While Jaycee was sick last week, I had time to do a lot of reading. The Girl in the Green Sweater ended up being a quick read for me. (The movie In Darkness is based upon this book.) The story is written by a woman who survived the Holocaust as a child with her family & other individuals by living in the sewer for 14 months. The conditions were...well you have to read the book. But, the attitude of the writer was what impressed me the most. They experienced such disrespect and hatred for their faith. Her description of her attitude towards their experiences years later left me speechless.
As I read the book, I kept imagining how I would have responded in that situation. I can't imagine it nor do I have any experiences to even remotely compare to it. I thought about things I have went through in the past 7 years with Jaycee: the shock of her diagnoses, surgeries, illnesses, feeling uncertain about her future, battles with professionals regarding her care, etc. These experiences have resulted in me struggling with depression, anxiety, social withdrawal, and confusion. I have questioned the purpose of my life and my daughter's life. I have questioned my faith and whether or not my prayers were effective. I have wondered where God was when my child was seriously ill.
So as I read this book and compared her reactions to her situation to my own, I felt so embarrassed. This woman survived unthinkable living conditions and in the end did not become a bitter, angry, or hateful person for what she suffered. I cannot say that about myself.
Looking back on my experiences, it was such a waste of time and energy for me to be so upset about a baby and later a child who has access to great medical and educational assistance in America. I can't believe I allowed myself to get so beat down just because my life and my child's life took an unexpected turn into the world of special needs with pit stops into hospitals. I struggled for years with how to make sense of what was happening to us. Thankfully, I'm in a better place now mentally, emotionally, and spiritually.
But, still it makes me wonder how a sour attitude or bad perspective takes root? How do some people go through something totally horrible but maintain a good attitude?
I don't have all the answers to the questions. I can only challenge myself to live with more gratitude and happiness and to face situations with a can-do attitude. To live with the principle that God loves me and any bad in my life doesn't come from him; therefore I won't blame Him for those bad things. To challenge myself to see good around me even when it's so clouded up that it's hard to see.
Wednesday, July 3, 2013
Thursday, June 27, 2013
Prayer for Lungs
Earlier in the week, I prayed about what I should blog this week. I felt I should share the verses and a prayer I have been saying for my daughter, Jaycee, concerning her lungs. In the past few months, I have focused prayers for her lungs since her asthma and obstructive sleep apnea have really impacted her health. Here are two verses I pray regularly:
As the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living being. Genesis 2:7
The Spirit of God has made me, And the breath of the Almighty gives me life. Job 33:4
Lord, just as you formed Adam and gave him life, breathe into my child. Give her strong breath all night and all day. Keep her lungs open and working perfectly as you intended them to be. God, you are the source of all life and your breath sustains my child. I don't have to fear asthma or sleep apnea because ultimately her breath comes from you. These things are not more powerful than you God. Let my daughter's airway stay open and let her breath come easily. Amen.
It's funny how God lines things up, preparing the way for our lives without us knowing it. I started working on this blog entry just before Jaycee had a severe asthma attack Tuesday night. She went into the "red zone" on her asthma action plan (blue fingers and toes, low oxygen saturation levels). We stabilized her at home before taking her to the hospital. She was in the hospital less than 48 hours, which is the shortest time she's ever had in the hospital for a breathing issue (pneumonia this time).
A hospital trip always does a number on me mentally. Fear tries to invade my mind and doubt tries to creep in. It tells me to give up, not to pray, to worry about Jaycee's health and future, and on and on. As I tried to go to sleep last night in Jaycee's hospital room, my mind started trying to give me a dozen reasons to be afraid when Jaycee goes home with her breathing still not perfect. I often let these fears take over and leave me spiritually immobilized. But I heard God tell me, "Stop. Stay focused. You can't risk being distracted by fear."
I thought about this blog entry I was going to write. It was a confirmation from God to keep praying and pressing no matter what the circumstances around me are. This is me trying to be obedient and staying focused minute by minute and hour by hour.
For more like this, read More Prayers for Lungs.
The Spirit of God has made me, And the breath of the Almighty gives me life. Job 33:4
Lord, just as you formed Adam and gave him life, breathe into my child. Give her strong breath all night and all day. Keep her lungs open and working perfectly as you intended them to be. God, you are the source of all life and your breath sustains my child. I don't have to fear asthma or sleep apnea because ultimately her breath comes from you. These things are not more powerful than you God. Let my daughter's airway stay open and let her breath come easily. Amen.
It's funny how God lines things up, preparing the way for our lives without us knowing it. I started working on this blog entry just before Jaycee had a severe asthma attack Tuesday night. She went into the "red zone" on her asthma action plan (blue fingers and toes, low oxygen saturation levels). We stabilized her at home before taking her to the hospital. She was in the hospital less than 48 hours, which is the shortest time she's ever had in the hospital for a breathing issue (pneumonia this time).
A hospital trip always does a number on me mentally. Fear tries to invade my mind and doubt tries to creep in. It tells me to give up, not to pray, to worry about Jaycee's health and future, and on and on. As I tried to go to sleep last night in Jaycee's hospital room, my mind started trying to give me a dozen reasons to be afraid when Jaycee goes home with her breathing still not perfect. I often let these fears take over and leave me spiritually immobilized. But I heard God tell me, "Stop. Stay focused. You can't risk being distracted by fear."
I thought about this blog entry I was going to write. It was a confirmation from God to keep praying and pressing no matter what the circumstances around me are. This is me trying to be obedient and staying focused minute by minute and hour by hour.
For more like this, read More Prayers for Lungs.
Thursday, June 20, 2013
Ripping up Pictures
My pastor talked about something at church Sunday that I'm still pondering. He talked about the pictures we create about a subject and how that leads us to pray a certain way. He gave the example of revival. Ten different people have 10 different pictures of what revival looks like. Some may think it's when dozens get saved, some view it as happening when big miracles take place, and others will picture revival as long wild services that last hours. He said that people will pray for whatever their vision of revival is instead of praying for what God wants to do. Then people will judge whether or not revival has come based upon those pictures we have. So he went on to talk about how we should rip up some pictures we have in our minds that prevent us from seeing God and praying the right way.
I started thinking about some pictures I have had to mentally rip up over the years. I had to rip these pictures up so I wouldn't be upset and bitter. I had to rip up the picture I had of a healthy baby that I prayed for during my pregnancy. If I hung on to that picture, I'd still be upset. I had to rip up the picture of the house I thought I'd be living in. This may sound really trivial but when we got our house we thought it was our starter house. Yet 10 years later, we are still here with no thoughts of leaving. Jaycee's medical expenses have erased plans for something different. Our house isn't terrible but it's small. Every drawer, corner, and both closets are packed full. I'm not a collector or hoarder but it feels like it in this house! For awhile I got really agitated when I would put laundry away and would have to cram it in the drawers. I just got upset because reality was not matching up with my picture. Somewhere along the way, I ripped that picture up and became content with where I was. I don't have a picture of a different house now. If it happens, it happens; if not, that's fine.
This week I was thinking about the picture I have of Jaycee's health. I pray often for her lungs (asthma and sleep apnea) to be strong and have good breathing. This week God started dealing with me about my picture of her health. I have this fantasy picture that Jaycee's "good" health would mean there's no bi-pap needed for her apnea and there's no more inhalers for her asthma. My picture of a healthy Jaycee hasn't happened yet because she still needs meds and a machine to help her breathe well. There's still oxygen in her room for when she's having an attack. I look around and see she's not "healthy." But God has showed me that my picture is wrong. I'll never be thankful and grateful if that's the picture I've set for her. It's not that I can't prayer for her to be medicine and machine free one day but I can't let that prevent me from seeing what's happening now. Jaycee has had 2 colds this year and it never went to her lungs. That is highly unusual. I can always count on a cold to turn into more than just a cold. She has been hospital free for almost 10 months. That's the longest stretch she's had in 2 years. God is answering my prayer for her lungs to be strong and for her to be healthy. I just couldn't acknowledge God working because my picture wouldn't allow it.
So I encourage you to think about those mental pictures you have and decide if you need to rip them up so you can see God moving in your life.
I started thinking about some pictures I have had to mentally rip up over the years. I had to rip these pictures up so I wouldn't be upset and bitter. I had to rip up the picture I had of a healthy baby that I prayed for during my pregnancy. If I hung on to that picture, I'd still be upset. I had to rip up the picture of the house I thought I'd be living in. This may sound really trivial but when we got our house we thought it was our starter house. Yet 10 years later, we are still here with no thoughts of leaving. Jaycee's medical expenses have erased plans for something different. Our house isn't terrible but it's small. Every drawer, corner, and both closets are packed full. I'm not a collector or hoarder but it feels like it in this house! For awhile I got really agitated when I would put laundry away and would have to cram it in the drawers. I just got upset because reality was not matching up with my picture. Somewhere along the way, I ripped that picture up and became content with where I was. I don't have a picture of a different house now. If it happens, it happens; if not, that's fine.
This week I was thinking about the picture I have of Jaycee's health. I pray often for her lungs (asthma and sleep apnea) to be strong and have good breathing. This week God started dealing with me about my picture of her health. I have this fantasy picture that Jaycee's "good" health would mean there's no bi-pap needed for her apnea and there's no more inhalers for her asthma. My picture of a healthy Jaycee hasn't happened yet because she still needs meds and a machine to help her breathe well. There's still oxygen in her room for when she's having an attack. I look around and see she's not "healthy." But God has showed me that my picture is wrong. I'll never be thankful and grateful if that's the picture I've set for her. It's not that I can't prayer for her to be medicine and machine free one day but I can't let that prevent me from seeing what's happening now. Jaycee has had 2 colds this year and it never went to her lungs. That is highly unusual. I can always count on a cold to turn into more than just a cold. She has been hospital free for almost 10 months. That's the longest stretch she's had in 2 years. God is answering my prayer for her lungs to be strong and for her to be healthy. I just couldn't acknowledge God working because my picture wouldn't allow it.
So I encourage you to think about those mental pictures you have and decide if you need to rip them up so you can see God moving in your life.
Thursday, June 13, 2013
Saying "Dada"
Jaycee never babbled much as a baby. That was the first sign to me that something was wrong with her speech. She did babble "dada" around 10 months. We were so excited at first. But then she stopped and not much happened verbally after that.
She was diagnosed with childhood apraxia of speech when she was 4.5 years old. She wasn't able to speak, couldn't imitate lip or tongue movements, and couldn't imitate most speech sounds by themselves (example: s-s-s-s-s). Childhood apraxia of speech makes it difficult for children/toddlers to move their mouth to produce sounds like you and I do. Children with this desire to talk but they can't. Sometimes, they lose words. They might say a word once and never again. This has happened to Jaycee. She said "dada" a few years ago and then lost the word. It was never an easy word for her to say, so it wasn't surprising to me that she lost it. We have rarely heard it in the past few years.
Jaycee's verbal speech is slow to come. She relies on signs and her communication device to communicate.
Jaycee can say sounds produced by the lips well (m, p, b). That is why she can say "mama," "papa," and "bubba". All other consonant sounds are difficult for her. We frequently ask her to say dad but she signs it. She has given up trying to say it.
But on Sat., we asked her to say dad and she did!!! "Dada," she said. My husband and I looked at each other in disbelief. I immediately had her say it again and again. I wanted her brain and her tongue to remember how she said it. I didn't want her to lose the word. And so far, she hasn't. She's been great!
It's the perfect Father's Day gift to her daddy!!
She was diagnosed with childhood apraxia of speech when she was 4.5 years old. She wasn't able to speak, couldn't imitate lip or tongue movements, and couldn't imitate most speech sounds by themselves (example: s-s-s-s-s). Childhood apraxia of speech makes it difficult for children/toddlers to move their mouth to produce sounds like you and I do. Children with this desire to talk but they can't. Sometimes, they lose words. They might say a word once and never again. This has happened to Jaycee. She said "dada" a few years ago and then lost the word. It was never an easy word for her to say, so it wasn't surprising to me that she lost it. We have rarely heard it in the past few years.
Jaycee's verbal speech is slow to come. She relies on signs and her communication device to communicate.
Jaycee can say sounds produced by the lips well (m, p, b). That is why she can say "mama," "papa," and "bubba". All other consonant sounds are difficult for her. We frequently ask her to say dad but she signs it. She has given up trying to say it.
But on Sat., we asked her to say dad and she did!!! "Dada," she said. My husband and I looked at each other in disbelief. I immediately had her say it again and again. I wanted her brain and her tongue to remember how she said it. I didn't want her to lose the word. And so far, she hasn't. She's been great!
It's the perfect Father's Day gift to her daddy!!
Wednesday, June 5, 2013
The Truth about "Bearing"
In the past 7 years, I don't know how many times I've had well meaning Christians tell me that God never gives us more than we can bear. I have heard it while standing in church asking for prayer. I have heard it in casual conversations. They say it with a smile and attitude of---well if you are struggling, you shouldn't be because God doesn't give you more than you can handle.
Every time, I heard that I wanted to roll my eyes and slap the person. I never did it of course and it's not a very Christian feeling I know. But, it's how I felt! I didn't know how to take that scripture reference and what to do with it.
Come to find out.....The verse reference is actually 1 Corinthians 10:13 and it doesn't really say what people quote. It says, "No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." (NKJV)
As you see, this talks about temptation and not really about trials or burdens. I believe this is one of the most misrepresented scriptures out there. When it's misquoted to try to "help" someone in a crisis, it may have the opposite effect.
Looking at this scripture though, God is the way of escape. Here's how I view most things: Satan comes to kill, steal, & destroy. Jesus gives life more abundantly. (John 10:10) When I'm feeling overwhelmed in a situation, it is the enemy coming against me but God can be there to provide life to the situation.
Every time, I heard that I wanted to roll my eyes and slap the person. I never did it of course and it's not a very Christian feeling I know. But, it's how I felt! I didn't know how to take that scripture reference and what to do with it.
Come to find out.....The verse reference is actually 1 Corinthians 10:13 and it doesn't really say what people quote. It says, "No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." (NKJV)
As you see, this talks about temptation and not really about trials or burdens. I believe this is one of the most misrepresented scriptures out there. When it's misquoted to try to "help" someone in a crisis, it may have the opposite effect.
Looking at this scripture though, God is the way of escape. Here's how I view most things: Satan comes to kill, steal, & destroy. Jesus gives life more abundantly. (John 10:10) When I'm feeling overwhelmed in a situation, it is the enemy coming against me but God can be there to provide life to the situation.
Thursday, May 30, 2013
What Pro-life Should Mean
I'm a firm believer that every baby has a right to life. I know there are many that share this belief too. This is not a post to convert people to become pro-life. This is a post to challenge people who are already pro-life.
When you believe that abortion is wrong, then you believe that every child born with all sorts of medical and developmental challenges should be given a chance at life. I believe this. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Regardless of your thoughts on this subject, let's just talk about what happens after a pro-life decision is made after a prenatal diagnosis. Then what....
Raising children with special needs (or special purpose as I call it) is difficult. Outsiders do not often know how to support these families. When my daughter was born with Down syndrome and a heart defect, I got more "I'm sorry" statements then "congratulations." We had a few people literally cry with sadness while seeing our baby for the first time. The attitude of most Americans is basically-anything outside the realm of typical is considered undesirable.
It's hard to know what to say and do in situations when a disability is involved. But I wonder how many people are pro-life champions but go on to look at babies and people with disabilities with wrong attitudes. I think if we truly believed every life is worth something and is a blessing, we would stop saying things like:
-I'm sorry your baby was born with ________.
-I don't care what gender our baby is as long as it's healthy.
-Maybe you miscarried your baby because something was wrong. You wouldn't want that would you?
-Maybe your miscarriage was actually a good thing in disguise.
Instead we would say things like:
-I know it's going to be hard because your baby was born with ____ but your baby is a gift. I'm here to help you.
-Congratulations on your baby.
-I'm blessed to be pregnant and blessed to have any child.
-I'm sorry you had a miscarriage and your baby's life ended abruptly. How can I help you?
Maybe if people were truly pro-life, they wouldn't stare at people with disabilities. They would teach their children to respect and value all people. They would make an effort to reach out to families who are raising children with disabilities. People in church would be more willing to accommodate children with disabilities even if it's not convenient.
When you believe that abortion is wrong, then you believe that every child born with all sorts of medical and developmental challenges should be given a chance at life. I believe this. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Regardless of your thoughts on this subject, let's just talk about what happens after a pro-life decision is made after a prenatal diagnosis. Then what....
Raising children with special needs (or special purpose as I call it) is difficult. Outsiders do not often know how to support these families. When my daughter was born with Down syndrome and a heart defect, I got more "I'm sorry" statements then "congratulations." We had a few people literally cry with sadness while seeing our baby for the first time. The attitude of most Americans is basically-anything outside the realm of typical is considered undesirable.
It's hard to know what to say and do in situations when a disability is involved. But I wonder how many people are pro-life champions but go on to look at babies and people with disabilities with wrong attitudes. I think if we truly believed every life is worth something and is a blessing, we would stop saying things like:
-I'm sorry your baby was born with ________.
-I don't care what gender our baby is as long as it's healthy.
-Maybe you miscarried your baby because something was wrong. You wouldn't want that would you?
-Maybe your miscarriage was actually a good thing in disguise.
Instead we would say things like:
-I know it's going to be hard because your baby was born with ____ but your baby is a gift. I'm here to help you.
-Congratulations on your baby.
-I'm blessed to be pregnant and blessed to have any child.
-I'm sorry you had a miscarriage and your baby's life ended abruptly. How can I help you?
Maybe if people were truly pro-life, they wouldn't stare at people with disabilities. They would teach their children to respect and value all people. They would make an effort to reach out to families who are raising children with disabilities. People in church would be more willing to accommodate children with disabilities even if it's not convenient.
Thursday, May 23, 2013
Kindergarten Graduate
My little Jaycee has officially finished kindergarten. Flashback to August 2012...I was on the verge of a mental breakdown. My baby girl was getting ready to start a new school with new teachers & I was nervous for her. How do you explain something like that to a child that can't communicate well?
She adjusted well to kindergarten and all the changes. I feel like a fool now for the way I worried. Jaycee made lots of friends at school. As a mom, you appreciate children who can love your special purposed child. When I see a child at school ask Jaycee for a hug, I'm thrilled. Jaycee's school did many things to promote acceptance for the children with special needs and it showed.
Jaycee has made some academic achievements as well. She has learned to count objects to five. She's learned to spell her first name. (Man, I wish I would have spelled her name JC). Jaycee learned dozens of sight words. She started to read simple 4 page books using her communication device. She's learned to say many new words on her device as well. It's been a productive year and she's enjoyed school.
And so, the school year that I was dreading has ended so quickly and my summer with Jaycee began this week. The next few weeks will be spent getting Jaycee adjusted to her new summer routine. I'm sure I'll have lots of things to blog about in the next few months!
She adjusted well to kindergarten and all the changes. I feel like a fool now for the way I worried. Jaycee made lots of friends at school. As a mom, you appreciate children who can love your special purposed child. When I see a child at school ask Jaycee for a hug, I'm thrilled. Jaycee's school did many things to promote acceptance for the children with special needs and it showed.
Jaycee has made some academic achievements as well. She has learned to count objects to five. She's learned to spell her first name. (Man, I wish I would have spelled her name JC). Jaycee learned dozens of sight words. She started to read simple 4 page books using her communication device. She's learned to say many new words on her device as well. It's been a productive year and she's enjoyed school.
And so, the school year that I was dreading has ended so quickly and my summer with Jaycee began this week. The next few weeks will be spent getting Jaycee adjusted to her new summer routine. I'm sure I'll have lots of things to blog about in the next few months!
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