How great is our God that we can go to Him with all things? We have the freedom, the approach, the time and ability. We can take it all to Him, we can be as raw as we need to be, we can lay it all out with boldness, confidence and mercy. (Hebrews 4:15-16).
With every passing day I am learning more and more that this world is not my home. The Lord is coming back someday for His children and every knee will bow, every tongue will confess that He is Lord. (Romans 14:11)
Port and I have never needed a diagnosis of any sort to know that there were things going on with Riley. When I was around 17 wks pregnant with Riley and on bed rest for complete placenta privia, the Lord spoke so clearly to me. He told me then that Riley would be different, that she wouldn't be normal according to the standards of the world but not to fear for she is fearfully and wonderfully made, just as Psalm 139 tells me. He told me that she would teach us and show us things we had never known before, that she will lead others to Him by what she endures. We knew then, that whatever lay ahead was God's will for our lives and what a roller coaster it's been since then.
Funny how once the Lord Almighty confirms something to you, leads you to a divine moment with Him (and I've had many of these since Riley's birth) the enemy will come in to tear you down, causing doubt. I have struggled for months, more so now, that I have given Port a sick baby, a baby who is not normal or well, one that I cannot make well for there is no cure. I carried her for 9 months, she grew in my body. I did something wrong.
Since then, maybe I didn't fight hard enough. I've learned that with some doctors, not all, but some you must fight and fight hard. I fight like hell for Riley with each doctor that comes our way. I treat them with respect and try hard to show them that Christ dwells within me, but I fight.
After an entire week of no news on her brain MRI, I threatened to go to the neuro's office until he would see me. This approach is one I've used several times in the past with other doctors who don't feel Riley deserves their time. Still with no help I waited one more day. I left 9 messages over the course of a week. I then called back and said I would be at the office in the morning to take Riley's records and results, that JAG would escort me if I asked them to do so.
In the meantime I called Riley's Ped, knowing she has access to test results ect. I asked her to read them to me and explained that the neuro was too busy, unwilling to help. She read to me what maybe we expected but hurt beyond what words can express. There is an abnormality on Riley's brain that represents seizures. We do not know that Riley has or hasn't had seizures because they come in so many different types and forms. But there is a spot there. It looks as though it has been there since birth. My heart hit the floor.
"How will I tell my husband Lord? Am I to prepare for seizures, has she been having them without me knowing? Lord, has she suffered with this and now 27 months later we know about it? Why do the reports keep coming, why after Port is away? Why didn't the doctor call?" While many say to be thankful for answers, we are weary of them in ways.
"Lord you made her but nothing appears right; her lungs, her feet, her legs, her throat, her stomach, hear ears. She has tubes Lord, in her ears and stomach. She has braces on her feet Lord. She is in more therapies a week than I can make possible. Her brain. Her genetics. What else???? Forgive me Lord for questioning you. Forgive me for looking at your work as "not right." Forgive me for making it about me...how I feel as a failure in carrying her, how I could be doing so much better with my husband away. It's not at all about me but all about you Lord."
I don't understand this fallen world. I don't understand why doctors play around with the brain of a human being. I don't understand that lack of compassion as the neuro finally calls back to say, "we have something to discuss with you but it's no emergency. Can you come in to talk in 2 weeks?"
"Bring my husband home Lord, I need him. Bring him now. Take us to doctors that are filled with you. Bless those who pray constantly for us, who help us faithfully by serving and getting out of their boat. You make all things beautiful in your time and Riley is beautiful. She was made by the Creator, knit together in the secret place. Strengthen your people, that those who do not know you will. Forgive us. May we praise you and show thanksgiving in all things, may we bless your Holy Name in the midst of unbearable heartache. It's ok if you don't heal her, it's ok if you choose not too....but please give us the strength and courage to take the next step, whatever that may be."
Jesus, Jesus, Jesus, Jesus, Jesus, Jesus, Jesus.
Thursday, July 28, 2011
Wednesday, July 6, 2011
I'm Just Sayin'
God is good! Amen? Amen! He is still in the business of miracles, healings, providing and moving mountains!
Port and I prayed healing and recovery for our finances and we got a deployment. Deployments though, mean extra income aka "deployment pay."
I expressed a need for leotards for Riley and 3, yes 3 were purchased from others as a gift to her!
I asked the word be put out that we need a crib. Riley was in such need of a safe place to sleep with enough room to accomodate her height and medical supplies that have to be in the bed with her. We were gifted a brand new crib this week. Yep, brand new! Not only that, but my awesome friends spent the entire afternoon here today putting it together and rearranging furniture so that all the bedrooms are open and fully funtional.
Two weeks ago we were sent a monetary gift from a precious family member, making it possible to stock up on groceries, put the big kids in a sport and buy bandages/gauze/tape that our insurance doesn't cover for Riley.
At that same time we were gifted with numerous gift cards from a sweet sweet family, making it possible to make purchases like fans (we don't have AC and it's in the mid 90's), onesies for Riley, summer clothes for the big kids along with numerous purchases to allow for more storage of Riley's medical supplies, toys ect.
Family and friends have been outpouring their time, money and resources to my husband. He's been receiving mail and boxes regularly. It's so important to keep moral up but also lifts some of the burden off of me when others send what he's needing.
My father in law, my dad, was here for an entire week. Though the visit wasn't exactly what we had planned, he was here to celebrate Carson turning 5. He was here to spend time with us, give us a few fun outings and share in all it takes to get thru the day around here.
Recently my 3 best friends in CO have moved. One is actually in the process of PCS'ing now. My entire close knit inner circle is leaving, my husband is already gone. I have prayed for a new friend. I now have quite a few... Alicia, you will never know this side of heaven what you do for the rest of us military wives. You are ALWAYS there, ready to pitch in and get your hands dirty with me. You are constantly showing us just how Jesus loves by your acceptance and your servants heart. Tesia, you have filled such a hole in my heart with your love and friendship to me and my family. There are no words to thank Nick and you for standing in the gap, for doing what my own husband would if he were here. I have laughed more with you than I have in so very long. I love you both so very much, more than you know.
We have answers for our sweet girl. It's not what we wanted but we are trusting in God's plan for us. We know His plans are better, His ways are more than ours.
A few girls from my church have gathered to help me with childcare for my big kids during Riley's appointments and therapies. What a relief and blessing it is for us all! Tiff, thank you for taking every single week faithfull for me:)
I could go on and on...I just may in my journal. It's so important to remember that in the midst of life, we have to count our blessings. We have to recall what the Lord has done for each of us every single day. This life can throw what it wants my way. It's ok really, I know how it all ends and victory is the Lord's.
God is so good, I'm just sayin'
Port and I prayed healing and recovery for our finances and we got a deployment. Deployments though, mean extra income aka "deployment pay."
I expressed a need for leotards for Riley and 3, yes 3 were purchased from others as a gift to her!
I asked the word be put out that we need a crib. Riley was in such need of a safe place to sleep with enough room to accomodate her height and medical supplies that have to be in the bed with her. We were gifted a brand new crib this week. Yep, brand new! Not only that, but my awesome friends spent the entire afternoon here today putting it together and rearranging furniture so that all the bedrooms are open and fully funtional.
Two weeks ago we were sent a monetary gift from a precious family member, making it possible to stock up on groceries, put the big kids in a sport and buy bandages/gauze/tape that our insurance doesn't cover for Riley.
At that same time we were gifted with numerous gift cards from a sweet sweet family, making it possible to make purchases like fans (we don't have AC and it's in the mid 90's), onesies for Riley, summer clothes for the big kids along with numerous purchases to allow for more storage of Riley's medical supplies, toys ect.
Family and friends have been outpouring their time, money and resources to my husband. He's been receiving mail and boxes regularly. It's so important to keep moral up but also lifts some of the burden off of me when others send what he's needing.
My father in law, my dad, was here for an entire week. Though the visit wasn't exactly what we had planned, he was here to celebrate Carson turning 5. He was here to spend time with us, give us a few fun outings and share in all it takes to get thru the day around here.
Recently my 3 best friends in CO have moved. One is actually in the process of PCS'ing now. My entire close knit inner circle is leaving, my husband is already gone. I have prayed for a new friend. I now have quite a few... Alicia, you will never know this side of heaven what you do for the rest of us military wives. You are ALWAYS there, ready to pitch in and get your hands dirty with me. You are constantly showing us just how Jesus loves by your acceptance and your servants heart. Tesia, you have filled such a hole in my heart with your love and friendship to me and my family. There are no words to thank Nick and you for standing in the gap, for doing what my own husband would if he were here. I have laughed more with you than I have in so very long. I love you both so very much, more than you know.
We have answers for our sweet girl. It's not what we wanted but we are trusting in God's plan for us. We know His plans are better, His ways are more than ours.
A few girls from my church have gathered to help me with childcare for my big kids during Riley's appointments and therapies. What a relief and blessing it is for us all! Tiff, thank you for taking every single week faithfull for me:)
I could go on and on...I just may in my journal. It's so important to remember that in the midst of life, we have to count our blessings. We have to recall what the Lord has done for each of us every single day. This life can throw what it wants my way. It's ok really, I know how it all ends and victory is the Lord's.
God is so good, I'm just sayin'
Friday, July 1, 2011
Riley's Road: Who She Is
This post is about our Riley girl and who she is.
Last Thursday I received a call from our Nero doc to bring Riley in first thing in the morning that next day. I knew something big was about to happen. Worried, anxious and full of dread, I hit my knees and prayed that Port would be calling soon. When he didn't, I wrote him to let him know I was taking Riley in and why.
After sitting in the Nero waiting room for 20 min a nurse came to tell me our doctor was running an hour late due to some emergencies at the hospital he was dealing with. I asked her why we were here, explained the call I had gotten and one look said it all. "Come with me dear, let's get you in a room for some privacy." She handed me form after form with Riley's name and birth date but I could understand none of them. They were full top to bottom with medical terms, one after another, doctor lingo. I cried from fear which seemed to be taking over quickly and then pulled it together to go back to the waiting area so Riley could play while we waited for the doctor.
I don't know how much time passed before our doctor came into the waiting room, gave me the same look the nurse did and escorted me into another room. Sitting there, in a cold and sterile room, without my husband, holding these forms was one of the hardest things I've ever had to do. For nearly 26 months Port and I have prayed without ceasing for answers for our girl, that someone could make sense of what she deals with. Finally it was coming to that but I was terrified.
I felt like I was in a fog, I could understand nothing, I could hear nothing. Until suddenly it came together and began to make sense. I asked the doctor to repeat to me what he was saying numerous times. I was mad, I was so very mad. Why Lord? Why our girl? Why after so long of fighting do we find this out just after our 3rd deployment has started?
"A long road ahead of her, time will tell, there is more testing to be done, more therapies, I can no longer treat her, you will get thru this, I can't give false hope, I don't want to alarm you, we're going to fight for her." All things he said to me. I only wanted to know if I did it. Did something happen in the pregnancy I should have seen or noticed? Did I miss something once she was born? Did I not fight other doctors hard enough when I told them all something was wrong? I know that "it" isn't my fault but haven't totally understood it either.
We don't want Riley known for a diagnosis, for her struggles, therefor, we will continue to give and respect her privacy as best we can. Those closest to us know what needs to be known.
Riley isn't going to just get better. There is no therapy, no surgery, no specialist that can take this or even ease it. Perhaps that's the hardest part of it all. I took the best organic prenatal vitamins we could afford during my pregnancy, I was on bed rest for much of it. She is fully vaccinated as are all of our kids, she's never been to childcare outside of her church class and a very few trusted friends/family. She was breastfed exclusively for 13 months and has taken an organic liquid vitamin for infants and other supplements to help her tiny body since she was far younger than she is now. I am extremely cautious about who is allowed around her, who she plays with and the kids in her classroom and have no problems removing her from situations and others when I don't feel she is safe or that she is at any risk. She gets sick like any other child but we take extreme caution in keeping her well as best we can. She has seen all of the best doctors in CO, she has been in the 2 top hospitals in the nation. She wears the best diapers, eats the best groceries and the best medical care money can buy. That being said, it doesn't matter much when your child isn't healthy. It's hard to know that very little to nothing you do can or would change anything you deal with now.
We've taken the last week to grieve and praise at the same time. We've let it sink in though some days it doesn't seem real. While we are so heartbroken at what can't be fixed, that all we've done hasn't helped, we praise our Father in heaven for His answers. For such a time as this, He has chosen to allow us to know. We have answers and I'm sure many more are to come but we have some answers. We have a diagnosis and we have the attention of the military and some doctors.
Riley is fearfully and wonderfully made just as Psalm 139 tells me. The God that I love, I live for and serve doesn't mess up. He made Riley just as she is for a divine reason. She is perfect in His image and quite perfect in mine as well. While she has had to endure much more than any 26 month should have too, I know that it could still be so much worse. It isn't terminal or life threatening, we just have to fight different. It doesn't change who Riley is and who we are. She belongs to the Lord and she is a precious gift to me, one that I don't deserve. Our faith doesn't waver but strengthens as we see that we are equipped for this. Our love for her and each other doesn't shrivel up but takes over and pushes us to fight harder.
It would be so easy to feel abandoned in this. It would be so easy to blame God, to blame doctors for what has been missed until now. I could even blame the lab results that came back, changing our lives with the same proof over and over. I can blame the symptoms, people, you name it. But there is no peace there for me.
We are so blessed to have Riley just as she is. We are so unbelievably blessed that God has chosen us to be her parents. It's hard at times, but on the hard days I try hard to remember this. Raising a special needs child is hard. It's no cake walk. People don't get it and some don't care. They don't take the same precautions you do and they lack at times in consideration for our child. But that's ok because in the midst of this storm I can see Him. I know that my God has a tight grip on my hand and He is leading me every single day in Riley's care, in parenting our big kids and in every other aspect of my life. He is gracious to me to give us wisdom, He is blessing us so much in meeting our every need and granting us peace when we want to panic.
She's Riley and God is doing great things thru her:)
Last Thursday I received a call from our Nero doc to bring Riley in first thing in the morning that next day. I knew something big was about to happen. Worried, anxious and full of dread, I hit my knees and prayed that Port would be calling soon. When he didn't, I wrote him to let him know I was taking Riley in and why.
After sitting in the Nero waiting room for 20 min a nurse came to tell me our doctor was running an hour late due to some emergencies at the hospital he was dealing with. I asked her why we were here, explained the call I had gotten and one look said it all. "Come with me dear, let's get you in a room for some privacy." She handed me form after form with Riley's name and birth date but I could understand none of them. They were full top to bottom with medical terms, one after another, doctor lingo. I cried from fear which seemed to be taking over quickly and then pulled it together to go back to the waiting area so Riley could play while we waited for the doctor.
I don't know how much time passed before our doctor came into the waiting room, gave me the same look the nurse did and escorted me into another room. Sitting there, in a cold and sterile room, without my husband, holding these forms was one of the hardest things I've ever had to do. For nearly 26 months Port and I have prayed without ceasing for answers for our girl, that someone could make sense of what she deals with. Finally it was coming to that but I was terrified.
I felt like I was in a fog, I could understand nothing, I could hear nothing. Until suddenly it came together and began to make sense. I asked the doctor to repeat to me what he was saying numerous times. I was mad, I was so very mad. Why Lord? Why our girl? Why after so long of fighting do we find this out just after our 3rd deployment has started?
"A long road ahead of her, time will tell, there is more testing to be done, more therapies, I can no longer treat her, you will get thru this, I can't give false hope, I don't want to alarm you, we're going to fight for her." All things he said to me. I only wanted to know if I did it. Did something happen in the pregnancy I should have seen or noticed? Did I miss something once she was born? Did I not fight other doctors hard enough when I told them all something was wrong? I know that "it" isn't my fault but haven't totally understood it either.
We don't want Riley known for a diagnosis, for her struggles, therefor, we will continue to give and respect her privacy as best we can. Those closest to us know what needs to be known.
Riley isn't going to just get better. There is no therapy, no surgery, no specialist that can take this or even ease it. Perhaps that's the hardest part of it all. I took the best organic prenatal vitamins we could afford during my pregnancy, I was on bed rest for much of it. She is fully vaccinated as are all of our kids, she's never been to childcare outside of her church class and a very few trusted friends/family. She was breastfed exclusively for 13 months and has taken an organic liquid vitamin for infants and other supplements to help her tiny body since she was far younger than she is now. I am extremely cautious about who is allowed around her, who she plays with and the kids in her classroom and have no problems removing her from situations and others when I don't feel she is safe or that she is at any risk. She gets sick like any other child but we take extreme caution in keeping her well as best we can. She has seen all of the best doctors in CO, she has been in the 2 top hospitals in the nation. She wears the best diapers, eats the best groceries and the best medical care money can buy. That being said, it doesn't matter much when your child isn't healthy. It's hard to know that very little to nothing you do can or would change anything you deal with now.
We've taken the last week to grieve and praise at the same time. We've let it sink in though some days it doesn't seem real. While we are so heartbroken at what can't be fixed, that all we've done hasn't helped, we praise our Father in heaven for His answers. For such a time as this, He has chosen to allow us to know. We have answers and I'm sure many more are to come but we have some answers. We have a diagnosis and we have the attention of the military and some doctors.
Riley is fearfully and wonderfully made just as Psalm 139 tells me. The God that I love, I live for and serve doesn't mess up. He made Riley just as she is for a divine reason. She is perfect in His image and quite perfect in mine as well. While she has had to endure much more than any 26 month should have too, I know that it could still be so much worse. It isn't terminal or life threatening, we just have to fight different. It doesn't change who Riley is and who we are. She belongs to the Lord and she is a precious gift to me, one that I don't deserve. Our faith doesn't waver but strengthens as we see that we are equipped for this. Our love for her and each other doesn't shrivel up but takes over and pushes us to fight harder.
It would be so easy to feel abandoned in this. It would be so easy to blame God, to blame doctors for what has been missed until now. I could even blame the lab results that came back, changing our lives with the same proof over and over. I can blame the symptoms, people, you name it. But there is no peace there for me.
We are so blessed to have Riley just as she is. We are so unbelievably blessed that God has chosen us to be her parents. It's hard at times, but on the hard days I try hard to remember this. Raising a special needs child is hard. It's no cake walk. People don't get it and some don't care. They don't take the same precautions you do and they lack at times in consideration for our child. But that's ok because in the midst of this storm I can see Him. I know that my God has a tight grip on my hand and He is leading me every single day in Riley's care, in parenting our big kids and in every other aspect of my life. He is gracious to me to give us wisdom, He is blessing us so much in meeting our every need and granting us peace when we want to panic.
She's Riley and God is doing great things thru her:)
Friday, June 10, 2011
A tightrope of Sorts
The last 10 days have felt like a tightrope walking exercise of sorts. Someone lurking around the house, seeing I was 1,500 over for an oil change, the internet going out, the fence nearly falling on one side, Riley's tube coming out TWICE, finances in the toilet (a deployment in the beginning stages will really do it). My doctor insists I'm depressed, Leea was up throwing up last night, every single night without fail Riley's pump malfunctions and I'm up with it, 7 appointments for Riley last week...and the list goes on.
I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.
I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".
It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.
After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.
It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.
I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.
I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.
I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".
It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.
After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.
It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.
I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.
Tuesday, May 24, 2011
His Great Name
"My God, how can this be what you have for me?" I've asked that very question so many times over the last few months. I've pondered, tried to figure, understand, wrestled, panicked and fought it all.
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
Saturday, May 14, 2011
Q&A and Riley pics
So in the last week we've had tons and tons of questions about Riley, her care, how she is, what has to be done for her now ect. So, I decided to try and answer them all on our family blog! In searching the internet for pic's of feeding tubes ect., I found it really hard to find them....so we've decided also, to include some pic's of what goes on here....to inform others and give you an idea of what goes on in Riley's life now.
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
Sunday, May 8, 2011
48ish hours after surgery
I'm sitting in the hospital room unable to sleep and thinking that just maybe my thoughts are gathered enough to type them out.
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
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