World Down Syndrome Day 2013

Today, 3/21, is a day to celebrate and recognize those who have three copies of the 21st chromosome (get it? 3/21?); also known as Down syndrome. It is hard to believe that three years ago I had no idea a day like today existed. My knowledge of Down syndrome was limited, and never in a million years did I think one of my own children would have Down syndrome.

It is amazing where life takes us, paths that we may not ask to be brought down, but yet we begrudgingly go because we have no choice. It is also amazing how sometimes as we make our way down these paths we learn things along the way; hidden traits about ourselves and who we are and what we are capable of, as well as what is really important in life.

And yet, as we travel down these paths, we are at times reminded of those early days when things were oh so very new, and very, very hard. We are also reminded that even though we have accepted this path, it is not always easy.

But most of the time, acceptance of this new road is good. We focus on what we have learned, and where we are going.

I am so, so proud to be Charlotte's mom. She has taught me more in the past three years than I have learned in a lifetime. This path isn't so hard anymore, and though in a lot of ways we are just getting started, I no longer fear where we are going.

So today (tonight actually...a little late on this post, sorry!), I celebrate Charlotte for all she is and all she will be, as well as all our friends who also have three copies of that crazy little 21st chromosome. Little math lesson for you, 47 > 46 ;-).

47 days.

It has been 47 days since my last true Charlotte update. Yikes! Time flies when life is crazy, doesn't it?

To make up for it, I owe you 47 tidbits about Charlotte and her current state of being.

1. As of today, her new favorite word is "mine!" Very important word to know with two older siblings. 
2. She has gotten quite a bit taller the past few months; grown at least two inches since the beginning of the year, and is now just a hair under the island in our kitchen (which is why Mike just out corner safety guards on it to protect her little head since she often doesn't watch where she is going!). 
3. Favorite toys: babies, blocks, and balls. Apparently she likes things that start with the letter "b."
4. No more crib! She was not a fan of the toddler bed, however, so she now sleeps on a mattress on the floor in her room (which isn't the prettiest sight, but will work until she is a bit more agile and doesn't fail around so much when she sleeps.). Her crib is now waiting for the new boy. 
5. She has to sleep with five baby dolls every night. She asks for five babies when we tell her it is time for bed, and I count them as we line them up against the wall each night. 
6. Favorite foods: pancakes, pizza, blueberries, yogurt, potatoes ("tatoes!"), and grapes
7. She has left her love of "Signing Time" behind and replaced it with an obsession with Dora the Explorer; following in her big sister's footsteps, as this was Katherine's favorite show at age 2 as well. 
8. Her favorite Dora character is Swiper the sneaky fox, and when he comes on, Charlotte comes and finds us to tell us "Awww, Man!"
9. She still is, and hopefully always will be, a book lover. When the older kids go to bed, Charlotte often spends a good hour rotating between Mike and I, bringing books to read. 
10. She loves practicing her colors, and is pretty good at identifying red, orange, yellow, blue, purple, and green. She says all of them, except for orange (which she signs), and has great accuracy at picking out things of a certain color. 
11. Since the crib-to-bed transition, she has pretty much given up naps, which to put it bluntly, sucks. 
12. When she doesn't want to nap, she stands at the gate at her door and yells, "Mommy, Daddy, Will, Kaaa-keeee!" over and over again. 
13. Her new favorite song is "Baby You're a Firework" by Katy Perry.
14. She is still a bit shaky on her feet, and seems to struggle with balance/coordination, and is freaked out by the stairs. We are seeing a vision specialist in a few weeks to see if she has any depth perception issues. 
15. She screeches when any one opens the freezer because she thinks she is going to get ice cream (and no, we don't each ice cream that much, she just really loves it). 
16. She loves to color. Especially on the walls. Awesome.
17. She has recently figured out how to work the door knobs in our house. Also awesome. 
18. Baths and brushing her teeth are favorites. 
19. She no longer fears doctors like she did back in October after her hospitalization. I can now take her with me to my OB appointments without her screaming the minute we walk in the door. 
20. She has become so much more outgoing. No longer does she hide her face from strangers, but often says "hi" or "buh-bye."
21. When she wants something and I am not paying attention to her, she pulls on my pants let and shouts, "Ma!"
22. She loves being barefoot. Her socks and shoes come off any chance she gets. 
23. Her two and three word phrases have been increasing daily. 
24. Pumpkin muffins made by "Aunt Kate's GF bakery" are still her favorite breakfast food. Kate tried to switch it up and made banana ones last time, but the picky princess rejected them. 
25. She rocked her last developmental assessment (you know, the ones I usually dread!); she has made so much progress in the past 4 months, the therapists were blown away. 
26. Her celiac diagnosis quickly became a way of life around here. The older kids are experts at what is gluten-free and what isn't, and if they don't know, they are awesome about asking. For Charlotte, being 2 years old when she was diagnosed was probably the best thing, as she will never know any different. 
27. We start the IEP process through the public schools in the next few weeks. I am nervous, but confident things will go well. 
28. When I tell Charlotte "I love you," she says "love you" back while trying to replicate the sign for it as well. 
29. Though speech has taken the place as a lot of her signs, she does still rely on signing quite a bit. A lot of her words can sound the same and the signs help us to understand her if needed. 
30. Her receptive language skills blow me away, and are far above her expressive language. 
31. She can rock puzzles. Loves them.
32. Missy had her baby last week, and Charlotte is in love. She would sit and hold Bennett for an hour if we let her, and she screams when anyone tries to take him away from her. She stares at him and says "baby, baby, baby" over and over. 
33. We call Charlotte, "the tornado" as she often walks around the house dumping buckets of toys, coloring on walls, playing in the dog's water, etc. She has now taken to repeating us, and now walks around saying, "Nato, nato, nato!" 
34. She loves to play dress-up. Especially loves hats, shoes, and necklaces. 
35. We have been having her practice what we *think* will probably be the new baby's name. She's got it down. But don't you dare ask, because we aren't positive yet! 
36. She is freakin' stubborn. When she doesn't want to do something, she hits the ground and goes limp. Awesome. 
37. She loves the phone. Often grabs either my cell phone or the home phone, and pretends she is talking...starts out the conversation with "Hi" and then strings together a mess of babble before ending with "buh-bye."
38. She loves looking at pictures on the computer and pointing out everyone she knows. 
39. Eating out at restaurants continues to be tough. I bring her food everywhere because even though there are plenty of "gluten friendly" restaurants and choices out there, most do not take caution to prevent cross-contamination. 
40. She has a soft spot for Sophie, more so than the older kids. 
41. Sophie has a soft spot for Charlotte, probably because of all the food Charlotte shares with her (nothing like watching the $6.50 per loaf bread be hand fed to the dog!). 
42. We recently discovered she loves black beans. Eats them by the handful (while holding a spoon in her other hand). 
43. She points to my belly often and says, "baby." However, she does the same to her own belly, as well as all sorts of random people. 
44. She loves visiting "Peg"  (great-grandma) at her apartment building, and enjoys racing through the hallways with her siblings making all the residents smile. 
45. She has a strange habit of pulling her shirt up and shouting "belly" when people come over. 
46. We look forward to nicer weather, as I think this little lady is going to love being outside once it warms up. The amount of energy she has is unfounded, and needs an outlet!
47. Charlotte brings each one of an amazing amount of joy on a daily basis. Even in the midst of her "terrible (tornado) twos" she manages to make us laugh multiple times every day! 

There ya have it. Charlotte it in a nutshell. I am beat and headed to bed, so I'm not going to proofread. Forgive me for any grammatical errors! 

Charlotte and baby Bennett. Love. 

It's never okay.

It's never okay to use the word retard(ed).

No matter what your excuse....
 "it slipped"
 "I didn't mean it that way."
 "Sorry, I was just kidding around."
 "It's only a word."

I am here to tell you, it is not okay. By using this word, you hurt and degrade others. If you are still using it, do me a favor? Knock it off.

For Charlotte. For her friends who also have an extra chromosome. And for all others around the word who have an intellectual disability.

Take the pledge and never use the "r" word again. Thank you.
http://www.r-word.org/Default.aspx