There is very little that I'd agree with Hillary Clinton on, in fact, this statement may be the only thing, but I could not agree more with her statement that it takes a village to raise kids!! And having a special needs kids REALLY takes a village! And my village was busy this weekend!!
Barry, Anna and I went out of town this weekend with our church youth group. Every year there is a big weekend of worship and learning and serving our God. I went as a teen but it is different going as an adult! I know many of the kids do appreciate the message but sometimes it seems like such a slow process! If they'd just listen to us wise adults then they could save themselves a lot of trouble!
This year it wouldn't have been possible for all three of us to go if our family didn't have an awesome village surrounding us!! We really needed Barry to go as a van driver and Barry wouldn't want to go without me. Anna however didn't want either of us to go.....but really she didn't care, she just couldn't admit it! LOL! But if all of us left, then who would take care of the 3 little ones? Who would run Cade to his first baseball practices of the season? Who would help with Gracie and her first softball practice of the year? That's where our village comes in!!
On active duty this weekend was my mom and dad. Moma didn't work on Friday so she could be here and keep Asa on since we left before noon. She took my directions on Asa's feeding and med schedule. She got Cade and Gracie off the bus and did all the cooking, cleaning and washing for the weekend. I know most all grandmothers babysit for their grand kids but I wouldn't normally ask Moma to keep the 3 smaller ones at one time! And let's face it, Asa is more difficult than most kids! Just keeping him can be a chore not to mention Gracie and Cade with their squabbles, feedings, messes and schedules! What a blessing to have my parents right next door!! Thank you Moma and Daddy for keeping them all this weekend!
And then there was Cade's first baseball practices of the season. He had practice on Friday and Saturday. Since Asa is usually less than fond of the ball field, it can complicate things like ball practices and games! I am hopeful that Asa will have more fun at the ball field this year since his sensory issues have mellowed out some! What I trade off in sensory stuff may be made up for in Asa's new "go" attitude! Still, I didn't want to have to test my theory with my mom! That's when my village expanded to Robin!! She has twin boys the same age as Cade and the boys have been in school and on ball teams together since Kindergarten! Her hubby happens to be the boys ball coach but this doesn't mean it was easy to add Cade to her schedule. Her dear hubby was working so not only was she playing single mom to her boys and little girl Jude, she gladly added Cade to her schedule for both practices! And not that a 10 year old boy is all that much trouble but some days just another person can throw the balance off! I hope that didn't happen this weekend! :)
I'll tell you another thing about Robin..... Her boys have a birthday right before Cade. When Asa was 4 months old and in the hospital for 7 days, it was the week before Cade's 7th birthday! We got home on a Friday evening and had a party the next day. The way I recall things, Robin had a skating party scheduled and let us bum onto her boy's party! They shared school friends and we both invited some family and had separate cakes but without her help who knows what kind of birthday Cade would have had! I know she'll love me tooting her horn about all of this but sometimes horns need to be tooted!!! Thank you Robin for being such a kind and caring friend!
And then that just left Gracie! She really wasn't all that thrilled that I signed her up for softball anyway, but then we were going to miss her first practice too. I was afraid she'd be mad and really not want to play! Shockingly, Gracie can be a little rotten and dramatic (must get that from her daddy)! Our neighbor and friend, Christi, was going to take her to practice but Gracie decided that she wanted Dee Dee to take her....insert the rotten here! Soooo, my mom took Asa and Gracie to practice! When Asa wasn't having such a great time and my mom took him home, Christi brought Gracie home! Again, hopefully my girl wasn't any trouble but I just hate to intrude on other folks schedules. Thank you Christi for taking care of Gracie at practice and bringing her home! Both the kids have really awesome families on their teams!!
We are so blessed to have great friends and family! And these are only the handful of villagers who help out in our village! Our village is full of people who will pick kids up, drop kids off, take charge of things, babysit anytime, etc! This just happened to be a busy, crazy weekend! But the point is that we are surrounded by people who make these times less crazy and busy. I honestly had no worries that the kids would be happy and taken care of while we were gone! And if you think that I'm a bit dramatic to make such a big deal out of a 2 day trip then you don't realize that I'm a control freak who wants to know the who, what, how and when of every day! I like to have a well defined plan, not just run off for a trip while my kids are scattered and shuttled around. But with such a great village I know that I'm covered, the kids are great and everyone can have fun!
So thank you to our village, those on duty this weekend, those on duty for our Houston trip in 2 weeks and those who are standing ready! It takes a village and ours is top of the line!!!
Saturday, March 12, 2011
Wednesday, March 9, 2011
A beautiful sight!
From the time Asa was a little baby, I've had the same prayer for him as I've rocked him to sleep at night. I've prayed every night that when we get up in the morning, things will be back to normal and this last 3 years will have been a bad dream. This prayer seemed possible when Asa was just a few weeks or months old. You'd think by this point I'd realize that this "bad dream" scenario isn't going to happen! Even as I've let a lot of dreams and hopes go, I've still held onto a few dreams that if I was honest, I really didn't think would happen. Things like Asa being a walker or hearing him say "Moma". And it isn't that I'm depressed at the thought of him not walking or talking because of all the issues that he could have, these are very mild. Sure they are frustrating, tiring and disappointing but not tragic in any way!
But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.
Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!
Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!
God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!
Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!
But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.
Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!
Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!
God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!
Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!
Monday, March 7, 2011
Randomness
We are getting ready for the Mito-What? 5K! It turns out that running outside is much harder than running on the treadmill! And we live near hills! Who knew!! Anna and I tried to do 3.1 miles today but we got a later start and had to get back before Cade and Gracie got off the bus. We did 2.94 miles in......43 minutes! We are slow! I guess we still have 2 weeks to get faster. If I'm that slow I'm just doing the 1 mile! At last check there was 270 people registered but there is still room for you if you want to come!! Or sign up as a runner and just be a virtual runner. The money goes to the UMDF no matter if you show up or not!!!
And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!
This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.
We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!
Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!
Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.
And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!
This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.
We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!
Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!
Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.
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