Julia had her 6 month follow up with neurology today. The news is not good or bad - not suprising -basically just wait and see again. One bit of concern was that her head has not grown since the vaccine injury three yrs ago. Her weight and height are in the 75 and 55% but her head is too small to even be on the charts. I asked about repeating an MRI and they said it really won't give us much information and that the only way to see if she is getting better is to SEE her get better. She explained to me that with the damage being primarily on her frontal lobes of her brain (both sides) that she is always going to have issues with behavior and impulse control. She said she will never be normal. But that she still has hope that she will improve - to what degree??? nobody knows. She said me putting her in that school that I did was the best thing I could have done for her - that hopefully the structure will teach her about appropriate behavior and socialization. She said it will likely take a lot of time, and I only have enough money for about 10 months for the school, so i will have to figure that one out.
I am so so so very angry about what happened to her. The dr's seem so callous - well maybe not callous, but just very "nonchalant" or "indifferent" about it all - i guess i get that way too in vet med, but these are people KIDS, not just dogs and cats. I don't know - i want it put to me straight, but it hurts to see them so...whatever....about it. They never knew her "before" - that she was an incredible baby with a fabulous personality, and now her life is FOREVER changed because of a stupid vaccine, for something she NEVER would have probably gotten anyway. I am so sad today. Happy birthday to me.....whatever. I just want to go to bed - tomorrow is another day.
Thanks to all of you who show your continued support for Julia and her crazy mom! :) Kidding, sort of.
Susan
Tuesday, November 3, 2009
Monday, November 2, 2009
Sunday, November 1, 2009
So nice and true....I for one will always do my best for you kids - I ain't perfect by any means, but will never just leave you hanging. I will always "just deal with it" for you. You are the reason for my existance.
"There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want, and that they grow up in peace" - Kofi Annan
Saturday, October 31, 2009
Email from my friend Margaret - Glad her book is such a success and that she found her "purpose" in this life....
Good news! Remembering Alexis is now in five COSTCO stores in Denver! You have to have thousands of books to be carried by stores nationwide so I pitched a “Colorado Buy” and they decided to carry the books through the holidays at the 5 stores closest to my zip code. If sales are good, they’ll expand to all of the Denver stores.
The books are in the Aurora store on South Havana, Parker, Park Meadows, the SW store on West Quincy and the Sheridan store just off South Santa Fe Drive and Oxford. I will put the addresses on the website.
The cost of the book is $14.99 (I get just $11 a book but it’s worth the opportunity to sell LOTS of books). If you don’t mind, please let friends and associates know that the book is available at Costco. It would make a nice Christmas present, birthday present, Chanukah, etc.
And if you are in a Costco that carries the book, check it out and nudge the display a little so it shows more prominently. I went to Park Meadows yesterday to experience seeing my book in a Costco (something I always envisioned), and found that their stock of all books has quadrupled in the last three weeks. They are obviously stocking up for the holidays. Remembering Alexis was on the top shelf, binding out, so I took one of the books and placed it front-cover forward below the stack on top of Baldacci. What the heck. It might help!
Alexis has been very busy promoting the book. I have met with several book clubs at her house. People who read the book e-mail me through the website and take me up on the offer to meet with groups. We tour the house, pour some Allis Ranch wine, and have a lovely discussion about how it feels to be a daughter, sister, wife, mother and the general ups and downs of life. The honesty of the book opens the door for them to be honest about their feelings. I ask each woman what her strongest reaction to the book is. So far, no two answers have been the same. Doing this takes the discussion away from my life, thank goodness, and into theirs.
I had the privilege three weeks ago to meet with 35 mothers at a home in Denver. Each woman was either a mother of a handicapped child or had lost a normal or handicapped child. The hostess described it as a gathering of women who understand loss. It was quite a group. I felt Alexis by my side as I talked about the grief that comes with the diagnosis of a disability (the loss of expectation for your life and for the child’s life) and the repetition and reinforcement of that grief every time the child doesn’t meet significant developmental milestones. One woman responded, “My love for my son is so deep, but the grief is inside me right next to my love.” I also told them about feelings I had as Alexis’ mother that I didn’t recognize or couldn’t verbalize when Alexis was alive and suggested that they, too, had those feelings – like being afraid to be happy again because it can be taken away from you just like it was the moment you received the diagnosis. Many heads nodded. I am realizing how important it is for mothers of handicapped children to read the book and talk to me. Knowing of Alexis and me helps them believe they can get through the next day, the next week. I have never been more sure of my purpose than I am at these meetings.
I did feel, however, that I didn’t provide what I could to a woman whose 17-year-old son was killed in Montana a year and a half ago when he swerved to miss a deer. She is in the throes of grief and I couldn’t get there in the midst of all of those people. Driving home, I remember feeling exactly like she did, and I wished I could go back and tell her in a more private way that I understand.
That same week I did a training for 50 staff at Denver Options. I talked about parent’s grief, explaining to them when they work with a parent who is angry or depressed, where those emotions come from. I also read to them my list of how the parents feel. Afterward, a young woman came up to me with tears in her eyes and said, “Thank you. We are so busy recording Medicaid payments in 15 minute segments that we forget that we are actually dealing with people who have suffered a tremendous loss.” Another said, “You opened my eyes when you said that as staff we reflect the parents’ loss. I never realized that but it makes so much sense.” My response was, “Parents of normal children don’t know what goes on in this building. Coming here as a parent means your life is different.”
Last Sunday I met with another group of mothers, all of whom have special children, none of whom are older than 6. These mothers have just started their journeys. There were many tears. Over four hours, they expressed their anger and their fears. Their greatest fear is their future. What does it look like? One mother asked, “Will I still be this angry 15 years from now?” Another, whose son is cognitively normal but has a spinal deformity and is not expected to live for many years, said, “I can’t imagine losing Bjorn. As hard as it has been to accept his disabilities, he has taught me how to see life. I can’t imagine losing him. I will never be able to make it when he dies.” I assured her that she could and she would.
I have no idea what my life looks like from week to week, but I am grateful to be on this journey.
Thank you for reading all of this – I thought this was just going to be an e-mail about Costco!!
Margaret
The books are in the Aurora store on South Havana, Parker, Park Meadows, the SW store on West Quincy and the Sheridan store just off South Santa Fe Drive and Oxford. I will put the addresses on the website.
The cost of the book is $14.99 (I get just $11 a book but it’s worth the opportunity to sell LOTS of books). If you don’t mind, please let friends and associates know that the book is available at Costco. It would make a nice Christmas present, birthday present, Chanukah, etc.
And if you are in a Costco that carries the book, check it out and nudge the display a little so it shows more prominently. I went to Park Meadows yesterday to experience seeing my book in a Costco (something I always envisioned), and found that their stock of all books has quadrupled in the last three weeks. They are obviously stocking up for the holidays. Remembering Alexis was on the top shelf, binding out, so I took one of the books and placed it front-cover forward below the stack on top of Baldacci. What the heck. It might help!
Alexis has been very busy promoting the book. I have met with several book clubs at her house. People who read the book e-mail me through the website and take me up on the offer to meet with groups. We tour the house, pour some Allis Ranch wine, and have a lovely discussion about how it feels to be a daughter, sister, wife, mother and the general ups and downs of life. The honesty of the book opens the door for them to be honest about their feelings. I ask each woman what her strongest reaction to the book is. So far, no two answers have been the same. Doing this takes the discussion away from my life, thank goodness, and into theirs.
I had the privilege three weeks ago to meet with 35 mothers at a home in Denver. Each woman was either a mother of a handicapped child or had lost a normal or handicapped child. The hostess described it as a gathering of women who understand loss. It was quite a group. I felt Alexis by my side as I talked about the grief that comes with the diagnosis of a disability (the loss of expectation for your life and for the child’s life) and the repetition and reinforcement of that grief every time the child doesn’t meet significant developmental milestones. One woman responded, “My love for my son is so deep, but the grief is inside me right next to my love.” I also told them about feelings I had as Alexis’ mother that I didn’t recognize or couldn’t verbalize when Alexis was alive and suggested that they, too, had those feelings – like being afraid to be happy again because it can be taken away from you just like it was the moment you received the diagnosis. Many heads nodded. I am realizing how important it is for mothers of handicapped children to read the book and talk to me. Knowing of Alexis and me helps them believe they can get through the next day, the next week. I have never been more sure of my purpose than I am at these meetings.
I did feel, however, that I didn’t provide what I could to a woman whose 17-year-old son was killed in Montana a year and a half ago when he swerved to miss a deer. She is in the throes of grief and I couldn’t get there in the midst of all of those people. Driving home, I remember feeling exactly like she did, and I wished I could go back and tell her in a more private way that I understand.
That same week I did a training for 50 staff at Denver Options. I talked about parent’s grief, explaining to them when they work with a parent who is angry or depressed, where those emotions come from. I also read to them my list of how the parents feel. Afterward, a young woman came up to me with tears in her eyes and said, “Thank you. We are so busy recording Medicaid payments in 15 minute segments that we forget that we are actually dealing with people who have suffered a tremendous loss.” Another said, “You opened my eyes when you said that as staff we reflect the parents’ loss. I never realized that but it makes so much sense.” My response was, “Parents of normal children don’t know what goes on in this building. Coming here as a parent means your life is different.”
Last Sunday I met with another group of mothers, all of whom have special children, none of whom are older than 6. These mothers have just started their journeys. There were many tears. Over four hours, they expressed their anger and their fears. Their greatest fear is their future. What does it look like? One mother asked, “Will I still be this angry 15 years from now?” Another, whose son is cognitively normal but has a spinal deformity and is not expected to live for many years, said, “I can’t imagine losing Bjorn. As hard as it has been to accept his disabilities, he has taught me how to see life. I can’t imagine losing him. I will never be able to make it when he dies.” I assured her that she could and she would.
I have no idea what my life looks like from week to week, but I am grateful to be on this journey.
Thank you for reading all of this – I thought this was just going to be an e-mail about Costco!!
Margaret
Friday, October 30, 2009
School, Snow, Attorney!
So, this was to be Julia's second week at school. Shawn drove Julia in rush hour traffic up to school on Monday, just to find out it was Fall Break.....woops....I'm sure I had a schedule saying that somewhere, but with everything going on, I didn't look at it.....sorry about the wasted trip, Shawn. Julia was pretty upset that day because she wanted to STAY there even though nobody was there. Thank you to Dawn for keeping Julia all this week with no previous notice! Julia will be back at school on Monday. I do really look forward to seeing her progress. I hope it happens relatively quickly!
We had the first big winter storm of the season on Wednesday and Thursday. WOW, talk about a lot of snow! Thank goodness Dawn was available to keep the kids, even with all the weather! And thank goodness it was Fall Break!! Nobody would have been able to drive her to school in that weather! Jack LOVED the weather, and I LOVED having the day off yesterday (even after a few mild traffic incidences trying to drive to work, only to find out we were closed....).
I heard from Julia's Vaccine Injury Attorney today. They are planning on coming out mid-late November to discuss the settlement. I have so much to get ready as far as paperwork for them. It seems that as soon as I am done with one stack of phonebook sized requirements, another lands on my desk. I try to fit all this in during lunch breaks and in between appointments, as I cannot really get to it at night with the kiddos around. Shawn refers to it as my "sidework". I am actually amazed I have gotten so much done in the little time that I actually have to do it! Yes, I am pretty proud of myself. I can't wait to talk to the attorney and get somewhat of an idea of the timeframe for the settlement and what all it will cover for Julia. She deserves every nickel for what happened to her, and I will fight for it!
I will post some Halloween pics after tomorrow - Julia is going to be an Ewok and Jack, Darth Vader. I'm going to try to pull off Princess Leigha.....in my old age, and Shawn Obe Wan....(did I spell that right??)
Susan
We had the first big winter storm of the season on Wednesday and Thursday. WOW, talk about a lot of snow! Thank goodness Dawn was available to keep the kids, even with all the weather! And thank goodness it was Fall Break!! Nobody would have been able to drive her to school in that weather! Jack LOVED the weather, and I LOVED having the day off yesterday (even after a few mild traffic incidences trying to drive to work, only to find out we were closed....).
I heard from Julia's Vaccine Injury Attorney today. They are planning on coming out mid-late November to discuss the settlement. I have so much to get ready as far as paperwork for them. It seems that as soon as I am done with one stack of phonebook sized requirements, another lands on my desk. I try to fit all this in during lunch breaks and in between appointments, as I cannot really get to it at night with the kiddos around. Shawn refers to it as my "sidework". I am actually amazed I have gotten so much done in the little time that I actually have to do it! Yes, I am pretty proud of myself. I can't wait to talk to the attorney and get somewhat of an idea of the timeframe for the settlement and what all it will cover for Julia. She deserves every nickel for what happened to her, and I will fight for it!
I will post some Halloween pics after tomorrow - Julia is going to be an Ewok and Jack, Darth Vader. I'm going to try to pull off Princess Leigha.....in my old age, and Shawn Obe Wan....(did I spell that right??)
Susan
Saturday, October 24, 2009
First week at school!
Julia did great her first week at the Rise School! Her teachers said you would have never known it was her first week there - she wasn't scared, she loved playing with the toys, she participated with the groups to the best of her ability, and everything seems great! (oh, except for napping - she won't sleep there so she is WIPED OUT when she gets back to daycare at about 3pm and sleeps til about 5pm.....not so great for an early bedtime, but its worked out ok so far). Anyway, I am so happy things have gone smoothly!
I also want to extend huge THANK YOU'S to Shawn, Janette, Dawn Diehl, Mary Wise and Dr Stacey for the transportation help. This opportunity for Julia would not exist without your help! THANK YOU SO MUCH!
I will try to post some pics soon!
Susan
I also want to extend huge THANK YOU'S to Shawn, Janette, Dawn Diehl, Mary Wise and Dr Stacey for the transportation help. This opportunity for Julia would not exist without your help! THANK YOU SO MUCH!
I will try to post some pics soon!
Susan
Tuesday, October 13, 2009
Cha Cha Cha Cha Changes.......
Wheels are turning, things are changing, and my brain hurts!
Lots of things going on, lots of paperwork flooding my brain and my countertops, but in the end it will mean positive changes for Julia and that is all that matters.
I have most of the paperwork for the school filled out....now I just need to figure out how to get her to school four days a week, oh, and how to get her home. Shawn has offered to take her most days and pick her up most afternoons, but I don't want all of that pressure on him, especially with winter coming in, so, I am looking to have some help at least a couple days a week. It will all come together I am sure....if you know anyone that might want to help - please give them my email address!!
I'll update as school progresses!
Susan
Lots of things going on, lots of paperwork flooding my brain and my countertops, but in the end it will mean positive changes for Julia and that is all that matters.
I have most of the paperwork for the school filled out....now I just need to figure out how to get her to school four days a week, oh, and how to get her home. Shawn has offered to take her most days and pick her up most afternoons, but I don't want all of that pressure on him, especially with winter coming in, so, I am looking to have some help at least a couple days a week. It will all come together I am sure....if you know anyone that might want to help - please give them my email address!!
I'll update as school progresses!
Susan
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