Today is World Down Syndrome Day...and it wasn't something I really thought about until I saw several of my friends on Facebook updating their status and changing their profile picture. That prompted me to change my profile picture to a photo of Kamryn and I. I know every year on March 21st, it is World Down Syndrome Day. I have known this for 5 years, but it slipped my mind.
I did not forget, but today is also Friday (which is exciting because we get to skip the homework routine right after school) and I literally just got back from an incredible 4 day trip to Boston with Diondray (getting in at 1:00 am this morning). Therefore, after I got out of bed, excited to see my girls for the first time since Sunday, in the midst of all the hugs, getting ready for school and talking about my trip with them...World Down Syndrome Day did not come up, get mentioned or talked about.
March 21st
3/21
Three, twenty-first chromosomes
3-21
Trisomy 21
An extra chromosome, 3, 21st chromosomes
For some reason thinking about World Down Syndrome Day took me back to when Kamryn was 4 days old. Diondray and I were in our pediatrician's office, who since Jaden was born has been all my girls pediatrician. Doctor B does not always display the best bed-side manners, can be extremely opinionated and has rubbed me the wrong way on several occasions. However, with that being said, she is a great Doctor. She was holding Kamryn and reaffirming what we already knew, Kamryn had Down syndrome. She knew that the diagnosis was a huge blow to me and that I was broken and she said, (with her hand resting on my shoulder), "Andrea, you can do this. I know you are great parents and will be great parents for Kamryn. I know your family can handle this. I know that you will become a great advocate for Kamryn. I know that you are going to be fine and Kamryn is going to be fine. You will be better than fine."
Did I mention that I didn't really get along with her, but I believed she was a GREAT doctor, so I tolerated her? I can remember my inner temperature rising and I was getting angry as she continued to say thoughtful, encouraging words to me (and Diondray). Are you kidding I thought!!!! The last thing I wanted to hear was that I would be a GREAT advocate. I did not want to be an advocate. Not for this.
That was a little more than 5 and 1/2 years ago.
She was right. (And for the record, even though she is still very opinionated and we don't always agree, I have a very special place in my heart for Dr. B because of that moment in her office). At times I feel guilty because I'm not really advocating or doing anything great to generate awareness or make the world better for people with Down syndrome or for people with disabilities in general.
Which brought me right here today. To my blog.
Kamryn has Down syndrome. Most of the time it's not something we think about, talk about, worry about or are concerned about. Not because it's something we ignore, but because it's something weaved into our lives and it doesn't stand out or feel different for us.
It's Friday, it's March 21st and after school I will tell my girls that it is World Down Syndrome Day....
and we may do a little something extra because of that!
Life is fine. Life is beautiful. Life is what you make it.
Friday, March 21, 2014
Sunday, July 21, 2013
Graduation!
When I posted last, on May 4th, my intention was to post weekly. About a week later I sat down bursting with excitement and wanting to share about many of the moments we had been celebrating. The month of May was an extremely busy month for us. Well, all months are busy for us, but this one had many extras. We had a birthday, anniversary, promotion and a graduation! I sat down and began to write and then my computer started acting up. I came back a few times over the past few weeks and continued to have issues with it. Today, I sat down to see if it was working (I have specifically been having trouble with the blogger program) and it was!
Since we are right in the middle of an amazing summer I really want to write in detail about our vacations, Brynn learning to roller skate, Kamryn's summer school experience and so many other things we are doing. However, I have to drag myself back to the month of May. I say drag because the reality is I can't remember what I wore yesterday so May seems so long ago. BUT, my blog started as an advocacy for Down syndrome, therefore I can't let Kamryn's graduation go by without posting about it!
Yes, Kamryn has graduated from preschool!
I often have the desire to take myself back to the first year of Kamryn's life when she celebrates or reaches a milestone. I don't want to forget how hard her first year of life was for me, how difficult it was to accept her diagnosis, how scared I was, how I cried myself to sleep for almost a year. I don't want to forget, because my life has been impacted beyond words. It's more beautiful than I ever could have have imagined. It is brighter and clearer and simpler. And for me, because at one time it hurt so bad, the little things are 100 times better. So imagine what the big things feel like! My smile is just bigger. I remember questioning: Will she walk? Will she talk? Where will she go to school? Will she ride a bike?
I don't question anymore.
I just live.
And it feels so good.
Graduation May 2013:
She has been able to ride a three wheel scooter for quite some time. She can also ride a bike with training wheels.
She can get into a lot of trouble. And she thinks she can hide from me...
We have had her in private speech since she was about 3 years old. (She has received speech services since she was an infant through government programs, however we added to that with a private speech therapist). .
Kamryn will start kindergarten in the fall. We have decided to put her in a communicative handicap class. (That is what the district calls it, it is for children with communication delays). She will also be in a "regular/typical" kindergarten class room. When school starts and we are able to observe the classrooms, we will determine how much time she will spend in the "regular/typical" class room and how much time she needs to be in the communicative handicap class room. Diondray and I want to give Kamryn the best possible environment for her to learn, develop and grow.
The radio is blasting in the other room and I can hear the girls dancing to the CD from the movie Let it Shine...I'm going to go join them. I love summer!!!!!
Since we are right in the middle of an amazing summer I really want to write in detail about our vacations, Brynn learning to roller skate, Kamryn's summer school experience and so many other things we are doing. However, I have to drag myself back to the month of May. I say drag because the reality is I can't remember what I wore yesterday so May seems so long ago. BUT, my blog started as an advocacy for Down syndrome, therefore I can't let Kamryn's graduation go by without posting about it!
Yes, Kamryn has graduated from preschool!
I often have the desire to take myself back to the first year of Kamryn's life when she celebrates or reaches a milestone. I don't want to forget how hard her first year of life was for me, how difficult it was to accept her diagnosis, how scared I was, how I cried myself to sleep for almost a year. I don't want to forget, because my life has been impacted beyond words. It's more beautiful than I ever could have have imagined. It is brighter and clearer and simpler. And for me, because at one time it hurt so bad, the little things are 100 times better. So imagine what the big things feel like! My smile is just bigger. I remember questioning: Will she walk? Will she talk? Where will she go to school? Will she ride a bike?
I don't question anymore.
I just live.
And it feels so good.
Graduation May 2013:
She has been able to ride a three wheel scooter for quite some time. She can also ride a bike with training wheels.
S
She can get into a lot of trouble. And she thinks she can hide from me...
SWe have had her in private speech since she was about 3 years old. (She has received speech services since she was an infant through government programs, however we added to that with a private speech therapist). .
Kamryn will start kindergarten in the fall. We have decided to put her in a communicative handicap class. (That is what the district calls it, it is for children with communication delays). She will also be in a "regular/typical" kindergarten class room. When school starts and we are able to observe the classrooms, we will determine how much time she will spend in the "regular/typical" class room and how much time she needs to be in the communicative handicap class room. Diondray and I want to give Kamryn the best possible environment for her to learn, develop and grow.
The radio is blasting in the other room and I can hear the girls dancing to the CD from the movie Let it Shine...I'm going to go join them. I love summer!!!!!
Saturday, May 4, 2013
Its been awhile!
I can't believe the last time I posted was over six months ago!.
Actually, I can believe it.
I swear this blog is like exercise!
I think about it all the time.
It's something I wish I did a few times each week.
However, at the end of a busy day, I am just to tired.
And another day passes without a post...or a workout!
Our days are so full, that sometimes it is easy to forget the "little" moments or the details of the "big" moments. That is one reason I enjoy posting/writing. It gives me a chance to pause and reflect on many of the amazing things that we have done, experienced or just remember the feelings I was having during a specific time.
Looking back at the last time I posted (October 3rd 2012) until now, we have had a tone of wonderful, challenging, scary, happy and meaningful moments.
All the usual: Halloween, Thanksgiving, Christmas, New Year's, three birthday celebrations, Easter, soccer season ended and basketball started (and ended) and a few fun vacations...
and the not so usual: Kamryn changed schools, 5 days in the hospital with Naomi. She went from being sick (we thought she had the flu) to getting really sick and having an emergency appendectomy! Which resulted in her being out of school and home for four weeks recovering! A visit from my dad who came unexpectedly from Italy. Diondray getting promoted! :) So much has happened over the last 6 months...
I had a moment, not to long ago with Kamryn. A moment that for most people raising a 4-year old, would pass by unnoticed. I know becasue I have already been through the "4-year old stage" with three girls and I never noticed this.
Language.
As soon as your baby begins to talk, they go from one word to two, then sentences in a matter of months. You don't even think about the development of language and how challenging it is. Because for most, it happens naturally, quickly and without thought.
Down syndrome can cause language delays. This occurs on the physical level, due to low muscle tone and the development/processing level. We feel very fortunate that we have been able to provide Kamryn with speech therapy since she was about three months old. The other day her and I were in the car and I turned the radio down (for some reason I am not sure why), from the seat behind me I hear,
"Mom, please turn up the radio, I like this song!"
Me, as a huge smile begins to surface on my face, begin to count to myself, one, two, three...wow a 10 WORD sentence. UNPROMPTED!!!
With the huge smile (still on my face) I turn the radio up and hear Kamryn singing along to the song...
"We are never, ever, ever, getting back together" (by Taylor Swift)
Ahhhh, that moment had me smiling all day!
It makes me smile even now.
Easter 2013
Thursday, October 4, 2012
Day Three - it's after midnight :(
which means it's day 4! But I am still counting this as day THREE!
Last night Jaden asked me to lay down with her.
I did.
And fell asleep.
I woke up suddenly and realized I had not blogged and it was only day 2 of the 31 for 21 campaign! I could not miss day 2! I dragged myself out of her cozy, warm bed and posted.
Tonight, after a long day at work, homework, soccer practice, dinner, getting the girls to bed, paying bills (wow, as I type this the day sounds so unexciting and uneventful)!
OK, I was just going to be short and sweet, because I am tired, but reading that last sentence about my day did not truly describe how great it was. Yes, all the above did happen, but there were so many sweet, special, joyful moments too! I took a break from work and picked up Kamryn from school today (my mom ususally does this). She was not happy to see me at school and I was greeted with her usual stomping of the feet and chanting, "Grandma pick me up, Grandma pick me up!" I am not sure how you are envisioning this scene, but it actually cracks me up. It makes me feel so blessed that she loves her grandma so much! The teachers almost always respond, "be nice to your mom" and after a few minutes she is fine. I swear those teacher must think I am some big Ogre at home! But I can't compete with grandma, and I don't try to!
I took her to McDonald's, something my mom usually does (OK, I was trying to compete:). This propelled me to the top of her likeable list and I was happy. :)
Another sweet moment, Jaden came home with 100% on her spelling test! That was awesome! Good grades always excite this mama!
I took Naomi to soccer practice and got to sit on the grass with Brynn while we did her homework. Watching Naomi practice and sitting with Brynn. Two wonderful ways to spend the evening.
It was a usual day sprinkeld with wonderful moments.
Life is beautiful.
Sleep is too, good night! :)
.
Last night Jaden asked me to lay down with her.
I did.
And fell asleep.
I woke up suddenly and realized I had not blogged and it was only day 2 of the 31 for 21 campaign! I could not miss day 2! I dragged myself out of her cozy, warm bed and posted.
Tonight, after a long day at work, homework, soccer practice, dinner, getting the girls to bed, paying bills (wow, as I type this the day sounds so unexciting and uneventful)!
OK, I was just going to be short and sweet, because I am tired, but reading that last sentence about my day did not truly describe how great it was. Yes, all the above did happen, but there were so many sweet, special, joyful moments too! I took a break from work and picked up Kamryn from school today (my mom ususally does this). She was not happy to see me at school and I was greeted with her usual stomping of the feet and chanting, "Grandma pick me up, Grandma pick me up!" I am not sure how you are envisioning this scene, but it actually cracks me up. It makes me feel so blessed that she loves her grandma so much! The teachers almost always respond, "be nice to your mom" and after a few minutes she is fine. I swear those teacher must think I am some big Ogre at home! But I can't compete with grandma, and I don't try to!
I took her to McDonald's, something my mom usually does (OK, I was trying to compete:). This propelled me to the top of her likeable list and I was happy. :)
Another sweet moment, Jaden came home with 100% on her spelling test! That was awesome! Good grades always excite this mama!
I took Naomi to soccer practice and got to sit on the grass with Brynn while we did her homework. Watching Naomi practice and sitting with Brynn. Two wonderful ways to spend the evening.
It was a usual day sprinkeld with wonderful moments.
Sleep is too, good night! :)
.
Tuesday, October 2, 2012
Day Two-Waiting for the bus.
I can remember, when I heard other mothers sharing how their children (preschoolers) rode the bus to school, I thought they were crazy!
My thoughts: None of my children have ever ridden a bus to school and neither will Kamryn!
This morning (October 2, 2012) waiting for the bus. (Maybe I will write more about this decision later. I am happy to share I am much less judgmental about the choices other people make for their families...lesson #152 I have learned over the last 4 years.)
Field trip today with Brynn's class. We walked to the local aquarium.
It was a beautiful day. Life is beautiful.
Monday, October 1, 2012
Down Syndrome Awareness!
I can't believe it's October 1st! This means we are heading into the holiday season and the New Year is right around the corner! I don't want to get ahead of myself, and trust me I consciously try to live in the moment-day-by-day, but our annual Halloween party will need to be planned soon, then Halloween, Thanksgiving and Christmas will arrive (plus a million other great days in between) and boom, 2013.
What forced me here tonight is something very personal. Anyone who reads my blog is aware of my (our) story....our youngest daughter, Kamryn has Down syndrome. After almost drowning in grief the first year of her life (do to her diagnosis), I am back to being on top of my world. Embracing my life, soaking up the joys that exist in each day, taking the challenges in stride and just feeling incredibly blessed. And HAPPY.
It's good. It's really good. In fact, I don't want to brag, but my life is pretty amazing! One (of the many) heartaches I had during the first year was that our life was no longer normal. That we were now different from everybody else. And this wasn't a good different. This was an uncomfortable different.
I am no longer uncomfortable with my life, and sadly, it was never my life I was uncomfortable with. I was uncomfortable with Down syndrome.
October is Down syndrome Awareness Month. The blogging community challenges those of us to a 31 for 21 campaign. Post everyday on your blog (31 days), to spread awareness about Trisomy 21 (the medical term for Down syndrome). I hesitate to jump into this challenge, because as you can see by my blog I don't even post weekly! But I sit here tonight and plan to participate. I am reminding myself, just like I remind my girls, "Just try your best and we are proud of you!" I will try my best to post something every day to join in the effort to spread awareness.
My life is not normal. Read the definition and you won't want your life to be normal either..."conforming to the standard or the common type, average."
This is definitely not normal. :) I know the last thing I said when I stepped out of the car was, "Stay in your car seat and keep your seat belt on!"
Please take a minute everyday to visit my blog and share it with someone. Down syndrome awareness, PASS IT ON!
What forced me here tonight is something very personal. Anyone who reads my blog is aware of my (our) story....our youngest daughter, Kamryn has Down syndrome. After almost drowning in grief the first year of her life (do to her diagnosis), I am back to being on top of my world. Embracing my life, soaking up the joys that exist in each day, taking the challenges in stride and just feeling incredibly blessed. And HAPPY.
It's good. It's really good. In fact, I don't want to brag, but my life is pretty amazing! One (of the many) heartaches I had during the first year was that our life was no longer normal. That we were now different from everybody else. And this wasn't a good different. This was an uncomfortable different.
I am no longer uncomfortable with my life, and sadly, it was never my life I was uncomfortable with. I was uncomfortable with Down syndrome.
October is Down syndrome Awareness Month. The blogging community challenges those of us to a 31 for 21 campaign. Post everyday on your blog (31 days), to spread awareness about Trisomy 21 (the medical term for Down syndrome). I hesitate to jump into this challenge, because as you can see by my blog I don't even post weekly! But I sit here tonight and plan to participate. I am reminding myself, just like I remind my girls, "Just try your best and we are proud of you!" I will try my best to post something every day to join in the effort to spread awareness.
My life is not normal. Read the definition and you won't want your life to be normal either..."conforming to the standard or the common type, average."
This is definitely not normal. :) I know the last thing I said when I stepped out of the car was, "Stay in your car seat and keep your seat belt on!"
Please take a minute everyday to visit my blog and share it with someone. Down syndrome awareness, PASS IT ON!
Tuesday, August 21, 2012
Dreading it.
I'm dreading tomorrow. Only a tiny bit, but at this moment the dread is all consuming. The alarm clock will be sounding off early, five days a week for the next 10 months. With work, I have had to be up and out, but now we all have to be up and out the door and going well beyond 5'oclock.
I seemed to appreciate this summer so much more than before. The girls are getting older and all of them are playing sports and involved with extra curricular activities. Not only are we out the door early to get to school (and myself to work), we get home and have homework, (throw in a load of laundry), head to practices, (put a meal together), read, (fold laundry), shower and bed.
I considered putting a hold on all sports and extra activities this year. The days are flying by, the weeks turning into months and I now have a 6th grader, 3rd grader, 1st grader and preschooler. My babies are no longer babies and I feel like I don't see them enough, spend enough time with them and all this other "stuff" has taken over and intervened with our time together. School is consuming enough, then add all the extras. I am not sure why I didn't pull them out of soccer (or basketball or swimming or what ever the seasonal sport is), why I want them in music lessons, why I feel guilty if they don't get their 30 minutes of reading in each day.
But until I stop all the extras...instead of feeling overwhelmed with it, I have decided to wake up and move through the day with joy and appreciation for it. I take turns being at each of their practices, I sit and read with them (I enjoy 30 minutes of a good book too), and I have realized that dinner can be fresh fruit and toast (and everybody is still happy).
What I really dread is missing them....
I seemed to appreciate this summer so much more than before. The girls are getting older and all of them are playing sports and involved with extra curricular activities. Not only are we out the door early to get to school (and myself to work), we get home and have homework, (throw in a load of laundry), head to practices, (put a meal together), read, (fold laundry), shower and bed.
I considered putting a hold on all sports and extra activities this year. The days are flying by, the weeks turning into months and I now have a 6th grader, 3rd grader, 1st grader and preschooler. My babies are no longer babies and I feel like I don't see them enough, spend enough time with them and all this other "stuff" has taken over and intervened with our time together. School is consuming enough, then add all the extras. I am not sure why I didn't pull them out of soccer (or basketball or swimming or what ever the seasonal sport is), why I want them in music lessons, why I feel guilty if they don't get their 30 minutes of reading in each day.
But until I stop all the extras...instead of feeling overwhelmed with it, I have decided to wake up and move through the day with joy and appreciation for it. I take turns being at each of their practices, I sit and read with them (I enjoy 30 minutes of a good book too), and I have realized that dinner can be fresh fruit and toast (and everybody is still happy).
What I really dread is missing them....
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