly only beginning.
God has brought us face to face with children no different then Landon. Children that have been labeled because they have some kind of special need. The difference between these children and our Landon is the fact that we chose to love whereas these children's parents chose to abandon. For the most part, society has looked on our Landon with lovingly concerned eyes, but for these children, their society has looked on them, pointed a finger, and said "worthless." Landon has been able to get some of the best medical treatment out there, but these children have been transferred to a mental institution at the age of 5, where they will spend the rest of their short life confined to a crib.
God has BROKE our hearts more over the past 6 months then I can even explain with words. Each episode of brokenness has led us further and further down a path of total surrender. A path that feels so right, it's as though we are taking steps into footprints that God already fitted perfectly for our feet.
Ryan and I have known since we were dating that someday we would adopt. We knew that we would likely have more adopted children then biological. We had even talked about adopting our first child. That plan obviously didn't pan out since I got pregnant a month into our marriage.
But here is the part I am very ashamed of.
Before Landon, I NEVER would have considered adopting a child with special needs. I justified my prejudice with thoughts like, God calls special people to parent children like that. Then God did something I thought was mean, He didn't even give me the choice. He just placed a special heart in my womb and through it, He taught me what unconditional love truly looks like. It looks like loving your child, not for their looks or their abilities, but just because they are your child and there's nothing that could quench the love you have for them.
We were all labeled special needs before Christ died for us. We were helpless, ugly, and had no worth, but God didn't care. He loved us despite our sin. He reached down and chose us, not because of what we could do for Him, but simply because he loved us. (period!)
God has asked us if we are willing to demonstrate this kind of love for a child.
Armed with everything God has taught us about love and life in 2012, we are entering 2013 as completely different people then we were New Years day last year. Last year, I held a change in my womb that I didn't choose nor want, but this year, God is giving us the choice between "normal" and "transformation" and we're happy to announce we're choosing the latter.
This is going to mean a lot of things for our family.
It means that we need your support more then ever before.
I know many of you are going to exit out of our blog in this new year, yelling at us in your head, telling us that we are absolutely nuts! That's okay, we probably are, but we have no doubt that God is going before us down this crazy path, leading our way.
Soooooo.....
We're adopting.
No, it is not the ideal time for us. We told God when we would pursue adoption....
After I'm done with school.
After Landon's last surgery.
After we get a house.
After we pay off our student loans.
Then he replied by showing us the faces of two precious boys that may not have a year.
So yes, we may be crazy, but if Landon's life depended on some family across the world being crazy and adopting him when everyone else was just waiting for him to die, we wouldn't care how crazy and how uncomfortable it may make their life. We would just beg them saying, "this is our son! Please go to him. Please love him."
That is exactly what God has told us. "These are my boys Ryan and Natalie. They don't have time. Please go to them. Please love them. I will give you everything you will need, all I need from you is your willing heart."
Our hope for 2013 is for a miracle. A miracle that will bring two more miracles into our home.
You see, 2012 gave me more then I ever bargained for. It ruined me for a normal life. As Ryan and I sat in the comfort of our home, playing games, sipping sparlkling cider, and somewhat listening to what was being brodcasted from Time Square, I couldn't help but think about the wishes that matter. The wishes that wont be heard by the world because their hiding in hospital rooms, locked away in their mama's tummy, or adandoned in orphanages.
Wishes for life.
Some parents couldn't care less, about the size of their house, all they want is to bring their child into something that they could together, as a family, call home.
Some babies speak their wish, not with words, but the fact that everyday their tiny body is growing and developing in miraculous ways. Ways that are meant to sustain them for a lifetime that their mother is contemplating not allowing them to have.
There were children that went to bed last night, not even knowing that a new year is upon them. Every year, everyday is the same for them, hopeless and alone. They have no family to teach them of the joys of change. They have no idea what it means to pass from one thing into something different.
What about them?
Can we so easily forget about them because our focus is on, getting that new job or building that dream house? Or here's a noble cause, actually doing some of the Pinterest projects you have pinned?
2012 led us to a strange place. In a sense, we feel like God is offering us our normal back. We have been told that after Landon's next surgery he will have a two ventricle, normal functioning heart and will not need anymore surgeries in his future. This is such a miracle! I can't lie, my heart almost burst when it heard the word "normal".
It was like the mention of an old friend.
But the more I had time to think about it the more I realized that "normal" is no friend to us at all. All she did was distract us from the things that really mattered. "Normal" made us selfish and shallow. Don't get me wrong, everybody has their own normal, but the normal I'm talking about is the one that society tries to pin us with. The one that can never be attained, but is like a mirage in our minds and leads us to believe that every one else has already attained it.
I don't want that for our family. Call me crazy, but I don't want that for Landon. We want him to know that there's so much more to life then just his accomplishments.
So we're not going back to "normal", not even just to look around and remember what it was like to not be burdened by the injustices and pain of this world. Yes, it might make for a nice little vacation, but we know that it's way to enticing. Ryan and I know that we could so easily get sucked back into the stress of our old life. Chasing things that don't matter because they promise to make us happy, but only leave us unsatisfied because we also need this "other" thing to actually seal the deal to happiness. Nope, we're not falling for that one. You're sly "normal", but you underestimate the power of the cross.
Sorry church, but God didn't call us to pick up our la-z boy recliners and follow him. What?!? Nope, He didn't even call us to pick up our 72" TV and follow him. No, it doesn't even make a difference if you got it on a Black Friday special and you paid for it with cash. That might make Dave Ramsey proud, but it's not going to get you any crowns in the Kingdom of Heaven... sorry.
We are called to pick up our crosses. There's no getting around it... we're called to suffer in this life. We're called to put others needs in front of our own. We're called to die to ourselves. We're called to not conform to the world. We're called to be transformed into the likeness of Christ.
So as much as Ryan and I would like to live carefree lives, where we could ignore the fact that innocent life is being abused and murdered,
we can't.
I wasn't planning on telling you guys this until after Landon's surgery, but I feel like God is saying "do it." so here goes...
2013 holds so much hope for us. We feel as though God is closing one chapter, but it leads so perfectly into the next it's as though one chapter is ending mid sentence and the next chapter is picking up right where it left off.
Our sleepless nights, our fears, our need to be our child's advocates are far from over. In fact, we feel as though they are truly only beginning.
God has brought us face to face with children no different then Landon. Children that have been labeled because they have some kind of special need. The difference between these children and our Landon is the fact that we chose to love whereas these children's parents chose to abandon. For the most part, society has looked on our Landon with lovingly concerned eyes, but for these children, their society has looked on them, pointed a finger, and said "worthless." Landon has been able to get some of the best medical treatment out there, but these children have been transferred to a mental institution at the age of 5, where they will spend the rest of their short life confined to a crib.
God has BROKE our hearts more over the past 6 months then I can even explain with words. Each episode of brokenness has led us further and further down a path of total surrender. A path that feels so right, it's as though we are taking steps into footprints that God already fitted perfectly for our feet.
Ryan and I have known since we were dating that someday we would adopt. We knew that we would likely have more adopted children then biological. We had even talked about adopting our first child. That plan obviously didn't pan out since I got pregnant a month into our marriage.
But here is the part I am very ashamed of.
Before Landon, I NEVER would have considered adopting a child with special needs. I justified my prejudice with thoughts like, God calls special people to parent children like that. Then God did something I thought was mean, He didn't even give me the choice. He just placed a special heart in my womb and through it, He taught me what unconditional love truly looks like. It looks like loving your child, not for their looks or their abilities, but just because they are your child and there's nothing that could quench the love you have for them.
We were all labeled special needs before Christ died for us. We were helpless, ugly, and had no worth, but God didn't care. He loved us despite our sin. He reached down and chose us, not because of what we could do for Him, but simply because he loved us. (period!)
God has asked us if we are willing to demonstrate this kind of love for a child.
Armed with everything God has taught us about love and life in 2012, we are entering 2013 as completely different people then we were New Years day last year. Last year, I held a change in my womb that I didn't choose nor want, but this year, God is giving us the choice between "normal" and "transformation" and we're happy to announce we're choosing the latter.
This is going to mean a lot of things for our family.
It means that we need your support more then ever before.
I know many of you are going to exit out of our blog in this new year, yelling at us in your head, telling us that we are absolutely nuts! That's okay, we probably are, but we have no doubt that God is going before us down this crazy path, leading our way.
Soooooo.....
We're adopting.
No, it is not the ideal time for us. We told God when we would pursue adoption....
After I'm done with school.
After Landon's last surgery.
After we get a house.
After we pay off our student loans.
Then he replied by showing us the faces of two precious boys that may not have a year.
So yes, we may be crazy, but if Landon's life depended on some family across the world being crazy and adopting him when everyone else was just waiting for him to die, we wouldn't care how crazy and how uncomfortable it may make their life. We would just beg them saying, "this is our son! Please go to him. Please love him."
That is exactly what God has told us. "These are my boys Ryan and Natalie. They don't have time. Please go to them. Please love them. I will give you everything you will need, all I need from you is your willing heart."
Our hope for 2013 is for a miracle. A miracle that will bring two more miracles into our home.
Monday, December 10, 2012
What I couldn't say then..
It is so hard to believe that at this time last year. We were grieving the loss of our baby. We couldn't see then that God had to take away our dreams so that he could give us something better then we could have ever imagined.
Thank you Lord for our child. No matter what we may face with him, we praise You for creating him and knitting him together just the way You did. He is beautiful and perfect.
That scar down his chest is a constant reminder to us that he is fearfully and wonderfully made. You don't make mistakes. I don't know where or who I would be without his precious heart.
So today I'm choosing to say what I couldn't say last year...
Thank you!
Thank you Lord for our child. No matter what we may face with him, we praise You for creating him and knitting him together just the way You did. He is beautiful and perfect.
That scar down his chest is a constant reminder to us that he is fearfully and wonderfully made. You don't make mistakes. I don't know where or who I would be without his precious heart.
So today I'm choosing to say what I couldn't say last year...
Thank you!
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