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:)
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