Down syndrome Awareness Month--- 31 for 21, I MISSED a day!

I can't tell you how disappointed I am that I did not post yesterday, October 7th. I knew posting everyday would be a challenge. I don't have time during the day and once the girls are in bed I have about 2 million things to do. However, the 31 for 21 campaign is such a great idea and I wanted to be part of it!

So, my big mistake.........last night while I was tucking Brynn into bed, she asked me to lay down with her. I never got back up! Well, I did get up when I felt someone tapping me on the shoulder and I heard Jaden's voice, "Mom, I'm waiting for you to come tuck me in." I was in such a deep sleep I sat up and said "Where am I?" It took me a few seconds to realize I was in Brynn's room. I followed Jaden into her room tucked her in and from there went straight to bed. I didn't even wash my face.

This morning I mentioned to Diondray how disappointed I was that I didn't post yesterday and he said, "I knew you would be and I was going to post something for you, but I didn't know your password." Isn't he the greatest?! He knows my password now.


.................................................................


Yesterday Kamryn said, "elcome". (your welcome)

She handed me something and I said, "Thank you" and she said, "elcome."

I paused, said "thank you" again and she said "elcome" and walked off.

I stood there with a HUGE SMILE ON MY FACE. This girl, she never ceases to amaze me. I must say, all my girls amaze me, however this month it's mostly about Kamryn. BECAUSE, as you know, it's Down syndrome Awareness Month. The strange thing is, the fact that Kamryn has Down syndrome means less and less to me everyday.

At first those two words were overwhelming. When I heard them in the hospital for the first time, I couldn't breath. (I wrote about it a few months back). I remember lying in bed thinking to myself, the statistics are 1 in 800 or .00125% that this could happen, so how did it happen? Before I knew the statistics I just laid in bed thinking, how did / does this happen? Today, I don't even care about the statistics, any of them. Especially statistics about my daughter. Statistics, don't mean a thing to me.

Today, Kamryn said "elcome" statistics say she probably wouldn't do that at this age. I say (enter your choice word here) the statistics. :) Statistics don't know me, my family or my daughter. Forgive me if I sound bitter. The medical community and the outdated stereotypes / statistics they gave me left a bad taste in my mouth.

Not anymore, she has been soooooo sweet!!!!!! :)


Such the big girl.....









Diondray can't figure out how we left the house to get tissue and trash bags and came back with this.......





Look at that face :( I just love this picture! Daddy said, "Kamryn, no touching the fish!" She was so mad!

Down syndrome Awareness Month--- 31 for 21, Facebook

I don't really love all the technology we have today. It took me forever to start using email. I only did that because I was required to for work. I just recently started using my ATM card. While shopping at Target the other day, I was frantically digging through my purse and when I pulled out my check book, Diondray look at me and said, "You know your the only one that still writes checks?" We both started cracking up.....then he accused me of holding up the line, because filling out a check takes a whole few seconds longer than swiping the card. I have switched to the card, but not because of him. :)

I will say that as much as I love my iPhone, I can't stand it. It is way to much information to have in the palm of your hand. I realize how much easier, more efficient and effective these tools are, but like everything else you need balance. I think we are actually working more, because we never turn "it off." I think we need to pay more attention to what is around us, and less attention to what's in our phone......

I'm diverting from what I wanted to share about today. Today I reluctantly joined Facebook. Mainly, to SPREAD AWARENESS, 31 for 21 baby!


Sharing the joy.....

Down syndrome Awareness Month--- 31 for 21, I thought you had to be over 40!

Four pregnancies and not one Doctor ever mentioned the words Down syndrome to me. Ever. I can remember when I was about 17 weeks pregnant with Jaden and the Doctor quickly discussed the AFP testing. I didn't know much about the test, other than it often gave false positives. I was 26, healthy, never thought twice about it when I declined. He did not push it and that was that. He delivered both Jaden and Naomi. I thought he was an amazing Doctor.

He retired and I had a different OB for Brynn. I did not love him, so when I got pregnant with Kamryn I went to someone else. Three Doctors, four pregnancies and none of them blinked when I declined the tests.

Looking back I find it strange that not one Doctor encouraged me to do the AFP. I realize the test often gives false positives, but it can also give you some very important information about your pregnancy. If you receive positive results you can have further testing to determine if the results are accurate or not. I wonder if my doctors were not that concerned because of my age? My health? I know I am not the only one who has (had) this misconception about being 40. When people discover Kamryn has Down syndrome they are often surprised. They ask my age (not in an intrusive way, but because they are genuinely surprised).

I was surprised, shocked and in disbelief when I heard, "your baby has some characteristics associated with Down syndrome." I realize how naive and crazy this sounds now, but I had no idea that at 33 years old - I could have a baby with Down syndrome.


Fact: 80% of babies with Down syndrome are born to women under 35.

Fact: For a time, after Kamryn was born, I wished I had done the testing.

Fact: I'm so glad I didn't.

I'll write more about those last facts later...............

Down syndrome Awareness Month--- 31 for 21, this is harder than I thought!

Posting every day is much harder than I thought. The pressure is on. By the end of the day, I'm tired and have so many other things to do! BUT, it is for a good cause.

When I sit here at my computer there are many things running through my mind. I am not sure what direction to go. I want to be short and sweet, because I am tired. I want to be meaningful, because it ts Down syndrome Awareness Month. I don't really want it to be about Down syndrome, because our life is not about Down syndrome. I do want it to be about Down syndrome, because if Kamryn didn't have Down syndrome I would not be blogging.

Can you feel my frustration?:)

So, here is something that happened today.......

At lunch Kamryn was in her high chair and she kept pointing to the counter repeating "own" "own". That was the only word I could make out. Looking at the counter, I couldn't figure out what she wanted. This is happening more often when she starts to say or use words we are not familiar with her saying. Since I could not determine what she wanted, I began to remove her tray and said, "Kamryn, show me what you want." This idea did not work. She was not done eating and pulled her tray back towards her.

I knew she wanted something specific because she was repeating the same word "own, own" and when I would say, "do you want (throw in a word)?" She would say, "nooooooo." Then out of the corner of my eye, way at the other end of the kitchen, on the counter, I spotted them.



A package of ice cream cones, not even in the box. Just a package of cake cones laying on their side. (She had pulled them out of the box earlier that day and I set them on the counter.)

I said, "Kamryn, do you want an ice cream CONE?" As she shook her head up and down she said, "own, own".

New word for the day, CONE. We are working on the C.


Not only was she busy using new words today...........






Can I ground her for this? :)

Down syndrome Awareness Month--- 31 for 21, "Yes and No"

There are developmental delays with Down syndrome. They vary from child to child. Speech is one area that is delayed. Our older girls developed a vocabulary by 1 and by 2 were speaking full sentences and telling stories. Kamryn was 2 in August and has developed a vocabulary, however I know she is "delayed" in her speech. I do compare her development to my older girls. I am not "comparing" her, but I do have three other children. I have somewhat of an idea when milestones are met, so I know where "typical" is. She can speak clearly over 50 words (maybe more). I posted about this in August when she turned two. I could add more to that list now. She sometimes will say two words together...."mom, hot" for example, when I put something hot on her plate.

She has said the words "yes" and "no" for sometime. Lately, she has become very dramatic with those words. We love to ask her questions:

us, "Kamryn, do you want to take a nap?"

her, "Noooooooooo" she will say (emphasis on the O and shaking her head appropriately).

us, "Kamryn, do you want a cookie?"

her, "Yesssssss!" she will say (emphasis on the SSSSSSSSSSSSSSSSSS).

us, "Kamryn, do you want a carrot?"

her, "NOOOOOOOO!" (shaking her head rapidly and even pushing my hand away if it appears I am handing her one!)


And if she really wants to get our attention, she will text us her response :)






Delays don't mean a thing.

Down syndrome Awareness Month--- 31 for 21, a day in our life

For me, fear of the unknown was just one reason I was emotionally paralyzed after her diagnosis. I was able to compose myself during the day and I had a few friends and acquaintances say, "you are handling this with so much grace." I took that as a huge compliment and then I would think.....if they only new.

At night, I sobbed. Almost every night. I stopped sobbing at 5 months. I honestly think I just ran out of tears because I didn't start to feel again until she was about one.

I went to worst case scenario with her....Will she walk? Will she talk? Will she get cancer? Will she be sick? Will she listen? What will our life be like? How can I do this? How can I raise my three girls and a baby with special needs? How?

The feelings and fear were overwhelming. Over time, many of my fears have diminished. Actually, most of my fears are just rational now. I am fearful of some real life situations we may find ourselves in, but I realize that life is happening one day at a time. We will cross any bridges we need to, when we get to them. For now, I just enjoy each day.

-----------------------------------------------------------

So, in the mornings I usually shower before I get Kamryn out of her crib and before anyone else is up. Today, the aroma coming from her room was so strong that I couldn't leave her in that condition or place. After about 25 wipes she was fresh and clean and I figured she could hang out in my bathroom while I took a quick shower. I brought in some books and toys. They worked for most my shower.

Just as I was getting out I see this......



I panic, because in the split second I can see her, I just know she is up, on the stool and that is not safe!

Then my eyes move up to this......





OK, I jumped out of the shower, grabbed my phone off the night stand and started to take pictures. This moment, this was one of those moments! The fear I mentioned, sometimes it comes back and it is irrational....this moment, this wipes that fear right of the table. It makes me balk at all the negative and stupid (for lack of a better word) things I have read, heard and been told about Down syndrome. It almost makes me want to write a book. This baby, my daughter, she has Down syndrome and she is amazing! TAKE THAT!


Today is Saturday, so of course we were at the soccer field. From 8;30 - 3:00.





She is the BEST mom and Grandma in the WORLD!






I got a picture of Kamryn kicking the ball. I may just add this to my book! :)






The day was beautiful....




We ended with pizza. Isn't she just toooo cute! - A day in our life.

Down syndrome Awareness Month--- 31 for 21

I knew October was Down syndrome Awareness Month. I knew about 31 for 21, meaning in October you blog every day (31 days) to support/spread awareness for T-21 (Down syndrome). Hence, 31 for 21.

I wanted to write something special today. To support this campaign to spread awareness about my daughter's syndrome. BUT my day has gone like this....

Dropped of Jaden and Naomi at school.

Took Kamryn (with Brynn) to speech Therapy group. (This is new to us, I will share later).

Home w/Brynn and Kamryn we baked some chocolate cookies. From scratch. They are great.

Clean up the baking mess. Check my work emails to make sure there is nothing pressing, it's Friday and the weekend has really started :)!

Quick Lunch for the three of us.

Off to school, taking Fudge bars to Jaden and Naomi's class to honor the 90 degree weather we had all week.....

Home with an additional 3 kids, because we LOVE playmates.

Soccer practice.

and now, Diondray is waiting, as we have a date.........


So, I HAD to post something today. It is Down syndrome Awareness Month.


Be Aware, it is a beautiful life......................













I will be back every day (I hope)!