Saturday, September 29, 2012

Martha Stewart, I Am Not

I recently posted some pictures on Facebook of different things I am working on for Archer's nursery, and several of my friends have been singing my craft praises. They are totally and woefully undeserved, I can assure you! But I appreciate the sweet words!

Here are just a couple of the projects I have going or have recently completed for his room... (Pardon my photography skills- or lack thereof!)

I found these large letters at HobLob for 12.99. I was going to order one online, but the size and thickness I wanted was going to be more than I wanted to spend, so this worked out really well! Cole brought home some expired aviation maps and I modgepodged one over the A, and painted the edges the same Navy as his walls will be. This will be inside of a white square, framed with moulding, above his crib. I haven't decided if I want to do his initials or just the single A.

Not really a project, but Cole and I found a topographical globe at the Habitat for Humanity ReStore this morning for $7!!! We thought it would go really well in his room!

This is an ugly brass lamp that we found at the Habitat for Humanity ReStore for $6. My plan is to spray paint it a gloss red, then get a drum shade and cover the shade with the same fabric as his bed skirt is... You may remember that we are making his bed skirt out of these sheets.

I did a little pinterest project for Archer and Ava last week, and made them both some new closet dividers. These are the ones for his room. I think they turned out pretty cute! They only work if you have the rod style closet system (not wire) but it is a cheap and fun project, not to mention useful! You can find the tutorial here. I just used a sharpie paint pen to write the sizes on, instead of stickers. But either way works!

 When Ava was born, she came three weeks early, and I didn't have time (or honestly, energy) to make her a hospital door hanger. My sister bought one from the gift shop for me, and it was really cute. But I really want to make one for Archer. I just haven't decided which type I want to go with...



Wreath? (obviously a less pink version!)

What do you think? What type of hospital door hanger do you like? I also thought about doing a burlap stork! I think that would be cute!!!

Friday, September 21, 2012

Talking to People and Project

Now that Ava is getting bigger, older...and looking the part of a 2.5 year old, her differences are more apparent. Fewer people just assume she is just long for her age, and that has lead to some interesting encounters in public. Both good and bad.

Most of the time, it is not a big deal. Many people don't really pay attention to her (much to her dismay) or, they will flirt and talk back to her as she flirts and squeals at them. I am sure they see something different about her, but the vast majority of people just love her and see how happy and outgoing she is, and honestly are not that worried about what might be "wrong" with her.

Some people will ask questions. Which I absolutely do not mind at all. I might be in the minority as far as Special Needs moms go, I don't know. But I love educating people about Angelman Syndrome and Ava. It makes me feel like I am doing something to make the world a better and more accepting place for my sweet girl. I still use my Angel Cards quite often and have made a dent in the box of 1000!!! Remember them???

I see mostly that there are two groups of people that are the most willing to ask questions about Ava and learn about her. One is mothers who have special needs children themselves that I meet out and about. I guess because it is kind of a kindred spirit thing. We understand each other to a certain extent without even knowing anything about each other. There is a commonality, a bond there.

The other group is men. Just men in general. I don't know if it is because they are less worried about social grace or saying something unintentionally hurtful... I think women worry about those things whereas men mostly don't. But I have men all the time ask me about Ava- why she doesn't speak or walk well. Why she is so happy. Am I worried about the baby having the same thing. And it is so wonderful to educate them about Angelman Syndrome. Going to Lowes or Home Depot with Ava (who is the biggest flirt EVER, especially with men) is almost like going with a celebrity. We get stopped in just about every aisle!!!!

The other day I was at Rhea Lana (a consignment sale) and one of the volunteers and I were talking as she helped me with something. She was commenting on how cute Ava was and I thanked her and she asked Ava a question. I answered for Ava, then explained that she is nonverbal because she has Angelman Syndrome, and that she understands what is said to her...yada yada yada.... The woman smiled and said that she wondered if she might be on the Autism Spectrum or have CP (ironically those are the two most common misdiagnoses of AS) and that her son has Aspergers and is Bi-polar. We started talking and I gave her one of my AS cards, and we both walked away more educated about the other's challenges as a mother and the other's child. It was so nice.

But sadly, not all experiences are so positive. Today, I took Ava to the park before lunch. It was a beautiful morning and I really want her to start spending more time outside now that the weather has cooled off and she can walk more. When I pulled up, the park was very crowded with a moms group apparently, but the slides were open and a couple of the Ava friendly swings were open, so we went up there anyway. As soon as we got up there, Ava wanted down to walk around. And she had a BLAST exploring the playground area. And I was so glad that she didn't notice (or at least didn't care) that all of the mothers were staring at us and especially at her. I felt like I was going to come out of my skin. I wanted to scream at them to stop staring at her. I wanted to sit them down and give them a lesson in AS, manners, and how to act around people with disabilities. I wanted to run away and hide from them. Maybe it was my hormones, because usually I handle rude people much better. But today it just cut me to the core. Perhaps it was because my child was in their cross hairs, not me. I have a voice. I am an adult. Be rude to me. Stare at me. But Ava is a child. A toddler. And she cannot speak for herself. And I just felt like, how dare they do that to a child. Because they were not the stares of sweet smiles, thinking "how cute is she." They were gawking, rude, almost hateful "how dare she bring THAT child to the park with our kids" stares. And they pretty quickly all moved to the other part of the playground. Which was fine with me. We swung for a bit, then went for a nice walk around the park. At the end of the walk, one of the worst offenders was leaving with her children, and we were right next to the road out of the area, so she had to drive right past us. And she literally almost ran over a man walking his dog because she was staring at Ava!!! I just smiled and waved really big, as if to say "Yeah! I see you looking!!!" What else could I do?

I, of course, do not wish something like Angelman Syndrome on anyone or any one's child. Never. But sometimes I do wish that people could understand what it is like- the hurt and the pain and the issues that other parents never have to deal with. I wish that people were more educated about special needs and what is acceptable. I wish that they could understand that pity is not what we want. We just want to be seen as equal. Ava is different, and she may always be. But she is not any less. And if you spend any time around her, I think you see that.

Okay, on a lighter note...

I have decided to try this project to go above Archer's changing table, and have been searching for a photo to use. I still haven't decided if I am going to try and get Cole to take one of Angel One to use, or use one of these that we already have... What do you think? It will be in black and white...

This is the S76 that Cole used to fly in the Gulf of Mexico. It is on an oil rig in this photo.

This is one of the blackhawks he flew in Iraq. I wish it didn't have that sun shield thing on there. But then again, as hot as it was, it is probably a good thing!

This was taken by some brave medic (I think) during hoist training with the army. It is just a really cool photo!


Saturday, September 15, 2012

Mom of Two Worries...

I think when a mother is preparing for the transition of going from one to two children, there are always a lot of concerns and worries she has. How will I handle two children? How will my first be with the baby? Will I ever eat a hot meal or use the bathroom in peace ever again? (HA!) But when your first child has special needs, there are a whole different set of worries to, well, WORRY about. I was laying in bed last night thinking about this. Wondering how a (Lord willing) typical Archer will understand his sister as he gets older. Wondering if he will understand why she isn't punished in the same way as he is, will he understand why she is "allowed" to do things he isn't. Why concessions are made for her and not him.

And I realized that he may think (at least some of the time) that having Angelman Syndrome is kind of a cool deal. After all, Ava will get things for therapy that look like toys, get to go horseback riding (for therapy), have special days at the pool and with adult playmates (therapists) that he doesn't get. And I kind of love that thought. Because I want him to understand that his sister is different, yes. But that it isn't a shameful or embarrassing thing. And that she is no less loved and adored by his mommy and daddy than he is. And no more, either. Which is the other side of that coin. How do we make him feel special and loved and adored when so much of our time is spent doing for and working with and going for Ava. How will he understand that we would do the same things for him, should the roles be reversed?

I love that Ava is going to have a brother that will love her and rough house with her and, when the time comes, hopefully protect and look out for her. And I love that Archer has a big sister that is so outgoing and loving and happy and will love him and be his forever best friend. It will certainly be an interesting dynamic to watch, and I can't wait to see how they are with each other, especially after Archer gets old enough to really play and interact with Ava.

I don't have all- or really any- of the answers to these questions and worries. But I know that the Lord does. I know that He has made Archer the perfect son and brother, the perfect fit for our family. And I know that, day by day, I will learn to be a mom to both of my babies, and give them both the love and attention that they need. I think Archer will bring a balance that our family has been lacking really since Ava was born, but especially since we started our never ending journey of therapy and doctor appointments and tests. And I am looking forward to that!

Only 14 (or less) weeks until we get to meet our sweet baby boy! So excited! And a bit nervous! HAHA!

Wednesday, September 5, 2012

Big Girl Room: A Progress Report

I just wanted to write a quick post- more for my own memory than anything- about how we are coming along on Ava's big girl room. Before we can even think about starting Archer's nursery, we have to complete Ava's room. Why, you ask? Well for one, the furniture from her room (our nursery furniture) will be in his room, and so she needs furniture of her own. Big girl furniture. And with a special needs child, that isn't as easy as running out and buying a cute twin bed at the local furniture store. Ava really needed a big girl *enclosed* bed. For her safety and our sanity. But after looking at the special needs beds on the market, I was less than thrilled. They were all either A. UGLY, B. not suited for her needs, or C. BLASTED EXPENSIVE. In most cases, all of the above. (And when I say expensive, I am talking anywhere from $6k on up!!!) So I did what any girl who has a daddy that can fix or build anything does... I got my idea of what I wanted together, called up my sweet dad, and begged for him to make her bed. And it didn't take much begging...that little girl has her Poppy wrapped around her little finger!!! More than I could have ever dreamed!

I took the idea for her bed from this one I found on I sketched out my ideas and my dad and I designed and redesigned and worked and reworked. But we are finally in the building process and (knock on wood) all reports from my dad are that it is going well. When it is finished, it will not only meet her needs for a very long time, but be beautiful, durable, and will look like a "regular" bed when she isn't sleeping. Something I know she will enjoy because she LOVES sitting on and playing on the guest daybed in the playroom!

And her's will also have drawers underneath. CHA-CHING!!!

So far, I am guessing that the materials have cost us about $1200.00. That includes lumber, paint, & hardware (which is a whole 'nother story in & of itself). Thankfully, the labor is paid for with smiles and thank yous! My dad is keeping the actual accounting of it in case others are interested in the plans or details when we are done.

I haven't 100% decided on a paint color. But I am thinking Valspar's Twist of Lime.

Don't worry- it isn't quite so bright on the wall. I have a test swatch painted.

I am still loving her bedding- Moroccan Garden from Bed Bath and Beyond. I was really struggling with what to do about the bedding when I saw that a friend had used it in her little girl's room, and knew it was perfect! It is a quilt, like I wanted for Ava, and is busy enough that it will hide stains (I hope!) Here is an actual picture of one of her shams...

I bought her an ugly old (but solid) dresser on craigslist several months ago. I think I paid $75 for it. I have been very slowly working on it but have really kicked it into high gear since we have roughly 15 weeks until baby A arrives! Here are some before pictures...

I popped off the raised panels on the front because 1. they were already loose and I didn't want to repair them, and 2. I thought it dated it a bit. Plus, I knew it would be much easier to sand and paint without those!
Here is how it is looking thus far...

I still have a long way to go, but I feel like I am in the "home stretch" with it. Being 6 months pregnant doesn't make it easy to get down and work on it, but I am managing! If you look closely, (I hope) you can see that the flower design came from her bedding. The knobs are made to look like glass, but are actually acrylic. They were a splurge at around $6/each (we ended up needing a total of 14), but worth every penny! They will go on the rest of the drawers when I am done, as well as the drawers under Ava's bed.

I had originally pinned this picture on my Archer's Nursery pinterest board, but then I decided I liked it for Ava's room. Her board will be painted pink and have fun pink, white, and lime accessories on it. It will hang over her dresser and will serve to hold diaper changing stuff for as long as we are in that stage, then will just be a fun thing to change and play with as she gets older.


I have a few more plans up my sleeve that I am saving for the "big reveal", but I really cannot wait for her room to be done.

I also just wanted to make note.... I was asked by several people recently, why I was putting so much into Ava's room. Time, effort, money... Well, Ava is my daughter. I love her just as any typical parent loves their child. And Ava is fully deserving of a beautiful and thoughtful big girl room just as any other child is. She may not appreciate it as some do- and she may appreciate it MORE than some would. And as time goes forward, we may have to make changes to keep her safe and meet her ever changing needs. But this is something that I can do for my baby girl, and just because she is missing a chromosome doesn't mean she has to miss out on this part of her childhood.

I am also doing it for me! I love decorating and designing and painting. And I have been looking forward to doing this room since I found out she was a girl so long ago! There are so many things I am going to have to miss out on, so many shared mother/daughter experiences that Ava and I won't get to share. This is one that we can and I relish every second of it. And I know that, in her own way, she will love and enjoy her new room. And that makes my heart sing.