I have seriously been meaning to sit down and post a blog, but just have not taken the time, and sometimes I feel like I don't have a lot to write about. Today I do. So, this might be "long" in order to catch up the last couple weeks, and I promise pictures, and maybe a video. :)
I actually have tears streaming down my cheeks at this very moment. To be honest, I don't really cry much these days. Today, I cry because today is WORLD DOWN SYNDROME AWARENESS DAY. It is on 3-21 because Trisomy 21 means and extra copy of chromosome 21, making 3. And why the tears on this day? I am really not too sure. For some reason as I was sitting here thinking about what to write, to raise awareness for these incredible individuals, a stream of emotions overwhelmed my heart. I want to think right now of ALL individuals with Down Syndrome, but I can't get my eyes past the ONE, the GIFT who was given to me and my husband. When I look at Annabelle, I don't think, Down Syndrome, and I don't think 'special needs'. I don't see those things. I see her as Annabelle. I, for my sake, would NEVER EVER EVER change who she is. But, today I was thinking about her future, and when I think about her future, and our future with her, there are certain fears that raise their ugly head.
I don't wonder ever if I will love her less, or wonder if I will just get so so frustrated with her set-backs, whatever they may be. I don't wonder if her family will accept her, I don't fear how she will look. I don't even fear that life might be 'more' difficult for her. Life is difficult for EVERYONE, so that isn't something to avoid. I fear if she will have a best friend. Will she be made fun of by bratty kids? Will she have health problems? When she finds out she is a little different, will it hurt her feelings?
I have a confession. I don't educate myself on Down Syndrome by reading books or by searching on Google. I don't read the books that were given to me by the hospital at her birth or by friends and family. And, I try to avoid blogs that talk about what if's of DS. You might say that I am making a bad decision in that. But, I just can't bring myself yet to read the what-if's through books. It raises incredible fear in my heart. When something happens with Annabelle, IF something happens with Annabelle, I will search for answers through those books. For now, I am not getting to know Down Syndrome. I am getting to know ANNABELLE. I am raising her as I would if she wasn't born with Trisomy 21. Meaning, as my child, as my baby. That is not to say that I have not learned A LOT about DS. I have learned a TON in the last 11 months. I have learned that they are some of the most caring, and passionate people. I have learned that they love and befriend people that others may not love or befriend. I have also learned that they can do a whole hell of a lot more than people know or give them credit for. Incredible. Incredible people they are.
And when it comes to babies, I have learned that they have lower muscle tone. They might need glasses early. They might not grow very fast. They typically don't hit milestones like other children. And I thought I was just blessed with a really good, easy going baby, but after talking with other moms who have DS babies, they say the same. :) They are awesome from the start!
Here is ANNABELLE at 11 months.
-She has hit ALMOST every baby milestone.
-She still does not have teeth.
-She still inch worm crawls, but let me tell you, its a speedy little inch worm.
-She is growing (length wise) pretty slowly. (in fact, it has me a little concerned the last couple months. at the beginning, she grew out of clothes and diaper sizes fast. But, she has been wearing the same size clothes and diapers for a long time. My pediatrician doesn't seem to be concerned, so i try not to be. Others who haven't seen her in a while say she has grown, but I might just not be seeing it. Oh, she has a little belly and chubby cheeks, but length-? I just pray about it. )
-She loves to eat! She can not self feed yet, but I present little things as often as possible.
-She still breast feeds and LOVES it.
-She sees a PT every month, and pretty much hates it. Ha. She gets super feisty with her. But, I am thankful for ECI. The PT has been SO impressed and happy with Annabelle's progress.
-She stinkin LOVES her daddy.
- Besides a little bit of loose stools one week, she has not been sick. (Thank you, Jesus.)
- She loves car rides.
-It seems everything is an exciting adventure to her.
- She enjoys the church nursery.
- She is starting to bring herself into sitting. (only every now and then. Sometimes she 'pretends' to forget how. :)
- She tries to jump out of my arms.
-She learned "SO BIG" and Pat-A-Cake really quick, but doesnt do them for me anymore. stinker.
-She loves books.
-She is a good napper.
- She is learning that whining might not always get you what you want. O wait, maybe she hasn't learned that yet. ;)
- She likes kids.
- She has a favorite blanket already. A cozy pink blanket knitted by Nana.
- She does her best to communicate with us. She has lots of stories to tell.
Anyway. I could go on forever. I love that little stinker. (my tears subsided by the end of that list.)
A couple weeks ago, Craig and I went to lunch on a Friday afternoon. While we were sitting at our table on the patio, a group of really cute ladies sat only a few tables away from us. One had a stoller with a little boy in it, and I saw the face of DS immediately. I whispered to Craig to look and tell me if he thought the same thing. He just nodded. I wanted so badly to say something to the woman, but how do you bring it up? What if he really didnt? that would be terrible. The ladies were looking at Annabelle the same way. Saying how cute she was, but it was almost like us, the moms, knew. But neither of us could bring it up. Eventually she did. She was looking at Annabelle saying how cute she was, and i said the same about her little boy, who was now snuggling up against her chest. she said' "Did she have any surgeries?" And that was the ice breaker to us talking about Down Syndrome and our babies. Her's was 18 months old. I felt like it was a moment that was a gift from God. And Craig thought so too. For both of us moms to talk in a language that maybe only we understand. So, after that, I prayed. I pray for some mom friends with some kiddos with DS. To be able to talk in our own language, and understand each other. I love it. :)
The tears I had today surprised me a little. I am not sad that Annabelle has DS. I don't ask 'why us' questions. I seriously mean it when I say I would never change it. I freakin LOVE this gift. (Please remind me of this when I need encouragement one day in the future.)
Ok, so here is a little catch up over the last weeks....(NOT in any order)
One Sunday afternoon, we took a little trip to Houston to see Craig's dad. He was in town for a short bit. It was SO great to see him, and great to see Annabelle get a little bit of Grandpa love.
This past week was my mom and my sister's Spring Break, which really means it's also a break for me. I feel like I get to play more than normal too. And we did. We took a little trip a couple hours from home for the day and a night. It was a blast. My sister and I visited some wineries, and enjoyed some microbrews at a local brewery. It was an awesome trip. The day happend to be St.Patty's, so I had to adorn Annabelle in green of course. we even when to the tiny town of Luckenbach. I mostly wanted to go just to get a pick with Annabelle there.
11:30 AM. HEY, it was vacation, and it was awesome. Cheers!
Occasionally, I will walk in the room to discover Craig has fixed Annabelle's hair. I often get a big kick out of it. THIS is what I found last week. Craig had found a few of his favorite bows, and decided that she needed to wear them all, at once. I loved it. But, did not leave it. ;)
These last two pics are from this morning. She put her applesauce and oatmeal in her hair, and when I tried to take a picture, this is what I got. Better than I expected.
and, she is trying to use those little fine motor skills to pick up this little cheerio! cutie.
^^^(not sure what this little link is, but I can't get it to go away.)
OK, and I found this video hilarious. I set up a little couch cushion on the floor so she could use those arm muscles and pull herself up. and the OT said that going up stairs or things like this might help her get up on those hands and knees to crawl properly.
Happy Monday. And Happy World Down Syndrome Awareness Day! I think the afternoon calls for a trip to the park. :)