grand ole grandparents

Aside from the fabulous heat (ahem), my favorite part of Kansas City is the grandparent factor. John and I throw around that term pretty frequently around our house. Because grandparents are a huge part of what makes our baby world turn. There are a lot of other places in the world that John and I would like to live. Moving to New Orleans didn't make the itch go away, it just scratched it awake a little more. And when we came back to Kansas City initially, we didn't plan on staying. We planned on slapping some paint up on the walls and cabinets and selling the condo as quickly as possible. But God clearly had other plans. And now we think we're here for good. Or for as long as our good God wants us here. And it's in no small part due to what we're able to give Annie through raising her here. Grandparents. And, cherry on top, great-grandparents. 

Next week my mom will get to celebrate her father's 97th birthday. Crazytown. That's a lot of years.

But on Saturday my mother-in-law Mary recognized the 40 years that have passed since cancer took her mom. That's even more years than 97 in a lot of ways. That's no mom in the front pew at your wedding day. And no mom beside the delivery bed on their grandchild's day of birth. That's a lot of mother's day cards that were never bought. A lot of lunches never shared. A lot of conversations never spoken. 

John told me the other day that in college, in the midst of your typical teenage independence and stay-far-from-home mentality, he remembers thinking, man, I'm glad my mom is alive.

 

Amen, to that. I'm beyond glad that all our parents are alive. And a part of Annie's life. 

I can't wait until the day in a few years where I'll be running late and get to call one of Annie's grandparents to pick her up from school. 

Because, clearly, she prefers them to us...

I realize that not everyone has fairy tale stories to tell about their relationship to their parents. Ours isn't one of a fairy tale either. But we are very lucky. We do have parents that are alive. We do have parents that support us, encourage us, help us. We do have parents that we genuinely enjoy being around. And so we're very excited to raise Annie among this community of grandparents. It's a gift that some people have lost to cancer or tragedy or distance, but that we are thrilled to get to offer to our children.

 

what annie does when I'm not looking

let there be light

In my opinion, it's a sin to visit a city and leave without going to IKEA. For those of us not blessed with IKEA in our hometown, ahem, it's of paramount importance to choose vacation destinations using the IKEA Store Locater map. Do I sound like a believer? Well, I am. I realize that the store is it's own worst enemy. With everything on display to touch and feel and take a nap on, wear and tear is evident. You see the broken edges in the fake wood furniture and the jammed drawer slides and the cracked picture frames. But whateves. It's affordable. It's vast. It's current. And I'm a fan. 


So while in Denver, I hit it up with my dad, Ryan and Danielle with her twin boys. The boys spent the trip zooming around the showroom in shopping baskets. It was scary awesome. Near the end - that store is huge - both boys were scrunched up, each sitting in their own shopping cart, chauffeured by my dad and Ryan. 


I tried to contain myself, and I rather succeeded. I walked in with an agenda and walked out with exactly what I needed. A knife block for INSIDE the drawer. Yes, that's right. Annie gets her kicks pulling our knife block whenever she's in reach. So in an effort to curb her sharp object enthusiasm, we've opted for this:

Here's to my daughter keeping all ten fingers and toes safely attached to her hands and feet for at least another ten years.


I also snagged a few more Ribba frames. I've never met a frame I like better. Scratch that. I've never met a frame under $100 that I like as well.  Here are a few shots of Ribba frames hanging in our old houses.

New Orleans nursery

Branson Townhouse

Of these, I bought three more....

And most excitedly, I finally found a light for the kitchen that I could be content with. Really, it was a price that I was content with. Here's a little light history for ya. When I bought the condo this random single pendant light hung off center from the soffit. (Read more about the kitchen renovation here)

That light went pretty quick and because it was off center and hung over the floor - no table, I never replaced it. Then when the piece was being built I hung this light from the Home Depot:

But it cast a terrible shadow and didn't give any light to the top shelf. So it was a goner within the day.

Finally, against my will I hung a cheap track light that originally  hung in the other end of the apartment when I first bought it. Surprisingly, though we hated the fixture, we loved the amount of light it gave to not only the shelves, but the countertop. Still, it wasn't enough to make me keep it, and we sold it a few weeks later on Craigslist.

Ever since, I've had my eyes out for a great light. I wanted something with character. Well character comes at a high cost. And with the soffit there making the ceiling hang so long, my options were narrow. It couldn't hang more than 4 or 5 inches without making the top shelf unusable. I had nearly given up, content to let wires remain exposed forever...

..when I saw this track light at IKEA with a very attractive price tag. I'm not a lover of track lighting. But I am a lover of light. And this was going to bring a lot of it. And so in the heat of the moment, when everyone was pressuring me to hurry up, I bit the bullet and bought it. 

I need to take a better picture, but I've misplaced my camera cord, so you're getting an iPhone rendition. The fixture is not a far cry from the old track light, I admit, but just better enough to make me deal with it. I DO LOVE THE LIGHT it sheds on our new kitchen addition. Each bulb moves forwards and backwards as well as rotates. So my sweet Annie has a spotlight now. 


There you have it. Thanks to IKEA we're one step closer to the end. And, no, for those of you wondering. I still haven't finished painting the kitchen. It's embarrassing and I have no excuse. Tell me how pathetic that is and maybe I'll get motivated. And would you believe this? I actually painted my friend's fireplace last week and STILL haven't gone back for the second coat. Lord, help me. Why do I never finish strong? 

XXYY Sneak Peak

John took a plane home. Ryan's in a car with my parents on a straight shot back to Kansas City as we speak. And I'm about to take a nap. It was a LONG weekend at the XXYY symposium. Annie and I have stuck here in Denver another day to bum around. And that's just what I'm doing. Bumming. Because this weekend really took it out of me. It was exhausting. It was frustrating. It was encouraging and discouraging in the same breath. Heart breaking, angering, saddening and hopeful. I want to write about it - what I learned, how I felt, what it meant to me and our family. But it's almost just too much today. I feel like I need a good minute to process. 

In the meantime here are the only few pictures I took on my iPhone. More to come eventually with my camera. 

Here's Ryan with my husband John. 

About five minutes before I snapped this picture, John told me he was having a rough time. Everyone in our family seems to have had their breakdown with Ryan's diagnosis and what it means for his and our lives. It's an intensely devastating moment of hopelessness and helplessness. A moment where you want to give up. Finally and forever. I'm sure my parents had theirs years ago. I had mine a few months ago. And John was on the verge of his that afternoon. We'd escaped the symposium for lunch in an attempt to redirect a meltdown Ryan had had that morning. He and Ryan were in a hat shop in Estes Park laughing, joking around with fedoras. And when Ryan stepped away, John looked at me and seemingly out of the blue said he felt beyond frustrated; he was ready to fold his hand. I asked if he wanted to go back to Denver early and he shook his head. 

And then the Holy Spirit swept in as it has a way of doing in those low lows when you really need it. And within minutes, John had made it to the other side. He still had love to give to Ryan when he had just seconds ago believed he was empty. 

Anyone can slap on a smile for a picture. That's not what this was. This was a renewal.

"Then they cried to the Lord in their trouble, and he saved them from their distress. He brought them out of darkness and the deepest gloom..." Psalm 107:13


It's in our deepest brokenness that we have the opportunity to most rely on God. And it's in our deepest brokenness that He has the opportunity to most redeem us, renew us and revive us. 


"The Lord is gracious and righteous; 
our God is full of compassion.
When I was in great need, he saved me.
Be at rest once more, O my soul,
for the Lord has been good to you." Psalm 116:6-7


So that picture of John and Ryan may look simple - a quick photograph of two guys smiling. But it's more than a little complex. It's an image of God's grace.


In the same way, this next picture is more profound than anyone reading will understand. And in a few days maybe I'll try to explain more about why. But for now just know that Ryan is standing next to two 8 year old twins plagued also with XXYY, being raised by a mother who is the definition of strength, patience and courage.

These boys have a long road ahead of them. And I can already see the bumps. They're tire flattening bumps. But their mom is a saint. I'm going to be praying for their family like I really have never prayed for any other. 

"The Lord's right has hand has done mighty things!" (Ps. 118:16) Let me dwell on that tonight.

the powerless against the mighty

I watched 60 Minutes on CBS a few days ago. The story centered around the breakthrough use of the iPad for people with autism - the opportunity it gives them to use their fingers to swipe and point. And that it speaks aloud the pictures that the child touches. So these kids (and adults) who have never been able to talk or communicate can now order a soda at a diner and tell their moms if they're happy or sad. Tired or hungry. It's a small thing. But it's a door whose lock has been turned and that is slowly beginning to open. And to know as parents that you have Apple on your side constantly innovating a device that's profoundly and positively impacting your autistic child's life? Well, it's got to feel good to have that sort hope and support. 

I'm selfish. And I'm wondering when that door is going to open for my brother. I imagine that just about anyone would watch a segment like this one on autism and iPads and be moved, feel compassion and have joy for the parents and children who are being so greatly helped by this technology. But for anyone that's touched on a daily basis by a child with special needs, it strikes a tender chord. I think you are more deeply joyful for those people seeing hope, because you long for it so much yourself.

I have to be honest. I constantly look at other types of 'special needs' and conclude that they are in every way better and easier than those of my brothers. I have a whole slew of reasons as to why I believe it. Either there are more resources for that diagnosis. Ryan's symposium for XXYY has 15 attendees this year - from as far as Germany, only 15 boys. Or there are more people interested and passionate about research. There is only 1, read it: 1, doctor in the United States (and world?) that specializes in XXYY. And oh yeah, she's on maternity leave. Or maybe it's that at least the child doesn't know that they have special needs and so they get to live in blissful ignorance. Ryan knows he doesn't have friends. Or maybe they know full well but have the capability and desire to be independent. You need to stand over Ryan to make sure he brushes his teeth. They know their limitations. But they work with them. I don't even know his limitations sometimes. They get to live in group homes. His genetic disorder is so rare that group homes don't know how to handle him. Other types of special needs adults hold down menial jobs. You don't even want to know what happened the one time he got a job at the YMCA. It involved a trainer's cellphone, a toilet and a surveillance camera. You fill in the blanks. Needless to say he was quickly unemployed.

It's not fair to do this though. It's not fair to compare the struggles and the plights of various special needs families. They're all broken. They all need a miracle. The problems that afflict Ryan's life just look different. But, I have to be careful not to scream sometimes. Not to scream so loud I wake the baby. But that's how I feel. Where's Ryan's iPad? Forget about opening the door that would lead to a better life for him. Let's just please find the door. But I think I'm wrong to believe that autistic families are the only lucky ones because they now have have the iPad and its promising future on their side. Because we all have God on our side.


Lord, there is no one like you to help the powerless against the mighty. Help us, O Lord our God, for we rely on you and in your name we have come against this vast army. O Lord, you are our God; do not let man prevail against You. 2 Chronicles 14:11

Ryan is the powerless. I am the powerless. My family is the powerless. Mighty is what afflicts Ryan. Mighty is the world. Mighty is hopelessness. Mighty is depression and desperation. There is no one like God to help the powerless against the mighty. Let me believe that, God. And help my unbelief. I see no future for Ryan. I see the day by day. But I want to see the future. I keep looking for his iPad. His fancy pill. His perfect doctor. His new best friend. What is in the works for Ryan?


No eye has seen, 
no ear has heard,
no mind has conceived
what God has prepared for those who love him. 1 Cor. 2:9 AND Isaiah 64:4


It says that twice in the Bible. Thank goodness that the only options aren't those that I can conceive of! That's the best news I've heard all weekend. 

So I wish to focus on that tonight. And every night. That no eye has seen the books that God has written that only Ryan with his wandering eye will ever read. And no ear has heard the language that God has created that will be a beautiful harmony to his ears. No mind has conceived of the community that he will one day find in Christ. God is the host of that party and He has prepared the goods. And they are good. 

thirteen months

Here we go again. I'm back on the horse. But I'm barely holding on. I want so badly to keep up the weekly pictures to some extent. Once a month? Seasonally? Every half birthday? But my subject is becoming quite ornery and quite mobile. Gone are the days where she laid still. Here are the days where weekly pictures require baths immediately after and bleach for her diaper because she so maliciously rolls in the oil pastels. And gone are the days where I seem to have time and SPACE in this apartment to doodle and brainstorm ideas for themes. Nothing is flowing these days.

This thirteen month session offered a whole gamut of behind-the-scenes problems. From my measuring stick getting blue oil on it and rubbing off on the wrong parts of the paper to it being nearly impossible to write the words after the rest was drawn without smearing AND dirtying AND ruining the background. And the background wasn't great to begin with so it needed all the help it could get in at least looking neat and not sloppy. 

But I started drawing this late at night and John was already going to bed, making me jealous for sleep. So I hastily wrote the words - bad font, bad consistency, bad placement. What are you going to do? Start over? I've done that before and I'm not sure that the second was better than the first.

Then add to the mix that Annie had NO desire to cooperate on her one year, one month, one week, one day, and one hour birthday. 

And of course there is the trick of getting the baby entertainer (John) OUT of the frame which seems hard for us to accomplish. You've got to be stealth to move from tickle to out of sight while Annie is still laughing. Usually the camera clicks at the exact moment that the smile dissolves to a frown.

To make this photo shoot all the more aggravating I realized afterwards that my camera was on manual focus the whole time! I guess I'm lucky that the pictures came out even remotely clear!

So when all was said and done, this was the best shot:

Not my proudest artistic moment. Not a moment of Annie's greatest joy. But a moment in her childhood nonetheless. An image to mark this day in her life. And a great day it is. A great day any day is when you get to spend it with your kiddo. Here's to many more years and months and weeks and days and hours. 

nursery update

A lot has been accomplished since we first began Annie's room. Of course, there was a minor delay due to the unexpected run to the E.R. But focus soon shifted back to her nursery, and progress was made. Brick has been painted. So has the ceiling, the trim around the windows, doors, and baseboard. I couldn't be happier with it. I LOVE WHITE PAINT. And the rug we snagged in New Orleans for a total bargain in front of our favorite mexican restaurant on Magazine Street has been now been laid on the floor. We initially had only vacuumed it out before we put it down when we bought it last year. Now that Annie is crawling though and now that she puts EVERYTHING IN HER MOUTH, we bit the bullet and paid to have it professionally cleaned. No joke. You could buy a brand new rug from Target with the amount of money you spend getting a rug cleaned! But it's worth it to know that the decades of dust and dirt are gone.

Now I'm on to hanging pictures - like the one below done by my very talented Aunt Jeanie. (check out more of her stuff here)

Still ahead is figuring out a solution for this terrible mess of a closet. It used to have cheap plastic mirrored doors. They looked awful and only allowed you to open one side of the closet at a time. The space is small as it is and those doors drove me crazy! I ripped them out a few years ago and have never since decided on how to enclose it. 

But it's getting out of control! I must do something soon! Here's what I am thinking - a cornice with drapes beneath so we have the option of hiding the closet, but without all the work and money of installing doors. Plus, with doors we'd need clearance space to open them - SPACE WE DON'T HAVE! 

Ansley Park - Liz Williams Interiors

So, yes, our work is still very much cut out for us. But a few pictures are getting hung. So many decisions still left to make. I love to decorate, but this is the third nursery we've had for Annie - all using the same things. You want to try to make it unique each time but you find yourself stuck in a rut of what you've done before. Let's hope I can be bold and make it different. (check out pictures of the nursery in New Orleans and Branson here and here)

Maybe by Christmas I'll have an official AFTER shot for you. But let's not hold your breath. The whole cornice board/drape concept is going to take some major motivation and determination to come into reality. Luckily, I have fabric that I bought for Annie's nursery in New Orleans from Thom Felicia's line that I STILL haven't used. It was a splurge and I'm afraid to mess it up. These are pictures I took when I first brought the fabric home in New Orleans - 18 months ago. (side note: I was cleaning out a forgotten storage bin at my parents' house this weekend and found several yards of another splurge fabric I bought TEN YEARS AGO that I have yet to use! I have a serious problem.) 

I did use the cream linen fabric with the birds on it for pendants in her first two nurseries. I certainly didn't start that whole trend, but over the last year it has become so popular in nurseries, that I can't decide if I want to hang it again. It seems too overdone and unoriginal now. 

Anyway, that's a quick round up of where we stand with the Kansas City nursery. Finished: paint, rug, room layout. To do: closet cornice board with drapes and finish hanging pictures. 

there's food on my face, too

Sometimes I look at Annie with food all over her face and crumbs in her hair with stains on her clothes and dirt on her feet and I wonder what it will be like when she grows up. Seeing her on so many countless occasions looking so silly, so childlike, so naive and I wonder will I ever be able to see her as an adult without remembering the blackberry stains on her chin? And I think it must be this way with God.

We pound our fists in the air telling Him this is the way things ought to be or this is what I need or don't you know, God, that I'm all grown up now, I get it now and I have all the answers. We stand there with our faces clean, makeup on, hair done. We have expensive clothes on our backs to make us look sophisticated. We're proud of our waistline or our marathon time or the number on our paycheck. We look up to the sky to make our demands while we hold an iPhone in our hand - proof of our knowledge and of our advancements. And don't you know that no matter how much we've forgotten, He still sees the blackberry stains on our chins and mud on our ankles. The umbilical cord still drying on our belly buttons and the frizz in our hair. 


Romans 8:26 says: the Spirit helps us in our weakness. we do not know what we ought to pray for, but the Spirit himself intercedes for us with GROANS that words cannot express.

Often in dealing with my special needs brother, our family finds ourselves in moments of absolute confusion and hopelessness. It's not always a matter of knowing what's right and what's wrong and then having the strength to do the right. Sometimes, you just don't know which side is up. And often, too often, I process the situation and I dig deep into my brain for a solution. Steps to take. The right people to call. The right programs to sign my brother up for. The right method of discipline. Or discipline at all? Maybe just total grace. And usually I come up with a game plan and if God is lucky I set aside a few minutes to explain it to Him so that he can know how it's going to work and the role I'd like Him to play in it. Sounds silly, right? But isn't that how you operate, too? 

And I have to think that with my proposal all put together and my arguments stated, God must look down on me, and say, Child, you do not know what to pray for. And He is right. Because, I don't. But thankfully He tells me that He has put His Spirit inside of me to GROAN what WORDS CANNOT EXPRESS. My prayers are so often spoken from lips stained with berries and crumbs in my hair, but there is a groaning going on before my God on my behalf. And that speaks to me because I can remember times where I've been absolutely shattered by this world and by sin and confusion and I've cried so hard I've groaned. And to think that the Spirit of God is GROANING what words cannot say is like salve to my soul. And it says that the groaning happens while we wait for what we do not yet have - the redemption of our bodies, and our adoption as sons. SONS AND DAUGHTERS TO OUR ABBA, FATHER.

So anyway, what I'm really trying to say is that I'm glad that MY prayers aren't the only ones being uttered on behalf of me and my family. Because so often I either stand arrogantly before God with naive requests or fall sheepishly before Him not knowing at all where to start or what to pray for. I'm glad that Jesus Himself intercedes for us (Romans 8:34). Because who am I kidding? I may fool myself and look into the mirror sometimes and think I have it together. But I don't. Not even a little bit. I must look like such a foolish mess before Him. Thank goodness He came to clean it up.  

christmas in july

Of course I've always known that every family is different, but marriage swings the doors wide open to see just how different. Take Christmas for example. My family does Christmas the normal way. Right? I mean don't we all assume that the way we have always experienced the holiday is THE way? (And after all the pictures from this post, I know everyone is confident in the normalcy of my family...)


For 24 years I've known Christmas Eve dinner at the Farm with cousins and aunts and uncles. Dozens of people. Too much food (because a Mueller girl has never and will never run out of food). Kids running amuck. Cousin Christopher knitting. Like always.

Stories told. And more food eaten. Then Christmas morning the out-of-towners wake up at the Farm to presents on the porch. We eat Joe Scovell's stollen. A recipe that he got from some nuns decades ago. A recipe that he wouldn't share with anyone until I bribed him last year and he gave it to me in a sealed envelope to protect with my life. But he's kind enough to make one for each family every Christmas. It's a to-die-for coffee cake-esque bread with swirls of cinnamon and nuts and icing on top. It's delish and I can't begin to explain it. Then we eat a sausage and egg casserole that the sisters make the night before. And right around lunch time we pile into the car and drive back to KC to see the other side of the family.

Annie looking like she had one too many cups of Egg Nog.

My father-in-law's family is different. It's smaller and packed with traditions. This year, after Christmas Eve dinner at the farm, John, Annie and I drove the three hours to make it to their house around midnight and wake up there for the big morning. If they're reading this, they'll probably rattle off ten things that I forgot or didn't notice about their traditions, so I apologize in advance! It's July, people! It's not exactly fresh in my mind. What I remember of it was sitting around the living room once they'd come home from playing the music at Midnight Mass. We listened to an old recording of a short story. Then off to bed. We woke up and lined the top of the stairs until John's parents rang a bell so we could go downstairs. (I think...maybe the bell is in my imagination). Music plays. The same album every year. All the presents are under the tree in the dining room, so someone gathers one per person and brings them to the living room. And on and on the present opening goes. And the present opening is a big deal. There are lots of packages. They would put your family to shame, and I don't even know your family. There are books and CDs and toys and clever little presents and gift cards galore. There is a lot of thought and heart put into each thing.  


Then between present opening and afternoon napping, there is eating. Lots of eating. 

And you leave overwhelmed by their generosity. And then in July, in the midst of this make-you-crazy heat wave you remember that you have a gift card to your favorite store that you were given on Christmas morning. And you get out of the heat and into the air conditioning to spend two hours wandering around Pryde's in Westport. And it's glorious. And you leave with a very nice loot. 

Somehow our salt grinder got wet in New Orleans and never worked again. So after three years of pinching salt with our fingers from a small bowl, I bought a new mill. And I love it.

And a kitchen towel in French that makes my heart flutter.

And another kitchen towel that makes me want to grow a garden full of food to cook in our slightly new kitchen.

Yes, Christmas is lovely in all families. But Christmas in July when you need a break from your teething toddler is very, very lovely.