Monday, January 30, 2012

A friend has read my mind

Have you ever read something and it connected so gracefully to your own thoughts, that it is almost as if this person READ your thoughts?? 
That is what happened when I read this today, and I had to share. 
Written by a friend of mine and Macys who has recently moved away from us and settled in Cambridge, England. 
Her words are so eloquent. 
I could not have said it better... Click below!




Sunday, January 29, 2012

2 years already!

Two years ago I was anxiously awaiting the arrival of a baby boy! I was so sure. Because of course, doesn't every women know her body so well? I also had a coworker tell me that for sure I was having a boy, because when I had been pregnant with a girl the previous time, I glowed more and looked more radiant and beautiful... Huh? Really? Did I hear that right or do I need my ears cleaned? haha. I was taken back by that then, but now it just makes me laugh. 

Well, it wasn't a boy. But a girl. An absolutely beautiful and perfect baby girl with Down Syndrome.

I think the Lord prepares us for the life we are going to live. I don't think it was a coincidence that my dad worked at a developmental center. I don't think it was a coincidence that I chose to do volunteer hours at the developmental center in high school. It's not a coincidence that I have always been aware of the people around me with disabilities or that I have had a soft spot for them. 
There are no coincidences, only His plan. And I love when I get to look back over my life and see the moments that I was being prepared. When I can say, "Huh, so that is why that happened!" 

Those full circle moments are confirmation for me! Validation! Reminding me that I am still heading in the right direction.

These were the thoughts running through my head in those first days of Macy's life. It was an "Ah Ha" moment for sure! 

Many people like to think that special needs children are given to special parents. I think different. I think that I was slowly prepped and prepared and given the chance to prove if I was capable. To prove if I could love her unconditionally. Could I learn to see her and love her as the Lord does? To learn that perfection is not defined by the physical things. There is a bigger picture here. I think like anything we go through in life, we are able to do it when we rely on Him to help us! 






For me Macy is one of God's "Tender Mercies."
He must have known that I needed confirmation.
He knew that I needed to see "The pure love of God" in action.









I won't lie and say these last two years have been easy. 

Raising a child with special needs takes more of everything! More patience, more teaching, more appointments and more advocating. But what I want people to know is that it doesn't have to be scary... it is  beautiful! So beautiful! An experience I would not trade for ANYTHING!

I think of Macy and I wouldn't change her. I would not take her Down Syndrome away if given the chance. Without it she wouldn't be able to touch so many hearts. She wouldn't get to experience life with pure joy and happiness. 

This was God's plan for Macy and who am I to wish it away?! There is a reason why she was given Down Syndrome and every day I get more and more glimpses into why! 

My heart almost burst just thinking about how much I love her. If you know her, she is easy to love. It's almost impossible not to. The joy she has brought to our family is beyond measure. She adds light and depth   to everything. Her sweet personality is uplifting and her laughter is infectious!

Macy turns 2 today and I have a feeling we are just at the beginning of all we will learn from her and I am so grateful that I was trusted enough to take this journey with her! It is definitely a wild and blessed ride. 


Filled with all the best things. I celebrate her today and I celebrate her future, the sky's the limit!! 

I love you Macy... forever and ever! 
Happy Birthday Big Girl!   






Thursday, January 26, 2012

Thirty-What?

I think I am turning 31... las (laugh at self!)
I'm getting to the part where I start forgetting what age I am! I remember being young and wondering how anyone could forget. I mean, I remember being one whole hand! (5) or when I no longer had enough fingers to count my age! (11) Well, if that child only knew that age is but a number :)


Actually, some days age is MUCH more than a number... I am starting to think my grandma wasn't so crazy to go to bed at 8 pm. Sounds kinda nice sometimes! I have started realizing that between about 2pm and dinner, I am not coherent enough to handle big girl jobs or questions... those are my FOG hours! Where the lack of sleep, and nourishment takes it's toll! And, if you ever struggle finding something in my house, it is probably because I put it in the wrong place! Like a box of cereal in the fridge or my keys on the bathroom floor because when I got home I ran in there so fast to pee before having an accident!


Those are not every day occurrences, luckily! But yes, this age thing is creeping up on me in good and bad ways!


I'll take the bad though, because I actually like aging. Every year I learn more about myself, I become more comfortable in my skin, I laugh at myself more easily and my cooking sure improves! ;)


I have spent this week examining my life. Where I am against where I thought I would be. Then, where I am against where I want to be.


Am I where I thought I would be?
If you asked me this question as a kid I would say YES!
If you asked me this ten years ago, I would think it too good to be true!


So I took a little detour? I got to the right destination after all right!


So the more important question. Where am I compared to where I want to be?
For the most part I feel like I am living exactly the life I want, just not doing it as efficiently or completely as I wish. I'd like to learn to balance my life better. And though comfort with myself is coming, I would always like more of that! More time with friends, more quiet weekend getaways with the hubby, more tea parties with the girls and more sunny days to throw footballs with Tommy, and always more times to laugh and dance! Those are all on my list. But, really I am feeling pretty at peace with it all.


So I turn 31 in about 45 min... and what do I say to that?
Another day older, another day wiser...another day of blessings (and laundry) in abundance!!
I'll toast to that! Happy Birthday to me!!

Thursday, January 19, 2012

The down low on the babe

Macy's surgery went well, it is such a quick procedure. Only takes 15 min or so. Unfortunately we had to get up at 4:45 to be there at 6 am. Even with that, she didn't get into the OR until about 8:15 sort of annoying!

Anyway, after the surgery, the doctor mentioned a slight infection in her ears and sent us home with some ear drops. It quickly became apparent that she wasn't okay! I almost took her back to the hospital but tried to get ahold of her surgeon first. Well she finally called me back later that afternoon, no help there :)

Well after a few days of no smiles and all fussing, fevers and "mommy hold me's" I finally took her in. Turns out she has a really bad ear infection and a "rattly" chest. (not pneumonia though!) So  I am hoping to see some improvement soon!

Here is Macy ready for surgery! She did have a mild cold going into it and that made me a little nervous.
 But, I also didn't want to be sent home and have to return again. And the anesthesiologist felt like she was okay to go ahead with it.
 To sooth her mind before surgery, Macy listened to some Coldplay!
 She likes quite the repertoire of music! Signing time, the wiggles, J Beibs and Coldplay!


And now, on to lighter topics and a little sunshine to remind us that, Yes, it will return again.
And I would like to say, I hope it is soon!
These were taken at a splash pad in Utah last summer!

 See the Diva! She loves this pose... I'm just not sure it is "America's Next Top Model" worthy?!

 So sassy! Tag hanging out and all!
 And here is the little miss during happier times! I am hoping to get back to these smiles soon :)

 We may have some stiff competition, but I vote Tommy as worlds best big brother!

 And I interrupt this slide show for another Diva moment!

 Above is my hansome boy, below is the reason why I get so few pictures of him! He runs from the camera!


 Tommy with cousins Bryton and Desiree - they are all three the same age! How fun is that!!
Thanks for visiting... I think I hear a little one crying for me, again! I think I will pray for no sick kids, sunshine and temps above -20!

Monday, January 16, 2012

Macy's 3rd Surgery

It is common among people with Down Syndrome to have hearing problems. That is a large part of the reason why many of them have difficulty communicating well. If you have ever heard a deaf person speak, they don't pronunciate their words as well. If you can't hear the correct pronunciation, you have a harder time repeating it.

Well, somehow Macy got overlooked in the beginning and never got her initial hearing test. Then when she finally got in around 8 months old, they found she has fluid behind her ears (to her it sounded like she was under water) and therefor she needed tubes to drain the water. She got those tubes last January.


Since than she has had multiple hearing tests. At some of them they thought she would need hearing aids, then some of the tests would be better. I really think it is hard to get a good result with an awake baby who could care less that she was being tested and didn't really cooperate. But, the testing continued, and I was okay with that. She has always been a chatter box and she has always responded to her name and acted like she could hear us. so I was just going with what the doctors wanted with little concern.


Eventually we got in to the Opthomologist again and she was stunned with how much wax Macy had produced, which surprised me because I never see wax in her ears. I guess it is a really sticky type that has completely blocked her ear tubes. Thus the failed tests! Though, we still know she can hear and she is doing great at her speech therapy appts.

Still, tomorrow she gets a new set of ear tubes, and though I am not supper nervous, there are still risks with every surgery! I am hoping that everything runs smoothly and that her new tubes stay nice and open! Unlucky for us, we have to be at the hospital at 6 am. I guess that means less time to wait for her to be done tomorrow! I'll be glad when I get to go see her in recovery and hug her and love on her!!

Saturday, January 14, 2012

Ramblings, Goals and a little eye candy!

Every saturday morning I think I'll get the chance to sleep in. I get all excited on friday night just thinking about those precious extra hours of nothingness! Than saturday morning comes and along with it comes what I like to call, "My life is not my own!" The nagging of a hungry and TV wanting 4 yr old. The chatter from the crib in the room next door and the gut wrenching guilt that I should probably go get her. Because deep down, I have a hard time letting Macy suffer, at all! Lets also not forget the husband, bless his heart, who is hoping for some saturday morning attention. See, like I said, My life is not my own! Thanks to my really independent and helpful 9 yr old, I can quickly get them settled with him and head back for at least a few more moments of dreamland.

I hope no one takes this as complaining... I assume most of us feel this way at times! And really, do I want my life to be my own?? Not really, that would be quite a lonely and boring existance!

I realized yesterday that I hadn't written down my goals for 2012.
Like most people, I have a lot of things I would like to improve on such as; more consistant prayer and scripture study, taking more pictures of my family, since quantity isn't available... more quality time with friends, and spending less and spoiling less!

But, I have decided on a few larger goals for 2012.

1. I want an need to become more organized. With my house, Macy's medical documents, and my time. I'll gladly accept any tips and tricks!

2. I want to set up a budget. I am the mom who buys on a whim and I want to stop doing that. I want to keep better track of spending and make better choices about what we NEED and dont need. Though I told my husband that he isn't allowed to do the budget with me... funny I know. But when we budget together I get crazy anxiety.

3. The last thing is going to be hard for me but a good challange. I want to do more little things for people around me; friends, neighbors etc. Last year we donated so much to charities and did fundraisers. But I think you can make HUGE changes in peoples lives with a homemade batch of cookies. I am not the best about taking meals to new mothers or taking treats to neighbors, but I want to improve on that. I want to do this because it is the people closest to me that directly bless my life and I need to show my appreciation! My hope is to do one per week!

Okay, with that said, on to the rest of the vacation pictures. I have to say, I regret that I have no pictures of Tommy on our trip. He was at his dad's the majority of the time. But I am going to get some good ones of him up on this blog soon.


 If you notice in the pool picture, Kyla is holding onto Macy's float. Protective or controlling? You decide!

 We put on some Justin Beiber music and I'll admit, we are big fans! Especially Kyla. Her and Sadie were having a major dance party on the side of the hot tub! Not quite sure yet where Kyla got her hip thrusting and rotating moves... I'll have to keep an eye on her!


 
Again, we ended up going to Disnelyland. But just for one day this time and the park was extremely busy, but we did get on a few rides with the girls. And of course, within the first hour of being in the park, Barry had to buy Cotton Candy for them!

At least we believe in a wholesome breakfast!



 I am thinking that we have done Disney enough for a few years! So maybe next year we will do Universal, Sea World or Lego Land! Any Suggestions?

Thursday, January 12, 2012

Back to life... back to reality!

The lull after the vacation... I've actually been so busy that I haven't had a chance to miss being on vacation! Weird, I know. Today was spent in therapy with macy and booking appts for Macy, it seems like she hasn't seen her pediatrician or her surgeon in forever. But some good came out of today...

Macy got approved for an in home developmental aide that will come for about 6 hours a week. We will have this aide for 6 months and my hope is that in that time Macy learns to communicate better, listen better, stop pulling hair/biting, and learn to walk. I am very excited about this!! I have been really stressing about all this lately.

I left one of her classes at PREP a few months ago in tears because she would not stay in her seat, was throwing fits and pulled her friends hair... HARD! I was embarrassed... so I cried. Then I was ashamed of myself for being embarrased about my own daughter so I cried again. Shouldn't I be her biggest supporter and fan? I was having many conflicting emotions. Sometimes this process is just a little overwhelming I guess! Anyway, I want to break these habits before everyone thinks she is mean or difficult. She is really a great kid, but she has a HUGE personality. Basically, she knows who she is, she knows what she wants and she thinks she is running the show! That is probably because I love her so much and she knows I am weak and will give in to her!

Enough of that...

So, I am sure your all interested in my trip :) If not, pretend! We had a great, relaxing time. Here are some of our adventures.






 The dogs were a hit at the city park!
 This is Kyla trying to be like her uncle Brian!
 Kodak Theatre - I couldn't help but think about one of my good friends while I was here.
I think she would love it. Next time!

 We saw this car on Rodeo Dr. There were tons of people getting their pictures with it.
Barry told me it is a Bugatti and I can have one for only 2.4 million! Better start saving my pennies!

 We ate at Mels Drive-in where many famous movies and shows have been filmed.
 We drove around with a map of the stars homes. We did find a lot of homes!
Unfortanulty they are all mostly behind 20 foot hedges ;) So, we didn't see much, but we still saw LOTS of awesome homes! Beverly Hills is a must see!
 Twilight Footprints and Handprints in front of the Chinese Theatre
 And Harry Potter of course!
 I got a lot of star pictures. I had to post this one since we are taking the kids to see the Globetrotters in Feb!
 And I know everyone loves Dirty Dancing!! Don't Deny it!
 Even Kyla got in the action! Snow White is her favorite Princess and the first one she ever met at disneyland! The funny thing is, she has never seen the movie and when the 7 dwarfs came by in the parade, she asked me who they were! haha
 My own little Marylin
 I think Kyla ate too much cheesecake!

 Worlds tallest man!

More pictures to come...

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