Sunday, January 20, 2013
4?? Are you serious?
We have no idea where 4 years have gone, but our little Jack is not so little anymore! Happy Birthday to our sweet and hysterically funny Jack!
Tuesday, October 30, 2012
Bloom
As this month of Down Syndrome Awareness has almost come to an end, I find myself back at the beginning. The beginning being the beginning of our journey with Down syndrome.
When Brendan was just a few months past his second birthday I remember seeing a friend posting a link to this blog post on their Facebook page, and I remember how long it took me to read through the entire story.
The blog story was one woman's account of the birth of her second child and the beginning of their journey with Down syndrome. It is raw, and honest to the core. She had not had a prenatal diagnosis, and even though we did I so related to every word that she poured into that blog, and before I closed out that window from her birth story post, I became a follower of her blog.
Kelle Hampton is the author of the blog "Enjoying the Small Things", and she is a great writer, an amazing photographer and the kind of mom that I wish I could be with all of the fun crafty things she does with her girls (very Auntie Jo like, although I don't think she has had the Nativity re-creation..that is still unbeatable!) She is not an expert on Down syndrome, she is an expert on being a mom of two girls (soon to add a boy) and an expert on the ups and downs of having a child with special needs, well about as much of an expert as I am!
When she announced that she was writing her memoir I remember wondering if I really wanted to read it, especially remembering how hard it was to complete reading her post about Nella's birth. The day it came out, I didn't go out and buy it, and I didn't buy it the next day either. Then I kept seeing people post on her blog about how great the book was, and well on day 3 I bought it..
I would love to say that I read the book in one sitting and it was amazing, but that would be a lie. First of all, if I was able to read more than 10 pages at a time that would be a HUGE victory.....no need to go into any stories of the shenanigans of Rory, Brendan and Jack... I made it to page 6, that was it. The words "I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."
I was done. My mind went back to November 2007 standing over Brendan's incubator in the NICU at Wilford Hall in San Antonio. I remember looking at him, his eyes were shut as they were for at least the first week of his life, and he had an EEG machine wrapped around his head to measure his brain activity. I said a million times in my head, and to God, I don't care if he has Down syndrome, I just want to be able to hold him and be his mom, please make him OK. See, it didn't matter that we knew that our child had Down syndrome before he was born, until we saw him, could see the 'tell tale' signs of Down syndrome, I don't think it was going to sink in. Then he was born fighting for his life and Bryan and I didn't care, Down syndrome was not our first concern, getting him breathing on his own and getting his heart fixed became the priority.
For those reasons I think I had a very difficult time getting through 2 pages before my tears would drip onto the typed words. I have heard people say that when parents find out that their child isn't 'perfect' that they grieve the loss of the child they had anticipated. I guess I never understood that until I read Kelle's book and was brought along her emotional journey. I had many a Wednesday night sitting in my car in the church parking lot after I had dropped Rory off at CCE (what I knew as CCD) and reading my book with 2 small packets of tissues next to me. (I had to make sure that I wasn't parked too close to someone else because I was sure that there would be a knock at my window to make sure I was alright, and trust me...it would have been ugly!)
Anyway, this book is amazing, and very personal. It helped me to sort through some of my emotions and heck, sometimes you just need a good cry. More importantly this isn't just a book for parents who have a child with Down syndrome, I think it's for anyone who has had any challenge or struggle. If you don't think so, just pick it up and look at her amazing pictures...stunning!
When Brendan was just a few months past his second birthday I remember seeing a friend posting a link to this blog post on their Facebook page, and I remember how long it took me to read through the entire story.
The blog story was one woman's account of the birth of her second child and the beginning of their journey with Down syndrome. It is raw, and honest to the core. She had not had a prenatal diagnosis, and even though we did I so related to every word that she poured into that blog, and before I closed out that window from her birth story post, I became a follower of her blog.
Kelle Hampton is the author of the blog "Enjoying the Small Things", and she is a great writer, an amazing photographer and the kind of mom that I wish I could be with all of the fun crafty things she does with her girls (very Auntie Jo like, although I don't think she has had the Nativity re-creation..that is still unbeatable!) She is not an expert on Down syndrome, she is an expert on being a mom of two girls (soon to add a boy) and an expert on the ups and downs of having a child with special needs, well about as much of an expert as I am!
When she announced that she was writing her memoir I remember wondering if I really wanted to read it, especially remembering how hard it was to complete reading her post about Nella's birth. The day it came out, I didn't go out and buy it, and I didn't buy it the next day either. Then I kept seeing people post on her blog about how great the book was, and well on day 3 I bought it..
I would love to say that I read the book in one sitting and it was amazing, but that would be a lie. First of all, if I was able to read more than 10 pages at a time that would be a HUGE victory.....no need to go into any stories of the shenanigans of Rory, Brendan and Jack... I made it to page 6, that was it. The words "I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."
I was done. My mind went back to November 2007 standing over Brendan's incubator in the NICU at Wilford Hall in San Antonio. I remember looking at him, his eyes were shut as they were for at least the first week of his life, and he had an EEG machine wrapped around his head to measure his brain activity. I said a million times in my head, and to God, I don't care if he has Down syndrome, I just want to be able to hold him and be his mom, please make him OK. See, it didn't matter that we knew that our child had Down syndrome before he was born, until we saw him, could see the 'tell tale' signs of Down syndrome, I don't think it was going to sink in. Then he was born fighting for his life and Bryan and I didn't care, Down syndrome was not our first concern, getting him breathing on his own and getting his heart fixed became the priority.
For those reasons I think I had a very difficult time getting through 2 pages before my tears would drip onto the typed words. I have heard people say that when parents find out that their child isn't 'perfect' that they grieve the loss of the child they had anticipated. I guess I never understood that until I read Kelle's book and was brought along her emotional journey. I had many a Wednesday night sitting in my car in the church parking lot after I had dropped Rory off at CCE (what I knew as CCD) and reading my book with 2 small packets of tissues next to me. (I had to make sure that I wasn't parked too close to someone else because I was sure that there would be a knock at my window to make sure I was alright, and trust me...it would have been ugly!)
Anyway, this book is amazing, and very personal. It helped me to sort through some of my emotions and heck, sometimes you just need a good cry. More importantly this isn't just a book for parents who have a child with Down syndrome, I think it's for anyone who has had any challenge or struggle. If you don't think so, just pick it up and look at her amazing pictures...stunning!
The great IEP paper trail
At least once every year, Bryan and I have an IEP (Individualized Education Program) meeting, or an ARD (Admission, Review and Dismissal process) meeting, with Brendan's teachers, therapists and school administrators to discuss Brendan's goals and plan of attack for the school year. I remember the very first meeting and how I thought I was going to be sick to my stomach. Brendan wasn't even three yet and we were taking the first steps in transitioning him from Early Intervention to a school based program. Was he ready, was I ready? It was the first step in a very long road, and let me tell you, it never gets any easier.
Our first meeting at his school in Texas had me in tears in the first 5 minutes and I thought that Bryan was going to put his fist through the table. The way that the state of Texas handles an IEP meeting is maddening. We had sit through and listen as they had numbers assigned to Brendan's abilities. Hearing your 3 year old son described by numbers alone just about made me pick him up and leave that place and never look back. A few tissues later, we had made it through the meeting and Bryan and I felt that we were on the right path, Brendan had a wonderful teacher who was going to be with him day in and day out and we were ready to get it going!
This year was no different, although we waived the right to have to hear all of the "numbers" so I didn't have to bust out the tissues quite so soon!
At the end of the meeting we had our ARD plan for the year, new goals and a teacher who is no nonsense! Trust me, this woman is AMAZING and she expects a lot out of Brendan, and so do we. It's time to step it up!
Here is his plan...
It is 44 pages long...WOW! Time to add it the binder of all his other IEP paperwork..
While these IEP, or ARD, meetings are long, complicated and difficult to prepare for as a parent, we are the best advocate that Brendan has. These meetings are great time to get Brendan's team all on the same page because we all want the same thing. We want Brendan to succeed, we want him to have the best tools to become the best person he can be.
Our first meeting at his school in Texas had me in tears in the first 5 minutes and I thought that Bryan was going to put his fist through the table. The way that the state of Texas handles an IEP meeting is maddening. We had sit through and listen as they had numbers assigned to Brendan's abilities. Hearing your 3 year old son described by numbers alone just about made me pick him up and leave that place and never look back. A few tissues later, we had made it through the meeting and Bryan and I felt that we were on the right path, Brendan had a wonderful teacher who was going to be with him day in and day out and we were ready to get it going!
This year was no different, although we waived the right to have to hear all of the "numbers" so I didn't have to bust out the tissues quite so soon!
At the end of the meeting we had our ARD plan for the year, new goals and a teacher who is no nonsense! Trust me, this woman is AMAZING and she expects a lot out of Brendan, and so do we. It's time to step it up!
Here is his plan...
It is 44 pages long...WOW! Time to add it the binder of all his other IEP paperwork..
While these IEP, or ARD, meetings are long, complicated and difficult to prepare for as a parent, we are the best advocate that Brendan has. These meetings are great time to get Brendan's team all on the same page because we all want the same thing. We want Brendan to succeed, we want him to have the best tools to become the best person he can be.
Sunday, October 7, 2012
Fall fun...kind of a big deal
Today we took a trip to the pumpkin patch to officially welcome in Fall! A few momentous things happened....
1. Brendan busted out a loud and clear " NO WAY!" when we asked him if he wanted to go for a ride on the tractor train. It wasn't such a big deal that he declined the ride, but that he did it using a word that he had never said before ...WAY. It took us by surprise...a huge and wonderful surprise!
2. Brendan found the hay stack and wouldn't get out of it! This is the same kid that 2 years ago wouldn't get into a wading pool and hated the touch of grass anywhere on his body! Today, it was a different story. He ran into the hay pile...he threw the hay...he laughed, and he smiled.
1. Brendan busted out a loud and clear " NO WAY!" when we asked him if he wanted to go for a ride on the tractor train. It wasn't such a big deal that he declined the ride, but that he did it using a word that he had never said before ...WAY. It took us by surprise...a huge and wonderful surprise!
2. Brendan found the hay stack and wouldn't get out of it! This is the same kid that 2 years ago wouldn't get into a wading pool and hated the touch of grass anywhere on his body! Today, it was a different story. He ran into the hay pile...he threw the hay...he laughed, and he smiled.
Saturday, October 6, 2012
Down Syndrome ribbon project
This past World Down Syndrome Day, I undertook the project of making Down Syndrome Awareness pins and asking friends and family to wear them on that day, March 21, 2012, and send me a picture of them wearing it.
The amount of pictures that I received was overwhelming and delightful! After a very long time, I finally was able to get them into the scrapbook layout that I was envisioning...
The amount of pictures that I received was overwhelming and delightful! After a very long time, I finally was able to get them into the scrapbook layout that I was envisioning...
Friday, October 5, 2012
One proud mama..
Today at school Rory was able to bring something in for show and tell. You know what she picked?? her medal from our very first Buddy Walk!
She practiced what she was going to tell her classmates, "A Buddy Walk is a fun time for people who have Down Syndrome, like my brother, and their families and anyone who loves them. People with Down Syndrome are just like you and me, they like to have fun!" I love that she gets excited to tell her friends about Down syndrome and of course her very special brother!
At the end of the end Brendan got off the bus sporting this:
Well, looky there Mr. Student of the Day!
Such a proud Mama today.....and everyday!
Be sure to check out some other cool blogs through the 31 for 21 button! Happy Weekend!
At the end of the end Brendan got off the bus sporting this:
Such a proud Mama today.....and everyday!
Be sure to check out some other cool blogs through the 31 for 21 button! Happy Weekend!
A Halloween Lighting
While October is Down Syndrome Awareness month, it is also the long awaited time of the year where we finally get to decorate the house for a holiday!
I give you, our Halloween lighting...
I give you, our Halloween lighting...
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