I like answers! We live in an age of information. We don't have to wait for any answers, really. We can call people and ask questions. We can search the internet for facts, trivia, opinions, etc...
Especially as a mom I like to have information. Information gives me power.
I am learning that I do not HAVE to have an answer. I don't have to know what is coming next. This is very hard as a "good girl". When I know what is next I can get prepared. Not knowing leaves me exposed, vulnerable. This has been a lesson that my husband and I had to come to terms with very fast.
There really isn't a LOT known about the metabolic disorder our daughter has. Within the initial explanation of her diagnosis we learned there was a limit to the knowledge these experts had. They were kind and compassionate but they knew very little. We also learned that there was not expected path or outcome. GULP! While we know more than we knew then, we are more of an expert on our daughter and not her disorder. We still don't really know what is next.
Even in the world we live in not knowing is ok. It may not be typical but it is ok.
Some days this concept hits me hard in my gut. I struggle. Occasionally I WANT to hide under the covers and make it all go away. I can't. So, I am learning to move on even though I don't know the answer.
As a believer I know that God does know the answers. I have to choose to trust Him. I have to choose to trust Him with our future and the next step in our journey.
Even before our daughter was born my husband and I claimed the verse Jeremiah 29:11 "'For I know the plans I have for you,' declares the Lord."
It seems good and easy, but this is something I struggle with.
Friday, October 4, 2013
Thursday, October 3, 2013
Day 3.... Breathe
The stunned silence that I felt so often in those early days taught me to breathe. Yes, basic, everyday, ordinary, breath. I often had to remind myself that I needed to take a breath. Take a slow breath before I asked hard questions. Breathe when I didn't know what else to do. Breathe when I thought everything was going to overwhelm me. Just breathe. One breath at a time.
I wanted her to breathe too. Just like most parents of newborns I wanted to make sure she was breathing. I had to fight the urge to watch. I had to realize that only God could give her breath. I wanted a promise, a guarantee, a something, that she would continue to breath. There were no promises like that. As I would breathe and wish for her to breathe, God's word often came to mind.
Psalm 150:6 "Let everything that has breath praise the Lord." (NIV)
Yep, there it was, my next instruction. I was suppose to praise the Lord, even when I didn't feel like it. Sometimes I only praised Him with a half heart. Sometimes I could praise Him with facts, truths. Sometimes I really couldn't. After all, I didn't know what was going to happen next. The truth is, I still don't. I do feel as though I can glance a little farther down the road than I ever allowed myself to in those days. I still choose to turn these basic every day breaths into praise because He is still good.
Ok, so how is this a stop on this journey? I have gotten better at just breathing. Even when things are difficult one of my first responses is to just breathe. The amazing thing is when I do breathe, I can often see little gifts God has left along the way. Maybe it is the beauty of a sunrise over the pond across the street. Maybe it is the song on the radio. Maybe it is an opportunity to count the many blessings He has left for me that my stress and concern cause me to forget.
The song "Breathe" by Michael W. Smith is a sweet song that helps me to walk through the idea of taking one breath at a time and turning my breath into praise to the Lord. One breath at a time God is changing me. He is working through me. I may not know exactly where this journey is going to take me but I do know that when I let Him work through me amazing things happen.
I wanted her to breathe too. Just like most parents of newborns I wanted to make sure she was breathing. I had to fight the urge to watch. I had to realize that only God could give her breath. I wanted a promise, a guarantee, a something, that she would continue to breath. There were no promises like that. As I would breathe and wish for her to breathe, God's word often came to mind.
Psalm 150:6 "Let everything that has breath praise the Lord." (NIV)
Yep, there it was, my next instruction. I was suppose to praise the Lord, even when I didn't feel like it. Sometimes I only praised Him with a half heart. Sometimes I could praise Him with facts, truths. Sometimes I really couldn't. After all, I didn't know what was going to happen next. The truth is, I still don't. I do feel as though I can glance a little farther down the road than I ever allowed myself to in those days. I still choose to turn these basic every day breaths into praise because He is still good.
Ok, so how is this a stop on this journey? I have gotten better at just breathing. Even when things are difficult one of my first responses is to just breathe. The amazing thing is when I do breathe, I can often see little gifts God has left along the way. Maybe it is the beauty of a sunrise over the pond across the street. Maybe it is the song on the radio. Maybe it is an opportunity to count the many blessings He has left for me that my stress and concern cause me to forget.
The song "Breathe" by Michael W. Smith is a sweet song that helps me to walk through the idea of taking one breath at a time and turning my breath into praise to the Lord. One breath at a time God is changing me. He is working through me. I may not know exactly where this journey is going to take me but I do know that when I let Him work through me amazing things happen.
Wednesday, October 2, 2013
The Great Adventure....
The 1992 song "The Great Adventure" by Stephen Curtis Chapman has become "our" song. My husband and I had just been married when this song was released. It was an exciting time to start out on OUR Great Adventure together. Even today this is his ring tone on my phone. As young "kids" we could not predict the amazing adventure life would take us on. After all, we were "good kids". We had both been "good kids" growing up. We met in college. We married the summer after I finished college. We are both pretty good at following the rules of life. The idea of adventure sounded exciting.
Ten years later after a few ups and downs and curves of life we thought we had a pretty good idea about "real life". Life wasn't always easy. Choices weren't always easy. Loving the Lord with all our heart wasn't always easy. It was always good. At this point we were getting a pretty good idea about what was ahead. We already had one fabulous daughter and we had another child on the way. I was loving life as a stay at home mom and we had moved into our "dream" home that he had designed for us. We knew we were blessed beyond measure.
August 2002 found us facing "new adventures" that we could not have predicted. The birth of our second daughter was traumatic. After an emergency c-section where things got scary pretty fast we were just beginning to catch our breath when the rest of the puzzle would begin to unfold. At about 36 hours old our new daughter (while our entire family was visiting with us at the hospital) coded. We were immobile. We were stunned. Yet everyone was watching us to know what to do. We could barely breath. The only thing I could think of was that God must have known what was happening and that of course He was still good. It was all I had to hold on to. We waited. God spoke. Our daughter was still alive. The next few days would set the stage that our adventure would take. The truths I held onto during those fuzzy, intense days was that God was good no matter what was going to happen. I also realized that THIS must be why we were blessed with a wonderful family and friend base near us. Apparently we were going to need it.
I guess we all like road maps to help us know where our adventures are going to take us. We want to "plan" our side trips and site seeing excursions. After all, we are a family of "good kids" making "good" choices. Isn't everything suppose to be "good"? I obviously had a lot to learn about what "good" means to God. He is good. I'm so very glad. In those early days I worked very hard to remind myself that God was good. I KNEW it. I didn't always feel it. I'm so glad that His goodness is bigger than my faith.
James 1:17 says "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not changes like shifting shadows."
A stop I continually seem to need to make is to remember that God is good. If the gift is from Him it is good!
Ten years later after a few ups and downs and curves of life we thought we had a pretty good idea about "real life". Life wasn't always easy. Choices weren't always easy. Loving the Lord with all our heart wasn't always easy. It was always good. At this point we were getting a pretty good idea about what was ahead. We already had one fabulous daughter and we had another child on the way. I was loving life as a stay at home mom and we had moved into our "dream" home that he had designed for us. We knew we were blessed beyond measure.
August 2002 found us facing "new adventures" that we could not have predicted. The birth of our second daughter was traumatic. After an emergency c-section where things got scary pretty fast we were just beginning to catch our breath when the rest of the puzzle would begin to unfold. At about 36 hours old our new daughter (while our entire family was visiting with us at the hospital) coded. We were immobile. We were stunned. Yet everyone was watching us to know what to do. We could barely breath. The only thing I could think of was that God must have known what was happening and that of course He was still good. It was all I had to hold on to. We waited. God spoke. Our daughter was still alive. The next few days would set the stage that our adventure would take. The truths I held onto during those fuzzy, intense days was that God was good no matter what was going to happen. I also realized that THIS must be why we were blessed with a wonderful family and friend base near us. Apparently we were going to need it.
I guess we all like road maps to help us know where our adventures are going to take us. We want to "plan" our side trips and site seeing excursions. After all, we are a family of "good kids" making "good" choices. Isn't everything suppose to be "good"? I obviously had a lot to learn about what "good" means to God. He is good. I'm so very glad. In those early days I worked very hard to remind myself that God was good. I KNEW it. I didn't always feel it. I'm so glad that His goodness is bigger than my faith.
James 1:17 says "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not changes like shifting shadows."
A stop I continually seem to need to make is to remember that God is good. If the gift is from Him it is good!
Monday, September 30, 2013
31 Days.....
31 Parts of this Unexpected Journey
For the past 11 years I have been on a rather unexpected journey as a parent. For the next 31 days I am going to take The Neseter's 31 day writing challenge and write about some of my memories, experiences and lessons from these past 11 years.
Saturday, March 23, 2013
Party for our Fairy Godmother
What joy it was to help host a bridal shower for our dear friend and lovingly named "Fairy Godmother". It was just over 8 years ago that God blessed our family with this special friend. I was thinking about what a joy it is for God to use this sweet friendship not only in my life, but the lives of my daughters. Today she was surrounded by Godly women who delighted in this season for our her. I had a few moments today to just sit back and observe. What a treasure Godly friendships are.
There have been times over the past eight years that my friend has seemed so young. There have been times that she has seemed wise beyond her years. Most of the time these days she is just my friend.
I remember looking at that special verse in Titus 2 when I was a young woman and needing to learn from other women around me. I often feel like I am still looking for that woman in my life. I often forget to see who God puts into my life that doesn't look like MY idea of that verse. Today I truly observed that I may have been that Titus 2 women to her when I wasn't even looking. I hope so. I'm thankful that God doesn't always wait until I am ready to be used. He marches on without my permission and creates such beautiful friendship that are marked with his loving care.
Today I am happy to celebrate. Today I am thankful for my friend. Today I am greatful to a loving God who give good gifts.
There have been times over the past eight years that my friend has seemed so young. There have been times that she has seemed wise beyond her years. Most of the time these days she is just my friend.
I remember looking at that special verse in Titus 2 when I was a young woman and needing to learn from other women around me. I often feel like I am still looking for that woman in my life. I often forget to see who God puts into my life that doesn't look like MY idea of that verse. Today I truly observed that I may have been that Titus 2 women to her when I wasn't even looking. I hope so. I'm thankful that God doesn't always wait until I am ready to be used. He marches on without my permission and creates such beautiful friendship that are marked with his loving care.
Today I am happy to celebrate. Today I am thankful for my friend. Today I am greatful to a loving God who give good gifts.
Wednesday, March 6, 2013
Wait and Praise
This morning I woke very early unable to stop the mental "to do" list that was playing over and over in my head. I gave in, got up and began my "to do's". Along the way I started chatting with God.
My heart truly does want to seek Him first. My heart truly LOVES Him! Yet, I continued to start my day and get my things "accomplished".
Along the way this morning the Lord has been here. Present. Really, HERE. As I sat down there were two words from Him in various emails I checked.
The first, "WAIT". To be quite honest I have been faced with this word a lot lately. Wait. It seems like over the past few years I am finding myself in what seems to be an endless season of waiting. To be honest, I'm discouraged. I'm frustrated. I'm tired of waiting. The waiting journey is certainly not new to Godly men and women. Noah waited. Abraham and Sarah waited. Moses waited. And that is just to name a few. Who am I to think that I am better than these saints? God LOVED them. He LOVES me. My job is to wait. I'm not sure I am doing a good job of waiting patiently these days. Today's encouragement is to wait but remember that God hasn't forgotten. He has a plan. He is working the plan. I need to stay focused on my Lord and Savior. I need to find a productive way to wait.
but how...
THEN, the next email I opened reminded me to GIVE PRAISE. This is what I need to remember to do. Give praise continually! "Oh, magnify the Lord!!!!!!" I love this song. It is one that has always stirred my heart. Today I want to intentionally magnify the Lord. I want to see the beautiful things HE has given me. I want to want to give praise. I guess that is a start isn't it?
Lord, hear my heart. Know that I am flawed, and impatient. Allow me to see what You have been doing around me all along. Help me fight the discouragement. Help me to wait safely in YOUR presence.
Friday, November 16, 2012
Thankful for today (and the yesterdays we faced)
Ok, so maybe I didn't get 31 days of writing in during October. No real surprise there. This isn't shocking since things have been particularly busy this fall for our family. Oh, well... move on to now!
Today marks the 2nd day of Alex's current hospital stay (I think we will go home today, yippie for short hospitalizations). This marks the 3rd hospitalization during this calendar year. It also is the first one this year that is truly because she has LCHAD.
As we get closer to Thanksgiving many people are posting things about what they are thankful for. Last night this was what I posted on Facebook:
As I was singing a song about being thankful for "all that He's done and all that He's going to do" I realized that I am truly THANKFUL for ivs. I have kind of a love/hate thing with them as I have watched them give Alex so much pain through all of these years, but in truth I am THANKFUL for ivs. They keep my precious girl safe and give her body what it needs! They are truly the blessings that come from raindrops in my life. What a beautiful tool God has provided to help us take care of Alex.
Today I find myself thinking about some of the toddler and preschool years with Alex in the hospital. I remember wondering if she would grow up and be a "big" kid in the hospital and I wondered what it would be like not to have a crying irratable preschooler fussing and demanding things from a sleep deprived mommy. Some of those days were sooooo loooooong. They seemed endless. They seemed to go by in long foggy moments that threatened to overwhelm me.
I used to wonder if she would ever let me brush her hair while we were here (without throwing a fit). I wondered if we would always paint her toenails while we were here (I often noticed they needed attention while seeing them stick out from the covers). I wondered if we would ever turn off Disney Channel (no offense, it just gets tiring after a while). I wondered if we would always be able to find something fun to make out of each stay like I tried to when she was little.
Today I realize that we didn't just "JUMP" to being a big kid but we have gotten here slowly. I have walked along side my girl each step of this journey. (WOW, that is a privledge isn't it?!?!) Some hospitalizations it seemed like we were so tired that we just couldn't catch our breath. Sometimes we would have so many family and friends visit that we were "enteretained" the entire time. Somehow along the way we learned a bit about how to relax and go with this journey.
Each time we educated nurses about the reasons this seemingly normal girl needed to be in the hospital. Some days she charmed her caregivers and provides bright spots in their busy work days. Some days she needed the boost of friends and family to get past her frustration of missing "important" life events in the life of a child (birthday parties, field trips, special days at school, family holidays). Some days I needed that boost.
ivPolePals have come out of these "in-between" years. God still seems to be doing something with that but I am not exactly certain what it is.
Today I realize that in some ways we have "grown up" in the hospital. Alex can anticipate just about every experience she will face. She recognizes the need to come and asked for me to call the doctor so she could come to the hospital (seriously a first!). Last night, she was more interested in sleeping than watching TV. Today we have had the TV off for a while, we have played a few games, listened to great music and some praise music. Last night we put up glow in the dark stars just to watch them glow for a while.
I KNOW we have arrived and sailed through this experience on the wings of the prayers of so many saints who lift us up. I know that we are walking through this calmly, ordery, and even in a bit of a routine. Sometimes is seems surreal. This IS a major part of my life. I am raising a child to be a woman all while she has a cronic physical condition that changes our families routine and plans. We have choices to make along the way. We choose to accept these interruptions or fight them. We choose to get mad and hold grudges or we choose to recognize that God is holding us in His hand and carrying us through the path He is creating for us. I don't know that I conciously choose to accept God's path but I do know that I am. Slowly. Sometimes with a heavy heart. Sometimes with uncertainty. But as she was little learning to grow up in this I was learning to accept God's plan. I am not sure it is easier, but it does happen in a smoother way than it used to. We are better able to work with what I actually pack for the hospital and don't end up bringing so many things we "need". We are more content. Yes, that may describe it. Maybe I am learning to be content in all circumstances.
Today marks the 2nd day of Alex's current hospital stay (I think we will go home today, yippie for short hospitalizations). This marks the 3rd hospitalization during this calendar year. It also is the first one this year that is truly because she has LCHAD.
As we get closer to Thanksgiving many people are posting things about what they are thankful for. Last night this was what I posted on Facebook:
As I was singing a song about being thankful for "all that He's done and all that He's going to do" I realized that I am truly THANKFUL for ivs. I have kind of a love/hate thing with them as I have watched them give Alex so much pain through all of these years, but in truth I am THANKFUL for ivs. They keep my precious girl safe and give her body what it needs! They are truly the blessings that come from raindrops in my life. What a beautiful tool God has provided to help us take care of Alex.
Today I find myself thinking about some of the toddler and preschool years with Alex in the hospital. I remember wondering if she would grow up and be a "big" kid in the hospital and I wondered what it would be like not to have a crying irratable preschooler fussing and demanding things from a sleep deprived mommy. Some of those days were sooooo loooooong. They seemed endless. They seemed to go by in long foggy moments that threatened to overwhelm me.
I used to wonder if she would ever let me brush her hair while we were here (without throwing a fit). I wondered if we would always paint her toenails while we were here (I often noticed they needed attention while seeing them stick out from the covers). I wondered if we would ever turn off Disney Channel (no offense, it just gets tiring after a while). I wondered if we would always be able to find something fun to make out of each stay like I tried to when she was little.
Today I realize that we didn't just "JUMP" to being a big kid but we have gotten here slowly. I have walked along side my girl each step of this journey. (WOW, that is a privledge isn't it?!?!) Some hospitalizations it seemed like we were so tired that we just couldn't catch our breath. Sometimes we would have so many family and friends visit that we were "enteretained" the entire time. Somehow along the way we learned a bit about how to relax and go with this journey.
Each time we educated nurses about the reasons this seemingly normal girl needed to be in the hospital. Some days she charmed her caregivers and provides bright spots in their busy work days. Some days she needed the boost of friends and family to get past her frustration of missing "important" life events in the life of a child (birthday parties, field trips, special days at school, family holidays). Some days I needed that boost.
ivPolePals have come out of these "in-between" years. God still seems to be doing something with that but I am not exactly certain what it is.
Today I realize that in some ways we have "grown up" in the hospital. Alex can anticipate just about every experience she will face. She recognizes the need to come and asked for me to call the doctor so she could come to the hospital (seriously a first!). Last night, she was more interested in sleeping than watching TV. Today we have had the TV off for a while, we have played a few games, listened to great music and some praise music. Last night we put up glow in the dark stars just to watch them glow for a while.
I KNOW we have arrived and sailed through this experience on the wings of the prayers of so many saints who lift us up. I know that we are walking through this calmly, ordery, and even in a bit of a routine. Sometimes is seems surreal. This IS a major part of my life. I am raising a child to be a woman all while she has a cronic physical condition that changes our families routine and plans. We have choices to make along the way. We choose to accept these interruptions or fight them. We choose to get mad and hold grudges or we choose to recognize that God is holding us in His hand and carrying us through the path He is creating for us. I don't know that I conciously choose to accept God's path but I do know that I am. Slowly. Sometimes with a heavy heart. Sometimes with uncertainty. But as she was little learning to grow up in this I was learning to accept God's plan. I am not sure it is easier, but it does happen in a smoother way than it used to. We are better able to work with what I actually pack for the hospital and don't end up bringing so many things we "need". We are more content. Yes, that may describe it. Maybe I am learning to be content in all circumstances.
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