Latley I've been feeling as though I need to defend my walk, my relationship with the Lord, why we do as we do in our family, why we've consented to various testing and treatments for Riley.
It's brutal if I say so myself. In an effort to show that my walk is strong, that my faith is just as strong, that I'm still capable to do what needs doing in daily tasks, to show that we're ok...I've worn myself out and nearly made myself crazy! It's exhausting to care what others think all the time, to take input you didn't ask for with a lovingly attitude. Port and I fully understand that when we put our lives in the blog, on a prayer chain or in the status of our FB, we are in essence opening up the gates...but it's still tough at times. I've cleaned like a maniac, made sure that I excel at whatever...doesn't matter what, just something. I've made insanely long to do lists, worried over every aspect of my life and have come dangerously close to just not talking anymore to just keep it all out.
Then my sweet sister, my dear cousin, my close friend Bridget called today. We don't get much time to talk so we have to make it work when the other calls;) Without my even knowing, I was talking a million miles a minute. It was all coming out. I needed to justify it all...why we chose this route, why we think this, how we feel on this,what someone said about this,what we will do about that, and all with good reasons. I listed off all my chores done, schooling positives for the week, errands run. And then she said something to me that I don't think I will ever forget.
"Nichole, honey, it ain't about the dishes.
It ain't about the floors being clean or the kids being washed, the bills being paid. It's about His grace. Don't you see His grace would still be there if you had done nothing? If the dishes piled to the floor, the floors a nasty mess, dirty babies and unpaid bills...it wouldn't matter. He loves you and would be there right beside you regardless. You don't have to prove to anyone. We don't live according to what others think of us or by how much grace they give us, but rather by how He feels about us, His grace for us."
She's so right. It ain't about the dishes.I'm so thankful for that. I'm so thankful that I can stop working to prove why we will do what we must for our baby, why we consent to this test and that, why we will continue schooling, why we will fight for her but accept His perfect will at the same time.
I've longed to ask some, "Wouldn't you do the same? If the doctors talked to you of horrible diagnosis, tough procedures, if they looked at you and gave you their personal theories that are so hard to hear, if doctor after doctor looked at you and said they couldn't treat her, if a doctor called you before even seeing your child and said not to bother with the appt as there was no way he would know how to help....and then you finally are put in a place with a team of doctors who want to help, who aren't giving up, who are believers, who want to explore every alley that could possibly tell us something based on symptoms shown...wouldn't you do it or would you not because you know better than a doctor?
Tonight I see that it ain't about the dishes. Those who love us, who get us, who want us in their lives will stand by us and love us thru it all. I don't have to prove anymore. The peace I feel in my heart, that peace that passes all understanding is all I need to know that I'm on the right track.
Monday, February 21, 2011
Friday, February 18, 2011
a fog and a path
I am in awe at times. That I can still function and to the level that I do. My fog is still very much here. My heart is still broken but certainly not beyond repair to Him. Babies are washed, laundry kept up, 2-3 hot meals prepared daily, floors clean, time spent with kids, schooling daily,checkbook balanced, errands completed, devotionals completed....this my friends is the evidence that I am more than ever in His presence. When not, these things don't happen. I celebrate every tiny accomplishment by giving Him glory, giving Him praise. God is a god that you can see thru your fog, you can see His hand reaching out for you, you can hear His voice as He instructs you as to what your next step is. It's a choice really. I must choose to walk in Him, to trust in Him, to hear Him, to see Him, to obey Him. I know and I tell Him often that Riley is His. He made her. He gifted her to me but she is His. He will do as He pleases for it is His will, not mine.
With very little, and I mean little, talk time with Port over the last week, since he's been gone really, I've prayed more than ever for direction. What is my next step Lord? What will you have me do? How can I honor you still, feeling as I do? Grant me peace, I pray, so that I may complete my tasks at hand, give my children peace and love.
On Sunday, I was refreshed. I spent the morning at church. I worshiped, prayed, cried, listened...I left feeling much better than when I had gone in. After church, I was blessed with an entire 30 min to talk to my husband! I was able to ask him questions, learn of his feelings, his reasoning....it was truly wonderful. It almost felt that he had been here, for a quick visit.
We decided on Sunday to continue homeschooling our children. Leea is finishing up 1st grade, starting some 2nd grade work and Carson is doing pre-k work. We decided to keep going. It was one of my first questions to my husband. Do we keep going? Do we reevaluate? Do we change plans all together? What do we do? Those that know have been very concerned, including Riley's doctors. While on some days it's ok, bc we have so many that love and support us. We open ourselves up to others thoughts when we put it on our blog and FB updates, prayer chains ect. Other days, it's a bit harder to have something you so believe in, something you've prayed for so long on, worked so hard for, something that is such a part of your life...kinda comes under fire, is questioned.
Truth is, our big kids have spent most of their lives for the last 2 yrs in doctor offices with Riley. They have endured physical separations from us and sacrificed family time when hospital times roll around. Leea can work anywhere from the car, to the dentist, out running errands, in the doctor office, the hospital lobby, a waiting room...you name it. It's not always that way, but some days it is. Most of the time I'm the only one here to get the errands done, to make the appts, to get things done. I have to be creative with her schooling so that we can school while still taking care of business. School is so much more than academics! Let's hope and plan that our kids learn mercy and compassion for the sick, Godliness and flexibility for what the day holds, perseverance during the hard times, responsibility in making good choices for themselves, being humble in all things...and that's just some of what we hope for, some of what we teach. In between the math, phonics, copy work, science projects, world history, there are devotions, scripture memorization and real life happening. Real life. Our life is no where near the norm anymore. Rarely do I have time to talk on the phone, meet for coffee, attend a playdate, catch up with a dear friend. Rarely, and that's ok, it's our life.
Riley's health problems, as never ending as they seem, are teaching me, they are teaching our family of the Christ we have in our hearts, in our lives. Leea asks me often "mommy, why won't Jesus make Riley well? He's the only one who can so why won't He?" Carson's biggest fear for Riley is that she will get more shots. I have to explain to them and to myself that it's up to Jesus to make Riley well. It's really not even about Riley being well. It's about Jesus being glorified. Our Bibles tell us that life isn't about being in good health, wealthy, comfortable. It isn't about us at all. It's about Him, how He is glorified, how He is shown to others! If a doctor who doesn't know Jesus starts to care for Riley, and learns of Jesus from Riley, from our family, then it's worth Riley's health not being good. If we can be a light to someone else in a waiting room who has no hope, perhaps their situation is far worse than ours, then it's worth it all. If we can strengthen someone's faith by pressing on, staying with it, giving Him all praise, honor and glory, than it's worth it. Leea and Carson understand bits and pieces and I pray the rest will come in His perfect time.
I filed our fist letter on intent this week, making Leea a legal homeschooled student here in CO. Now at the age 7, it must be done to continue. We have felt called still not only to continue homeschool but to kick it up a notch. I have met with others who know Leea best and homeschool themselves to discuss it, I have done tons of research and prayed for just the right curriculum for our family, I have learned of ways to school for families who have kids with special needs, I have learned of methods to schooling for the days you must be on the go. I have felt peace, such peace.
Port and I told Him that we would continue if that's what He has for us. He has blessed our schooling by answering prayers I've been praying for 2 yrs, before we even started. He's honored what He put into our hearts to homeschool and continues to give me the time to do it and the drive to give it my all. He has made the homeschooling path more clear that it has ever been before. I have seen my prayers answered right before my eyes this week!
I am so thankful to Him:)
With very little, and I mean little, talk time with Port over the last week, since he's been gone really, I've prayed more than ever for direction. What is my next step Lord? What will you have me do? How can I honor you still, feeling as I do? Grant me peace, I pray, so that I may complete my tasks at hand, give my children peace and love.
On Sunday, I was refreshed. I spent the morning at church. I worshiped, prayed, cried, listened...I left feeling much better than when I had gone in. After church, I was blessed with an entire 30 min to talk to my husband! I was able to ask him questions, learn of his feelings, his reasoning....it was truly wonderful. It almost felt that he had been here, for a quick visit.
We decided on Sunday to continue homeschooling our children. Leea is finishing up 1st grade, starting some 2nd grade work and Carson is doing pre-k work. We decided to keep going. It was one of my first questions to my husband. Do we keep going? Do we reevaluate? Do we change plans all together? What do we do? Those that know have been very concerned, including Riley's doctors. While on some days it's ok, bc we have so many that love and support us. We open ourselves up to others thoughts when we put it on our blog and FB updates, prayer chains ect. Other days, it's a bit harder to have something you so believe in, something you've prayed for so long on, worked so hard for, something that is such a part of your life...kinda comes under fire, is questioned.
Truth is, our big kids have spent most of their lives for the last 2 yrs in doctor offices with Riley. They have endured physical separations from us and sacrificed family time when hospital times roll around. Leea can work anywhere from the car, to the dentist, out running errands, in the doctor office, the hospital lobby, a waiting room...you name it. It's not always that way, but some days it is. Most of the time I'm the only one here to get the errands done, to make the appts, to get things done. I have to be creative with her schooling so that we can school while still taking care of business. School is so much more than academics! Let's hope and plan that our kids learn mercy and compassion for the sick, Godliness and flexibility for what the day holds, perseverance during the hard times, responsibility in making good choices for themselves, being humble in all things...and that's just some of what we hope for, some of what we teach. In between the math, phonics, copy work, science projects, world history, there are devotions, scripture memorization and real life happening. Real life. Our life is no where near the norm anymore. Rarely do I have time to talk on the phone, meet for coffee, attend a playdate, catch up with a dear friend. Rarely, and that's ok, it's our life.
Riley's health problems, as never ending as they seem, are teaching me, they are teaching our family of the Christ we have in our hearts, in our lives. Leea asks me often "mommy, why won't Jesus make Riley well? He's the only one who can so why won't He?" Carson's biggest fear for Riley is that she will get more shots. I have to explain to them and to myself that it's up to Jesus to make Riley well. It's really not even about Riley being well. It's about Jesus being glorified. Our Bibles tell us that life isn't about being in good health, wealthy, comfortable. It isn't about us at all. It's about Him, how He is glorified, how He is shown to others! If a doctor who doesn't know Jesus starts to care for Riley, and learns of Jesus from Riley, from our family, then it's worth Riley's health not being good. If we can be a light to someone else in a waiting room who has no hope, perhaps their situation is far worse than ours, then it's worth it all. If we can strengthen someone's faith by pressing on, staying with it, giving Him all praise, honor and glory, than it's worth it. Leea and Carson understand bits and pieces and I pray the rest will come in His perfect time.
I filed our fist letter on intent this week, making Leea a legal homeschooled student here in CO. Now at the age 7, it must be done to continue. We have felt called still not only to continue homeschool but to kick it up a notch. I have met with others who know Leea best and homeschool themselves to discuss it, I have done tons of research and prayed for just the right curriculum for our family, I have learned of ways to school for families who have kids with special needs, I have learned of methods to schooling for the days you must be on the go. I have felt peace, such peace.
Port and I told Him that we would continue if that's what He has for us. He has blessed our schooling by answering prayers I've been praying for 2 yrs, before we even started. He's honored what He put into our hearts to homeschool and continues to give me the time to do it and the drive to give it my all. He has made the homeschooling path more clear that it has ever been before. I have seen my prayers answered right before my eyes this week!
I am so thankful to Him:)
Sunday, February 13, 2011
Riley's Road
So many people over the last 2 yrs of Riley's life have invested so much into our family by way or prayers, encouragement, love and much more. For that reason, Port and I have decided to update everyone on the biggest upcoming steps in Riley's life. It is now, more than ever that we need prayers.
Thursday I took Riley to Denver for what was to be a check up appt. At the end of the day I was able to spend an entire 2 hours with the doctor. I couldn't believe we would get that much time with her but I would soon find out.
Over the last few weeks Riley has digressed greatly to the way she was before she went into the hospital...not eating, not sleeping, constant crying and fussiness ect.
Thursday a lung function test was done to determine the strength of Riley's lungs. For most children/babies 3 doses of a medicine are given as a breathing treatment and the lungs are then examined. Riley had one diluted dose of medicine and went into respiratory distress, resulting in needing an albuterol treatment. This confirms she has asthma. Her lungs are not as strong as we hoped. During this time she was aspirating into her lungs..proving the doc's theory even more. She has been put back on her asthma meds, a higher dose now and with an inhaler instead of a nebulizer.
Her alkalies heels on both legs remain curved so we are being referred to an orthopedic surgeon to discuss leg braces/ surgery.
The ear tube in her left ear has totally removed itself from the ear drum and will be coming out of her ear any day now. We are being sent back to the ENT for a 3rd set of tubes as her doc doesn't feel she is ready to be without them. She will also have another in depth hearing test done to see if she has hearing loss/damage but she doesn't expect a normal result with one of the tubes out.
We are being referred to a surgeon in Denver to discuss the surgery for the acid reflux, to close the flap. Another reflux med was added today but her doc says they have now done all that can be done with only medicine.
Riley has gained not an ounce since her stay at the the hospital last month so we have been recommended for a feeding tube which could stay in as long as 2 yrs...until Riley can eat, feed herself and get the calories she needs to thrive. She has been under weight for so long, to continue not gaining leads her doc to think we must be more aggressive in her treatment.
She is being set up for genetic testing..looking at the brain and all organ function. Her doc feels all the symptoms, all the health issues could be a genetic/neuro disorder that hasn't been found yet.
While we still wait on the CF test, her docs say they will call as soon as they get the results and are going to start setting up appts asap. Her doc is calling her pediatrician in the morning to get her thoughts on Riley's care, the possible surgeries...
Her doc says I must make a way to get Riley's therapies taken care of here in the Springs but I'm just unsure of how to do that with 2 other kids and homeschooling. Her doc says therapies are crucial now. She says I need to accept and come to terms with a chronically ill baby and start reaching out for help. I refused the classes for families and parents of chronically ill children while at the hospital but I suppose I did myself more harm that good.
I have spent the better part of the last 4 days in tears. Tear, tears and more tears. I have had harsh words spoken, people so kindly sharing their criticism but I understand that they just want to help....they just don't know how.
Our faith is strong, stronger than ever. Our God is in control, He is ever faithful and He made Riley just this way. His word says He will never leave me...that He's ever so close when I am in such grief, when I can't form words to pray to Him, showing me all the more that His presence is all around me. When I can't breath for how my heart hurts, He is right beside me. He will be glorified, He will be seen thru our little girl.
I pray that as we start yet another journey, my focus will be more and more on Him and less on my circumstances, that others will see Him at work in our baby, in our lives, that those who don't know Him will call on Him.
Monday, February 7, 2011
Get Ready!
I'm doing a new bible study for military wives, more specifically those of us preparing for deployment. This spring will be our 3rd, but you never get used to it and I find I'm always needing to learn! More on the study later...I want to share a portion I read last week that has stayed on my mind and heart since then.
"God wants us to stop making excuses. We must prepare to let Him take over. We routinely care for others but don't see our strength from God. Though we may be tempted to do the minimum required to survive, God wants to actively work in us. He wants us to stand up and join Him in the process. To meet Him face-to-face in anticipation of what He wants to teach us during deployment. To look for ways He can strengthen our families. What if we choose to view deployment as an opportunity to grow closer to God and and see him work in us? Would such a mind-set help us better serve our husbands and children? Would it lead to more peace in our hearts and households? I believe the answer is yes!
We must get ready to stand and no longer allow deployments to weigh us down or let our emotions outweigh the peace, grace, and love God wants to give us. If we only ask, He offers a better way to navigate the deployment journey. Your role as a military spouse didn't happen by accident. God called you to the moment. He will see you through it."
Tour of Duty, Preparing our hearts for deployment.
By: Sara Horn
(boldness added by me)
"God wants us to stop making excuses. We must prepare to let Him take over. We routinely care for others but don't see our strength from God. Though we may be tempted to do the minimum required to survive, God wants to actively work in us. He wants us to stand up and join Him in the process. To meet Him face-to-face in anticipation of what He wants to teach us during deployment. To look for ways He can strengthen our families. What if we choose to view deployment as an opportunity to grow closer to God and and see him work in us? Would such a mind-set help us better serve our husbands and children? Would it lead to more peace in our hearts and households? I believe the answer is yes!
We must get ready to stand and no longer allow deployments to weigh us down or let our emotions outweigh the peace, grace, and love God wants to give us. If we only ask, He offers a better way to navigate the deployment journey. Your role as a military spouse didn't happen by accident. God called you to the moment. He will see you through it."
Tour of Duty, Preparing our hearts for deployment.
By: Sara Horn
(boldness added by me)
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