Kamryn is TWO! Me at 2!

OK, I can't believe I haven't written in a month!!!!!!!!!! I find myself reflecting so much more since I had Kamryn and since I started to blog. I lay in bed and reflect about the great day we had or the new adventure we took and I want to get it down. To remember that moment and what I was feeling. I write it in my thoughts, but I am always to tired to actually sit at the computer and "post". I really wanted to blog as a way for me to capture moments and memories for me (and one day my girls) to look back on. In blogging, versus just writing in a journal, I also hope someone could get a glimpse into our lives and see a child with Down syndrome, as just a child. I hope that maybe, like tossing a stone into a lake and causing a ripple, one person who has never met someone with Down syndrome will "meet" Kamryn though my blog. That any stereo types they had, or fears, or misunderstandings would be shattered. Like the stone, I hope that one person would share with someone else and the world will be a better place for my little girl to grow up in. It sounds crazy, but it's what I hope for.

There is so much I need to share, as we have had a wonderful summer!!!!!! Not only have we had some great vacations and adventures, but.........

Jaden graduated from the Jr. Life Guard program through the state beaches. Which had us at the beach daily for three weeks. (I have to say I was a little beached out after that).

Naomi learned to ride a two wheel bike (she just asked Diondray to remove the training wheels and then road off, there was no teaching involved)!

Brynn, well she just continues to crack us up with her not so 4 year old responses....the other day she said,
"mom, my head hurts"
me, "what does it feel like?"
her, "I just told you, like my head hurts"
OK, silly question on my part.

Kamryn, well she is growing so fast and tomorrow she is TWO!!!!!!!!!!!!!!!!!!!!! We had her birthday party on Saturday and it was such a relaxing evening with family and friends. Pizza, blue berries and strawberries were served, as those are some of her favorite foods! She also loves Barney and enjoys singing times w/Alex and Leah. She loves books (just like all our girls) and will sit and flip though a book on her own or in your lap while you read to her. She loves to open drawers and pull everything out, cabinets too. Her receptive language is, well, she has it and understands everything I would expect a two year old to. She is very verbal too.

Words she says:
mom
daddy
Brynn
hot
cold
up
down
duck
dog
cat
hat
no
Barney
sauce
grapes
on
bath
that
stuck
tight
eat
hi
bye
sock
shhhhh-that might not be considered a word
Auntie
chips
goose
book


Words she says, but not clear:
please
Naomi
Jaden
grandma
strawberry
blue berry
cake

sings: only signs when asked, she is more verbal
apple
cracker
cookie
eat
candy
more
cereal
ice cream
cat
cheese
cold
hot
bath
mom
dad
please
thank you

She walks, kind of runs.

She loves "duck-duck-goose"

Loves to take a bath-we don't even say the word or she will say and sign until you just give her one!

She will go into the kitchen, get a sandwich bag out of the drawer, go into the pantry and call me to come and fill it.

She puts her purse (or any purse) over her shoulder and will kiss me good-bye, then is "off" somewhere in the house.

I could go on and on.

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


The first year of Kamryn's life was, to date, the hardest time in my life. It brought me to the edge of the cliff. I stood there and much of me wanted to jump. The pain was horrible. I wanted a "go back"..........I wanted to go back to who I was before her diagnosis. I wanted to feel like I did before my life had shattered. I wanted to go back so BAD the hurt was excruciating. I wanted to take Jaden, Naomi and Brynn and run. I knew there was no "go back" and I didn't want to go forward. It was a tough year.

The second year of Kamryn's life, I have grown and transformed more in one year, than I have my first 34. I have learned more about who I "thought" I was and who I want to be. I have experienced unconditional love in its purest form. I have discovered the beauty of truly living in each day, which can require constant effort-that is so worth it. There is so much I have learned and discovered, however I'm at a loss for words to express it. I know the minute I lay down to go to sleep the words will flow. For now, the only thing that is running through my mind is the song I sing to my girls at night before bed (I am no singer, but they love it:)....the words are:

I'm the luckiest mommy in the world, because I have four of the most amazing girls. My Jaden, Naomi, Brynn and Kamryn.

Pause Button

Now that I have two girls in school, summer feels like the pause button. When school is in session, the Monday - Friday, up, dress, breakfast, out the door, forces us into a constant go. I enjoy that part of our life, it brings structure, dinner at 5, soccer, basketball, reading before bed etc. But summer, it is a wonderful pause.

I love not having to be up and out the door in the morning. I love that we can head to the beach, play in the backyard, stay in our pajamas for the day.....!


We are enjoying the beach













We are enjoying our backyard.
Notice Kamryn pointing to the trampoline







We are enjoying our kitchen table.






We are enjoying being on PAUSE!!!!!!!!!!!!!





Pause is good....we will savor this until it is time to press play! :)

Thyroid disease?!

It stung and burned a little. I even got mad. I got a call last night from our Doctor. Kamryn has her blood drawn every 6-8 weeks due to concerns related to her extra chromosome. There are several "things" we are monitoring and her Thyroid was one of them.

She now officially has Thyroid disease. Her numbers have been increasing for about 5 months, so it was not a huge surprise. This is really not a big deal either. She will take medication to stabilize it and she will be fine. It's the bigger part that makes me MAD! That she now has something on that "list!"

There is a list of medical concerns when you have a child with Down syndrome. They so graciously gave me the list verbally on day 2 of her life. I don't remember most of it, except the big ones like - she is more likely to get cancer.
I am also mad because my other girls don't have a list. I am GRATEFUL they don't, but I don't want Kamryn to have a list either. I don't want her to get sick, teased, treated different, just as I don't want that for any of my daughters. The perfect life, that is what I wanted.....

Shortly after Kamryn was born, and I was still lying on the ground from the emotional trauma, someone asked me if I thought I was going to have a perfect life. Well, the question hurt, because you know what? I did.

All those things I read about: Husbands dying, children getting sick, losing your house to a fire, becoming injured in a car accident...I never thought those things would happen to me or my family.

Naive, I know.

During the first year of Kamryn's life I became fearful of everything happening. It was like someone had thrown cold water on my face and I realized---WOW, things do happen and they can happen to me!

The fear is long gone. I realized and accepted that life happens and it is not always what you plan, wish for or even want. But it happens. And most important in life, than what happens, is how you deal with and live it.

So, I was mad last night. For about 15 minutes. I let myself be mad, angry and a little sad. Because, well, Kamryn does have Down syndrome and that may mean we will have to deal with some of those not so pretty things in life. I won't wait for those things to happen though. I am going to enjoy right now, today.

I am going to embrace my life and hold on tight to it, because it is a beautiful life and I love it. And we had a beautiful day today and I expect to have a beautiful day tomorrow too!

Simple things

I love the simple things in life.....like side walk chalk. And fishing for rocks?:)

Kamryn's Krew in Pictures & Happy Tears

We all have those hysterical moments when we laugh so hard we cry (that's a good laugh) or the moments when you are overwhelmed with happiness and joy and you tear up and cry. Happy tears, they are wonderful.....I had happy tears on June 19th at our first ever Buddy Walk for Down syndrome.

One of the items on my list of fear and anxiety after Kamryn's diagnosis was: How would our family and friends treat us? How would they treat her?.....as crazy as it seems now, it was something that I feared. I was having such a hard time dealing with the diagnosis (and what it might mean for my family). I wondered if our friends and family would too. Not that I don't have the most amazing family and friends (because I do), but that was one of the many fears on my list. (I am happy to say I have just about crossed out all the items on that fear and anxiety list, none have flourished. I am actually thinking about burning it :) ).

From the beginning, my family and friends have been nothing but supportive, loving and completely unfazed by Kamryn's diagnosis. They have just been there. PERIOD. They are amazing and they ROCK!

Several of our family and friends were able to come out and support our first Buddy Walk....thank you is not enough to say, but it is all I have. THANK YOU!!!

It was a beautiful day.....the sun was shinning, the kids did crafts (and played), awareness about Down syndrome reached many and we were surrounded by family and friends.

Kamryn's Krew


my idea was to make T-shirts, my idea waited
until the last minute....Diondray and I were up until
2 am..who knew it took so long to iron 25 T-shirts?:)



MY GIRLS.....I love them so!





Auntie Vicky







Best Friends





Wiped out, in her Grandma's arms!