There is a statistic floating around that says one in five US households has a child with some sort of special need- be it a mild learning disability, a physical disability, or something more severe like Angelman Syndrome. If you know me or have read my blog for any length of time, you know that Cole and I have a daughter with Angelman Syndrome- a rare and, in her case, random neurogenetic disorder.
I was once told, very early in Ava's diagnosis, that the worst thing that ever happens to your child is the worst thing that happens to you as a parent. I have to remember that often. I will read about parents struggling with something comparatively minor to AS, and think to myself "man, I wish we had THOSE problems!" And I know there are parents out there who feel the same about me! Because the truth is, as profound a disability as Angelman Syndrome is, Ava is doing remarkably well! She is walking before her 3rd birthday, when many with AS never walk. She has sat up and fed herself since before her 1st birthday, which is something some with AS never do. She is making huge strides that some twice her age aren't making...we are really very blessed!
Still, as much as I know we are blessed with Ava's progress and abilities, I still have moments- just about every day- when I see her struggle with something and a sorrow and pain creeps into my heart. And I find myself thinking "why her?" Awww, the "why's." I think every special needs parent, regardless of their child's diagnosis or challenges, have these moments. For me, I find myself thinking "why her? I did everything I was supposed to do as a mom!" and "why her? This was not supposed to be how things happened!" Because you want someone, or something, to blame for what is wrong with your child. When, the reality is, it was God's will. That, for me, was- and is- one of the hardest things to accept. Knowing that the LORD could cure Ava if it were His will, but so far anyway, it isn't. His will is for her to have Angelman Syndrome.
A fellow Angelman Syndrome mom posted something recently that was an amazing reminder to me and just blessed my heart, and I wanted to pass it along. She shared from John 9...
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
Powerful, right?! "but this happened so that the work of God might be displayed in his life." Ava has AS so that the work of the Lord can be displayed in her life as well. I fully and 100% believe that. Being a special needs parent isn't easy. Far from it. There are days where you want to give up. Run away. Be someone else. But where the challenges are multiplied, so are the rewards! And sometimes the world thinks that we, as parents, have done something wrong to be "punished" with a special needs child. Oh, how ignorant a thought. Having a child with special needs is a blessing no one can understand unless you experience it! Perhaps an unwanted blessing at first, and one that comes with great and unique challenges. But it forces you to be your best, to dig deeper for courage and strength and patience, to turn to the Lord when you feel you can't go on...it forces you to be a better person, parent, and Christian. And that is a blessing!
Monday, December 3, 2012
There is a statistic floating around that says one in five US households has a child with some sort of special need- be it a mild learning disability, a physical disability, or something more severe like Angelman Syndrome. If you know me or have read my blog for any length of time, you know that Cole and I have a daughter with Angelman Syndrome- a rare and, in her case, random neurogenetic disorder.
Posted by The Brewers at 9:09 AM
Sunday, December 2, 2012
12-2-12.... I am officially 37 weeks!!! Archer is now considered a "full term" baby! Although I know from experience with Ava that, if he were to come today, they would call him "near term" and put him under heating lamps to make sure he was fat enough! HA!
My water broke with Ava the morning I hit 37 weeks. I literally rolled out of bed, my feet hit the floor, and a gush of water went everywhere! So when I got up this morning, I was honestly a little surprised that it didn't happen again! I know every pregnancy is different, and mine have been no exception, but I just thought (for some reason) that labor would happen the same way!
I wrote about my "birth story" with Ava here. Honestly, if things happened the way they did with Ava, I would be really happy. There is only one or two things I would change (given the choice) but I don't think you want to read about them! Trust me! HAHA!
I will not go so far as to say that I am all ready. But I think I am as ready as I am going to be. I have been really trying to keep the house neat and tidy- no small task- and the laundry caught up- again, no small task- so that when I go into the hospital, Ava's keeper's at least don't have to search for anything. The "Ava Instruction Manual" is complete- all 10 typed pages of it. It has dividers too. I need to add the addendum for her being on antibiotics right now. But I do have that at least written out. We put the carseat in the van the Saturday after Thanksgiving, and I set the pack & play up in our room that same weekend. I have it stocked with diapers, wipes, Vaseline, lotion, etc... all the things you need for those wonderful middle of the night feedings! This past weekend, I got busy and put together 14 freezer meals. That way, I don't have to worry with food after he is born for a while, which will be nice!
Today is the first day I have also felt emotionally ready, too. Maybe because it is a mental thing-37 weeks. Full term. He is okay to come now. But for the last few weeks I have been trying to soak up every second of it just being Ava and I or the three of us. I know that once Archer is in the mix, it will be like he has always been there- at least that is what I am told. But still, I have been a little sad to think about my girl not being an only child anymore. Especially when Cole is working. It was just her and I for so long when he was deployed, then even when he came home, she and I spent so much time together while he worked. And still, she and I do so much together... it is just hard to imagine having another child along for the ride! I went to Home Depot today with my mom and Ava. We needed a couple of things for the bed, and since I don't know when I am going to have the baby, I wanted to go get them now. After he is here, I have no idea how long it will be before I am able (and willing) to get out and about!
So, little Archer...I *think* we are as ready as we are ever going to be for you to come! So whenever you are ready, little man!!!! Can't wait to meet you!!!
Posted by The Brewers at 7:58 PM
Thursday, November 29, 2012
Well I am 36 weeks and 4 days! I have about 10 good, real contractions each day now. And I am already starting to dilate and efface. Baby Watch 2012 has officially started!!! I am keeping my fingers (and legs) crossed until Sunday, when I hit 37 weeks and officially become full term. I had Ava at 37 weeks (the DAY I hit 37 weeks!) but I would really love Archer to stay in a little longer. Being a "wimpy white boy" and all!
I have been reflecting back on when Ava was born a lot lately. Before I knew that she had special needs. Before I had ever heard the words "Angelman Syndrome." I had such high expectations for her life. I wanted her to love the Lord, be a kind person, bring joy to those around her- things I still expect from her. But I also wanted her to go to college, get married, have her own family... expectations that had to change last October. Letting go of those hopes and dreams for her life were hard- one of the hardest things I have done- and I still have moments when I think about her not having a wedding day or knowing the love and joy of becoming a mother...lets just say that sometimes, my heart still breaks a little (or a lot) for those moments lost. But I also realize that having to let go of those expectations for her life has made me a better mother for both her and Archer.
You see, I know that, when Archer is born, I am going to want the same things for his life that I wanted for Ava's when she was born. But I am not going to expect them. Life- ALL LIFE- is a gift. And just because someone isn't born to live the life we expect doesn't mean that they are not born to live the life GOD expects! Ava taught me that. She teaches me a lot. So when we welcome Archer into the world, while there are things that I hope and pray for his life, my one and only expectation is for him to grow into the man the Lord wants him to be.
Posted by The Brewers at 7:16 AM
Saturday, November 24, 2012
I was really going to wait until we had Archer's crib in his room, but we have hit a speed bump with Ava's bed- ahhh, the joys of designing your own furniture! So I decided to go ahead and show off his room, sans the crib (for now). You will just have to use your imagination on what it will look like after his crib is in place! And I promise to show the pictures after his bed is moved into his room! But here is the rest of the space!!
And you will have to forgive me...you know I am a horrid photographer!!! Sorry!!!
|This is on the wall as you enter his room. It is his daddy's flight patches, framed out in trim and paint.|
|As you enter his room... I am still deciding on a rug, if I do one at all. Rugs on carpet- although I have always had one in Ava's room- seem redundant and annoy me to clean.|
|To the left of the closet- the letters are just cardboard letters from HobLob painted to look metal!|
|Chest of Drawers|
|I just love this poster!|
|Plane "dive bombing" above the chest of drawers.|
|Frame box and map print letter above his crib area.|
|This is where his crib will live!|
|Corner next to his crib, with his soda shop table and chairs.|
|Two planes "dog fighting" above his table and chairs. Our resident pilot hung these and got creative with back stories for them!|
|My friend Amanda made this adorable banner for his shower, and as soon as I saw it, I knew that it HAD to go in his room and exactly where to put it!!!|
|My thrift store lamp revived and adorable frame!|
|Ava's favorite part of the room (besides his closet!)|
|We hung the mobile above the chair.|
|And that is it! Oh, one more detail...|
|Hook for jacket or bag...isn't it adorable! Found it on Amazon! It is hanging below the FLY letters! Just too cute! |
Posted by The Brewers at 9:09 AM
Thursday, November 8, 2012
Well I am happy to report that, at almost 34 weeks, the nursery is all but finished!!! "All but" because Ava is still using the crib right now. But her big girl bed is just about there, and so I know it won't be long before we have the crib in it's new home as well!!! Saturday and Sunday I worked hard (with a LOT of help from my mom and Cole) and got the board and batten done. Then I painted the board and batten and picture frame boxes Tuesday night. Then yesterday morning, Cole moved the furniture into place for me and we set to work getting everything put up one the walls (the blue has been painted for weeks so no waiting! YAY!) and putting things away and accessories out. As much as I had been itching to work on decorating it little by little, I kinda love that we had more of a "load in" like they do on design shows! It was fun seeing the room in my head take shape!!! I am waiting to share the pictures (sorry!) until it is totally finished. Like I said, we need to get the crib in and then hang up the model planes and the mobile. But that is it!!! The rest is FINISHED! Sweet Archer won't come home to a construction zone!!!
This entire time we have been working on the nursery, we have been fighting one form of sickness with Ava or the other. Bless her heart! She had an awful stomach bug that just wouldn't leave for about two weeks, and then last night she was up until about 2 am screaming. We think it is an ear infection and we are headed off to the doctor today to find out and hopefully get some medicine. I am so tired of my baby girl being sick!!! She had a myoclonic seizure episode day before yesterday- the first of that kind- and I was told by other AS parents that those can be a sign of impending sickness. Sure enough.... but at least now I know! And her neuro has changed her seizure medicine so hopefully that will remedy any other episodes we have like that.
I promise to share pictures of both kids rooms as soon as the beds are in place!!! I still haven't hung anything on Ava's walls (except the peg board and window treatments) so her room is still very, well, GREEN when you walk in. I can't wait to get her MASSIVE white bed in there and some things on the walls to tone it down a bit! HAHA!
Posted by The Brewers at 8:06 AM
Monday, November 5, 2012
This weekend was much more productive than I expected, and as a result, we are nearly finished with the board and batten on the walls! Ava did much better Saturday and yesterday with the nail gun noise. I think that it was because she didn't feel good last weekend when we were trying to work on it. Saturday, my mom came over and we finished putting all of the rails up. Basically we did everything but the top trim and the picture frame moulding. Saturday night after Ava went to bed, I got busy and caulked everything that we had done to that point. Sunday, I was able to get the top trim up (with help on the angles from Cole- I am horrible with angles) as well as the picture frames! Then last night- after folding 4 baskets of laundry and doing the dishes/cleaning the kitchen- I finished caulking and got the room ready for paint! YAY!!! I plan on painting all this week during nap times. Cole asked me if I was nesting. I told him that I knew it wasn't nesting because I wasn't feeling compulsive about it. I just want it finished!!!
I really didn't want to share any pictures of the room until it is totally finished, but last night I propped the airplane panels (which I have now decided will go above the changing table...) on the top rail just to get an idea of how it looks. I snapped this picture with my phone, so sorry for the poor quality. But I am so excited! I can't wait to get it all finished!!!! YAY!!!
The panels will be hung on the wall, of course. But I am so glad that they are as big as they are! I had worried they might be too big. And they were, for what I originally intended (you may recall I was going to hang them above the closet doors). But I think they are going to be great here and give the room some much needed balance, since all of the other walls are pretty "heavy" aesthetically.
And even though the room isn't finished, I wanted to go ahead and give the details of the products and budget. I know, when I read a blog about a room redo, I am always interested in where something came from or how much something cost, so I wanted to do that for Archer's room.
Furniture: The crib, changing table/dresser, and chest of drawers are all from the Bonavita Peyton collection. This is the furniture that Ava used, and we will use it for all of our kids. We bought ours from a local children's boutique (Pickles and Ice Cream), but you can get them online too. All three pieces ran us about $1700.00. Which is a lot for baby furniture, I know. But it has held up really well, is extremely well made, and will convert to "big kid" furniture when the time comes.
Glider: My parents got us our glider as a Christmas gift the year before Ava was born. It is a Shermag brand and has an ottoman. We really love it! It is really comfortable and locks in place so tiny fingers don't get smashed once they are mobile. I have no idea how much ours was, but Target has some in the same brand for around 160.00-200.00.
Board & Batten: We ended up spending about $130 on supplies for the board & batten. We were lucky in that my dad had all of the tools we needed and we didn't have to rent or buy any. We went with the cut up MDF boards, and had we not done the trim at the top and the picture frame mouldings, we could have gotten everything for around $80. But I am glad we topped it off with the piece of trim. A little more work and money, but it makes a big impact!!!
Paint: 4 gallons at $20/each. We used Glidden Paint+Primer+Fill, and I was really pleased with it, as was our painter that we hired to do the navy. The top is Glidden Rich Navy & the bottom was a custom match to our trim color. Hiring the painter only cost us $40, and was worth 10x that!!! He is awesome and is super good!
Curtains: I found the curtains at Bed, Bath, & Beyond for about 29.99 per panel, which is a great price for 84" length! I bought two panels, and will use them with the rod and sheers we already had in the room. I am still undecided on the window treatments, but these were an economical solution that I won't feel too guilty about changing later if I decided to do so!
Bedding: The bedding for the room came mostly from Restoration Hardware Baby and Child. The bumper was a bit of a splurge (compared to some) but honestly it was the only one I could find that I really loved. It was $139, and the mobile (also RHBC) was $49. I got them both 20% off during a friends and family sale! YAY! The crib skirt is being made from a RHBC sheet set that ran us $129. A little pricey, but worth every penny when you see how cute it all looks together! Plus we had a lot of the fabric left, so I was able to do other things with it like cover a lamp shade and little chairs! I got the crib sheets from Target for about $15 each. They are just solid navy and I couldn't bring myself to spend $44 for ONE crib sheet from RHBC!
Accessories: I am doing this all from memory, but I will do my best to run down the list... this will give you some hints as to what is in the room, too! ;)
- LAMP: $7 at Habitat for Humanity Restore, plus a $12 cover it yourself shade at hoblob, plus metallic spray paint.
- FLY letters: 3 at $2.50/ea from hoblob, plus metallic spray paint (???)
- GLOBE: $10ish at Habitat for Humanity Restore
- "A": $12 at hoblob, plus modge podge to apply map (which was free)
- KEEP CALM PRINT: $16 on etsy, plus $26 for frame at hoblob (on sale, marked down from $50.00)
- AIRPLANE PANELS: I honestly don't remember too well, but I want to say I spent about $30 on the entire project. The real cost was time, labor, and mess!!!
- METAL PLANES: various prices, from $6.00-$20.00 at hoblob, although I lucked out and bought mine from a friend of a friend who was selling the same ones I had been eyeing at the store! I got three for the price of one!!!! SCORE!
Hopefully soon, I will be sharing the final pictures!!!
Posted by The Brewers at 1:17 PM
Friday, November 2, 2012
I have had several people ask me how Archer's nursery is coming... well, let me tell you- it's not! I had grand ideas of having all of the boards on the walls so that I could use this past week to caulk and paint and that we would be putting the finishing touches on it this weekend! HAHA! I crack myself up!!!
We started working on it last weekend. It was a bit ill-fated from the start, I am afraid. I started using furring strips, but after sanding, and sanding, and- yes- more sanding, I realized they were just too rough. So we went back and got MDF boards cut into strips. I painted those and we got to work. But sadly, Ava isn't a fan of the nail gun or air compressor. So while I have most of the top rail boards cut, only two are on the wall as of this moment. Cole is back on hitch at work, and it is definitely a two person project. My mom has promised to come over tomorrow (Saturday) and help me make some progress. So I am hoping that works out, somehow. Still not sure what we are going to do with Ava? Oh, and I forgot to mention that Ava came down with the longest, worst stomach bug (not the vomiting kind- the other kind...) that same weekend. And is just now getting over it! YUCK!
The good news is that, after we get the board and batten complete, it is time to put the room together!!! SOOO excited! Especially since we have about 4 weeks until I am "full term" (37 weeks pregnant- which is when Ava was born!). I still think Archer is a little more comfy and will stay put longer than Ava did. Hope so! Looking at the calendar for December, we don't have time for him to come before the induction date! HAHA! Oh well! He will come when he is ready and we will welcome him no matter when that is! I am secretly hoping he comes on 12/12/12! What a cool birthday that would be! And the last time anyone this century has such a birthday!!!
Posted by The Brewers at 8:50 AM
Monday, October 22, 2012
This is a random post, so sorry!!!
I have really been worried a lot lately. Worried about Archer's health (no reason, just being mom), worried about getting everything done that needs to get done, worried about Ava and how she will adjust to life with a baby brother, worried about how WE will adjust to having a newborn... I could go on and on. And I know I shouldn't worry. The Lord will take care of it all and I need to trust him. I was texting with Cole the other day while he was at work (don't worry, he wasn't flying!) and telling him how crazy it is that we are going to have a newborn in 59 days or less and how stressed it makes me feel... and he texted back Luke 12:25... "And which of you by being anxious can add a single hour to his span of life?" I needed that. Life is so precious and short to worry with things that I have no control over. Let go and let God. Amen!
We visited my mom at work today. They have a long hallway full of offices. She spent about 10 minutes walking up and down the hallway visiting with everyone, climbing in laps, stealing things off of desks... they just love her! And who can blame them! I finally grabbed my phone thinking as soon as I turned the camera on, she would want to sit and crawl. NOPE! She showed off BIG TIME! And she didn't even have on her good walking shoes! So incredibly proud of my sweet girl!!!
Here is the video I took...couldn't you just eat her up!?!?!
I am going to get in trouble by her PT for the Toms. But they are so cute and easy! For those that are wondering, her "good" walking shoes are her Nike tennis shoes. Her PT says that Nike has the best support for early walkers, so if you have a toddler just starting to walk, I highly suggest investing in a pair of Nikes for them!!! Her's also have inserts, but she does well without the inserts too. They just help keep her from turning her feet out so much.
We have a big weekend ahead! I have a hair appointment, baby shower, and we are going to be doing the board and batten in Archer's room. I have taken measurements and am working on figuring up how much wood we need. This is not my strong suit. At all. Thankfully Cole is MUCH better at this stuff than me, so I will have him check everything when he gets home. I am excited about doing the work. Cole has never used a chop saw before. I have, and feel very comfortable with that part. The part that worries me is the angles. I have never been good at figuring out angles, so it should be interesting! Those that have done board and batten treatments (and this is the wondering...), what was the hardest part to you???
Posted by The Brewers at 3:31 PM
Wednesday, October 17, 2012
One year ago today, I got the call that would forever change our lives. I was talking to Cole about how much I was dreading today, and he reminded me that not every anniversary had to be remembered. But the truth is that, while I never wanted that phone call, having a diagnosis has been a blessing in so many ways. In fact, the more I thought about it, the more I realized that it wasn't October 17th I was dreading...it was October 16th.
The 16th. The day before. Because one year ago yesterday I was going about our lives, blissfully unaware of how the rug was about to be ripped from under my feet and the breath taken from me. Still living with the idea that she would catch up and grow out of it eventually. Still able to realistically dream of her typical future- one filled with college, career, marriage, family. Not knowing that in 24 hours or so, those dreams would forever be shattered and I would have to start picking up the pieces and putting together new goals and dreams for my baby girl.
Before Ava was born, I had put I Samuel 1:27 on her nursery wall. "For this child I prayed, and the LORD has granted me the desires of my heart." I have been thinking about how true those words really are. Because I prayed so hard for a baby girl. A girl with blonde hair and blue eyes like mommy. An easygoing and happy nature like daddy. A girl we would name Ava Faye- Ava because it means "to fly" and Faye after myself, my mom, and many great aunts. A girl that would touch and bless others and be a light in our lives. And that is exactly what we got! But what I didn't pray for, what I didn't desire in my heart, was to have to watch my child struggle. To watch my child be profoundly disabled and have to work ten times as hard to accomplish things that just come naturally for her peers. I didn't pray for that. I didn't want that. So does that mean that God made a mistake or that He didn't really answer my prayers?
No. Not at all. I believe the total opposite, actually. God knew our hearts. He knew how much we would love and cherish any child we were blessed with, and He didn't choose Ava for us- He chose us for her! I had no idea what the true desire of my heart was until he gave me Ava. And my desire is to love her and be her mother!
I wrote about getting the call that day, and my memories from that afternoon, in this post. I have talked before about some of the blessings that a diagnosis have brought, but not any specifically. It seems like, with every challenge we have faced since October 17th, 2011, we have also been equally as blessed. Like God is reminding us that, although we will face obstacles on this journey, He is still with us and will lead us through to brighter days.
So I wanted to, instead of focus on the heartache and pain that this day brought us last year, to focus on a few of the blessings that have been given to our family in the year since....
* This past year, both Cole and I have grown so much. Our marriage, our faith. In so many ways. We are both closer to the Lord and closer to each other. We had a strong marriage before, but having to face the diagnosis of AS has really brought us closer together and made us lean on each other for strength and courage. Cole has always been an amazing father, but watching him since Ava was diagnosed- he has really stepped up and become her protector and is just astounding with her. He is really my rock on days that I think I can't keep going, and knowing that he has my back is more comfort to me than he understands. An example of this- we had a GI appointment for Ava yesterday. Just a regular check-up, but I was really worried that I would have to fight her GI doctor to keep her on Nexium for reflux, and I told Cole as much. Now, normally at these appointments, I do the talking. But Cole was the first to speak up when the issue was brought up, and say that she needed to stay on the medicine, and explained why. I think the doctor didn't know how to take both of us insisting on it, so he agreed and there wasn't any resistance from him! I am so blessed with a husband who will do anything to protect his family, and who is my partner on this journey. He is an incredible man, and the AS has really brought us closer together than ever before.
* Cole's job and that journey. Since we were married, Cole has worked away from home. Either deployed or working in the gulf as an off shore pilot. He wanted to be closer to home, but helicopter jobs in Arkansas are few and far between, and usually go to someone with more experience than he had in the beginning. So we decided to buckle down, endure the schedule, and when jobs did come open (mostly at the guard) he would apply for them. For about three years, he kept getting passed over for positions in Arkansas, for one reason or another. It was frustrating and discouraging for us both- but we just kept praying that the right position would come his way when the time was right. In the meantime, he continued to further his career in the gulf, and eventually began flying S-92s. In the process of his S-92 position, he also obtained his Airline Transport Pilot license, or ATP. The ATP is a step up, or add-on, to a commercial license, and is something that he never would have gotten had he worked for the Army, since the Army doesn't require ATPs. Well, he was continuing to build his hours and experience in the gulf one year ago when we got the phone call about Ava. Not 30 minutes after hanging up from telling him what the doctor said, he was calling me back telling me that he was going to start putting in for Arkansas jobs again- something we had both agreed he wouldn't do for a while until he had more hours and had fulfilled his obligation to his current employer.
So as soon as he got home, he started preparing his application for a job as a maintenance test pilot for his unit. At the same time, he got a call from a friend telling him that Arkansas Children's Hospital (aka, our dream job) had an opening. Now we got the AS call on a Monday. Cole came home from work late that Thursday night. Early the next week he put in his application at ACH. He was called late that week and an interview set up for the following Tuesday. We spent that weekend praying, me drilling him on the history of ACH and Angel One (I even made him a little Angel One study guide! HA!) and preparing him for interviewing at ACH. That Tuesday, I sent him off to interview, and prayed the entire time he was gone. He came home feeling good about the day, and excited that he got to fly one of their 76s with the chief pilot. He already had a lot of experience in 76s, and felt really good about his performance. Early the next morning, he left to head back down to Louisiana for work. I got a call about 11 from him- he was on the road, but he was calling to tell me that he had just hung up with the Flight Director from ACH, who had offered him the position!!! I literally screamed. Ava thought I had lost my mind!!! Not three full weeks after getting a heartbreaking phone call, I was getting an AMAZING phone call! But he told me not to get too excited. He reminded me that he was still contractually obligated to his current company, PHI, and that they might not let him out of his contract, or they might require him to repay the money they spent on him to send him to the S92 transition and ATP course.
That night, I sat down on the phone with him, and wrote out his resignation letter, and the next day he talked quietly to some of the management about our situation and the offer on the table. In the letter, I simply explained Ava's diagnosis, and if it wasn't for that, he would not be seeking employment closer to home. But that the strains and demands of a special needs child are such that being closer to home must be a priority. I think he was surprised when his bosses at PHI were completely supportive and understanding, and didn't give him any problems at all. They had spent a lot of money on his training, and I think he was expecting at least some resistance. I wasn't. I knew that they would be great about it. Because I knew that it was God opening these doors for Cole to be able to be home more often. And I knew that God wouldn't provide him with this amazing opportunity without providing a way for him to take it.
* In dealing with Ava's diagnosis, I have had to face the fact that there were some people in our lives that didn't belong there. Some friends. Some family. People that would tear me down and put my child down at every opportunity. They would constantly berate me, try to compare Ava and our family with their own child and family, were more worried about things like being my facebook friend than they were about the fact that I was dealing with what is likely the most difficult thing I would ever face in my life. And while my decision to cut these people from my life has caused some discomfort and conflict, it has been worth it to not have to deal with the anger and heartache that their presence in my life caused.
There are so many small blessings- new friends, amazing doctors, closer family- that AS has brought to our lives. But I guess my point is that, it is a blessing. As difficult as that is to understand, and as difficult as it is to accept, this is the path that God has chosen for our family and knowing that, I must always remind myself that the Lord granted me the desire of my heart. And He will teach me just how remarkable and amazing that desire is!!! The greatest things in life do not come easily, nor do they come without a price. The price for being Ava's mother is a lot of heartache, sleepless nights, and worry. But the gift is the most precious piece of Heaven- a true and pure and wonderful person made in His image- someone that will constantly remind me of how remarkable the Lord is. And that is priceless!
Posted by The Brewers at 7:10 AM
Monday, October 15, 2012
I wanted to write down, for my own memory, some of the differences I have experienced with this pregnancy verses with Ava. I do not want anyone to think I am comparing Archer and Ava, saying one is better than the other. Not at all! But there are a lot of differences and I want to remember what it was like to have both of my precious babies inside of me! What a blessing it is to be able to have children, and there are so many women who struggle to experience this part of life. So I want to remember and cherish each thing! Both of my sweet babies look just alike in their 3D ultrasound pictures, and both yawn just alike in their ultrasounds. But that is about where the similarities end!
* Ava was CONSTANT movement! I don't think she ever slept...which now that she is almost three, she still hardly doesn't. So that makes sense! Archer, on the other hand, seems to have distinct periods of wake and sleep. He is pretty predictable in his movements as far as when and how rowdy!
* Ava sat very high, and Archer is super low!
* Ava enjoyed playing in my ribs. I could always picture her using them like monkey bars! Archer's preferred "toy" seems to be my bladder.
* Ava did have the hiccups some, but Archer gets them all the time!!! I am hoping that means he is busy practicing his sucking so he will breastfeed for me!!!
* Ava was seen chewing on her hand in her ultrasound, but we caught Archer actually sucking his thumb!
* Ava was constant movement during all of her ultrasounds- Archer had to be shaken to wake him up so he would move to a better position, and he went right back to sleep as soon as she stopped shaking him! I hope he is a snuggle bunny!!!
* When I was pregnant with Ava, you could push on my stomach, and she would kick or push back!!! With Archer, if he is kicking and you push there, he just stops and kicks somewhere else! I wonder if that is how his personality will be- laid back and go with the flow! Ava's habits were certainly a glimpse into what she would be like!
Back to Archer's room, I am struggling with his windows. This is a photo of the room prior to the nursery project starting, when it was still a guest room- I was indecisive on curtains then too!-
As you can see, there is a half moon transom, or "eyebrow" window above the center window. The previous owners had custom drapes made for all of the rooms (circa 1997, though) and this is what their person did:
I am trying to decide what I want to do about Archer's curtains. Really, just where to hang them. I really don't want to hang them all the way at the ceiling. I think I am going to use red ones, and I think that would be too much. In fact, that is really about the only thing I disliked about my favorite inspiration room- I didn't like the curtains all the way up. But I understood why she wanted to do it in that room...
They just feel too, I don't know, MASSIVE to me. So I have to decide- hang them above ALL of the windows so that they cover the transom when closed? Or hang them at the height the previous people had their "gone with the wind" drapes and maybe do a shade or shutter in the transom? Hmmm...
Posted by The Brewers at 12:14 PM
Saturday, October 13, 2012
So the plan is to do a board and batten in Archer's room. The navy is on the walls, and while my photography skills (or lack thereof) prevents me from really getting a good picture of how AWESOME it looks, you will just have to trust me that, well, it looks AWESOME!
But I am stuck on what style board & batten I want to do on the bottom. I have narrowed it down to two different styles...
The only big difference in 1 and 2 is the second horizontal rail. I like the looks of 1 better but part of me (a big part) says I should keep it simple- especially since Cole and I are planning on this being a DIY (sans my dad) project. So I don't know...
Posted by The Brewers at 8:23 PM
Friday, October 12, 2012
Well, we have all but finished Ava's big girl room! Her bed is still being built- my dad had to bend the wood to make the front arch and ran into some timely and frustrating issues with that, but I saw it today, and- can I just say- my dad is AH-MAZING!!!! And Ava's bed is going to be spectacular!!! I was talking to my mom on the phone about it and just started bawling! I don't know if my sweet daddy will ever understand how much it means to me that he is putting so much into Ava's bed. Such a simple thing- a bed- but when you have to think of your baby girl sleeping in something that looks more like it is for a zoo animal than a little girl, just so that she will be safe, it breaks your heart. Of course, if we had sacrifice the aesthetics for the safety of her, we would in a heartbeat. But I am so thankful that my dad is able to make something for her that is both safe and beautiful!!!! I have a few pictures of it right now, but I honestly want to wait until it is finished! It is that good!
So while we are waiting for her bed to be built, we went ahead and moved the crib back into her room so that we could work on the nursery. Our plan isn't as simple as just slapping some paint on the wall in there, so we knew we would need about a month to get the actual walls done, because Cole's schedule and Ava's therapy schedule are all over the board these days! My mother-in-law has a great guy that they use, someone she works with who paints on the side, and he is back in Archer's room as I type getting the walls all nice and navy blue!!! We plan on working on the board and batten in about three weeks. If I can wait that long! HA! I might have to go ahead and paint the bottom white part in those three weeks. I just cannot *wait* for this room I have been planning to come together!
His bedding came yesterday! I had been waiting to order it hoping that Restoration Hardware would have a friend and family sale, and a week or so ago, they did! So we got his bumper and mobile for 20% off!!! I didn't order a quilt. Still torn on that decision. But we never, ever used Ava's, and I just felt like it would be a waste. So I decided that money could better be used elsewhere! See, I am thrifty. ;)
I have been busy busy working on things for his nursery while we wait for the actual room to be finished. My dining room looks more like a Hobby Lobby warehouse! I made the photo collage below on picmonkey.com (aka my new favorite website!). I love that it kinda gives you a feel of his room!
I am so excited for his room...plus it has been keeping me very busy, for which I am thankful. We are rapidly approaching (next week) the anniversary of Ava's diagnosis. I don't know how I will feel on that day. I hope that I can look back on the past year and be satisfied with myself. I know I can look back and be proud of her. I will be writing a post that day for sure- probably a sappy one- so get ready. The last year has been a hard one in many ways, and a blessed one in many more. I think back to where I was a year ago. Blissfully unaware of how my life was about to change in just a matter of days. Now, a year later, I am working on a new baby's room and watching his big sister thrive and prove the "experts" wrong in so many ways. It was a hard year for me. But the Lord is still good and still faithful. And for that, I am most thankful!
Posted by The Brewers at 3:23 PM
Saturday, September 29, 2012
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!)
|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! |
|Wreath? (obviously a less pink version!) |
Posted by The Brewers at 3:50 PM
Friday, September 21, 2012
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???
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!|
Posted by The Brewers at 5:03 PM
Saturday, September 15, 2012
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!
Posted by The Brewers at 3:59 PM
Wednesday, September 5, 2012
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 Houzz.com. 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.
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 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.
Posted by The Brewers at 5:05 PM
Tuesday, August 28, 2012
So I am still daydreaming of a mudroom area in our garage. I keep seeing them all over the blogosphere. Peeps like me with homes built before the mudroom craze are adding them in their garages. And seeing how Kim over at the Money Pit did her's makes me want one even more! We really have the ideal place for it, and I think it would be SOOOOO wonderfully useful. But here is my question..
WOULD WE GET SPIDERS IN OUR SHOES???
Posted by The Brewers at 4:55 PM
Saturday, August 25, 2012
Kelly is hosting another Show Us Where You Live Friday over at her blog, and this week it is all about the LAUNDRY ROOM! Now, I will say, our laundry room is nothing to write home about...YET. I do have big plans for this room, but because I am having to do two kids rooms at once, the laundry room (and the board and batten I want for the dining room) are on the back burner for a bit. And that is okay. My babies come first, and so do their rooms! But I will get to it. Eventually!
I first wanted to share our laundry room before & after's from our old house. You see, friends, I am no stranger to laundry room makeovers!!! HAHA!
Here is our OLD laundry room, BEFORE the makeover:
|The space was functional. But not pretty at all!!!|
|The space was large, and doubled as our pantry area/kitchen storage. Not ideal, but we made it work.|
|I re purposed the shelf into a folding counter of sorts, so we still had a bar to hang clothes as well.|
|Baskets above the shelves were the most economical solution to clean up our storage area and make it more organized and pretty!|
|The biggest addition was the pantry cabinet that we added. I later painted the top cabinet raised panel with chalkboard paint to make a fun kroger list/menu area! |
Now here are the BEFORE pictures from our NEW house!!!
See. Nothin' special. Lots of potential, but not pretty at all! That will change! Eventually! And when it does, I will do a post about it!!! Stay tuned!!!
Posted by The Brewers at 7:48 AM