Wednesday, November 30, 2011

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!"


Monday, November 14, 2011


"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?

Saturday, November 12, 2011

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! ;)

Monday, November 7, 2011


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!!!!