I woke up all excited and motivated to make it a better day. I was ready to write about each day being a new day filled with hope and possibility. I was ready to hop on the happy train of redemption and second chances even from one day to another, convinced that my change in attitude would make all the difference. I brought the girls out to breakfast and excitedly tried to engage them.....not happening.
Emily had a fit! Off to her room she went. I deflated. I thought that I could not bear another day like yesterday. I prayed and fed them separately and calmly.
I told Emily and Abby that before lunch, we had to fix this problem with eating. I wrote out our schedule and showed them how they were throwing it off. I've done this before, and they generally don't care. Today was a new day though (did I say that?). Lunch went perfectly. They ate, it finished in 20 minutes and everyone stayed happy. We danced around the room and celebrated. The girls laughed at us like we were nuts and they ate well all the time.
Dinner went perfect! Again we danced and clapped and tried to show them how much easier it is to cooperate. It seems like such a silly thing to get excited about, but it made a huge difference in my life. Even for just today. When things go well around here, I'm able to catch my breath for a moment. I may wake up tomorrow and have an awful day with them, but I had today and I am thankful for that.
I truly am thankful that each day is filled with opportunities to change how I think, or feel, or respond. I need to know that I am not bound to a bad day, or even a bad moment. I can begin new each day and give my girls that same chance. It may not be a lot to accomplish in a day, but thank you, thank you, Lord for my children being fed, healthy and happy today.
Tuesday, December 29, 2009
Monday, December 28, 2009
Tough Days
Tough day. I hesitate to write this, but it is what it is.
We all just had a really difficult today. Right at this moment I don't feel like I have any amazing biblical principal to bring this bad day back to. It was just that, a bad day. Everyone has those days that make you want to hand in your resignation, but there's no one there to take it. Days that just need to be done and over with.
Emily did not want to eat at all today and she made sure we all knew it. Anytime I brought her near the table, she screamed like she was being killed. Then Abby cried, I will give it to the poor kid though, she calmed right down as soon as the little maniac (aka Emily) left the room. That was more than I did.
In the end, the girls were fed separately today. So, twice the time. It's frustrating to spend days with my girls that are long and drawn out. Days that cause me to question what I'm doing here. Part of me wanted to make Emily stay and eat, because I need them to eat at the same time and because she has to understand that acting that way doesn't get her what she wants. Another part of me wants to do what's absolutely easiest to get through the day.
Now as the day comes to an end I look back and wonder what I could have done to make it work better. Emily and I talked and she understands that she didn't treat others in our house the way she wanted to be treated (one of our most important family principals). She also understands that she had a bad day (she went to time out) and I had a bad day (I needed a time out) that could have been avoided had she made better choices. I wasn't as patient as I sometimes am either. I wanted to get through the day and I was less tolerant of the whining that led to the screaming. Then I wasn't at all tolerant of the screaming.
When Jessica came, the house settled a little, but Em still wouldn't eat with Abby. By lunch, I got half of her food in before and sent her to her room to finish eating before she lost control. By dinner time, Jessica was gone and I didn't even try to feed them together. We had all had enough.
I think my morning was going south anyway. But there was a moment before lunch when I went out to get the mail and saw this beautiful day. Sun shining, perfect 72 degrees. I thought that I should go for run. Just a short one to clear my head. Or maybe take
the kids for a walk, and give us all time to clear our heads. I didn't though. That is the moment I regret now, the moment when I heard that voice of God speaking to my heart saying "get out of this house and see what I made, look at all that's good around you, take in this amazing day". I didn't listen. I came back in the house and resented having a bad day.
These are the days I have to work through. I have to change my perspective. Remind myself that there is purpose in all of this. I did a Beth Moore bible study once and she said that God allows difficult people and difficult situations in our lives to remind us of things in our hearts that still need refining. If everything was always easy, I could pretend I never feel frustrated and angry. I could act like I always respond correctly when I know I don't. God always sees our hearts and knows what we can hide from others, maybe even ourselves. Days like today show me that I am still so very much in need of refining fire.
We all just had a really difficult today. Right at this moment I don't feel like I have any amazing biblical principal to bring this bad day back to. It was just that, a bad day. Everyone has those days that make you want to hand in your resignation, but there's no one there to take it. Days that just need to be done and over with.
Emily did not want to eat at all today and she made sure we all knew it. Anytime I brought her near the table, she screamed like she was being killed. Then Abby cried, I will give it to the poor kid though, she calmed right down as soon as the little maniac (aka Emily) left the room. That was more than I did.
In the end, the girls were fed separately today. So, twice the time. It's frustrating to spend days with my girls that are long and drawn out. Days that cause me to question what I'm doing here. Part of me wanted to make Emily stay and eat, because I need them to eat at the same time and because she has to understand that acting that way doesn't get her what she wants. Another part of me wants to do what's absolutely easiest to get through the day.
Now as the day comes to an end I look back and wonder what I could have done to make it work better. Emily and I talked and she understands that she didn't treat others in our house the way she wanted to be treated (one of our most important family principals). She also understands that she had a bad day (she went to time out) and I had a bad day (I needed a time out) that could have been avoided had she made better choices. I wasn't as patient as I sometimes am either. I wanted to get through the day and I was less tolerant of the whining that led to the screaming. Then I wasn't at all tolerant of the screaming.
When Jessica came, the house settled a little, but Em still wouldn't eat with Abby. By lunch, I got half of her food in before and sent her to her room to finish eating before she lost control. By dinner time, Jessica was gone and I didn't even try to feed them together. We had all had enough.
I think my morning was going south anyway. But there was a moment before lunch when I went out to get the mail and saw this beautiful day. Sun shining, perfect 72 degrees. I thought that I should go for run. Just a short one to clear my head. Or maybe take
the kids for a walk, and give us all time to clear our heads. I didn't though. That is the moment I regret now, the moment when I heard that voice of God speaking to my heart saying "get out of this house and see what I made, look at all that's good around you, take in this amazing day". I didn't listen. I came back in the house and resented having a bad day.
These are the days I have to work through. I have to change my perspective. Remind myself that there is purpose in all of this. I did a Beth Moore bible study once and she said that God allows difficult people and difficult situations in our lives to remind us of things in our hearts that still need refining. If everything was always easy, I could pretend I never feel frustrated and angry. I could act like I always respond correctly when I know I don't. God always sees our hearts and knows what we can hide from others, maybe even ourselves. Days like today show me that I am still so very much in need of refining fire.
Sunday, December 27, 2009
Needy!
I'm about half way through Emily and Abby's 2nd week of school break. Jeff's work schedule has been almost the same as usual, so he hasn't been here very much. I'm a little tired of being so needed. I always hate the way that sounds. Of course your children need you. But they need me!
It's so constant. I wish I could just say, I don't feel like cooking, let’s have pizza tonight. The girls can't chew pizza so I'd have to make something for them to eat anyway, might as well cook.
I'm not going to get whiny, but anyone who knows me , knows that I struggle when I don't have time in my day to regroup. That's what happens when the girls are not in school. They feel it too. They get bored and miss the pace at school. We all get a little edgy. I told Emily this morning--You are going to get back into your routine this week, girly, no more loosey goosey! She started kicking her feet and gave a real loud "yeah". She likes routine. I see it as relaxing to not be so hurried, she sees it as insecurity. Next week, I'll keep her on a schedule and see if that helps us all.
We did have a good Christmas; I love the heart of my girls. They are so sweet. Nana and Papa sent Sarah a necklace. It came in a little velvet pouch. Sarah opened that box and said "I love it Mom, it's the best little pouch I ever saw". It's so Sarah to be happy with right where she is. I'll say it a lot, that little girl has been a healer of my heart. I'm thankful for her.
Abby's been dealing with a cold. Just when I think she's a little better, her temperature goes back up and then she started coughing a lot Christmas day. She really doesn't feel that well. She wants only me. I think I have some sort of defect in that area. I have friends that want to be with their children every second. They love to be so needed. I don't. I want them to be independent. I want them to know I'm here if they do need me, just not all the time.
God is concerned with our every need. He says to bring it all to him. To lay it at his feet. Man, I'm glad I'm not God. I have a hard time understanding the concept of bringing it all to him. I want to, but I don't know how to let go, and then because I don't appreciate that "needy" quality in myself or others, it's hard for me to truly comprehend what He means when he says that.
I lean on him, I rely on him, and I understand that He is our source. I also "handle" it on my own all the time. I bring to him what I can't handle. More often than not, he's got my back. I need to let him drive.
Another lesson Emily and Abby are teaching me. They have to work on my schedule, they have to eat when I feed, sleep when I put them to bed. I think I know what's best for them, so that's how I care for them. They don't have to worry about those things getting done; they know someone is taking care of it. God wants to do this for me, if I would only let him more often. Think how much easier my life would be if I could just get it!
It's so constant. I wish I could just say, I don't feel like cooking, let’s have pizza tonight. The girls can't chew pizza so I'd have to make something for them to eat anyway, might as well cook.
I'm not going to get whiny, but anyone who knows me , knows that I struggle when I don't have time in my day to regroup. That's what happens when the girls are not in school. They feel it too. They get bored and miss the pace at school. We all get a little edgy. I told Emily this morning--You are going to get back into your routine this week, girly, no more loosey goosey! She started kicking her feet and gave a real loud "yeah". She likes routine. I see it as relaxing to not be so hurried, she sees it as insecurity. Next week, I'll keep her on a schedule and see if that helps us all.
We did have a good Christmas; I love the heart of my girls. They are so sweet. Nana and Papa sent Sarah a necklace. It came in a little velvet pouch. Sarah opened that box and said "I love it Mom, it's the best little pouch I ever saw". It's so Sarah to be happy with right where she is. I'll say it a lot, that little girl has been a healer of my heart. I'm thankful for her.
Abby's been dealing with a cold. Just when I think she's a little better, her temperature goes back up and then she started coughing a lot Christmas day. She really doesn't feel that well. She wants only me. I think I have some sort of defect in that area. I have friends that want to be with their children every second. They love to be so needed. I don't. I want them to be independent. I want them to know I'm here if they do need me, just not all the time.
God is concerned with our every need. He says to bring it all to him. To lay it at his feet. Man, I'm glad I'm not God. I have a hard time understanding the concept of bringing it all to him. I want to, but I don't know how to let go, and then because I don't appreciate that "needy" quality in myself or others, it's hard for me to truly comprehend what He means when he says that.
I lean on him, I rely on him, and I understand that He is our source. I also "handle" it on my own all the time. I bring to him what I can't handle. More often than not, he's got my back. I need to let him drive.
Another lesson Emily and Abby are teaching me. They have to work on my schedule, they have to eat when I feed, sleep when I put them to bed. I think I know what's best for them, so that's how I care for them. They don't have to worry about those things getting done; they know someone is taking care of it. God wants to do this for me, if I would only let him more often. Think how much easier my life would be if I could just get it!
Thursday, December 24, 2009
Why I believe
Isaiah 9:6 (about 700 years before the birth of Christ)
"For unto us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."
Luke 2:11-14
"Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
Glory to God in the highest, and on earth peace to men on whom his favor rests."
We may have heard these verses many times and recognized their beauty, but so much more than poetry rests in the story. Centuries before this child's birth came to be, it was prophesied that He would come. With the birth of that one extraordinary baby came a promise that shapes all I believe and rest in daily. The Savior of the world, the son of God came as an infant so that I might live. The fulfillment of this prophesy means my circumstances can not change who I am in him. It can not change who my children are in him.
John 14:19-21
"Before long, the world will not see me anymore, but you will see me. Because I live, you also will live. On that day, you will realize that I am in my Father, and you are in me, and I am in you. Whoever has my commands and obeys them, he is the one who loves me. He who loves me will be loved by my Father, and I too will love him and show myself to him."
I often hear "I don't know how you do it". For me, the question has never really been how I do it, but why. Why would I live in such a consistently demanding situation? Why would I want Emily and Abby to live this way? Why put my family through this? I used to think I did it because I didn't have a choice, but there are always choices.
It may sound simple, but the absolute truth is that I care for these girls everyday, when I'm laughing or my heart is breaking because I believe with every fiber of my being that they will be healed and whole one day. I believe it because that child born 2000 years ago said that my daughters will live with him in eternity with no need of the things in this world. I don't think I could do this if I didn't believe.
Their lives are so hard. Eating is hard for them, sleeping too; their little bodies turn and they can't move them. It's frustrating not being able to speak. It would be horrible to walk through life believing that this was it for them, that their entire destinies rested in those broken bodies.
Everyone deals with painful situations. Whatever one may be suffering through; marital or financial problems, depression, affliction, disease, sorrow can so easily surround us. What God has called from my girls is all they have to offer to him, their wonderful spirits. It is his peace and his light that shines in two girls that have no cause or ability to try to impress the world. When we rest in Him, it is His peace that he leaves with us.
Almost 3000 years ago, words were spoken that promised me a Wonderful Counselor, a Prince of Peace. The God of the universe held me in his arms and gave me his son, who shows himself to me everyday. I can care for these girls, not because I love them (but I do), I don't even think I do this because God allowed (not caused) Cerebral Palsy in our lives and therefore called us to this purpose, I do this because I see their purpose in this. I see that God has called them to this life of great difficulty, and I see His light in the darkness. I feel his presence.
I know that I will see these little girls I hold and carry on earth run in heaven. I will hear their voices that I have never heard speak sing praises to their king. I will watch them sit at the feet of that child given to us so long ago when they have never sat alone here. I will have the joy of seeing them for the first time the way I dreamed them when I first learned they were coming. Friends, if that isn't a reason to wake up each day and keep going, I don't know what is!
If you are reading this and have never experienced that joy, or that deliverance from your circumstances, I pray that you will come to the feet of Jesus today. Your savior waits for you and asks just that you believe that He is the son of God, confess that you have sinned and need his help. He has prepared a place for you, so come home.
I pray you all have a Merry Christmas and remember what this day is about. May you will truly experience His love today!
"For unto us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."
Luke 2:11-14
"Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
Glory to God in the highest, and on earth peace to men on whom his favor rests."
We may have heard these verses many times and recognized their beauty, but so much more than poetry rests in the story. Centuries before this child's birth came to be, it was prophesied that He would come. With the birth of that one extraordinary baby came a promise that shapes all I believe and rest in daily. The Savior of the world, the son of God came as an infant so that I might live. The fulfillment of this prophesy means my circumstances can not change who I am in him. It can not change who my children are in him.
John 14:19-21
"Before long, the world will not see me anymore, but you will see me. Because I live, you also will live. On that day, you will realize that I am in my Father, and you are in me, and I am in you. Whoever has my commands and obeys them, he is the one who loves me. He who loves me will be loved by my Father, and I too will love him and show myself to him."
I often hear "I don't know how you do it". For me, the question has never really been how I do it, but why. Why would I live in such a consistently demanding situation? Why would I want Emily and Abby to live this way? Why put my family through this? I used to think I did it because I didn't have a choice, but there are always choices.
It may sound simple, but the absolute truth is that I care for these girls everyday, when I'm laughing or my heart is breaking because I believe with every fiber of my being that they will be healed and whole one day. I believe it because that child born 2000 years ago said that my daughters will live with him in eternity with no need of the things in this world. I don't think I could do this if I didn't believe.
Their lives are so hard. Eating is hard for them, sleeping too; their little bodies turn and they can't move them. It's frustrating not being able to speak. It would be horrible to walk through life believing that this was it for them, that their entire destinies rested in those broken bodies.
Everyone deals with painful situations. Whatever one may be suffering through; marital or financial problems, depression, affliction, disease, sorrow can so easily surround us. What God has called from my girls is all they have to offer to him, their wonderful spirits. It is his peace and his light that shines in two girls that have no cause or ability to try to impress the world. When we rest in Him, it is His peace that he leaves with us.
Almost 3000 years ago, words were spoken that promised me a Wonderful Counselor, a Prince of Peace. The God of the universe held me in his arms and gave me his son, who shows himself to me everyday. I can care for these girls, not because I love them (but I do), I don't even think I do this because God allowed (not caused) Cerebral Palsy in our lives and therefore called us to this purpose, I do this because I see their purpose in this. I see that God has called them to this life of great difficulty, and I see His light in the darkness. I feel his presence.
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| Abby and Grandma decorating the tree |
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| Hannah and Emily |
I pray you all have a Merry Christmas and remember what this day is about. May you will truly experience His love today!
Monday, December 21, 2009
Circle the Wagons
Four days before Christmas...and as always I have big plans!
The kids are out of school for two weeks! Oh my, I'm nervous. I pray it goes well. Before Christmas I want to make sure the house is nice and neat for the big day. I have to grocery shop, bake cookies, finish with a little last minute shopping, wrap presents, continuously sweep up after this live tree I was so thrilled to get, and finish and mail Christmas cards (cutting it close). It doesn't seem like that much of a list with 4 days to go, but it doesn't take in to account actually taking care of the kids with the daily cooking, cleaning and caring that goes on around here.
In the perfect world that exists in my head, all of this is possible and goes off without a hitch, right up to Christmas morning with all of us gathered around the tree drinking hot chocolate and smiling sweetly.
Why? I ask you why can't all of these people in this house live in my head???
Abby woke up with a cold this morning. Simple sentence, but not at all simple. She coughed a little as she was going to bed last night and I knew instantly that my plans had changed. She has a little fever; 99.6 when she woke up, 100.2 after breakfast 100.8 mid morning. I'm watching my Christmas week slip away as the thermometer goes up.
For most people, it wouldn't be a big deal. It may not be a big deal for me this time either. The problem is I just don't know. I instinctually circle the wagons. I get ready for an all out raid. I move into the mode of "what has to be done?" How am I most prepared for the possibility of this child spending Christmas in the hospital? Presents should be wrapped in case someone else has to put them under the tree. Last minute gifts can wait, I probably have enough already. Straighten the house up and organize it for the possibility of Jeff having to be here alone. Make sure all of my lists are updated for doctors and family. Pack an overnight bag--just in case--and don't forget the cell phone charger.
Take the temp again 101.0. She really doesn't feel like drinking, but she is. I know that I have 6-8 hours if she won't drink while running a fever before she's dehydrated and just wants to sleep. Then we have to go to the hospital. We're not there yet. We may not get there, but I have to get ready.
This is not a fear response. This is experience. This is a result of being stuck in the same clothes for 2 days because I didn't realize how sick my child was or how quickly things can change. I have learned to plan for the unplanned, to stay prepared. I don't enjoy it, but I do appreciate the lesson.
And really, are we not all called to be prepared? The bible teaches us that God prepares a place for us. He doesn't scramble at the last minute in case we come. 1Cor. 2:9 says "no eye has seen, no ear has heard, no mind has conceived what God prepared for those who love him". He asks us to prepare for him also: 1 Peter 1:13 Therefore, prepare your minds for action; be self-controlled; set your hope fully on the grace to be given you when Jesus Christ is revealed.
I know that Abby is sick and that I may need to change what I've planned. I know that everything could be just fine, or that everything can change forever. I love that I also know that as I am circling the wagons for my child, he has done the same for me. He has prepared a place for me and for Abby. He has prepared my heart for a difficult time and for a beautiful time. I have prepared my mind to set my hope fully on his plan, so that NO MATTER WHAT, I will not be shaken.
I cleaned like a maniac this morning, so on the bright side if Abby's fine, that's one thing off my list. I'll work on the rest while she still feels okay.
The kids are out of school for two weeks! Oh my, I'm nervous. I pray it goes well. Before Christmas I want to make sure the house is nice and neat for the big day. I have to grocery shop, bake cookies, finish with a little last minute shopping, wrap presents, continuously sweep up after this live tree I was so thrilled to get, and finish and mail Christmas cards (cutting it close). It doesn't seem like that much of a list with 4 days to go, but it doesn't take in to account actually taking care of the kids with the daily cooking, cleaning and caring that goes on around here.
In the perfect world that exists in my head, all of this is possible and goes off without a hitch, right up to Christmas morning with all of us gathered around the tree drinking hot chocolate and smiling sweetly.
Why? I ask you why can't all of these people in this house live in my head???
Abby woke up with a cold this morning. Simple sentence, but not at all simple. She coughed a little as she was going to bed last night and I knew instantly that my plans had changed. She has a little fever; 99.6 when she woke up, 100.2 after breakfast 100.8 mid morning. I'm watching my Christmas week slip away as the thermometer goes up.
For most people, it wouldn't be a big deal. It may not be a big deal for me this time either. The problem is I just don't know. I instinctually circle the wagons. I get ready for an all out raid. I move into the mode of "what has to be done?" How am I most prepared for the possibility of this child spending Christmas in the hospital? Presents should be wrapped in case someone else has to put them under the tree. Last minute gifts can wait, I probably have enough already. Straighten the house up and organize it for the possibility of Jeff having to be here alone. Make sure all of my lists are updated for doctors and family. Pack an overnight bag--just in case--and don't forget the cell phone charger.
Take the temp again 101.0. She really doesn't feel like drinking, but she is. I know that I have 6-8 hours if she won't drink while running a fever before she's dehydrated and just wants to sleep. Then we have to go to the hospital. We're not there yet. We may not get there, but I have to get ready.
This is not a fear response. This is experience. This is a result of being stuck in the same clothes for 2 days because I didn't realize how sick my child was or how quickly things can change. I have learned to plan for the unplanned, to stay prepared. I don't enjoy it, but I do appreciate the lesson.
And really, are we not all called to be prepared? The bible teaches us that God prepares a place for us. He doesn't scramble at the last minute in case we come. 1Cor. 2:9 says "no eye has seen, no ear has heard, no mind has conceived what God prepared for those who love him". He asks us to prepare for him also: 1 Peter 1:13 Therefore, prepare your minds for action; be self-controlled; set your hope fully on the grace to be given you when Jesus Christ is revealed.
I know that Abby is sick and that I may need to change what I've planned. I know that everything could be just fine, or that everything can change forever. I love that I also know that as I am circling the wagons for my child, he has done the same for me. He has prepared a place for me and for Abby. He has prepared my heart for a difficult time and for a beautiful time. I have prepared my mind to set my hope fully on his plan, so that NO MATTER WHAT, I will not be shaken.
I cleaned like a maniac this morning, so on the bright side if Abby's fine, that's one thing off my list. I'll work on the rest while she still feels okay.
Thursday, December 17, 2009
Cookie Baking
I've been baking Christmas cookies with my girls tonight. We've been working on them most of the afternoon. We wanted to send them in for their teachers tomorrow as a little treat. I've built this up for the girls all week. "Don't forget, we're baking cookies on Thursday". They were excited, I was excited...yeah Christmas!
Until......today came.
I just didn't feel like making cookies. I was tired. I didn't want to make a huge mess in my kitchen. I found myself thinking that their teachers probably didn't like cookies anyway. As I waited for the girls to get home from school, instead of getting all of the ingredients out and being prepared, I sat by the window and tried to think of ways to get out of it. I didn't want to disappoint the girls, but I really did not want to bake cookies today.
Then lucky me! The perfect excuse to not bake cookies: they came home really cranky! They were so fussy. Emily just wanted to lay down for a while, Abby was mad that Hannah had to stay after school for Bible club, and Jessica (my helper) was late. Sarah came skipping happily down the road from the bus stop, like she always does. God knows I needed Sarah in my life, she's so consistent.
I laid Em down, calmed Abby, listened to Sarah chatter about her day, and Jessica came just in time for me to get Hannah. By then, I really, really didn't want to make cookies.
With Hannah back, I began to try to make the girls happy and turn the day around. It seemed like out of nowhere I heard myself saying "you can't be upset now, we have cookies to make". I wanted to slap my hand over my mouth and take it back, but they were instantly quiet. Sarah started jumping up and down and Emily and Abby were smiling. Before I knew it I was pulling out ingredients.
Emily and Abby have this cool little "switch" I plug the stand mixer into and they activate it when they hit a button. When the button is pressed in the mixer goes, when it's released it stops. It gives them some independence when they are helping in the kitchen. We are usually very careful about moving the button out of reach when the mixer's turned on.
Not today. We mixed the wet ingredients first, of course. The dry were about to go in. Sarah lifted the top of the mixer to stir down the sides. At that exact moment, little Miss Abby hit the button. Buttery, sugary cookie goo flew EVERYWHERE! All over my kitchen, my kids, and Jessica. There was a series of gasps as everyone stopped to survey the damage.
In that frozen moment, the confused Grinch saying "what if Christmas, perhaps, means a little bit more" popped in my head and I smiled. Abby broke the silence in the room when she started to giggle. Then she laughed. We all laughed. What else can you possibly do at that moment? Abby was so pleased with herself. We cleaned cookie goo off the fridge, floor, wheelchairs and kids. How silly it was that I hadn't wanted to make cookies.
I smiled at my girls and their homemade cookies and thought about how blessed I am.
Moral of the story: we all have to open our hearts to the joy around us and the moments that can make us laugh. That giant mess could have just proved my point, but we have been through so much and there are so many things in my life that I can't fix, the giant mess is only allowed to be butter and sugar. It made my cranky girl laugh and her cranky mama to get over it.
Now--off to find a way to keep the Christmas spirit in the house while keeping Jeff out of the cookies.
Until......today came.
I just didn't feel like making cookies. I was tired. I didn't want to make a huge mess in my kitchen. I found myself thinking that their teachers probably didn't like cookies anyway. As I waited for the girls to get home from school, instead of getting all of the ingredients out and being prepared, I sat by the window and tried to think of ways to get out of it. I didn't want to disappoint the girls, but I really did not want to bake cookies today.
Then lucky me! The perfect excuse to not bake cookies: they came home really cranky! They were so fussy. Emily just wanted to lay down for a while, Abby was mad that Hannah had to stay after school for Bible club, and Jessica (my helper) was late. Sarah came skipping happily down the road from the bus stop, like she always does. God knows I needed Sarah in my life, she's so consistent.
I laid Em down, calmed Abby, listened to Sarah chatter about her day, and Jessica came just in time for me to get Hannah. By then, I really, really didn't want to make cookies.
With Hannah back, I began to try to make the girls happy and turn the day around. It seemed like out of nowhere I heard myself saying "you can't be upset now, we have cookies to make". I wanted to slap my hand over my mouth and take it back, but they were instantly quiet. Sarah started jumping up and down and Emily and Abby were smiling. Before I knew it I was pulling out ingredients.
Emily and Abby have this cool little "switch" I plug the stand mixer into and they activate it when they hit a button. When the button is pressed in the mixer goes, when it's released it stops. It gives them some independence when they are helping in the kitchen. We are usually very careful about moving the button out of reach when the mixer's turned on.
Not today. We mixed the wet ingredients first, of course. The dry were about to go in. Sarah lifted the top of the mixer to stir down the sides. At that exact moment, little Miss Abby hit the button. Buttery, sugary cookie goo flew EVERYWHERE! All over my kitchen, my kids, and Jessica. There was a series of gasps as everyone stopped to survey the damage.
In that frozen moment, the confused Grinch saying "what if Christmas, perhaps, means a little bit more" popped in my head and I smiled. Abby broke the silence in the room when she started to giggle. Then she laughed. We all laughed. What else can you possibly do at that moment? Abby was so pleased with herself. We cleaned cookie goo off the fridge, floor, wheelchairs and kids. How silly it was that I hadn't wanted to make cookies.
I smiled at my girls and their homemade cookies and thought about how blessed I am.
Moral of the story: we all have to open our hearts to the joy around us and the moments that can make us laugh. That giant mess could have just proved my point, but we have been through so much and there are so many things in my life that I can't fix, the giant mess is only allowed to be butter and sugar. It made my cranky girl laugh and her cranky mama to get over it.
Now--off to find a way to keep the Christmas spirit in the house while keeping Jeff out of the cookies.
Tuesday, December 15, 2009
Lost Normal
It's a busy week for all four of my girls. Christmas parties at school, preparations at home. There is always so much to do and so much I want to get done. I love this time of year! Even in Florida where it's not so cold and doesn't look particularly wintry with the palm trees swaying. I still get excited waiting for Christmas to come.
For many years, this was a difficult time for me. I'd shop for gifts and wonder what Emily and Abby would want. They can't exactly make a list and there are so many things they can't physically do-- shopping was hard! I will tell you right now, I cried many a-tear in the middle of the toy store. I wanted the girls to have a normal, happy holiday. I, like many people couldn't understand how they could really enjoy it without the excitement of getting just what they'd hoped for under the tree or without spending all day playing with your new present. What was Christmas morning if you couldn't tip toe out to the tree to see if Santa had been there? Was it really as much fun without whispering secrets in Santa's ear? I saw it as another thing we gave up having children with disabilities. Another Lost Norm.
You know what? Sometimes losing normal is okay. So much of what I've learned from my girls is that God's idea of normal is usually very different from my own. I don't think there's anything wrong with me wanting Emily and Abby to enjoy Christmas the way others do, but their normal will never be mine. They've never known tip-toeing out to the tree. They never saw a toy in the store and wished for it or told Santa what they wanted. They never wondered if the perfect present was under the tree. They didn't lose those things. I did.
They loved waking up Christmas day and being carried to the living room. Their faces lit up. They LOVED tearing open the paper. I got to put it their little hands and watch their eyes get bigger as the paper tears more and more. We all stop and watch each person open that one gift like it's the only one. I turn to Hannah and Sarah and watch them open their gifts just as slowly and with purpose so their sisters can see. I am overcome with gratitude. We had to learn to stop and really focus on the things the girls could do and not what they couldn't, then we had to slow down and wait for little fingers to open those special gifts.
We are so very blessed because no matter what is in that package, God has taken the time to show us as a family to look past the trees and past my ideas of normal and see that in my own hustle and bustle I would have missed that look in my girls' eyes. I would look at the perfect gift I thought I gave rather than the perfect gift given to me.
It's so easy to spend too much time grieving our losses, especially during the holidays when the idea of "perfect and normal" could easily swallow us whole. As important as having that time to grieve my own loss was, I am so excited that through that process God has shown me to open my heart to his normal. How he must see me the way I see the twins and wish that I could know the joy that He wants me to know. How he wants his little girl to wake up and really see Christmas the way I want my little girls to wake up and see it. Excited. Joyful. Grateful. Loved.
Every year I see more and more what I'm supposed to see because I'm looking up more and more. This is supposed to be real, so I have to say I'm not completely there yet. I still get those twinges of sadness. I still feel loss sometimes. I probably always will, but I will never stay there. I know the way to normal.
Philippians 3:7-11
For many years, this was a difficult time for me. I'd shop for gifts and wonder what Emily and Abby would want. They can't exactly make a list and there are so many things they can't physically do-- shopping was hard! I will tell you right now, I cried many a-tear in the middle of the toy store. I wanted the girls to have a normal, happy holiday. I, like many people couldn't understand how they could really enjoy it without the excitement of getting just what they'd hoped for under the tree or without spending all day playing with your new present. What was Christmas morning if you couldn't tip toe out to the tree to see if Santa had been there? Was it really as much fun without whispering secrets in Santa's ear? I saw it as another thing we gave up having children with disabilities. Another Lost Norm.
You know what? Sometimes losing normal is okay. So much of what I've learned from my girls is that God's idea of normal is usually very different from my own. I don't think there's anything wrong with me wanting Emily and Abby to enjoy Christmas the way others do, but their normal will never be mine. They've never known tip-toeing out to the tree. They never saw a toy in the store and wished for it or told Santa what they wanted. They never wondered if the perfect present was under the tree. They didn't lose those things. I did.
They loved waking up Christmas day and being carried to the living room. Their faces lit up. They LOVED tearing open the paper. I got to put it their little hands and watch their eyes get bigger as the paper tears more and more. We all stop and watch each person open that one gift like it's the only one. I turn to Hannah and Sarah and watch them open their gifts just as slowly and with purpose so their sisters can see. I am overcome with gratitude. We had to learn to stop and really focus on the things the girls could do and not what they couldn't, then we had to slow down and wait for little fingers to open those special gifts.
We are so very blessed because no matter what is in that package, God has taken the time to show us as a family to look past the trees and past my ideas of normal and see that in my own hustle and bustle I would have missed that look in my girls' eyes. I would look at the perfect gift I thought I gave rather than the perfect gift given to me.
It's so easy to spend too much time grieving our losses, especially during the holidays when the idea of "perfect and normal" could easily swallow us whole. As important as having that time to grieve my own loss was, I am so excited that through that process God has shown me to open my heart to his normal. How he must see me the way I see the twins and wish that I could know the joy that He wants me to know. How he wants his little girl to wake up and really see Christmas the way I want my little girls to wake up and see it. Excited. Joyful. Grateful. Loved.
Every year I see more and more what I'm supposed to see because I'm looking up more and more. This is supposed to be real, so I have to say I'm not completely there yet. I still get those twinges of sadness. I still feel loss sometimes. I probably always will, but I will never stay there. I know the way to normal.
Philippians 3:7-11
Saturday, December 12, 2009
weekends
This is going to be hard to explain. Weekends when you have children with disabilities.
Remember when your children were young and they took up every minute of your time? Can you remember sitting back at the end of the day wondering how it passed so quickly? Nothing is really done. You fed, changed, cleaned up and started it all again over and over all day long. Some of you are probably still there. You wonder if there is anything else going on outside in the world. When you had to go somewhere you packed and planned for every possible scenario and dreamed of the day when you could just leave the house quickly and feel pretty sure that what you planned would be successful? Now, imagine nearly 12 years of that.
Life feels limited to me. Anything isn't possible. We always have to have a plan. Then we have plans b, c, and d floating around just in case plan A falls through. We spend weekends doing what we can to keep the girls safe and happy. It takes every minute. Jeff says it feels like we sit around just waiting for them to cry or need something. It's never a very long wait. We try to do normal things, but if the girls aren't cooperative, normal doesn't happen. Even breakfast this morning was a struggle. Abby didn't want us to make pancakes (she didn't want anything else either), Emily was hungry. Abby cried, then Emily cried because Abby did. We separated them, calmed them down, made pancakes to Abby's dismay, fed them and what should have been a 30 minute breakfast took 90. Our schedule is off now. On to plan B.
Where is God in all of that? Where is he when we feel overwhelmed and tired? Does He see me struggling--wanting to do what he has asked me to do, but not understanding why he's taken so long to answer? Over the years I have literally cried out for relief. Let me take care of them, but please, please, please, please, please make them stop crying while I do. Let us enjoy each other. Give us peace in this circumstance. In my mind I wasn't even asking God to change that circumstance anymore, just make it easier.
I wanted to trust that God was taking care of us, but sometimes that was very difficult. In those times, I try very hard to remember the Israelites. They had escaped slavery. God had changed their difficult circumstance. He had provided for all of their needs and yet they still whined and complained. They couldn't recognize the blessing of provision in the midst of their fear of the unknown. They couldn't trust that He was taking care of them.
I didn't want to wander the desert for 40 years while I learned to trust God. Please, please, please, please let me get what you want to show me. Let me recognize my blessings above hardship. More and more trust has become my response over fear; even on days where I can't imagine living like this forever.
Then, a miracle. Like a spring in the desert. Help came. After spending nearly every weekend of our lives with the girls, they were approved for 6 hours / 7days a week of personal care from insurance. A person on the weekends to lighten the load. She started today (after breakfast). The girls were different kids, just having someone else in the house. They were bathed, the house was cleaned, Jeff cleaned out the gutters, dinner is in the oven and no one cried (except me). These may not sound like big things, but they are when they can't get done.
I'm not sure why God chose now to answer this prayer I have prayed for 12 years, but he did. My heart is filled with gratitude and relief. I'm not sure what he is preparing us for, but I know that if I could trust him all of those years without understanding. I will trust whatever he has for me now.
John 1:3-5
Through him all things were made; without him nothing was made that has been made. In him was life, and that life was the light of men. The light shines in the darkness, but the darkness has not understood it.
Remember when your children were young and they took up every minute of your time? Can you remember sitting back at the end of the day wondering how it passed so quickly? Nothing is really done. You fed, changed, cleaned up and started it all again over and over all day long. Some of you are probably still there. You wonder if there is anything else going on outside in the world. When you had to go somewhere you packed and planned for every possible scenario and dreamed of the day when you could just leave the house quickly and feel pretty sure that what you planned would be successful? Now, imagine nearly 12 years of that.
Life feels limited to me. Anything isn't possible. We always have to have a plan. Then we have plans b, c, and d floating around just in case plan A falls through. We spend weekends doing what we can to keep the girls safe and happy. It takes every minute. Jeff says it feels like we sit around just waiting for them to cry or need something. It's never a very long wait. We try to do normal things, but if the girls aren't cooperative, normal doesn't happen. Even breakfast this morning was a struggle. Abby didn't want us to make pancakes (she didn't want anything else either), Emily was hungry. Abby cried, then Emily cried because Abby did. We separated them, calmed them down, made pancakes to Abby's dismay, fed them and what should have been a 30 minute breakfast took 90. Our schedule is off now. On to plan B.
Where is God in all of that? Where is he when we feel overwhelmed and tired? Does He see me struggling--wanting to do what he has asked me to do, but not understanding why he's taken so long to answer? Over the years I have literally cried out for relief. Let me take care of them, but please, please, please, please, please make them stop crying while I do. Let us enjoy each other. Give us peace in this circumstance. In my mind I wasn't even asking God to change that circumstance anymore, just make it easier.
I wanted to trust that God was taking care of us, but sometimes that was very difficult. In those times, I try very hard to remember the Israelites. They had escaped slavery. God had changed their difficult circumstance. He had provided for all of their needs and yet they still whined and complained. They couldn't recognize the blessing of provision in the midst of their fear of the unknown. They couldn't trust that He was taking care of them.
I didn't want to wander the desert for 40 years while I learned to trust God. Please, please, please, please let me get what you want to show me. Let me recognize my blessings above hardship. More and more trust has become my response over fear; even on days where I can't imagine living like this forever.
Then, a miracle. Like a spring in the desert. Help came. After spending nearly every weekend of our lives with the girls, they were approved for 6 hours / 7days a week of personal care from insurance. A person on the weekends to lighten the load. She started today (after breakfast). The girls were different kids, just having someone else in the house. They were bathed, the house was cleaned, Jeff cleaned out the gutters, dinner is in the oven and no one cried (except me). These may not sound like big things, but they are when they can't get done.
I'm not sure why God chose now to answer this prayer I have prayed for 12 years, but he did. My heart is filled with gratitude and relief. I'm not sure what he is preparing us for, but I know that if I could trust him all of those years without understanding. I will trust whatever he has for me now.
John 1:3-5
Through him all things were made; without him nothing was made that has been made. In him was life, and that life was the light of men. The light shines in the darkness, but the darkness has not understood it.
Friday, December 11, 2009
Nervous Nelly
I'm taking Emily for a CT scan today. The doctor wants a look at her brain because she's having headaches. It's not such a big deal, except that she has to be under general anesthesia. I know she'll be fine. But this is when I really have to remind myself that no matter what God is in control. It's scary sending your child off to the care of another. To be helpless in a waiting room and to pray she wakes up.
Everything is always a little different with children with disabilities. Their bodies respond differently to medications. Their lungs are more fragile. Their mothers are just a little more nervous when their babies are wheeled away. I believe she will be wheeled back in, but I'm never sure.
I know none of us are ever really sure, but when you have children with medical problems, the never really sure drifts toward a border of reality sometimes.
So I pray, I'm a bit of a Nervous Nelly--and I let her go.
I should also say that I forgot to figure out how Hannah was going to get to school while I am at the hospital with Emily, so she will be late.... I need a new name.. Remember Rene or Prepared Pat or something that gets everyone where they need to be on time!
Everything is always a little different with children with disabilities. Their bodies respond differently to medications. Their lungs are more fragile. Their mothers are just a little more nervous when their babies are wheeled away. I believe she will be wheeled back in, but I'm never sure.
I know none of us are ever really sure, but when you have children with medical problems, the never really sure drifts toward a border of reality sometimes.
So I pray, I'm a bit of a Nervous Nelly--and I let her go.
I should also say that I forgot to figure out how Hannah was going to get to school while I am at the hospital with Emily, so she will be late.... I need a new name.. Remember Rene or Prepared Pat or something that gets everyone where they need to be on time!
Wednesday, December 9, 2009
Where to begin
Where to begin, where to begin?
What does an inside view of living life with disabled children look like? I think it's hard to know where to begin because the only constant in my life is that everything is subject to change. The world around me moves and I have no control over it. That's tough for a control freak to deal with. I would like to think that I have some ability to move life in the direction I want to see it go. It seems like other people do.
I think my girls wish for some measure of control too, a way to influence their environment. When I feel out of control, I pray knowing that God hears me. It calms me. I encourage Emily and Abby to pray for the same reasons. I tell them that God can hear their words even if I can't. I hope they understand, but it must be hard for them to know how to have a conversation with God when they have never had a conversation with anyone else. I try to imagine what God hears when they talk to him. Do words that can't be spoken on earth shout in heaven? I want them to hear him answer them and to know his presence. I want him to whisper to their hearts that He will never leave or forsake them. I want him to whisper to my heart too.
I believe that imperfect children and imperfect lives are a constant reminder of Gods promises. The promise of eternal life for those who believe. The promise that one day all of the heartache of this world will be forgotten. That they will be healed and whole. That I will be healed and whole. They remind me to pray for my own attitude and responses before I pray for God to change theirs.
Their lives have asked me to bear witness to suffering, to do what I can to change it, and when I can't, to hold their hand. They have asked me without words to speak for them. They have asked me to feed and dress them when they can't. To patiently wait for them to do what they can for themselves. To encourage them when they try. They ask me to believe in them when no one else does. To carry them through, and to walk beside. They have asked me to be Christ-like. They have reminded me of what He did for me.
In my ever changing completely out of control life I do have one choice that is mine. It is the only control I really have and it is a choice that is made day after day. How will I choose to respond? When all of those questions are asked of me, when I am praying to just get through minutes at a time, how will I choose to respond? Not just in my actions, but in my heart and my head.
We all walk this journey of response. It is one I have struggled with. I will be doing so this year with you! Welcome to my crazy life!
Psalm 71:14-16
But as for me, I will always have hope;
I will praise you more and more.
My mouth will tell of your righteousness,
Of your salvation all day long,
Though I know not its measure.
I will come and proclaim your mighty acts, O sovereign Lord;
I will proclaim your righteousness, yours alone.
What does an inside view of living life with disabled children look like? I think it's hard to know where to begin because the only constant in my life is that everything is subject to change. The world around me moves and I have no control over it. That's tough for a control freak to deal with. I would like to think that I have some ability to move life in the direction I want to see it go. It seems like other people do.
I think my girls wish for some measure of control too, a way to influence their environment. When I feel out of control, I pray knowing that God hears me. It calms me. I encourage Emily and Abby to pray for the same reasons. I tell them that God can hear their words even if I can't. I hope they understand, but it must be hard for them to know how to have a conversation with God when they have never had a conversation with anyone else. I try to imagine what God hears when they talk to him. Do words that can't be spoken on earth shout in heaven? I want them to hear him answer them and to know his presence. I want him to whisper to their hearts that He will never leave or forsake them. I want him to whisper to my heart too.
I believe that imperfect children and imperfect lives are a constant reminder of Gods promises. The promise of eternal life for those who believe. The promise that one day all of the heartache of this world will be forgotten. That they will be healed and whole. That I will be healed and whole. They remind me to pray for my own attitude and responses before I pray for God to change theirs.
Their lives have asked me to bear witness to suffering, to do what I can to change it, and when I can't, to hold their hand. They have asked me without words to speak for them. They have asked me to feed and dress them when they can't. To patiently wait for them to do what they can for themselves. To encourage them when they try. They ask me to believe in them when no one else does. To carry them through, and to walk beside. They have asked me to be Christ-like. They have reminded me of what He did for me.
In my ever changing completely out of control life I do have one choice that is mine. It is the only control I really have and it is a choice that is made day after day. How will I choose to respond? When all of those questions are asked of me, when I am praying to just get through minutes at a time, how will I choose to respond? Not just in my actions, but in my heart and my head.
We all walk this journey of response. It is one I have struggled with. I will be doing so this year with you! Welcome to my crazy life!
Psalm 71:14-16
But as for me, I will always have hope;
I will praise you more and more.
My mouth will tell of your righteousness,
Of your salvation all day long,
Though I know not its measure.
I will come and proclaim your mighty acts, O sovereign Lord;
I will proclaim your righteousness, yours alone.
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