Resolution

Well, friends, Christmas has once again come and gone. And as I look at the mess around me, I am reminded of all of our Lord's many blessings on this family. 2011 has been a significant year in the life of my little family, one that we will never forget. The new year brought with it hope. Hope for a bright future and a joyful reunion with Cole, who had been deployed since April 2010. He came home in April 2011, and I thought that finally, our lives would settle down and we could be "normal" for a bit. Boy, how wrong was I!!! HA! We decided to put our home on the market that summer, and about the same time we started to investigate why Ava was not developing typically. There were many things going on with Cole's civilian job as well, and he was gone even more than usual. Needless to say, this past summer was a whirlwind! Fall came, and with the changing of the leaves also came a changing of seasons, of sorts, in our family. Each challenge our family met was followed almost immediately by a blessing of some sort. On the heals of Ava's diagnosis, literally, within a matter of two weeks, came word that Cole would have a new job. One that would not only allow him to be home full time, but is also his "dream aviation job" and one that he has talked about from the first time I met him. What a blessing that was! God is so good!

I began thinking about my 2012 Resolutions around Thanksgiving. So much was happening at that time- both uplifting and heart wrenching, that I started making decisions about things in my life. Some personal, some pertaining to relationships, and some that are continuing resolutions.

On my list, you will not find the typical "loose weight, eat better, ect." resolutions because, honestly, that is not where my focus is right now. I would love to drop a few pounds and learn to love all things green and leafy. BUT realistically, I have more important things in my life to worry with at this moment. Maybe next year! ;)

So here are my New Years Resolutions for 2012:

*Continue to strive to place my relationship with the Lord, my relationship with my husband, and my priority on my child first and foremost. In that order. Everyone else, although I love some of them dearly, are really just peripheral.

*I want to continue to weed out the negative, manipulative, and hateful people in my life. Regardless of how I know them. I have no room for them in this new life as a special needs mother, and my daughter certainly doesn't need them. I will not allow it. I am done with those toxic people.

*I want to continue to and do a better job of advocating for my child and fighting for her to have a better, more fulfilling life and future. There is so much hope for individuals with AS, and I want her to be a part of that!

*I want to do a better job of educating people not just about AS, but about special needs in general. There are so many syndromes and conditions that fall under the "special needs" category, but there are some things that, as I get to know more and more special needs parents, obviously transcend the conditions and effect all of us. Like what to say (and more importantly, what NOT to say) to a parent with a special needs child.

*I want to do a better job of focusing on my marriage. Cole spends so much time at work, and I spend so much of my time caring for Ava or dealing with Ava's doctors/therapists/specialists that it is difficult to make time for each other. And I know that we/I can do a better job of that.

*I want to do a better job of balancing being a gracious person who is willing to answer questions and not be offended, with being someone who stands up to people who say or do hurtful things towards my family and my daughter.

*I want to spend more time reading, not only my Bible, but in general.

*I want to do a better job of evaluating friendships that have lived out their time, and letting go of those. I have always said that I would rather have 3 or 4 amazing, wonderful friends than 300 fair weather friends. Through this diagnosis, I have seen, in the little and big things, who is who. And I need to be willing to accept those realities and let go.

*One sort of practical resolution is that I would like to be a better housekeeper. I have never liked doing chores, although I have gotten much better because I feel better when my house is clean. But I really still hate doing laundry and dishes. I need to be better!!! :)

*I would like to really think and consider my purpose in life. Obviously I am meant to be Ava's mother and advocate. But I feel like I am being called to do something bigger. Something more. And I don't know yet what that might be, but I hope to figure that out in 2012.


I know many people fail at their resolutions because they have no accountability. I remember back when I was a regular gym goer, I used to *loathe* January because it was so packed and the treadmills were always taken. But I knew that if I just waited until February, it would be back to the same ole' dedicated few. And that is how I sort of feel about all resolutions- they will fail unless you have someone to ask you from time to time, "hey, how are you doing?" And that is what I am asking of you. If you think about it, please feel free, from time to time, to hold me accountable to my resolutions. These are not typical resolutions, but honestly, my life is no longer and never will be "typical." In many ways it is harder and more challenging than a typical life. But, it is more wonderful, fulfilling, and amazing in so many other ways.

These are a few of my favorite things....

...or at least I hope they will be!!! HAHA! Here lately, it feels like we just keep spending money! I hate feeling like that, but at the same time, I feel so blessed that we are able to provide things for our daughter that will help her live a more functional, safer, and more enjoyable life!!!

The child is getting a ridiculous amount of toys (almost all geared toward sensory) from family, mommy and daddy, and Santa! But there were a few items that I wanted to get for her that we didn't add to her Christmas list. And we decided that we could just roll them into the spending of December so that *hopefully* January will be a "light" month! We shall see. ;)

This is a weight blanket, made with frog beanbags. I know it is hard to tell from the photo- I will take a better one when ours gets in. But they have one of these at our therapy clinic, and Ava LOVES it! She will lay on the swing, under this 10 lbs "blanket", and let us swing her for a long time, while she looks through the holes. It is so cute!!! It was a little pricey, as I am learning all things therapy or "special needs" are, but if it helps her, I am so glad to be able to get it for her! Really blessed!

Baby gates. These are extra tall and extra wide, and mount to the wall. Our hope is that we can put these (we ordered two of them) up and keep Ava in the living room with the hallway doors closed. This will keep her out of the kitchen, our bedroom, the pantry, and the dining room/foyer area. It will also give mommy and daddy a much needed break from having to chase a very fast and curious angel all over the house!!! Plus, according to the reviews online, they are very stylish looking. I hope so...if you would have told me three years ago that I would be installing gates in my house, I would have told you "no way- my kids will just have to learn the rules!" Oh, how children change you!



This is our new high chair. After doing a lot of research and reading, we decided to order the Stokke Tripp Trapp chair. We also got the baby seat attachment as Ava is so skinny and I think it might work well for us. But her high chair is getting to be hard to clean, and we want her to be at the table with us. Many online sources and other angel parents/special needs parents LOVE the Tripp Trapp because it grows into adulthood with your child. They come in many colors, but I ordered it in this gray color. It is nice and neutral, and I figured it will go with just about any decor I decide to change to. ;)

And of course, my favorite thing of all- My ADORABLE ANGEL!!! She is the light of our lives, and we are SO very blessed by her each and every day!!!

And lastly, I have to brag for a moment: Last night, we went downtown with my family to eat and ride the trolley. I wore a hat, and all night Ava was fascinated by it. Well, tonight, my hat was sitting on the couch, and Ava was standing there playing with it. And the next thing we knew, she had put it on her head! The right direction and everything! We were not fast enough with the camera, but we were so proud!!!! That is a HUGE deal for Ava to not only know the purpose of the hat, but to have the motor skills to put it on her head!!!! YAY AVA!!! Way to go baby girl! We love you!!!


And if anyone is interested in any of the items I talked about above, here are the amazon links, which is where I ordered from... (I *heart* amazon.com!!!)

bean bag blanket
extra wide, extra tall gate
Stokke Tripp Trapp Chair
Stokke baby seat attachment

Merry Christmas- Home Decor Style

This is our first Christmas in our new home, and as excited as I was to decorate for the holidays, I knew that

A. I have a toddler who also has special needs- the combination of which makes many decorations impractical for my sanity.

B. I have like, ZERO time to decorate these days.

C. The decorations that FILLED our old house don't really go as far in our new, larger home! HA!

So I kept to the Army's motto of KISS (Keep It Simple Stupid!)!!! But I think it is festive in a very livable and comfortable type of way! So without further ado, here is our Christmas 2011....

Ava's tree in her room. One of these days, I am going to get a tree skirt for her!

Entry table. I meant to wrap baby Jesus. Haven't gotten to that yet. But we want to start a family tradition of unwrapping Jesus and placing Him in the nativity as the last gift that is opened on Christmas Eve (which is when we do our family Christmas)

I love this Nativity! Got it on sale at HobLob last year after Christmas and it was the first thing I put out this year!

This was the wreath that was on our front door last year. I painted a canvas this year. Not sure I am going to keep this much longer, but I thought it was a pretty wreath, and really did look good on our old black door with brushed nickel hardware! Now it just dresses up the never used coat closet!

I painted these today while I was working on a HOG canvas for someone. I had the colors out and needed something for this table. Turned out pretty cute! The white has glitter.

Sideboard in the dining room where I serve desserts or drinks for parties.

Our tree in the dining room. I love having a house where our tree can be seen from the street!

Please ignore all of my Christmas serving dishes- I am getting ready to host Bunko this week! The three big trees are the only things that live on our table. Got them at Kirklands for $18 (ALL THREE OF THEM!) I was stoked!

Mantle. It has lights, which I didn't plug in (obviously).

My kitchen memo board, which I have a verse on for each season. And my cute Santa! Love him!

I have bar place mats for each season too! Brings a little fun to the kitchen!

Table runner for the breakfast table. It is reversible (as are the place mats)- with ornaments on one side and the stripes on the other. FUN!

Christmas Dish Towels. You can tell we use the top oven the most! HA!

Card wreath hanging on the pantry door! Love it!

Hope you enjoyed our little Christmas tour! Merry Christmas to you and yours!!! God bless you all!

Becoming Aware

I am sorry I haven't written in a bit. With Thanksgiving then getting sick, things have just been crazy! Shortly after Thanksgiving, I came down with a little cold that, in true Rachel-December fashion, turned into a sinus infection. Then this week, our entire family came down with an awful stomach bug. So this week has just been a total wash. Thankfully I think we are all on the mend now (knock on wood). Cole is on duty at work today after missing the last two days. Poor guy, but thankfully they were pretty understanding with him. I am sure they don't want this mess either! He said he feels much better today and even ate a burrito. Which still sounds gross to me (and I was sick Tuesday night) but I definitely got the worst case. Ava got the most mild case, thankfully!

I am running short on time, and will write more soon. But I just wanted to say, if you are not doing anything tomorrow evening, to be sure and watch NBC at 7 CST! The first ever American Giving Awards will be aired, and during the show, Collin Farrell (who has a son with AS) will be featured along with the Foundation for Angelman Syndrome Therapeutics! This is an amazing awareness opportunity for the Angelman Syndrome community, and I ask that you all tune in and help spread the word! What I really want people to understand is that the therapeutic treatments for AS possibly (likely, actually) have a much wider application. Other neurological disorders like Autism and Alzheimer's will likely be positively impacted by the research!

So tune in and watch tomorrow, December 10th, on NBC!!! I have my DVR set and can't wait!!!

Playing Catch Up

Life around the holidays is always so busy! I hate that too, because I feel like I spend so much of my time rushing around that I never really get to enjoy the season! But, that is just the way it goes I guess!

We hosted Thanksgiving here, and everyone seemed to really enjoy themselves and complimented me on what a lovely meal it was. I think they were just being nice! HA! Honestly, now that I am kind of back in the "grove" of things since the diagnosis, I don't feel as overwhelmed by everyday tasks. Don't get me wrong, I am still not ready to take on a bunch of extra projects, but I don't feel like my home life is caving in on me like I did. And that is good- starting to feel a little like myself again.

I took some pictures of Ava's room after straightening it up for Thanksgiving. I don't think I have ever posted pictures of her room before. All of the bedrooms in this house are HUGE (one of the reasons we love it so much) so I can't get all of her room in one shot, but here are just some different angles...

This is on the far wall as you walk in...

This is by the door.

Here is the book nook with my little angel playing in the corner! ;) She has three big windows on the wall facing the door. Not sure why I didn't take a picture of those. I love all of the light that they let in when we open the blinds!

The guest bathroom. My mom made the shower curtain (I stole the idea from my friend Whitney). I love that it goes all the way to the crown moulding!

 Below are some cute pictures I snapped of Ava. I tried to get a good one to maybe use for our Christmas card. Epic fail! I am a horrible photographer! Oh well!

Sweet girl!

by the tree

being a "toot"

This one cracks me up! That face!

Sitting "big girl" style. She has started sitting in a little chair at therapy and working on things at a table, and she will now sit in her little chair at home! Love it!!!

silly girl!

happy angel

she looks unhappy, but she was actually in the process of telling me a "story"

Really, with those faces, who needs words!!!! I can just imagine her saying "no more, mommy! no more!"


MERRY CHRISTMAS!!!

Perspective...

"Many are the plans in a person's heart, but it is the Lord's purpose that prevails." -Proverbs 19:21

It never ceases to amaze me how, when I start to feel sorry for myself, the Lord slaps me with a heavy dose of "get over it"!!!

Today, I sold a little shelf that I had in my craft room to a lady here in Maumelle. I had never met this lady in person, only had spoken with her via email and phone. She came to look at the piece today, and she had with her, her daughter, who is almost exactly Ava's age. They are less than 2 weeks apart. This little girl is a typical child, and it was the first time that I had really interacted with a child that is right on Ava's age but of typical development. The little girl was so sweet and shy, and immediately sat down and started playing with a few of Ava's toys quietly while her mommy and I talked. I was taken over by just a wave of sadness that came out of no where. Looking at her, I saw all of my hopes and dreams for Ava that I have had to let go of over the past month. But it didn't take long for me to snap back into my reality....this evening I was trolling facebook, and happened upon a post from a friend. Her niece, who is two, is battling brain cancer. Her older sister went to Heaven as an infant due to another illness. Those parents have lost a child and are watching another fight for her little life. And I am sad that my kid doesn't sit quietly and play like her peers?!?! Or that she won't go to prom?!?! How silly!!!! My baby is here, with me! At home. I can love her and kiss her all I want to! That, my friends, is perspective.

The reality of it is that my child isn't typical. She is special! Earlier in the day, I met a lady that had made and painted some wooden doll furniture as part of Ava's Christmas gift. As I was driving to meet her, I was thinking to myself how sad I was that Ava probably wouldn't play with the furniture as intended for quite some time, if ever. Then when I was talking to the girl, I was telling her about Ava. Turns out that she had lost her only daughter just hours after birth. And I just thought to myself "how selfish are you, Rachel?!" And this lady just kept talking to Ava and loving on her. Because, given the chance, I am sure she would opt to have a "special needs" daughter over one in Heaven any day! And Ava is so very lovable! If you have never met her in person, I don't think I can adequately describe how she just pulls you into her being and engages you with a smile that lights up a room! And I am so thankful for that part of her- be it Angelman Syndrome or just her personality, maybe a combination of both? But it is remarkable!

Ava's life, and our life with her, will not be without it's significant challenges. But it will be one filled with love, hope, memories, and joy! And for that I rejoice. I still pray that one day a cure will be found, and that one day my baby will be able to do the things that her body and that stinking little pesky 15th chromosome are keeping her from doing. And I will continue to do everything in my power to make her life as pain free and inclusive as possible. But I mostly pray that I don't take one single part of being her mother for granted. She is a blessing beyond compare, and everyday I look at her and thank the Lord for allowing me to be her mommy. She just makes me happy. And tired. ;)

And lastly, I would like to issue you a challenge. And this isn't just for you, but (mostly) for myself as well. I challenge ALL of us, that each time we start to feel sorry for ourselves or our circumstances, we take a moment and take stock in what we do have. In our blessings. I think if we all spent more time counting our blessings, we wouldn't have much time at all to worry about the things we don't have. Because there is always someone who is hurting more, struggling more, more in need... And what a blessing it would be for everyone if we all prayed for them first?

Balancing Act

I have always been a "yes" person. My parents instilled a strong work ethic in my sister and I, and I think the desire to please people and not say "no" is a by product. Honestly, I have always liked that about myself. But lately I have started having to say "no" and prioritize my projects. I don't know why I feel like I have SO much more going on since the diagnosis. We had the same therapy schedule prior to that phone call? I guess with the holidays coming up and with the emotional drain that the diagnosis has caused, it just seems like I have so much going on. I mentioned to my mom today that I really feel like I need to make better use of Ava's nap time, get more things done. She said that she thought I got a remarkable amount of things accomplished considering. I guess it is all perspective- she doesn't see the little naps I take while Ava is sleeping! HA! But in my defense on that, Ava is a *very* active child. You might be reading this, thinking "yeah right! My kid is active too!" But I assure you, Ava can crawl circles around just about any other child out there. In fact, all of the therapists in the clinic always joke about how she is just all over the place. They have even offered to let me nap in one of the small play rooms! HA!

I have had to turn down some paying projects- people wanting things for Christmas. I hate to do that, but I just feel so drained and overwhelmed, with the mix of therapy 4 days a week, the doctor and specialist visits, the phone calls, Cole being gone so much, and just having to manage our usual household goings on- which in our household are usually not "usual."

So here are some things I have been working on finishing before I start the cleaning needed for Thanksgiving! Sorry the pictures are such poor quality- I am too lazy to find my real camera, so iPhone pictures must do...

Here is the secretary my sister gave me. She bought it off Craigslist, but it was too small for her, so I traded her my big desk out of my craft room for this! But he needed a little TLC. In the form of Annie Sloane Chalk Paint. :)

Painted with Annie Sloane Chalk Paint in Graphite. Then I distressed it. It did take two coats (I am guessing because of the dark color and finish of the secretary). But it was well worth it! I even love the existing hardware on it! Didn't have to paint them or anything! I love when things work out like that!

Here is another thing we have been working on. My parents are AWESOME- I just needed to say that. :) This is the "centerpiece" behind the sink! I love it!!! SO excited!

The sink side in progress... see the peak of my granite! Eeek! I love it and can't wait for the backsplash to be done, then I will show it to you. Which will hopefully happen soon! We plan on grouting today!

Here is the range side. Still with the spacers (aka washers). The dark tile is hard to really see in the pictures. But it is dark brown with some gray in it, and it is textured so it almost looks like wood or slate. Such cool tile!

And continuing the trend of horrible (but adorable) iPhone pictures, I leave you with a few of my sweet angel! She is just so precious and I am so blessed to be her mommy!!!!

Diggin' for toys!!!

Considering a joy ride! ;) That ball in the background is our "giant spiky ball." Best $13 at Toys R Us I have ever spent! She uses it for therapy and therapy exercises all the time. I am really thinking about going back and getting another one.

Sweet girl sleeping away. Precious!

I could just sit and watch her sleep all day! She is so cute!

I promise I will share with you our "big news" when I can! I will give you a hint: it is employment related, so we are waiting until Cole is in the uniform to say anything publicly! ;)

Thankful

There has been a big movement on Facebook recently, for everyone to post each day what they are thankful for. I decided not to participate because I was worried that some days, I just wouldn't feel very thankful. Well, so far November has been so filled to the brim with blessings of all kinds that I thought I should join up a little late, and thought that my blog would be a great place to post my "catch up" thankfulness!!!

November 1: I am thankful for my incredible God, who has blessed my family and I beyond measure. He sent His only Son to die for my sins and the sins of the world, and as a parent, I have a small glimpse of the sacrifice and love for the world- for US- that that must have taken.

November 2: I am thankful for my amazing family. I love them more than I could ever put into words, and my life is rich because of them. My husband is an incredible father and provider, and I don't know what I did to deserve such a wonderful partner. And of course my Angel. Ava is the light of my life and my heart overflows with love for that sweet girl! She may not ever know or understand how much I love her,  but I pray that she feels it each and every day!

November 3: I am thankful for my awesome friends! They cheer me up when I am down, they love me when I am sad, they carry me when I am weak. They have been amazingly supportive over the past month and I am not sure I could have made it without them.

November 4: I am so thankful for the beautiful home that the Lord has blessed us with. It meets all of our needs so well, and is a clean and safe place for us to be a family. I know that this is just our "temporary" home, made of brick and wood. But it means so much to us and I am thankful that it is ours. Well, ours and the banks! HA!

November 5: I am thankful for answered prayer. We had a HUGE and AMAZING answer to prayer happen on the 3rd, and I will share with you when I can (already have the post written- just waiting for the right time!) but it was something that we had been praying for for a long time. And the answer had always been "no" until that day. And that day- really that week- we saw the LORD just open door after door and lay out a path for us like never before. It was AWESOME to see God work in such a tangible way!

November 6: This is in with day two, I know, but I am thankful for my parents. They give so much of their time and talents to help my sister and I, and we are so blessed beyond measure to have them. They sacrificed so much for us growing up, and I pray that they know what a blessing they are to us.

November 7: I am thankful for my health, and the general good health of my family. So many people are struggling with sickness or pain, and I am so thankful that the Lord has given me a fully functioning body so that I can take care of my child. And I pray for continued good health for us all.

Whew! there! Caught- up! I must say, there is so much to be thankful for right now, this might just run into December!!! HA!

I can't wait to share my good news with you! It is something that, in a few weeks time, will drastically change our lives (for the better, I am sure) and I am just giddy with joy!!!!

Angel & the Lady Bug

Happy Halloween!!! Our little Angel was dressed up like a lady bug tonight. Albeit a lady bug who refused to wear her wings and antennas! HA!
So while I was waiting for the Trick or Treaters to come to the door tonight, I sat and started reading a book called Finding Glory in the Thorns: Hope and Purpose in Life's Painful Seasons which is a book that popped up on my amazon search for books about AS a few weeks ago. It was written by a couple who have three daughters- the youngest of which has AS! I didn't know it at the time I ordered the book, but thinking back, I guess that is why it came up on a specific search for books on AS. It is a wonderful book for any parent or family that is going through a hard time in life, and specifically those with a special needs child. I have only read the first few chapters (those pesky trick or treaters kept interrupting me! HAHA!) but I am really finding a lot of purpose and value in the words. One thing stood out to me tonight that I really felt lead to share. So lead I couldn't sleep until I wrote this post!

Each morning when I get up, I have to give myself the same pep-talk: You have a child with Angelman Syndrome. Your daughter is disabled. Your daughter has special needs. And GOD is still in control. Every morning, I say those things to myself. Each morning it gets a little easier to accept. But I still find myself thinking "it wasn't supposed to be like this" so many times in my day. There is a palpable sense of dread and sorrow when a toy commercial comes on and "typical" children Ava's age are shown doing things we could only dream of our Ava being able to do right now. When I have to explain to the nosey old lady in the store why Ava doesn't wave to her. Or try to not break down in tears as the mom pushing the swing next to ours at the park complains that her child won't "shut-up." So many things I see and hear and I just can't help but think to myself "this wasn't supposed to happen. It wasn't supposed to be this way." And not all of the times I think it is it a sad moment. Surprisingly enough, many of the times I think that phrase is when Ava does something exciting and I think it in a happy context because I know just how amazing she is! I spend a lot of my day trying to mentally and emotionally balance my logical expectations for her based on the AS with my emotional and deep desire for her to break the mold for AS and do extraordinary things. It is quite the tightrope walk in my head these days- a balancing act between not getting too encouraged and hopeful, but still enough to push through our busy schedule of therapies and doctor visits.

As I was reading the book, the heading "It Wasn't Supposed to Be Like This" caught my attention. Because, I think, it is such a familiar phrase to me these days. The authors expressed so many of the feelings and emotions that I feel that I was almost brought to tears that someone besides Cole and I, another parent, feels the same way. They then pointed out that that is probably what Joesph thought when he found out that Mary was pregnant. His life was turned upside down in a way he never imagined. But he listened to the LORD and look what happened! Prophecy was fulfilled and the LORD JESUS was born! Then they pointed out that Peter expressed a similar feeling to Jesus when Christ told him that he was going to be executed. And by that act of Christ dying on the cross, the world was saved!

Life doesn't always turn out as we plan. This is a hard lesson because, if you know me, you know- I am a PLANNER! I always have been. But I learned fairly early that a good planner is ready to handle anything and be flexible in their plan. They adapt. So I am adapting. It isn't without some resistance and frustration and sadness. I still weep and mourn for the future I dreamed of for my child. I still have moments where I think "this can't be happening" and feel numb to it all. But the Bible teaches us that our plan isn't always the one that the Lord has in mind. But that the Lord's plan is always the one WE should have in mind. Because His plan is the perfect plan for us. It may not be what we want or expect, but it is what is best for us. Ava doesn't have a typical future. And the Lord knew that before any of us were ever created. Before the world was created. But she has a beautiful future that the LORD planned for her long ago, and I am so thankful for the fact that the LORD loves her so much that He personally planned the best future for her. And that I get to be a part of the spectacular life He has in store for her!!!

This was honestly the best one we got in "full costume"...she just was NOT having the headband AT ALL!!!

I adore this one, even with the blurriness! She is looking at me like "what the heck are you doing to me mom!?" She may not talk, but with faces like that, does she really need to?!?! HA!

My goofy Angel STANDING with very little support from mommy. She is doing that more and more these days, and even stood for a few seconds by herself at PT the other day!

Someone had to wear the antennas...

...although Ava didn't like them on his head either!

Happy Lady Bug!!!

And now we have ditched the wings. She looks more like a can-can girl than a lady bug! HA!

Stink Bug getting into her diaper changing goodies!

Mommy and my sweet bug!



If you look hard, you can see she is giving me a sweet Ava kiss!!!