One of my greatest struggles through this journey has revolved around the word busy. Not because I am so busy but because of my sinful nature that tries to take control when I hear others talk about being busy. Especially when it relates to being too busy for the things in life that are important. I hear all the time how everyone is busy working, coaching, parenting, socializing, etc. And I get it - I used to have that life too. But I don't anymore - and honestly I thank God for that. My perspective has greatly changed in the last 16 months and Colt has made me such a better person. I have been asked a few times about what I do all day as a stay at home mom. And on a good day I answer with, play with Colt all day and laugh a little as I walk away. But once again I am human. And I do shoulder a lot of stress - as does any normal mother - but mothers that have children with special needs are in a circle of their own. No one can understand their journey - and I thank God for that - but it does sometimes tend to feel like a very long lonely journey. So I am going to provide a little insight into what our daily life is like. Not to receive pity, not to show that I am actually doing something during the day, and not to ask for help. I am only writing this blog for other mothers who are going through similar experiences so they know they are not alone. And for anyone else just to get a little bit of an understanding into why moms and families sometimes have to make the decisions they make and to be supportive and empathetic to their needs.
Before I start, let me assure you that my day is filled with joy, fun, happiness and gratefulness to the Father above. Has this always been the case? Probably not. But every day I am learning on this journey and God is guiding every step. That being said - my days are also filled with anxiety, worrisome thoughts, physical limitations, demanding schedules, and time limitations. These are my personal struggles that I have to battle with every day and pray to God that he helps me take control of. As a mother and wife one of our key duties in life according to the Bible is to maintain peace in our homes (Proverbs 14:1). And this peace is what makes the thriving environments that our precious miracles need and have to have to give them the stepping stones in life they need to fulfill their specific purpose that only they can fill.
Our day begins somewhere between 6-8 am depending on how much (or how little) sleep we got the night before(I will write a blog just on sleeping - or lack there of - one day soon). My husband works 10 hour days and his job is in another county, so he is usually gone for at least 12 hours a day. We have therapy 3-4 times a week, all on different days, and usually at least every 2 weeks we have another appointment, such as a well checkup, etc., scheduled too. We drive to another county twice a week for therapy and to another state for most of his appointments. Last year we drove almost 3900 miles and only began therapy half way through the year. Our drive time takes a huge chunk out of our daily lives. We honestly get very little time as a family of 3 just relaxing and being together. Everyone loves Colt - he's never met a stranger - but this also affects us. We have to be good stewards of our time and the things we choose to do or not do based on his schedule and what is going to benefit him the best each day. To best get my point across I am just going to be very open and vulnerable and share some of the anxious thoughts and efforts (that I have to capture and renew my mind about)(2 Corinthians 10:5,Romans 12:2) that I have or do every. single. day. We don't get a weekend break - therapy, stretching, massaging, etc. must happen every day. Caution! Here is a glimpse into my mind:
What's most important to focus on? Standing, walking, sitting, crawling? Is his body lined up correctly? Fine motor or gross motor? Speech or eating? Should we be using the stander more often? Or should he be walking in his gait trainer more? Does he need more belly time? What about crawling or weight bearing? Should he have his cast on? Do I need to spend more time focusing on his eyes? Should he be wearing his splints for a certain amount of time? Better for him to be barefooted or have his AFOs on? Is he hurting today? Or will today be a good day? Watch for medication side effects and remember seizure protocol - just in case. How do I keep his nap schedule today? Is he getting enough rest? What things should we go do or not do? Is he feeling up to it? Will we hurt someone's feelings? Did I read to him enough? When does he just get to play? Did I feed him enough nutritious food today? Or did we sneak in too much junk? Are they holding him correctly? Or is there a possibility bad habits or patterns are being ingrained in his brain right now? Should I say something? I don't want him to be treated differently. God - have I prayed enough today? Or for the right things? When will there be peace in the middle of the chaos? When do we get to spend time as a family?
And it goes on and on(on top of normal motherly worries). And it's sinful and fearful. Give it to God - we can't do it alone and we were never meant too. He's right beside us the whole way.(Psalm 55:22) Our days are busy enough. But I get to make the choice of whether I am going to focus on anxious thoughts or whether I am going to find the joy in all of the beautiful "busyness" we call life. On this journey I have learned that things really don't have to be on the time crunch our world has set and that we have to slow down and pray for every single decision we make. We may not always make everyone happy with the decisions we make, but as long as we are following God's conviction and doing what's best for our family the rest will fall into place. Our extended family and friends will be supportive and understand that we are doing what we feel is best, so that worry should disappear. Listening to our doctors, therapists, etc. will provide an outlet to eliminate that anxiety by doing the best we can and focusing on the needs our child has. And ultimately believing in the one true healer - Our Heavenly Father.
Sunday, April 23, 2017
NICU Life - Part One
By nature I am a very private person. I always have been. I find no pleasure, satisfaction, or desire to share my life story. Maybe it just didn't have enough importance until now. But that being said, it is very hard for me in general to discuss personal matters, but Colt takes it to an entire different level. As a general rule, we do not discuss Colt's medical information and we will probably continue that because I feel as though it keeps his life from revolving around it and allows him to be a normal kid (and keeps us from reliving it over and over). So when describing our NICU stays I won't necessarily be talking about tons of medical issues (everyone's medical issues are specific to them anyways), but more so about our experience from a mother's perspective - my perspective.
I was in the hospital for 3 1/2 days before Colt was born. My water ruptured prematurely and I was put on magnesium (probably the closest to death I will ever feel here on this earth) to stop my contractions long enough so that I was able to have two steroid shots to develop his lungs. Thank God this worked. When Colt was born he was wailing, which was literally the best noise that I have ever heard in my life. Not being able to hold your baby when they are born is devastating to say the least, but this offered my heart the peace that it needed to get through that time. He was 29 weeks - 11 weeks way too early. So we knew that we would be spending time in the NICU before coming home. But we were not prepared for what laid ahead - no one can be.
The first NICU we were in was the one at our local community hospital. They were phenomenal to say the least. Due to being premature, Colt had to be checked on and fed every 3 hours. Miraculously, Colt has been able to breathe on his own since day one, so he was considered a feed and grow baby. He was inside an incubator almost our entire stay at our home hospital, which meant I was only able to hold him for about an hour a day. The guilt you feel as a mom when you have to leave during times the NICU is closed or to get a few hours rest makes resting almost next to impossible. I spent so much time there that the nurses and doctors ended up becoming a second family to us. Little did we know how much of a blessing they would be to us in the next several weeks. They taught me so much and made me feel comfortable with the equipment and all the monitors that Colt was hooked up too. By the end of our 21 day stay here they had taught us how to hook up Colt's food in his feeding tube, how to unhook him to take him out of the bed to hold and how to hook him back up correctly, and even how to know when the monitor is blaring a false reading. This happens more often than you will care to realize, but this sure gave me a lot of peace when the alarms were blaring and I was able to quickly determine it was incorrect due to something as simple as a sticky pad being hooked to his gown instead of his chest. The NICU staff was so accommodating to me and ended up being our first stepping stone in Colt's journey. I am forever indebted to their graciousness and patience with me and pray blessings on them and their families. We spent some of our most precious moments with Colt's NICU family. We were blessed by God and able to stay in our local hospital that year through Colt's first Christmas and New Year. Being in the hospital for the holidays was hard, but it was still so joyous and we made some of my most favorite memories.
I was discharged 2 days after delivery. I am not going to sugarcoat it. I felt like my heart was being ripped out of my chest and my anxiety was through the roof. It was hard enough being just steps down the hall away from him, but going home made the situation we were in even more real. Then on day 8, I was sitting in the NICU holding Colt with my sister, when I received heart breaking news from the doctor on call that day. My husband had started a new job just a month before Colt's unexpected arrival, so he went back to save some time off for when Colt was able to come home. During the early morning hours they had performed a routine ultra sound on Colt's head. They do this on any child born before 34 weeks. No one expected what was found. Colt ended up being diagnosed with a Grade IV IVH (brain bleed) on the left side of his brain. Helpless, desperate, and broken does not even begin to describe the magnitude of emotions I felt in that moment. Doctors are taught to give the worst case prognosis in any instance, basically to allow people to fully grasp what the total outcome could possibly be, but I was not ready for it that day. I couldn't comprehend it. And the tears flowed. Watching your baby being taken from his mother way too early, struggling to do little things like maintain his body temp, and not even knowing how to drink milk yet was a huge undertaking, but then to get news like this literally stops your life in its tracks. Day 8 is the day we learned that our life would be taking a completely different path. God has been with us every step of the way, but on this day he threw me for another loop and taught me once again how in control he is and how precious our time on this earth truly is. Colt was stable - his bleed was no longer active - which allowed us to stay at our local NICU much longer. They monitored him daily and kept a record of his head size. Once his head began swelling we were moved to a much larger hospital in a big city about an hour from our home. That's where the second part of our journey began...
I was in the hospital for 3 1/2 days before Colt was born. My water ruptured prematurely and I was put on magnesium (probably the closest to death I will ever feel here on this earth) to stop my contractions long enough so that I was able to have two steroid shots to develop his lungs. Thank God this worked. When Colt was born he was wailing, which was literally the best noise that I have ever heard in my life. Not being able to hold your baby when they are born is devastating to say the least, but this offered my heart the peace that it needed to get through that time. He was 29 weeks - 11 weeks way too early. So we knew that we would be spending time in the NICU before coming home. But we were not prepared for what laid ahead - no one can be.
The first NICU we were in was the one at our local community hospital. They were phenomenal to say the least. Due to being premature, Colt had to be checked on and fed every 3 hours. Miraculously, Colt has been able to breathe on his own since day one, so he was considered a feed and grow baby. He was inside an incubator almost our entire stay at our home hospital, which meant I was only able to hold him for about an hour a day. The guilt you feel as a mom when you have to leave during times the NICU is closed or to get a few hours rest makes resting almost next to impossible. I spent so much time there that the nurses and doctors ended up becoming a second family to us. Little did we know how much of a blessing they would be to us in the next several weeks. They taught me so much and made me feel comfortable with the equipment and all the monitors that Colt was hooked up too. By the end of our 21 day stay here they had taught us how to hook up Colt's food in his feeding tube, how to unhook him to take him out of the bed to hold and how to hook him back up correctly, and even how to know when the monitor is blaring a false reading. This happens more often than you will care to realize, but this sure gave me a lot of peace when the alarms were blaring and I was able to quickly determine it was incorrect due to something as simple as a sticky pad being hooked to his gown instead of his chest. The NICU staff was so accommodating to me and ended up being our first stepping stone in Colt's journey. I am forever indebted to their graciousness and patience with me and pray blessings on them and their families. We spent some of our most precious moments with Colt's NICU family. We were blessed by God and able to stay in our local hospital that year through Colt's first Christmas and New Year. Being in the hospital for the holidays was hard, but it was still so joyous and we made some of my most favorite memories.
I was discharged 2 days after delivery. I am not going to sugarcoat it. I felt like my heart was being ripped out of my chest and my anxiety was through the roof. It was hard enough being just steps down the hall away from him, but going home made the situation we were in even more real. Then on day 8, I was sitting in the NICU holding Colt with my sister, when I received heart breaking news from the doctor on call that day. My husband had started a new job just a month before Colt's unexpected arrival, so he went back to save some time off for when Colt was able to come home. During the early morning hours they had performed a routine ultra sound on Colt's head. They do this on any child born before 34 weeks. No one expected what was found. Colt ended up being diagnosed with a Grade IV IVH (brain bleed) on the left side of his brain. Helpless, desperate, and broken does not even begin to describe the magnitude of emotions I felt in that moment. Doctors are taught to give the worst case prognosis in any instance, basically to allow people to fully grasp what the total outcome could possibly be, but I was not ready for it that day. I couldn't comprehend it. And the tears flowed. Watching your baby being taken from his mother way too early, struggling to do little things like maintain his body temp, and not even knowing how to drink milk yet was a huge undertaking, but then to get news like this literally stops your life in its tracks. Day 8 is the day we learned that our life would be taking a completely different path. God has been with us every step of the way, but on this day he threw me for another loop and taught me once again how in control he is and how precious our time on this earth truly is. Colt was stable - his bleed was no longer active - which allowed us to stay at our local NICU much longer. They monitored him daily and kept a record of his head size. Once his head began swelling we were moved to a much larger hospital in a big city about an hour from our home. That's where the second part of our journey began...
Tuesday, April 4, 2017
Sweet Hour Of Prayer
The hymn, Sweet Hour of Prayer, was stuck in my head and kept me up most of the night last night and got me thinking about Easter. This Easter season doesn't necessarily have a different meaning to me, but it does have a more profound impact on me. And I didn't think there could be a better time for me to share my thoughts on this than right in the middle of the season.
But first, back to the hymn. This hymn became a little more special to me not too very long before I was pregnant with Colt. Justin (my husband) and I, along with most of my Dad's family, attended my little home church. My Papa was preaching that day. One of my aunt's had heard through the vine that he would be preaching that day and we actually all surprised him - and we were are so very thankful at the end that we did. He began his sermon by singing the beginning of Sweet Hour of Prayer, then stopped and began reciting a short daily prayer. After this he would again sing another part of the hymn and stop, then go into another short prayer. The entire duration of his sermon continued like this. After the first few prayers, his message started to become very apparent, especially to his family. He began stating the prayers he said to God when he was going through what I would dare to say were the darkest days of his life. His youngest child of six children, his baby daughter, was diagnosed with leukemia in her very early twenties. In his prayers, you could literally feel the anguish, despair, hurt, and longing for healing that he so deeply felt as a father who was helpless in the dire situation his daughter was facing. But you were also overwhelmed by the complete faith, trust and hope he had in our gracious, loving God. And the healing came. And he finished his sermon with prayers overflowing with thankfulness and joy and finishing the hymn, "Sweet hour of prayer! Sweet hour of prayer!." Needless to say there was not a dry eye in the entire congregation that day.
I may be partial - but my Papa's sermon is probably the best sermon I've ever listened to in my life, and I had no clue at the time. Fast forward to Colt's unexpected arrival in December 2015. I was put in a situation that I had absolutely no control over and one that impacted me more than anything ever had in my life. When we learned Colt was coming early, I began praying without ceasing (1 Thessalonians 5:17) mostly because it was absolutely all I could do. And was the absolute best thing I could do. And the days that I couldn't get past the pain to pray verbally, God reassured me he knew the longings of my heart by Romans 8:26, "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." Very early on in our journey with Colt, God showed me that he was in complete control - and that I had to let him be. As a mother, this is not easy. At all. But I had no other choice but to allow my faith and trust in our creator to grow bigger than it had ever been in my life. At least hourly, I had to remind myself that God loved Colt more than I did. And this was not easy to stomach. Of course I had my fights with doubt, times I was mad at God, and days that my heart felt like it was going to stop beating - I am human. But that is exactly why I thank God that Colt is in his hands. The darkest days of our life didn't break us - they made us unbelievably stronger. When you're going through it every minute feels like a lifetime because the unknown is so daunting. But Joshua 1:9 tells us, "Have I not commanded you? Be strong and courageous. Do not be frightened and do no be dismayed, for the Lord your God is with you wherever you go." Along with Isaiah 41:10 and Deuteronomy 31:6. And the power of prayer is beyond anything imaginable. We asked everyone we knew to pray for Colt and to pass it along to other brothers and sisters in Christ. Matthew 18:19 states, "Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven." Colt was literally being prayed for across the United States. And our faithful God answered and he continues to answer. Colt is nothing short of an absolute miracle. Papa's lesson he preached was learned by our family through the miracle we were given... Colt. We should never ignore the Sweet Hour of Prayer.
So what does this have to do with Easter? When I look at Colt and think back on the journey full of miracles, I think of God's indescribable love he has for us and how he saved us by sacrificing his one and only son. I am a sinner saved by nothing else other than the grace of God and by the sacrifice of his precious son, Jesus. And now he has saved my son by his grace and allowed my heart and life to be filled with even more joy. The magnitude of the sacrifice that was made because of MY sins has always been huge - but now I feel even more indebted when I get to look into the precious face of my son. This Easter my heart is full of gratitude, thanksgiving, repentance, and joy. Happy Easter!
But first, back to the hymn. This hymn became a little more special to me not too very long before I was pregnant with Colt. Justin (my husband) and I, along with most of my Dad's family, attended my little home church. My Papa was preaching that day. One of my aunt's had heard through the vine that he would be preaching that day and we actually all surprised him - and we were are so very thankful at the end that we did. He began his sermon by singing the beginning of Sweet Hour of Prayer, then stopped and began reciting a short daily prayer. After this he would again sing another part of the hymn and stop, then go into another short prayer. The entire duration of his sermon continued like this. After the first few prayers, his message started to become very apparent, especially to his family. He began stating the prayers he said to God when he was going through what I would dare to say were the darkest days of his life. His youngest child of six children, his baby daughter, was diagnosed with leukemia in her very early twenties. In his prayers, you could literally feel the anguish, despair, hurt, and longing for healing that he so deeply felt as a father who was helpless in the dire situation his daughter was facing. But you were also overwhelmed by the complete faith, trust and hope he had in our gracious, loving God. And the healing came. And he finished his sermon with prayers overflowing with thankfulness and joy and finishing the hymn, "Sweet hour of prayer! Sweet hour of prayer!." Needless to say there was not a dry eye in the entire congregation that day.
I may be partial - but my Papa's sermon is probably the best sermon I've ever listened to in my life, and I had no clue at the time. Fast forward to Colt's unexpected arrival in December 2015. I was put in a situation that I had absolutely no control over and one that impacted me more than anything ever had in my life. When we learned Colt was coming early, I began praying without ceasing (1 Thessalonians 5:17) mostly because it was absolutely all I could do. And was the absolute best thing I could do. And the days that I couldn't get past the pain to pray verbally, God reassured me he knew the longings of my heart by Romans 8:26, "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." Very early on in our journey with Colt, God showed me that he was in complete control - and that I had to let him be. As a mother, this is not easy. At all. But I had no other choice but to allow my faith and trust in our creator to grow bigger than it had ever been in my life. At least hourly, I had to remind myself that God loved Colt more than I did. And this was not easy to stomach. Of course I had my fights with doubt, times I was mad at God, and days that my heart felt like it was going to stop beating - I am human. But that is exactly why I thank God that Colt is in his hands. The darkest days of our life didn't break us - they made us unbelievably stronger. When you're going through it every minute feels like a lifetime because the unknown is so daunting. But Joshua 1:9 tells us, "Have I not commanded you? Be strong and courageous. Do not be frightened and do no be dismayed, for the Lord your God is with you wherever you go." Along with Isaiah 41:10 and Deuteronomy 31:6. And the power of prayer is beyond anything imaginable. We asked everyone we knew to pray for Colt and to pass it along to other brothers and sisters in Christ. Matthew 18:19 states, "Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven." Colt was literally being prayed for across the United States. And our faithful God answered and he continues to answer. Colt is nothing short of an absolute miracle. Papa's lesson he preached was learned by our family through the miracle we were given... Colt. We should never ignore the Sweet Hour of Prayer.
So what does this have to do with Easter? When I look at Colt and think back on the journey full of miracles, I think of God's indescribable love he has for us and how he saved us by sacrificing his one and only son. I am a sinner saved by nothing else other than the grace of God and by the sacrifice of his precious son, Jesus. And now he has saved my son by his grace and allowed my heart and life to be filled with even more joy. The magnitude of the sacrifice that was made because of MY sins has always been huge - but now I feel even more indebted when I get to look into the precious face of my son. This Easter my heart is full of gratitude, thanksgiving, repentance, and joy. Happy Easter!
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