There is a very wordy song we sing at church. The chorus is simple though. It goes like this: I got the joy. I got the joy. I got the joy. (repeat)
From time to time, Elijah and I will sing this chorus to each other. He will shout happily, "I got the joy!"
We were singing this song this morning while we were waiting for the bus to come. You can't help but smile when you sing this song. Then Elijah asked, "Where is it?"
"Where's what?" I ask.
"Where's the joy? Is it in the toy box?" he innocently asked.
"No, joy is inside you. It means you are really happy," I tried explaining.
There many things in life that try to steal my joy. Right now, Jaycee has been home sick for a few days. There are times that I have felt fearful and overwhelmed. Joy is making only brief appearances. Sometimes, I find myself like Elijah asking "Where is the joy?" It leaves in such a way that it isn't noticed immediately.
But we do have access to joy through Jesus. It is as easy as going to the toy box and picking it up. We can go to the word and read about joy. If fear is blocking my joy, then I'm the one who is allowing it. It shows I'm not trusting God to take care of us and meet our needs. Through God alone can we have confidence in our less than ideal circumstances.
Thank you God for talking to me through a three year old!
Thursday, February 28, 2013
Thursday, February 21, 2013
Picking up and moving forward
I need to post one more time about Jaycee's Nana. She did pass away last week. Nana and Jaycee were best buddies and Jaycee will really miss her. She still looks for her and we are struggling to find ways to explain this to Jaycee. It is hard for any child to understand something like this, especially one with limited communication abilities.
All of this has made me think about many things. One of them being, I need to find more support. Nana was always quick to help or change her work schedule if I was in a pinch. My mom, whom is thankfully still around, is a big help with Jaycee as well. But beyond that, I do not have a long list of people that I can call if I need help. My sister-in-law is good about helping but she has 7 kids of her own. I'd say she's just a little busy.
Some of this problem is my doing. Jaycee's an escape artist, needs help in the bathroom (at age 7), and is nonverbal. I just can't drop her off anywhere. She comes with a list of instructions, medicines, and advisories. Some of those being: keep the doors shut or maybe even locked, don't leave her outside unattended, hand her toilet paper or she'll undo your entire roll, take her to the bathroom on a schedule/she won't tell you if she needs to go, etc. I feel like other people would find her to be too much trouble. I think this was really true a few years ago, but I think she's really fairly easy now. I still have it in my head though that she's a lot of work. The truth is that she's content almost anywhere as long as there is a television. Finding long term support for families that have children with special needs is so difficult and important. So, as time heals and I can think more clearly I will be seeking out that support. I will open myself up and allow other people into our world.
All of this has made me think about many things. One of them being, I need to find more support. Nana was always quick to help or change her work schedule if I was in a pinch. My mom, whom is thankfully still around, is a big help with Jaycee as well. But beyond that, I do not have a long list of people that I can call if I need help. My sister-in-law is good about helping but she has 7 kids of her own. I'd say she's just a little busy.
Some of this problem is my doing. Jaycee's an escape artist, needs help in the bathroom (at age 7), and is nonverbal. I just can't drop her off anywhere. She comes with a list of instructions, medicines, and advisories. Some of those being: keep the doors shut or maybe even locked, don't leave her outside unattended, hand her toilet paper or she'll undo your entire roll, take her to the bathroom on a schedule/she won't tell you if she needs to go, etc. I feel like other people would find her to be too much trouble. I think this was really true a few years ago, but I think she's really fairly easy now. I still have it in my head though that she's a lot of work. The truth is that she's content almost anywhere as long as there is a television. Finding long term support for families that have children with special needs is so difficult and important. So, as time heals and I can think more clearly I will be seeking out that support. I will open myself up and allow other people into our world.
Wednesday, February 13, 2013
This Life
It's amazing how life can change so quickly. Last week, my life seemed so ordinary. Then I get a call that no one wants to receive. Jaycee's nana had a stroke and wasn't given much of a chance to make it. She's still holding on but is close to the end. The last 7 days have been a whirlwind. I have went through shock and disbelief. I've cried until it didn't seem possible to cry anymore. I have had moments when I have "pretended" that everything was normal--my mind couldn't handle this life changing information. I don't want to get into all the details about what I saw and what poor nana went through at age 51. But, I do have a few other things to say....
Life is short. You never know what the future holds. It is really important to make the most of your days and appreciate those around you. It's also important that you know God and are in right standing with Him.
Life is short. You never know what the future holds. It is really important to make the most of your days and appreciate those around you. It's also important that you know God and are in right standing with Him.
Thursday, February 7, 2013
Chasing at a Basketball Game
"AJ is dancing at two games this year at the jr/sr high school. Want to come?"
No!-says my inside voice. It's not that I don't want to watch my niece dance. The problem is that taking Jaycee to a basketball game would be a new experience for her. As you know, new experiences are mentally difficult for me. Jaycee's went to small upwards basketball games but not really official ones with buzzers, cheering fans, and a band. I can think of 1,000 ways this could go so wrong. Ok, maybe just 100 ways. I'm afraid she'll panic or run or flop down. If my husband is with me, it doesn't seem so scary. But, doing it by myself--everything falls on me.
I know this may seem insane thinking to most people. I do believe my thinking is wrong. I shouldn't be afraid or be so quick to think/expect that things will go wrong. When you have had years of bad experiences, you would be like that too.
The first game AJ danced at offered me a good excuse. It was on a Wed. and I serve every Wed. in the preschool room at church.
The next game--I wasn't doing anything. I was actually so bored from my husband working 7 days a week that I would have agreed to go just about anywhere. I decided to be brave and go. If it went bad, I could just leave.
Jaycee actually did really well. She loved climbing up and down the bleachers, which I couldn't stop her from doing. I looked at her when the first buzzer sounded. She didn't even flinch. After watching the cousins run in and out of a door to go buy soda and popcorn, I had my eye on Jaycee. I can anticipate her moves. Sure enough, she made her way down the steps and out that door. The chase was on! I was ready. I mistakenly said, "Jaycee-no!" during the chase which means "run faster" to her. I caught her at the door. One of us was smiling. One chase wasn't bad. That's a normal outing for us. Watching her eat popcorn off the floor was gross but everyone helped me clear it so she would stop.
Finally, halftime arrived and the much anticipated dance was happening. I stood watching the dance. It was cute and my niece, who is about the same age as Jaycee, did great. Then that negative part of my brain activates: Jaycee will never be in something like this. Jaycee doesn't have good coordination like other kids her age. And on and on... I have to shut that negative part down. It likes to rear it's ugly head up sometimes. There's no reason to be sad at a moment like this. Jaycee is Jaycee and I can't focus on the things she can't do. If there was a halftime show for kids running from their parents or flopping down and turning into dead weight, she'd be the best!!! It would be entertaining too!
Shortly after the dance, Jaycee got to where she was getting too far away from me on the bleachers. I like to be within 10-20 feet so I can nab her if she runs off. She was out of my striking distance and wouldn't come back. It was time to go home. We made it almost 3 quarters of a basketball game. I saw the dance. Tonight was a success. Every time I survive a new experience with little incident, it gives me strength for the next one.
No!-says my inside voice. It's not that I don't want to watch my niece dance. The problem is that taking Jaycee to a basketball game would be a new experience for her. As you know, new experiences are mentally difficult for me. Jaycee's went to small upwards basketball games but not really official ones with buzzers, cheering fans, and a band. I can think of 1,000 ways this could go so wrong. Ok, maybe just 100 ways. I'm afraid she'll panic or run or flop down. If my husband is with me, it doesn't seem so scary. But, doing it by myself--everything falls on me.
I know this may seem insane thinking to most people. I do believe my thinking is wrong. I shouldn't be afraid or be so quick to think/expect that things will go wrong. When you have had years of bad experiences, you would be like that too.
The first game AJ danced at offered me a good excuse. It was on a Wed. and I serve every Wed. in the preschool room at church.
The next game--I wasn't doing anything. I was actually so bored from my husband working 7 days a week that I would have agreed to go just about anywhere. I decided to be brave and go. If it went bad, I could just leave.
Jaycee actually did really well. She loved climbing up and down the bleachers, which I couldn't stop her from doing. I looked at her when the first buzzer sounded. She didn't even flinch. After watching the cousins run in and out of a door to go buy soda and popcorn, I had my eye on Jaycee. I can anticipate her moves. Sure enough, she made her way down the steps and out that door. The chase was on! I was ready. I mistakenly said, "Jaycee-no!" during the chase which means "run faster" to her. I caught her at the door. One of us was smiling. One chase wasn't bad. That's a normal outing for us. Watching her eat popcorn off the floor was gross but everyone helped me clear it so she would stop.
Finally, halftime arrived and the much anticipated dance was happening. I stood watching the dance. It was cute and my niece, who is about the same age as Jaycee, did great. Then that negative part of my brain activates: Jaycee will never be in something like this. Jaycee doesn't have good coordination like other kids her age. And on and on... I have to shut that negative part down. It likes to rear it's ugly head up sometimes. There's no reason to be sad at a moment like this. Jaycee is Jaycee and I can't focus on the things she can't do. If there was a halftime show for kids running from their parents or flopping down and turning into dead weight, she'd be the best!!! It would be entertaining too!
Shortly after the dance, Jaycee got to where she was getting too far away from me on the bleachers. I like to be within 10-20 feet so I can nab her if she runs off. She was out of my striking distance and wouldn't come back. It was time to go home. We made it almost 3 quarters of a basketball game. I saw the dance. Tonight was a success. Every time I survive a new experience with little incident, it gives me strength for the next one.
Thursday, January 31, 2013
Speaking Jesus
Growing up as a Christian, I naturally went to church every Sunday. During childhood, we were often encouraged to memorize scripture. This was especially true during vacation bible school. I memorized verses like everyone else but it didn't stick in my memory.
Over time, I heard in church that we are to speak the word. The idea being that you were suppose to speak out the verse that applied to your situation. For example, if you were afraid, you were to literally speak out or pray using the scripture that spoke about not fearing (i.e. 2 Timothy 1:7).
I understood that there is power in the word but I never seemed to fully grasp what speaking it out did for me.
A few weeks ago, I learned something new on this subject at church. If you've grown up in church, you are familiar with John 1:1 (In the beginning was the Word, and the Word was with God, and the Word was God.) This scripture relates back to Jesus. Pastor brought out that when you speak the word out, then you are actually speaking Jesus into your situation because he is the word. I thought that was really neat.
I've been speaking and reading some scriptures over Jaycee again. Her biggest issue in the past couple of years has been her breathing (sleep apnea, asthma). So I found some scriptures on breathing in the Bible. Like this one:
Genesis 1:7 And 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 soul.
These scriptures have given me hope because God is the breath giver and the source of life. If something tries to steal her breath away, it is not as almighty and powerful as God, so it can't win. Speaking this word and speaking Jesus over this situation with Jaycee, has given me hope.
****UPDATE****
If you read my blog about Jaycee starting gymnastics, then let me tell you about week #2. Jaycee was more like "herself." She wondered around and didn't stay where she was suppose to several times. So it didn't go as well as week #1. I'm hopeful for week #3. I need a gymnastics scripture to speak out!
Over time, I heard in church that we are to speak the word. The idea being that you were suppose to speak out the verse that applied to your situation. For example, if you were afraid, you were to literally speak out or pray using the scripture that spoke about not fearing (i.e. 2 Timothy 1:7).
I understood that there is power in the word but I never seemed to fully grasp what speaking it out did for me.
A few weeks ago, I learned something new on this subject at church. If you've grown up in church, you are familiar with John 1:1 (In the beginning was the Word, and the Word was with God, and the Word was God.) This scripture relates back to Jesus. Pastor brought out that when you speak the word out, then you are actually speaking Jesus into your situation because he is the word. I thought that was really neat.
I've been speaking and reading some scriptures over Jaycee again. Her biggest issue in the past couple of years has been her breathing (sleep apnea, asthma). So I found some scriptures on breathing in the Bible. Like this one:
Genesis 1:7 And 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 soul.
These scriptures have given me hope because God is the breath giver and the source of life. If something tries to steal her breath away, it is not as almighty and powerful as God, so it can't win. Speaking this word and speaking Jesus over this situation with Jaycee, has given me hope.
****UPDATE****
If you read my blog about Jaycee starting gymnastics, then let me tell you about week #2. Jaycee was more like "herself." She wondered around and didn't stay where she was suppose to several times. So it didn't go as well as week #1. I'm hopeful for week #3. I need a gymnastics scripture to speak out!
Wednesday, January 23, 2013
Jumping & Courage
The combination of Jaycee's frequent steroid use over the years, asthma, Down syndrome, & love of pasta has resulted in Jaycee being overweight. I don't like it. I wish I could go back 2 years ago when all of this started and make changes. But I can't and here we are. I kept thinking the weight gain would magically stop but it hasn't. It's time to make changes.
On the suggestion of a friend who has a child with Down syndrome, I called about enrolling her in gymnastics. Last week was her first class.
I prayed several times prior to the class. Doing a new experience with Jaycee is always a gamble. It could go really well with her obeying and listening. Or, it could go horribly bad with her flopping down refusing to move or running away. I was nervous about it. I don't like new experiences in general and especially with her. I like to know what is going to happen. I worry about her freaking out and flopping down. I worry that I'll have to wrestle her up and people will stare. I worry too much. I pray to God that He'll help me not to worry about things that haven't happened. I pray for courage. I have so much spiritual work to do... The idea of starting gymnastics frightens me because of how she'll potentially behave. But, she needs exercise and something must be done. Helping my child is the only thing that pushes me forward to do this.
We arrived at class and got signed in. Jaycee spots kids on the trampoline and wants to go immediately. I hold her back since her class hasn't started yet. I'm excited that she is excited. She joins the class and imitates them doing stretches. She can't do everything the other kids are doing but she's trying. She's paying attention and smiling. For the next hour, Jaycee follows the routine of the other children. She only wanders off a few times but does good overall. She jumps on the trampoline with help and is enjoying herself. She's getting some good exercise in and it is going well.
All of my worrying was for nothing. Everything has turned out good. I can't believe how well she paid attention. She is growing up and maturing. I need to mature too. I need to have more courage and faith that these little things will go well. The fear of the unknown stops me from doing new things with her. But I might be missing out on something really special that she will enjoy.
I can't wait to see what she'll do next week! And, I won't worry about it!
On the suggestion of a friend who has a child with Down syndrome, I called about enrolling her in gymnastics. Last week was her first class.
I prayed several times prior to the class. Doing a new experience with Jaycee is always a gamble. It could go really well with her obeying and listening. Or, it could go horribly bad with her flopping down refusing to move or running away. I was nervous about it. I don't like new experiences in general and especially with her. I like to know what is going to happen. I worry about her freaking out and flopping down. I worry that I'll have to wrestle her up and people will stare. I worry too much. I pray to God that He'll help me not to worry about things that haven't happened. I pray for courage. I have so much spiritual work to do... The idea of starting gymnastics frightens me because of how she'll potentially behave. But, she needs exercise and something must be done. Helping my child is the only thing that pushes me forward to do this.
We arrived at class and got signed in. Jaycee spots kids on the trampoline and wants to go immediately. I hold her back since her class hasn't started yet. I'm excited that she is excited. She joins the class and imitates them doing stretches. She can't do everything the other kids are doing but she's trying. She's paying attention and smiling. For the next hour, Jaycee follows the routine of the other children. She only wanders off a few times but does good overall. She jumps on the trampoline with help and is enjoying herself. She's getting some good exercise in and it is going well.
All of my worrying was for nothing. Everything has turned out good. I can't believe how well she paid attention. She is growing up and maturing. I need to mature too. I need to have more courage and faith that these little things will go well. The fear of the unknown stops me from doing new things with her. But I might be missing out on something really special that she will enjoy.
I can't wait to see what she'll do next week! And, I won't worry about it!
Thursday, January 17, 2013
Elijah's Talent
In the past few weeks, Elijah has been demonstrating an amazing talent. He has the uncanny ability to know what Jaycee wants and thinks.
"Jaycee, did you have fun at church?" I ask.
Elijah responds, "No she didn't!! Sissy doesn't like church!"
"How do you know? You aren't even in sissy's class," I reply.
"She doesn't like it!!" he affirms.
Elijah has been voicing opinions for Jaycee on all sorts of topics. From toys she likes or dislikes to protesting bedtime, Elijah gives Jaycee's voice on the subject.
"Sissy wants more to eat," Elijah will say.
"If she wants more, she can tell me on her talker," I tell him.
I think it's really neat how he is attempting to talk for his sister. He's learning Jaycee isn't able to express her opinion. It's a new step in their relationship as brother and sister. Even though Elijah is the little brother, as he matures his role will basically be the older sibling. I see him becoming her protector like many other siblings of kids with special needs. It's a neat process to watch and it is always my hope that he'll grow up to love and respect his sister.
"Jaycee, did you have fun at church?" I ask.
Elijah responds, "No she didn't!! Sissy doesn't like church!"
"How do you know? You aren't even in sissy's class," I reply.
"She doesn't like it!!" he affirms.
Elijah has been voicing opinions for Jaycee on all sorts of topics. From toys she likes or dislikes to protesting bedtime, Elijah gives Jaycee's voice on the subject.
"Sissy wants more to eat," Elijah will say.
"If she wants more, she can tell me on her talker," I tell him.
I think it's really neat how he is attempting to talk for his sister. He's learning Jaycee isn't able to express her opinion. It's a new step in their relationship as brother and sister. Even though Elijah is the little brother, as he matures his role will basically be the older sibling. I see him becoming her protector like many other siblings of kids with special needs. It's a neat process to watch and it is always my hope that he'll grow up to love and respect his sister.
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