I could not ask for more than this time together
I could not ask for more than this time with you
Every prayer has been answered
Every dream I have's come true
And right here in this moment is right where I'm meant to be
Here with you here with me
These are the moments I thank God that I'm alive
These are the moments I'll remember all my life
I've got all I've waited for And I could not ask for more
*going home tomorrow maybe*
Two weeks, yes just two weeks, before I met Annie, I made this post. Go read it and then come back...I'll wait...
Ok, so as you saw in the post, we had requested a little black girl 0-3, (though I was hoping for a baby). We were contemplating the name Ann Marie, (obviously we did go with that name lol), and we had a feeling that our Ann Marie would look like her namesake, (who by the way was illustrated winter 08/09! A year before Annie was born).
I love looking back on all of this. Proof that Annie was meant to be ours even before she was conceived! I just read all of the August posts. *sigh* How quickly I forget the details and I'm so thankful for this blog!
Like every parent to be, we didn't have many dreams for our kids, other than we wanted them, immediately!
One thing I really hoped was that I would get a little girl, (check!), and that she would have a very similar personality to a sweet girl I knew, (I am pleased to say that she in fact has that awesome personality that Abby Ross has!). Some things I wanted, but never really prayed for (like being like Abby). Music was one of them. I love music and it is very important to me. It was very clear, right away, that Annie too loved music. You want to make her happy, play music!
Another thing I never prayed for, but obviously desired, (who wouldn't!?), was how easy she is. From day one, (her foster mom told me age was like this since she was 4 months old), she was the easiest baby I'd ever met!
On August 9, 2010, when I made that piece of artwork, I had no idea how truly prophetic it would turn out to be.
It's no secret that, "I knew I loved HER before I meet HER,"
But looking back over the last over 2.5 years, it proves that, "I dreamed HER into life!"
She has taken a liking to carousels and horses. She never asks for anything, so when she asks to "ride the horseys" I always oblige! :)
Annie loves her doodle pad! She received it for her birthday from Riley and Easton. The funny thing is that just the day before her party I realized how much she'd love one-how did they know?! :)
That was back in November- she has since demolished it! Isn't it nice to know that it was so well loved that I had to go buy a new one?! She has played with it everyday since November, (6 months now), sometimes for hours at a time!
Yesterday I found a pink one for her replacement! After buying it at the toy store, I let her bring it in the other stores to play with while I shopped and she played with it in the car on the way home!
If you couldn't guess, she played with it as soon as we got home too! She exclaimed, "I drew Annie!" I looked over and she had drawn her first ever smiley face (she has drawn bob and Larry before, but they were really circles with a few misplaced dots. This smiley face is more "anatomically" correct)! I told her Annie needed hair, and she added hair. :)
I loved drawing/coloring/doodling/painting as a child, and I think its safe to say she will too! I can't wait to see what masterpieces she makes for me over the years! :)
"Everyone says I'm a mistake, and I wasn't even supposed to exist!"
Vanellope von Schweets is a glitch on a game in the movie "Wreck it Ralph." I just love her above quote because it is so true of special needs kiddos. People believe they are mistakes that don't deserve life, (no, this will not be a rant about abortion, I promise...its a pretty exciting post actually!). (also, you must go buy WIR TODAY if you haven't, it's awesome!)
Annie loves Vanellope, and asked me to take their picture together. ;)
Anywho... Ready for some exiting news?!
Annie cannot feel below her knees. Like nothing! Some people will tickle her feet, and she'll giggle so they'll think she can feel, (when in reality, she just sees them and knows how to react to tickling).
Well, Wednesday she acted as if she did have some feeling, so last night I tested it. Without her seeing what I was doing, I bit down on her shin, and she actually felt it! Giggling, she said, "don't bite me mommy, it's not nice!" Then I gave her a second and then bit her foot, (the worst as far as sensation goes), and once again she giggled and told me not to bite her! She absolutely has feeling! Now, not enough feeling for the bite to hurt her, but enough to know what I was doing!
This morning I tested again, this time with a more delicate test. I held her foot ever so lightly in my hand, taking care not to move her leg (as not to give it away...also she couldn't see me). I asked her what I was doing and she said that I was holding her foot!
Then, as I was posting this, I decided to test yet again. I slipped my hand under the blanket so she couldn't see, and I pinched her foot. I asked her what I was doing, and she said, "you're pinching my foot!" Not only is she feeling me, but she can differentiate the different feelings!!
I know its not much, nor will it ever gain full feeling, but it's pretty cool none the less! Though it is a bit problematic...I have them do her blood pressure on her leg since she can't feel it. That trick is gone now, (not completely though since she has less feeling in her legs than her arms where she can feel 100%). Also she's a rock star with her braces and now that she has some feeling, it may cause her some pain? We shall see. :)
I previewed this collage this time last year when I first put it up. You'll have to settle for junky phone shots until we get our internet back.
This collage has pics from our trip in 2010 and last week. :)
This brings me so much joy! If you couldn't tell, I love to decorate with pictures! :)
We're traveling back to West Texas now and I'm a bit sad our trip to Boston is over, (see ya again in 4 years, my love!)
More details soon, but I know everyone wants to know why Boston Children's Hospital became part of our itinerary. Their neurosurgery department is ranked number one in the country, and I'd love to move there to take Annie there always. But, taking her there during vacation was not what I had in mind.
Annie has Spina Bifida and hydrocephalus. On top of these, she also has an arachnoid cyst on her brain which has required 5 surgeries since we got her.
I'll know she needs to go to the er if she becomes lethargic, (there are many other symptoms, but this one seems to be her main one in regards to the cyst).
Typically her lethargy will remain or get worse until the surgery alleviates the pressure.
Friday night we went to the Red Sox game. For the first hour or so, Annie had a blast. Dancing, talking, animatedly waving, calling, "hi Fenway park! Hi Wally!" Etc
All of a sudden she tells me she's tired and wants to go back to the hotel. She has never once asked to go home/go to sleep, (she's not a complainer!). This was very strange and I asked her a few more times to confirm. Sure enough, she wanted to leave! So we left at the 3 inning, (crazy, right?!), and headed back to the hotel (2 minutes walking distance). I put Annie in bed with the lights and TV on, (I'd put her to bed after my shower). Brooke sat next to her on the phone and I took a shower. I came in the room and she was out! Ok, she must have truly been tired, I thought to myself.
The next morning, she awoke seeing 7:30 asking for milk and I told her to go back to sleep, (a normal morning ritual which I usually do in vain lol). To my surprise she went back to sleep! She slept until 8:30, and awoke to ask to watch a movie, (like I said its a ritual so she was just wanting to be awake). I told her to go back to sleep and to my surprise she again did, (I try this everyday and it usually never works! Lol). We got up and ready for the day shortly after that and Annie stayed asleep. I allowed her to sleep because she obviously needed it the night before. But then it started to get strange again.
I can wake up Annie at any time of the day and she'll wake right up and be alert, (and considering usually once she's awake she'll stay awake no matter how I beg for her to go back to sleep lol). So here she was after sleeping for 12 hours, falling back to sleep the second she opened her eyes. I'd sit her up and she'd slump over like a rag doll and be right back to sleep.
I knew immediately something was wrong. It was either her head or just a uti, both of which would need immediate attention. I debated back and forth about taking her to the er, (we were in Boston for crying out loud and would return home the next evening!). We decided to go down to breakfast and Annie fell asleep SITTING UP IN HER WHEELCHAIR. After over 12 hours of sleep. Something was wrong and Brooke encouraged me to take her to the er, (it was nice to have someone else see something was definitely wrong! Mind you, this is the most lethargic I have EVER seen her).
We jumped on the T and two exits later we arrived at Boston Children's. After hours of waiting and waiting, we were told there was no uti, the cyst was stable and her shunts looked fine. I was not happy. Something was wrong but I was being told "nothing was wrong." It was very hard to leave the hospital, but I had no choice, (and if you're wondering we did salvage what we could of that evening and Sunday before our plane took off, thankfully). :)
After being sent home, I was told by two different people that they thought it may have been a seizure. To my knowledge she's never had a seizure, but her lethargy was so bad (and improved where if it were her cyst/shunt she would stay lethargic/get worse), that I'm starting to think there may be some merit to this.
If you're like me you are thinking a seizure is a long episode of convulsing, etc. But I've learned a seizure can last seconds and just be someone staring off into space. My brother's future mother in law is a teacher and has dealt with many kiddos like this. They'll have to go to the nurse to sleep it off, go home, miss about a day then return good as new.
This would fit perfectly into what happened to Annie. My thoughts are that she had one of those, what I'd call, invisible seizures at the Red Sox game. The time line is just too perfect. :/
I'll be calling her neurosurgeon tomorrow to set up an appointment to discuss everything and see what he thinks. Obviously, seizures are scary and I'm not to happy with this thought. Please pray for my Annie! :)
(so so thankful I had Brooke with me for many reasons, but I'm glad someone saw how bad it really was)
Exactly one week from now, (almost to the minute!) we will be landing in Boston! Annie, Brooke and I will be setting foot in my favorite city, (for them: the first time ever, for me: the first time in 3 years-oh how I've missed it!).
Everyday I'm shown more and more that we made the best decision inviting Brooke, and that she made the best decision coming along. Sometimes you can't see God working in your life, and sometimes you're blessed enough to see everything as it if unfolding. I've been blessed to see God working in this trip in many ways and I have no doubt this trip will be a huge blessing, (and though I've dreamed about it for years, it's going to be even better than I was planning).
There are people starving around the world and so it is hard to spend money on yourself for fun. Well, in 2010 our trip to Boston was more than just a trip and God made it clear it was right where he wanted us to be. I'm so excited this trip is also turning into more than just a trip for fun-it seems to be right where God wants us to be. I'm praying Brooke experiences not only the joy of Boston as a city, but also the blessings God had in store for us, (especially her) in this trip. (I dint day this often, but I can just feel it that we will be really blessed in Boston. I can feel God has big plans for us there)
I don't know why God used Boston to speak to me before, nor do I know why He chose it again to bless Brooke at this time. All I do know is that this is a big reason why I love Boston.
(here we are almost 2 years ago at her first baby shower (for son Wyatt). Please keep praying for her as she grieves the loss of her second child, Tristen. Grief is a lifelong journey- please do not forget her or think she "should be over it by now." She'll eventually be less heartbroken, less sad, but she'll never be over it. She's forever changed and needs to be loved through this grief!)
