Today's gift is being a great traveler.
After last night's rain and wind storm (wow!) today's skies were beautiful making it a nice day to travel. Tomorrow my daughter is seeing a new doctor so we had to travel six hours by car today. My daughter, my husband, my dad and me hit the roads this morning, while my mom stayed home with my other two children. Since my parents are very involved in my daughter's care and are with her often, I like for one of them to be with us at her appointments. Nothing like an extra set of hands and ears!
My daughter loves to ride in the car! She would seriously ride all day if she could. I love the fact that she loves to ride in the car as much as she does as it makes traveling so much easier...for all of us. As long as she has her movies, music and some snacks she is all set!
She was perfect today in the car. She was quiet while her daddy was on a couple of work calls and she laughed out loud when we made two wrongs turns! She even took a little nap.
I wish we could drive to all the places we want to travel to with the kids, but unfortunately we can not. But until we travel to all the places in the United States and Canada....we have lots of places to still explore, I will not let it both me. As long as we are together having fun, the "where" doesn't make a difference.
We thank God for watching over us as we traveled today and pray we have an informative appointment tomorrow!
Here is a quote for today...
We wander for distraction, but we travel for fulfillment - Hilaire Belloc
Thursday, January 31, 2013
Wednesday, January 30, 2013
Mommy Day
Today's gift is a mommy day.
I decided to keep my daughter home from school today for two reasons. One is school policy is fever free for 24 hours (she was close to the 24) and the second reason is we are getting ready to leave to take her to see a new doctor tomorrow and I wanted her to have an extra day to rest.
I know there are plenty of people who do not abide by the 24 hour rule for being sick, but I am one who sticks by this rule. Yes, I would love my child to go back to school so I can have my "free time" back, but I also don't want my child being too tired or risk getting someone else sick.
It stinks for my daughter as now she is going to miss a full week of school. But this doctor's appointment is pretty important.
But through all the sickness and being at Mimi and Poppy's house it was nice to have a day at home...with just her.
I love having lazy days! We started by cuddling in bed watching tv....then had breakfast, leisurely...talked....watched a movie....got dressed....packed for our upcoming trip...enjoyed lunch with her brother when he came home from school....and then started to get ready for our daily after school routines.
My favorite part of the day was the all the time we sat next to each other. We shared giggles and exchanged some words...and just looked at each other too. We laughed at the same parts in the movie/show we were watching.
I could tell by her expressions and laughs that she was very happy she was having a mommy day with me. The first big laugh of the morning was one as if she was saying..."I'm skipping school"! When I asked her if she thought it was funny she wasn't at school again, she laughed harder and pulled the covers over her head.
While I would have liked to have been on my routine today, especially since the next two days we will be gone for her doctor appointment, I loved having a day home with her....and one I know she loved too!
Here is a quote for today...
So many of my smiles begin with you - Author Unknown
I decided to keep my daughter home from school today for two reasons. One is school policy is fever free for 24 hours (she was close to the 24) and the second reason is we are getting ready to leave to take her to see a new doctor tomorrow and I wanted her to have an extra day to rest.
I know there are plenty of people who do not abide by the 24 hour rule for being sick, but I am one who sticks by this rule. Yes, I would love my child to go back to school so I can have my "free time" back, but I also don't want my child being too tired or risk getting someone else sick.
It stinks for my daughter as now she is going to miss a full week of school. But this doctor's appointment is pretty important.
But through all the sickness and being at Mimi and Poppy's house it was nice to have a day at home...with just her.
I love having lazy days! We started by cuddling in bed watching tv....then had breakfast, leisurely...talked....watched a movie....got dressed....packed for our upcoming trip...enjoyed lunch with her brother when he came home from school....and then started to get ready for our daily after school routines.
My favorite part of the day was the all the time we sat next to each other. We shared giggles and exchanged some words...and just looked at each other too. We laughed at the same parts in the movie/show we were watching.
I could tell by her expressions and laughs that she was very happy she was having a mommy day with me. The first big laugh of the morning was one as if she was saying..."I'm skipping school"! When I asked her if she thought it was funny she wasn't at school again, she laughed harder and pulled the covers over her head.
While I would have liked to have been on my routine today, especially since the next two days we will be gone for her doctor appointment, I loved having a day home with her....and one I know she loved too!
Here is a quote for today...
So many of my smiles begin with you - Author Unknown
Tuesday, January 29, 2013
Her Room
Today's gift is her room.
How many of you can't wait to crawl into your own bed after you have been gone from it...like being on vacation? I know when I come back from being away from home one of the first things I think about it the good night's sleep I am going to have...in...my...own...bed. My two youngest children always run straight to their rooms, as they have missed "their" space.
As you know from last night's post my daughter with Rett Syndrome is not feeling her best and was at my parents house. She came home today....and it was so good to see her!!! I really missed seeing her beautiful face, hearing all those "mommy's" and getting all my kisses.
Tonight when we went upstairs to start our bedtime routines (which usually start in our bedroom) and when we got into our master bathroom to get the kids toothbrushes, we noticed my daughter was not in the room. I started calling her name as I walked down the hall. I could hear her humming as I was approaching her room.
This is what I saw!
How many of you can't wait to crawl into your own bed after you have been gone from it...like being on vacation? I know when I come back from being away from home one of the first things I think about it the good night's sleep I am going to have...in...my...own...bed. My two youngest children always run straight to their rooms, as they have missed "their" space.
As you know from last night's post my daughter with Rett Syndrome is not feeling her best and was at my parents house. She came home today....and it was so good to see her!!! I really missed seeing her beautiful face, hearing all those "mommy's" and getting all my kisses.
Tonight when we went upstairs to start our bedtime routines (which usually start in our bedroom) and when we got into our master bathroom to get the kids toothbrushes, we noticed my daughter was not in the room. I started calling her name as I walked down the hall. I could hear her humming as I was approaching her room.
This is what I saw!
She was sitting on her bed looking at her books!!! Her "humming" was her reading!!!
I think it is safe to say, just like my other two children miss their rooms, she missed her's too!
Here is a quote for tonight....
There is no place like home- Dorothy
Monday, January 28, 2013
Mimi and Poppy Time...extended
Today's gift is Mimi and Poppy time...extended.
My daughter spent the weekend with her Mimi and Poppy this weekend. This allowed for me to have the one on one time with my other daughter at her girl scout overnight and for my husband to have one on one time with our son.
We are very lucky my parents ( aka Mimi and Poppy), offer to take the kids and can help with them to allow us to have a break from the daily challenges and constant care of having a child with special needs. You have no idea how rejuvenated you get from a break...your batteries get recharged and you are ready for another 10,000 miles!
We are equally as lucky that our daughter loves her one on one time with Mimi and Poppy. She loves being the center of attention when she is with them and they treat her like a princess!
Our daughter's visit with Mimi and Poppy has been filled with lots of extra cuddles as she got sick the first night there! I felt so bad for her...but I know she is in the second best hands (after ours of course!). I also know how good they will care for her when she doesn't feel well, not only because I see the care when she is well, but I remember the care I got when I was little and sick (and when I get sick today....they still take care of me and the kids).
Even though I wasn't able to be with her while she was sick, I still talked to her and thanks to FaceTime was able to see her! I think this made her feel better too!
Mimi and Poppy are so caring they offered to keep her one more night as she still had a fever this afternoon. One more day and night to give her some quiet, one on one time to get better. It probably was the best decision seeing as I came home with a very tired 8 year old who became crabbier as the day got later. I think my mom knew (as mother's always do) that this was going to be one of those nights.
Thanks to an extended time at Mimi and Poppy's, I am also able to get some extra sleep I lost from the overnight with the girl scouts and be extra rejuvenated for my daughter tomorrow. While I miss her to pieces, I know she is receiving lots of love!
Here is a quote for today....
The only thing better than having you for my parents, is my children having you for grandparents- Author Unknown
My daughter spent the weekend with her Mimi and Poppy this weekend. This allowed for me to have the one on one time with my other daughter at her girl scout overnight and for my husband to have one on one time with our son.
We are very lucky my parents ( aka Mimi and Poppy), offer to take the kids and can help with them to allow us to have a break from the daily challenges and constant care of having a child with special needs. You have no idea how rejuvenated you get from a break...your batteries get recharged and you are ready for another 10,000 miles!
We are equally as lucky that our daughter loves her one on one time with Mimi and Poppy. She loves being the center of attention when she is with them and they treat her like a princess!
Our daughter's visit with Mimi and Poppy has been filled with lots of extra cuddles as she got sick the first night there! I felt so bad for her...but I know she is in the second best hands (after ours of course!). I also know how good they will care for her when she doesn't feel well, not only because I see the care when she is well, but I remember the care I got when I was little and sick (and when I get sick today....they still take care of me and the kids).
Even though I wasn't able to be with her while she was sick, I still talked to her and thanks to FaceTime was able to see her! I think this made her feel better too!
Mimi and Poppy are so caring they offered to keep her one more night as she still had a fever this afternoon. One more day and night to give her some quiet, one on one time to get better. It probably was the best decision seeing as I came home with a very tired 8 year old who became crabbier as the day got later. I think my mom knew (as mother's always do) that this was going to be one of those nights.
Thanks to an extended time at Mimi and Poppy's, I am also able to get some extra sleep I lost from the overnight with the girl scouts and be extra rejuvenated for my daughter tomorrow. While I miss her to pieces, I know she is receiving lots of love!
Here is a quote for today....
The only thing better than having you for my parents, is my children having you for grandparents- Author Unknown
Sunday, January 27, 2013
The Little Things #6
Today's gift is the little things #6.
Later this afternoon I am going with my middle daughter, part of her brownie troop and probably a good number of other girl scouts to an indoor water park for the day.
While most of the other parents are looking forward to spending time with their daughters, I think the experience with my daughter is what I am looking forward to the most ( of course with the experience comes spending time together too!).
Due to the fact my oldest daughter has Rett Syndrome, everything we do is a different experience from most. While yes, I can take my daughter to the same water park her sister is going to, the experience would be different.
My middle daughter has been wired all morning about today. She has been looking at the website planning every second of her visit. This is something my daughter with special needs can not do.
My middle daughter will be able to run around the water park with her friends riding one ride after the other....with no help from anyone else. This is something my daughter with special needs can not do.
My middle daughter will be able to not have me right by her side every second of our visit to the park. This is something my daughter with special needs can not do.
My middle daughter will be able to sit with her friends at their own table for meals, order for herself and feed herself...with no assistance from me. This is something my daughter with special needs can not do.
My middle daughter will be able to take a shower and get dressed on her own. This is something my daughter with special needs can not do.
My middle daughter will be able to put herself to bed, on her own, when she is given the go ahead it's time for bed. This is something my daughter with special needs can not do.
You see the whole experience is something I am really looking forward to as it isn't something I or our family experience all the time. My daughter with special needs makes me appreciate little things like these experiences. I only wish and pray daily my daughter with Rett Syndrome can enjoy "typical" experiences like her "typical" peers one day...with no modifications or special circumstances. I pray one day she can run and play with her peers and instead of being by her side, I can be watching her from a distance having the time of her life.
Here is a quote for today..
Never get tired of doing little things for others. For sometimes those little things occupy the biggest part of their heart - Ida Azhair
Later this afternoon I am going with my middle daughter, part of her brownie troop and probably a good number of other girl scouts to an indoor water park for the day.
While most of the other parents are looking forward to spending time with their daughters, I think the experience with my daughter is what I am looking forward to the most ( of course with the experience comes spending time together too!).
Due to the fact my oldest daughter has Rett Syndrome, everything we do is a different experience from most. While yes, I can take my daughter to the same water park her sister is going to, the experience would be different.
My middle daughter has been wired all morning about today. She has been looking at the website planning every second of her visit. This is something my daughter with special needs can not do.
My middle daughter will be able to run around the water park with her friends riding one ride after the other....with no help from anyone else. This is something my daughter with special needs can not do.
My middle daughter will be able to not have me right by her side every second of our visit to the park. This is something my daughter with special needs can not do.
My middle daughter will be able to sit with her friends at their own table for meals, order for herself and feed herself...with no assistance from me. This is something my daughter with special needs can not do.
My middle daughter will be able to take a shower and get dressed on her own. This is something my daughter with special needs can not do.
My middle daughter will be able to put herself to bed, on her own, when she is given the go ahead it's time for bed. This is something my daughter with special needs can not do.
You see the whole experience is something I am really looking forward to as it isn't something I or our family experience all the time. My daughter with special needs makes me appreciate little things like these experiences. I only wish and pray daily my daughter with Rett Syndrome can enjoy "typical" experiences like her "typical" peers one day...with no modifications or special circumstances. I pray one day she can run and play with her peers and instead of being by her side, I can be watching her from a distance having the time of her life.
Here is a quote for today..
Never get tired of doing little things for others. For sometimes those little things occupy the biggest part of their heart - Ida Azhair
Saturday, January 26, 2013
Recognition
Today's gift is recognition.
Have you ever thought what it might be like to be in pain or not feel well, but you could not communicate this to anyone....verbally? I haven't imagined this myself..until I had a daughter who is nonverbal.
I have had a history of stomach pains which rears its ugly head sporadically and when it does I often think about my daughter and what if she was having horrific pains like these one night. I would never truly know and we would think she was upset and having a behavior. When I get these "stomach pains" I act out in a behavior....as the pain is unbearable....worse than contractions!
The difference is, when I am in pain I can verbally explain what hurts and you can help me if help is needed. When she is in pain...we have no idea or need to play the guessing game.
As you may know from previous posts, I am in the middle (to near end) of my training for the Disney Princess Half Marathon and I have to be honest my head is not in the game like it was last year. I do not know why, but I think it is due to the fact I know what to expect this time. Last year I had never run a half marathon and was in the unknown, this year I know. I am not training as hard as I was....and mother nature is not helping!
Today on our 10 mile run, around mile 8 my achilles tendon started hurting...really bad. We walked it out...then ran...then walked...then ran. On one of our walking periods, I said to my running fairy (friend), " I feel so bad for my daughter. If her achilles tendon hurt this much before, during or after her surgery I feel horrible for not recognizing the pain she was in"!
It kills me to think she could not feel well or be in pain and I have no idea. I hate playing the guessing game and wish she could just tell me. This is one thing I do not take for granted with my other children....at all.
I really felt for my daughter today....it really hit home to me. However, the difference between me and her is....I complained about it...constantly....and she never did...or never does. I don't know if she expects pain to be a part of her life (I hope not), if she doesn't feel pain like I do (a good chance as girls with Rett Syndrome have a high pain tolerance) or she is one tough cookie (which is probably the case!).
I honestly can't imagine what it would be like to not be able to express my feelings. And days like today really made me recognize how hard it must be for her to express her feelings...especially when she is in pain.
Here is a quote for today...
Love is but the discovery of ourselves in others, and the delight in the recognition- Alexander Smith
Have you ever thought what it might be like to be in pain or not feel well, but you could not communicate this to anyone....verbally? I haven't imagined this myself..until I had a daughter who is nonverbal.
I have had a history of stomach pains which rears its ugly head sporadically and when it does I often think about my daughter and what if she was having horrific pains like these one night. I would never truly know and we would think she was upset and having a behavior. When I get these "stomach pains" I act out in a behavior....as the pain is unbearable....worse than contractions!
The difference is, when I am in pain I can verbally explain what hurts and you can help me if help is needed. When she is in pain...we have no idea or need to play the guessing game.
As you may know from previous posts, I am in the middle (to near end) of my training for the Disney Princess Half Marathon and I have to be honest my head is not in the game like it was last year. I do not know why, but I think it is due to the fact I know what to expect this time. Last year I had never run a half marathon and was in the unknown, this year I know. I am not training as hard as I was....and mother nature is not helping!
Today on our 10 mile run, around mile 8 my achilles tendon started hurting...really bad. We walked it out...then ran...then walked...then ran. On one of our walking periods, I said to my running fairy (friend), " I feel so bad for my daughter. If her achilles tendon hurt this much before, during or after her surgery I feel horrible for not recognizing the pain she was in"!
It kills me to think she could not feel well or be in pain and I have no idea. I hate playing the guessing game and wish she could just tell me. This is one thing I do not take for granted with my other children....at all.
I really felt for my daughter today....it really hit home to me. However, the difference between me and her is....I complained about it...constantly....and she never did...or never does. I don't know if she expects pain to be a part of her life (I hope not), if she doesn't feel pain like I do (a good chance as girls with Rett Syndrome have a high pain tolerance) or she is one tough cookie (which is probably the case!).
I honestly can't imagine what it would be like to not be able to express my feelings. And days like today really made me recognize how hard it must be for her to express her feelings...especially when she is in pain.
Here is a quote for today...
Love is but the discovery of ourselves in others, and the delight in the recognition- Alexander Smith
Friday, January 25, 2013
Resting Her Head on Me
Today's gift is my daughter resting her head on me.
I don't know what the weather is where you are, but here it is very cold and we had probably an inch of snow this afternoon. I am not cut out for cold weather like this and I do not enjoy tons of snow. The dusting we had today was perfect.
The snow started to fall right before my son and I went to pick up the girls from school. The drive to carpool was picturesque! And it made for some excited kids!
When we got home we all snuggled up on the sofa, turned on the fireplace, enjoyed a snack and watch tv. My oldest daughter and I were on the sofa sitting next to each other. We were watching one of our favorite shows, Good Luck Charlie, when I could feel her body relaxing as if she was drifting off to sleep.
She was sleepy, but was not falling asleep. Instead, she was going into her relaxed state where she does not wring her hands and is nice and calm. Then all of a sudden she rested her head against the top of mine! It was so sweet! I didn't want to move, but wanted to enjoy this moment for as long as I could. Honestly, I didn't move. I could have done some laundry or emptied the dishwasher, but I didn't want this little slice of heaven to end.
Eventually I did have to get up to start making dinner, but my son was lucky enough to sneak in and take my spot! I love moments like these so much. The simple pleasures of feeling her relax from the stresses of her day and then watching her feel comfortable enough with her brother to remain in the state of relaxation.
Here is a quote for today...
Besides the noble art of getting things done, there is a nobler art of leaving things undone - Lin Yutang
I don't know what the weather is where you are, but here it is very cold and we had probably an inch of snow this afternoon. I am not cut out for cold weather like this and I do not enjoy tons of snow. The dusting we had today was perfect.
The snow started to fall right before my son and I went to pick up the girls from school. The drive to carpool was picturesque! And it made for some excited kids!
When we got home we all snuggled up on the sofa, turned on the fireplace, enjoyed a snack and watch tv. My oldest daughter and I were on the sofa sitting next to each other. We were watching one of our favorite shows, Good Luck Charlie, when I could feel her body relaxing as if she was drifting off to sleep.
She was sleepy, but was not falling asleep. Instead, she was going into her relaxed state where she does not wring her hands and is nice and calm. Then all of a sudden she rested her head against the top of mine! It was so sweet! I didn't want to move, but wanted to enjoy this moment for as long as I could. Honestly, I didn't move. I could have done some laundry or emptied the dishwasher, but I didn't want this little slice of heaven to end.
Eventually I did have to get up to start making dinner, but my son was lucky enough to sneak in and take my spot! I love moments like these so much. The simple pleasures of feeling her relax from the stresses of her day and then watching her feel comfortable enough with her brother to remain in the state of relaxation.
Here is a quote for today...
Besides the noble art of getting things done, there is a nobler art of leaving things undone - Lin Yutang
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