A meeting was held, quite far from earth"It's time again for another birth"Said the Angels to the Lord above,"This special child will need much love"Her progress may seem very slow,Accomplishments she may not showAnd she'll require extra careFrom all the folks she meets down there.She may not run or laugh or playHer thoughts may seem quite far awayIn many ways she won't adapt,And she'll be known as handicapped.So let's be careful where she's sentWe want her life to be contentPlease, Lord, find the right parents whoWill do this special job for You.They will not realize right awayThe leading role they're asked to playBut with this child sent from aboveComes stronger faith and richer love.And soon they'll know the privilege givenIn caring for this gift from Heaven.Their precious charge, so meek and mildIs heaven's very special child
.Copyright © 1981 by Edna MassimillaPublished in The Optimist - newsletter for PROUDParents Regional Outreach for Understanding Down's Inc.
I found this sometime ago that I used on a scrapbook page for Owie, I still read it often and it says so much of how I feel. Enjoy!
Thursday, November 8, 2007
Wednesday, November 7, 2007
UGh forgot :-))
I forgot to add that all my links are at the bottom of my page under rockin sites! There are some great places on the web to check out, one is about the syndrome that Owen has. All the sites I want to spread the word about tfl!
Check out these sites
My friend from my dolly group has an AWESOME website up and running, check it out! Also a family on my preemies group is trying to come up with the rest of the money to adopt a sweet lil guy so if ya have time check that out too! I will be adding more things as time allows so check back!
Tuesday, November 6, 2007
Forgive my complaining
I guess you have to get it out sometimes and today must be my day for that! I am sooo frustrated with doctors, I guess just the whole damn medical system,maybe I just expect to much from doctors I know they cant know everything but I want ANSWERS I WANT SOMEONE TO HELP US it is VERY stressful when Owen bites himself and we cant get him to stop. Thanks to all the helpful drs therapists etc that say ohh just tell him to stop! Well DUH like I haven't already thought of that? Ya that does a load of friggin good lemme tell ya! I cant get the drs to fill out papers he needs for school and for that matter even call me back. I am about at my breaking point with all of this going on I just want to scream sometimes but what good does that do? Sooo just have to keep on keeping on, what else is there to do?
There are so many times I just feel so alone not sorry for myself because I am blessed to have all of my children and everything that comes with it even the not so fun stuff....I want someone to understand and while I know people who arent going thru the same things cant really comprehend what it's like it would be nice to have some support now and again. This is very lonely and I dont want to burden anyone with my problems there is many worse things going on in the world. There are many day when I feel like I am going to lose my mind I just cant make Owen happy and it seriously just kills me inside.
Where did I go wrong? How could I have done this to him? I love him the way he is but I feel so responsible for everything he is going thru WHY DID MY BODY HAVE TO SCREW HIM OUT OF BEING A NORMAL KID? I DID THIS TO HIM and will probably never forgive myself I just hope he does.
I was hoping to take O to Oklahoma City to a geneticist and some other drs there but dont have names of anyone that are familiar with CFC Syndrome I have to do more searching and hope to find someone that could possibly do a complets work up on him any and all prayers would be appreciated.
Anyway I guess that is it for now.
Best,
Kirsten
There are so many times I just feel so alone not sorry for myself because I am blessed to have all of my children and everything that comes with it even the not so fun stuff....I want someone to understand and while I know people who arent going thru the same things cant really comprehend what it's like it would be nice to have some support now and again. This is very lonely and I dont want to burden anyone with my problems there is many worse things going on in the world. There are many day when I feel like I am going to lose my mind I just cant make Owen happy and it seriously just kills me inside.
Where did I go wrong? How could I have done this to him? I love him the way he is but I feel so responsible for everything he is going thru WHY DID MY BODY HAVE TO SCREW HIM OUT OF BEING A NORMAL KID? I DID THIS TO HIM and will probably never forgive myself I just hope he does.
I was hoping to take O to Oklahoma City to a geneticist and some other drs there but dont have names of anyone that are familiar with CFC Syndrome I have to do more searching and hope to find someone that could possibly do a complets work up on him any and all prayers would be appreciated.
Anyway I guess that is it for now.
Best,
Kirsten
Saturday, November 3, 2007
more pictures to add
so they arent great ones I should probably read my intruction book my camera came with.....when I got it..........6 months AGO lol! anyway will post those in a bit.
The boys had conferences this wk and did pretty good, Ethan needs work on some letters and sounds, not surprising because neither of us had really worked with him prior to kdg but he is doing great! He is a smart kid.
What can I say about lil Owie? He has made some great strides since starting in his new school as well, he will sit up unassisted for long periods of time, we have to sit him up but he stays WOOHOO! He has also really done well as far as eating, he takes the plate and licks the food off what an accomplishment! I know alot of people dont understand (inlaws and my own father) and think I should just be able to make him eat ummm doesnt work that way he has oral aversion people ya cant shove food in their mouths and expect them to eat grrr! Anyway he is doing some wonderful things he says mama,dada,ga I think thats for go because he leads me to where I hang my keys and lifts my hand lol what a guy! He says baba but Im not sure what he means by that one and last night Rich said Owen was working hard to make a word then clapped his hands and said "ap" now that is a major deal in our house!
Oh alex got her grade card and I am happy to say she is actually working hard yipppeee! she got one d- but the rest a's and b's for a GPA of 3.14! GO GIRL
I am down to one doggie now, The Great Oscar is all I have left, Rich had me find homes for my doxie's I have had them since they were 8 wks old and I am sad but I guess it's best as I didnt have alot of extra time to spend with them at least Im telling myself its best.
My SIL'S friend has a girl who is in a wheelchair, she just got a new one since she is growing (GOOO S!) Anyway, her mom is going to give us her old motorized chair its pink I hope Owen doesnt mind lol anyway we are going to just use it around here to see if Owen can manuver it. How fun that will be! I was told basically to forget the idea that Dr. K (from the cp clinic) will approve a gait trainer for Owen sooo I think we will try and see if we can get him a Dynamic Stander instead....Im not giving up totally but Im not sure anymore if now is the right time for that. I just want him to walk sooo bad! I think he will take a few steps at some point,for now tho I will be happy with the things he is doing!
I think that is enough for now although I think I forgot something lol!
Best,
Kirsten
The boys had conferences this wk and did pretty good, Ethan needs work on some letters and sounds, not surprising because neither of us had really worked with him prior to kdg but he is doing great! He is a smart kid.
What can I say about lil Owie? He has made some great strides since starting in his new school as well, he will sit up unassisted for long periods of time, we have to sit him up but he stays WOOHOO! He has also really done well as far as eating, he takes the plate and licks the food off what an accomplishment! I know alot of people dont understand (inlaws and my own father) and think I should just be able to make him eat ummm doesnt work that way he has oral aversion people ya cant shove food in their mouths and expect them to eat grrr! Anyway he is doing some wonderful things he says mama,dada,ga I think thats for go because he leads me to where I hang my keys and lifts my hand lol what a guy! He says baba but Im not sure what he means by that one and last night Rich said Owen was working hard to make a word then clapped his hands and said "ap" now that is a major deal in our house!
Oh alex got her grade card and I am happy to say she is actually working hard yipppeee! she got one d- but the rest a's and b's for a GPA of 3.14! GO GIRL
I am down to one doggie now, The Great Oscar is all I have left, Rich had me find homes for my doxie's I have had them since they were 8 wks old and I am sad but I guess it's best as I didnt have alot of extra time to spend with them at least Im telling myself its best.
My SIL'S friend has a girl who is in a wheelchair, she just got a new one since she is growing (GOOO S!) Anyway, her mom is going to give us her old motorized chair its pink I hope Owen doesnt mind lol anyway we are going to just use it around here to see if Owen can manuver it. How fun that will be! I was told basically to forget the idea that Dr. K (from the cp clinic) will approve a gait trainer for Owen sooo I think we will try and see if we can get him a Dynamic Stander instead....Im not giving up totally but Im not sure anymore if now is the right time for that. I just want him to walk sooo bad! I think he will take a few steps at some point,for now tho I will be happy with the things he is doing!
I think that is enough for now although I think I forgot something lol!
Best,
Kirsten
Saturday, October 27, 2007
OOPS FORGOT
If you feel compelled to do so would you kindly go here:http://www.robinhoodfund.com/cast-your-votes/wish/id/14320 and vote for me? Doesnt cost anything I am just trying to win so I can try and get a pediatric gait trainer thanks!
Dang!!
I finally remembered my log in info yay me haha! ANYWAY wow it has been a loooong time. So much is going on i dont know where to begin. We got Oscar in August he is doing very well. Im so glad we were able to get him for Owen he has since started to be willing to touch Oscar! That is such a HUGE step!
The kids are all doing well despite one wheelchair mishap with Owen at school, he wasnt belted in and unfortunately fell out of the damn chair I wasnt a happy mama!
All the kids are doing very well in school Owen is trying foods yippee! maybe one day we will get rid of the Gtube some day. He is super funny, at school they put him in the stander and the little turdy birdy runs over the other kids~great my kid is the class bully! Although the teachers say that the other kids think its great so hopefully he will still have friends at the end of the yr lol!
Ethan is doing great at kdg he is finally starting to get used to it and has tons of friends, although I knew he would he is a sweetie! Alex is doing great in her 1st yr of high school she has friends that are upper classmen and has been invited to numerous parties who'da thunk it? hehe. I just got the progess report and she has a 3.14 grade pt average not too bad I dont think. After LAST yr and not turning in her work dang kid lol. SHe is trying to find a job and has applied several places they haven't called her back yet but hey she is still only 15 maybe this summer. I told her tho that if she gets a job she will have to give me 10.00 a wk for gas and save half of every check she agreed and that will give her money to do things. Maybe she can save up to take driver's ed and that way I wont have to cart her everywhere lol! Oh and there is another boy she likes a senior they hang out before school LORD Im scared lol!
Best,
Kirsten
The kids are all doing well despite one wheelchair mishap with Owen at school, he wasnt belted in and unfortunately fell out of the damn chair I wasnt a happy mama!
All the kids are doing very well in school Owen is trying foods yippee! maybe one day we will get rid of the Gtube some day. He is super funny, at school they put him in the stander and the little turdy birdy runs over the other kids~great my kid is the class bully! Although the teachers say that the other kids think its great so hopefully he will still have friends at the end of the yr lol!
Ethan is doing great at kdg he is finally starting to get used to it and has tons of friends, although I knew he would he is a sweetie! Alex is doing great in her 1st yr of high school she has friends that are upper classmen and has been invited to numerous parties who'da thunk it? hehe. I just got the progess report and she has a 3.14 grade pt average not too bad I dont think. After LAST yr and not turning in her work dang kid lol. SHe is trying to find a job and has applied several places they haven't called her back yet but hey she is still only 15 maybe this summer. I told her tho that if she gets a job she will have to give me 10.00 a wk for gas and save half of every check she agreed and that will give her money to do things. Maybe she can save up to take driver's ed and that way I wont have to cart her everywhere lol! Oh and there is another boy she likes a senior they hang out before school LORD Im scared lol!
Best,
Kirsten
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