I'm Scared

I need a chance to vent. Carter's eye appointment at Vandy Friday went very much like I expected, but it was devastating all the same. I've not been able to discuss it much with anyone though because our kids have been constantly with us and I don't want to risk completely losing my composure in front of them. I have a good cry scheduled for Tuesday afternoon so this post will have to tide me over until then....

He's losing his right eye. Not today, maybe not even this year, but he will lose use of that eye entirely. Everything that we do now, the patching, the surgeries, will only slow the progression. I was so hopeful after this last surgery that maybe we had found something to slow the rapid vision loss he had been experiencing. After this last visit, he has seen such a marked decline that he turns his head to avoid using that eye altogether. 

Many kids have a "lazy eye" that is treated with patching and eye muscle surgeries similar to the ones Carter has had. I want to emphasize that Carter doesn't just have muscle weakness. I can deal with muscle weakness. The way Carter's optic nerves developed is bizarre. Our nearest opthalmologist told me simply that Carter would lose his sight without much more of an explanation. We went to UK where they consulted with another children's hospital and ended up with differing opinions ranging from Coloboma to Glaucoma. 

We ended up at the Vanderbilt Eye Institute (which was convenient since he was already under the care of one of their geneticists as well as their autism clinic) under the care of an incredible surgeon. After several other visits, we were able to rule out Coloboma as being his problem. And though physically, the structure of his eyes indicates Glaucoma, we rule that out every 6 months with pressure tests. 

What we are left with...well...it sucks. He is still at a huge risk for Glaucoma as well as retinal detachments (the doctors at UK said his nerves were about 4 times the size they should be). His vision is horrible. His best corrected vision (how he sees with his glasses) is 20/80 and that is with an insanely strong prescription. When I mentioned how his right eye (the weakest) always seems to be half-closed, all I could get was a sympathetic shrug and a nod. Apparently that's normal for eyes that are essentially dying. 

I have always been a control freak. I am terrible at delegating, I am terrible at trusting others, and most of all, I am terrible about handing things over to God. Medically speaking, it is not possible for this to be fixed. I am not personally capable of fixing this. The only healing there is to be had is if God decides to intervene, so clearly I should be handing the situation over. I can't give it up though. I am so so scared and angry. I know we were not promised an easy life, and I know terrible things happen, but I cannot look at my child for one second and not think that he deserves better. 

He has so much on his plate already and he has already overcome so much. In the past few months, we've all but forgotten that "autism" word. He is excelling in school, he has gotten stronger, he's not hurt himself...now this is a huge slap in the face and a terrible reminder that he is different. I make a very conscious effort not to force him to conform to what society views as normal but this is different. This is his vision and I hate that my child could be deprived of seeing the world around him. Bob keeps telling me that maybe one day they will have a surgery or some type of treatment that will fix this. My response is there are too many people in the world spending money on stupid pink breast cancer awareness t-shirts to care about fixing my child's eyesight. 

When his new glasses come in, we will start patching again. I get to enforce this all while knowing it is only to postpone the arrival of the day where he only has one functioning eye - an eye with the exact same defects. When we go back in September, we will start discussing yet another surgery which, again, will only postpone the inevitable. I cannot let him know how upset I am because I never want him to think he is damaged in some way or not good enough. He is beyond perfect and by far one of the three greatest blessings of my life. I just wish so much that I could make things better for him. 

Chicken and Dumplings (the super fast easy way!)

It's been a while since I've posted on here! Not that we've not done anything worth sharing, it's just that life has been way too crazy to sit at my computer long enough to type anything that makes sense. 

It's fall again, which means pumpkin flavored everything and wonderful comfort food. There is nothing better than a big bowl of awesome chicken and dumplings. I'm a person who loves to make everything from scratch. For years, I've painstakingly cooked a whole chicken and rolled out made from scratch dumplings. Recently, I was feeling lazy....and I cheated....a lot. I hate to admit it, but this super fast version is just as good as my two hour made from scratch version. 

Ingredients:

1 Rotisserie chicken from the deli section of your grocery store

2 cans of Pillsbury buttermilk biscuits

1 box of chicken stock

1 can of cream of chicken soup

1 1/2 cups of milk

1/2 stick of butter

1 tsp Lawrys seasoned pepper

1/4 cup flour

3/4 cup milk

Go ahead and pull the chicken apart. Set aside.

Take your biscuits and tear into pieces. I roll each biscuit into a tube and break into four pieces. Set aside.

Over medium heat, whisk together chicken stock, soup, and 1.5 cups of milk until soup is dissolved. Add seasoned pepper. Bring to a boil. 

Add butter, stir occasionally. Once the butter is melted, add dumplings a couple at a time. Let simmer while you mix up the thickener. 

In a small bowl, mix together the 1/4 cup flour and 3/4 cup of milk until flour is dissolved. Slowly pour this into your dumplings, stirring constantly. Once the liquid is thickened slightly, add the chicken to the pot. 

Cover and let simmer on medium low heat for 20 minutes, stirring occasionally. 

Seriously. That's it :)

Thank You - An open letter to Lauren and Lindsay

From the moment Carter entered this world, I knew he would forever dance to the beat of his own drum. 

From the moment the word "autism" entered our lives, that drum beat suddenly became foreign, erratic, and terrifying. 

I am a planner. I seek control in every aspect of my life and I do fear the unknown. For the longest time I questioned whether God had taken leave of his senses when he gave me a child who was a complete mystery...not to mention a challenge. Don't get me wrong, I love Carter fiercely and would move the heavens and earth for him, but I have often wondered if I were truly capable of meeting all of his needs. In fact, his needs are so numerous and overwhelming that I sometimes struggle to look past them and simply see my precious child, hiding behind the wall that his differences have built around him. 

When I enrolled him in soccer, I never expected him to actually participate. He hates crowds. He hates noise. He has asthma and wears ankle braces. To me it felt like just one more futile attempt at molding him into something he is not. His big brother lives and breathes soccer so I thought I should at least give him the same opportunity.

His first game, he cried and was scared, and we weren't sure if he would play. Between the loud music and the people swarming around him, I can't imagine what a sensory overload that must have been for him. Imagine my surprise when he wiped his tears away and finally ran out on the field. Since that day, Carter has been nothing but excited about soccer. 

Today was his third game. He was still slow to leave my side, still flinched at the music, and still looked at his teammates like they're aliens when they tried to talk to him. He still runs alongside his team rather than really with them and only kicks the ball when he is specifically instructed to...but today was different as well. There's this thing that Carter does when he is excited. It's almost as if there is so much joy flowing through his tiny body that his arms start to flap and he skips rather than runs. He started doing that as soon as it was his turn to play today. When the music played over the loudspeaker during timeouts, you could literally see the stress of his environment melt away and he started to dance right there in the middle of the field. The look on his face was blissful and absolutely carefree. 

I cried tears of joy the entire game. 

Thank you, Lauren and Lindsay. 

Thank you for being part of an organization that spreads the love and joy of Christ - that accepts and welcomes my child who has difficulty finding his place everywhere else. Thank you for loving him at first sight, for your enthusiasm and encouragement. Thank you for every single time you choose him to throw or kick the ball back in-bounds because he jabbers so excitedly about those few seconds hours after the game ends. Thank you for your patience, and your decision to volunteer your time and energy to others. Thank you for bringing happiness to my son. Thank you for allowing me the opportunity, for one hour every Saturday, to sit back and watch Carter simply be himself. I've never seen anything more beautiful. 

Thank you.

Kindergarten Is A Scary Place

From the moment the word "autism" entered our world, I knew and fully accepted that raising Carter would be full of challenges. Many obstacles that we have faced so far, I have anticipated and met head on. Others, have come in some pretty surprising packages. The most difficult part of being the mother of an autistic child, is that it's incredibly hard for me to look at Carter and not see the autism first, and Carter second. I hate myself for that. 

We spend hours each week in speech, occupational, physical, and behavioral therapy. We drive for hours to out of state specialists who are helping us to piece together the puzzle that is my son. We're spending most of our tax return to pay off one of the surgeries that will hopefully keep him from losing his vision. We strap braces on his legs and exercise daily so he can build the strength to do simple things like walk down the stairs. We spend so much time and energy focusing on his differences that it's almost impossible not to see them. I know that eventually, the novelty of all of this will fade and we will be able to integrate his differences more seamlessly into our lives, but that day hasn't come for me yet. 

I live for the moments when the veil of autism briefly lifts and I simply see my son - the charming blue eyed boy with the endearing smile; who loves tractors and trains and dancing to music that only he can hear. I am a great mom, but I am far from perfect. I wish those moments weren't so few and far between. 

At my last meeting with Carter's preschool teachers, they mentioned that he was making remarkable progress and would definitely be ready for Kindergarten in the fall. Even though integrating Carter into a regular classroom is something that we have been working tirelessly for, and I am incredibly proud of his accomplishments, Carter starting Kindergarten has seemed so distant and abstract up to this point. Now it's real, tangible, and looming ominously in our very near future. It's terrifying. 

Preschool feels so safe. He isn't held to rigid academic standards. He and his peers sing songs and learn through play. When Carter is feeling overwhelmed, there is a pretend kitchen area in his classroom where he can go and observe from behind the counter. I can drop in whenever I want. I even get to set his goals, academic and otherwise. Many of his classmates are also in at least one type of therapy and sometimes even join him for his OT sessions. Carter is the only autistic child in his class, but here, it feels okay that he stands out. 

Kindergarten feels like a whole different ballgame. A new year means entrusting him to the care of people who have not yet learned to love him. People who may not be as quick to understand when he acts so differently from an entire classroom of other children his age. I know and adore all of the wonderful ladies who will be teaching him next year, but this worries me all the same. 

Kindergarten classrooms don't have kitchen areas where he can hide when he's scared. They have lines to stand in and seats to sit quietly in but Carter still lacks the core strength to stay in a chair without taking breaks. They are full of children who don't have accidents and need to change their clothes during the day. Kids who wont understand when Carter absentmindedly reaches up to rub their earlobes or when they see him on the floor rubbing the carpet with his cheek. Kindergarten classrooms are full of kids who are drawing pictures and writing their names, but Carter has yet to hold a pencil long enough to do any of that. Academically, Carter's IEP is what is getting him into a regular classroom. It breaks my heart to think that he will be sitting in that seat only because he has his own set of rules. I'm afraid that once he starts school, he is going to be the child who is always a few steps behind...and eventually, he'll figure that out. It feels like I'm tossing him out into the real world where the pace is too fast and that "autism" label will begin to take on more meaning. 

I want nothing more than to just hold him safe in my arms and protect him from the world. Our society makes it so difficult to be anything other than average and I never want him to feel ashamed for being something more. I know that integrating him into a regular class will do wonderful things for him, but I'm afraid of the damage it could do as well. He is such an incredible, fascinating little boy with a spirit that I never want broken.  While he is quick to anger, his joy is intense and intoxicating. I'd hate for any part of that to be taken away by him realizing that he isn't like the other kids he spends his days with. I cannot begin to describe how fulfilling my life has become since Carter entered it, but special kids come with their own unique set of obstacles. All I can do is pray that I'm always doing what is best for him, regardless of my apprehension. 

Jake's Favorite Cinnamon Bread

At least once a day, I get this overwhelming urge to bake something. The other day, I was foraging in cabinets, trying to find some simple inspiration. Jake, my seven (almost eight!) year old, said he wanted cinnamon rolls, but I was short on time and not really willing to clean up the disaster that cinnamon rolls tend to make. 

Cinnamon did sound great though, so I whipped out my handy mixer and threw some ingredients in the bowl. The result was an instant household favorite. Jake polished off an entire (mini) loaf himself over the course of that evening and the next morning. As he was licking the crumbs off of his plate the next day, he looked up at me with grave sincerity and said, "Mom, you have to blog this bread." So, per Jacob's request, here is his favorite thing in the world: Jake's Cinnamon Bread.

Ingredients:

1/2 cup (1 stick) of butter - softened

1 cup white sugar

1 egg

1 cup of buttermilk (I actually didn't have any on hand but you can cheat by using 1 cup of regular milk, adding 1 tablespoon of vinegar, and letting it sit for a couple minutes)

2 cups of all purpose flour

1 teaspoon of baking soda

1/2 cup of sugar and 2 teaspoons of cinnamon mixed together.

Directions:

Preheat oven to 350 F

In the bowl of your mixer, cream together butter, 1 cup of sugar, and the egg.

Add the milk, flour, and baking soda and mix just until incorporated. Divide about half of your batter between two mini loaf pans (or a single 9x5 loaf pan). Sprinkle about half of your cinnamon/sugar mixture over the batter of the two loaves to create the cinnamon ribbon in the middle of the bread. Then pour in the rest of your batter. Top the loaves with the rest of your cinnamon/sugar mixture. It looks like a lot, but this is what makes the awesome cinnamon crust on top. 

Bake loaves for 45-50 minutes or until a toothpick comes out batter-free. Let cool in the pan for a few minutes before removing. Slice and enjoy!

Resolutions

Typically, I think New Year's resolutions are silly. December 31st seems to be full of people indulging in all of their gluttonous desires and making promises that, come midnight, everything will change. They will eat healthy, quit smoking, exercise regularly, and dump that loser boyfriend (after they get a good instagram pic of their New Year's kiss of course). Then, come March, the same person is sitting on the couch right beside loser boyfriend, a fistful of Cheetos in one hand and a Marlboro in the other, sobbing as they watch a Nutrisystem infomercial. 

The idea of actually waiting for a particular day to better yourself seems absurd to me, however, a new year does often give us a chance for new beginnings. Over this past week, I've been looking over areas of my life that could stand to improve. The more I came up with, the more I realized that many of these are things that society, as a whole, could stand to work on as well. 

The iPhone has got to go...(but not entirely)

Every single time I leave the house, my two year old daughter, Natalie, asks, "You got your phone, Mom?" Every. Single. Time. At random times throughout the day, she will ask the same question. She is constantly checking to make sure I know the whereabouts of this precious device. I have always been a vocal opponent of people burying their faces in their phones in public places (e.g., doctor's offices, your kid's soccer game, etc.) but it seems that I need to follow my own advice at home too. I have devoted so much time and placed so much importance on my phone, that even my toddler can't stand to be without it. I am resolving to live a life where time that could be better spent with my children is not wasted on scrolling though my Facebook newsfeed; where I spend less time looking through a camera lens and more time making real memories...memories for myself and our family, not 800 of my "closest" friends; where my kids see that they are my priority, and not the silly device in my hand that is going to be outdated in a few months anyway. 



Don't sweat the small stuff...

Just the other day, Jacob was racing through the living room when he stumbled and dropped his new Nintendo that he got for Christmas. We watched as it flew, seemingly in slow motion, across the room and landed inexplicably on the couch. When I looked back at Jake, I noticed that after his Nintendo had landed safely, he cringed. "He is afraid of how I'm going to react," I realized. I can count on one hand the number of times I've yelled at my kids (all fairly recently) but clearly those three occasions have had a devastating impact. I want my children to grow up to respect me, not fear me. A child should never ever fear the consequences of an innocent mistake. That's how we grow and learn - by screwing up. 

Jacob's timid anticipation of an outburst from me made me realize that it isn't just yelling that I need to work on. It's my entire attitude. It's the exasperated sighs when they have to go to the bathroom during church every twenty minutes. Instead, I should be overjoyed that my potty training two year old and my autistic four year old (who still wets his pants more often than not) are asking to go! It's the eye rolling when I am asked to read "Love You Forever" for the billionth time that evening. There will come a day when they don't have time to listen to me read. It's the sarcastic "Now look what you've done" when a drink is spilled. There's (usually) no harm in a spilled drink. It's the frustrated lectures when Carter's glasses are stepped on and broken - again. Instead, I should be getting him to think of more appropriate places to put them. Isn't that why I paid for the replacement insurance on them anyway? It's not like I didn't expect things like that to happen. Therefore, I resolve to not sweat the small stuff, to regain control of my patience, and set a better example for my children. 

The house can be messy...(within reason)

Nothing flares up my anxiety quite like a messy house. I leap out of bed every morning and head straight to the basement to start the laundry, then to the kitchen to unload the dishwasher. I cannot even begin to think about fixing breakfast until those things are done. If my kids want me to play with them, I have, on countless occasions, told them that they had to wait until the laundry was put away and the floors are swept. Here's a newsflash (for me at least): I have a husband and three children. There will always be laundry. There will always be dirty dishes. In a house with all hardwood floors, there will always be a crumb somewhere. My kids on the other hand, will always be older tomorrow than they were today. Their interests and abilities are changing every moment and I don't want to look back on their childhoods to realize that I could have made more time for them; to realize that I missed out precious moments because I was cleaning something that was inevitably going to be demolished again anyway. I am resolving to find a balance between parenting and all the other hassles of daily life. 


Nix the "fat" talk...NOW!!!

One day, the way I talk about myself will potentially make an incredible difference in my daughter's life. Sadly, Natalie is growing up in a world where physical appearance is of paramount importance. The way she handles the pressures of society will be greatly influenced by the way she sees me manage my own self esteem. If I am constantly criticizing myself in front of her, I have the ability to teach her to obsess over her flaws, to constantly compare herself to others, and that her self worth directly correlates with the numbers on her scale. On the flip side, if I embrace myself, I can teach her to embrace any part of herself that may be different, I can teach her that her character is worth so much more than her reflection, I can teach her that you don't have to conform to society's version of perfection in order to be loved. I resolve to teach my daughter to be more than just her reflection. 



Work is work...then I go home.
Most days, I hate my job. I don't mean I dislike it a little and it's inconvenient for me to go in. I mean I hate it so much that I have actually prayed that I would lose control of my car and crash just so I would have a legitimate excuse not to be there. 

I cannot keep thinking this way. I am only clocked in for 12.5 hours three times a week. These three days provide insurance for my family as well as (a little) extra money. I do love my coworkers, and once in a blue moon, it really isn't as horrible as I make it out to be. I resolve to be grateful for employment, even on days when my patients are horrible and we are dangerously understaffed. 


Oh, and I want to lose weight :)

Lemon Cheesecake with Warm Lemon Blueberries

Ingredients:

Crust:

2 cups of graham cracker crumbs

1 stick of unsalted butter (melted)

1/2 tsp cinnamon

Filling:

1 pound (two 8oz blocks) of cream cheese (softened)

3 eggs

1 cup sugar

1 pint (16 oz) sour cream

1 lemon (zested)

Dash of vanilla extract

Topping:

1 pint blueberries

1 lemon (zested and juiced)

2 tablespoons sugar

Preheat oven to 325 F

In a mixing bowl, combine the crust ingredients with a fork until evenly moistened. Pour crumbs into an 8 inch springform pan and smooth across the bottom and 1 inch up the sides. Place in the refrigerator to chill while you prepare the filling. 

In the bowl of your mixer, beat the softened cream cheese on low speed until smooth and lump-free. Add the eggs, one at a time, and continue to beat until incorporated. Gradually add the sugar and beat (still on low speed) until creamy - about 1 to 2 minutes. Be sure to frequently scrape down the sides of your bowl and beater as lumps love to hide there!

Add the sour cream, lemon zest, and vanilla. Beat slowly until well-mixed. Pour into prepared crust. Set the pan on a large piece of aluminum foil and fold it up the sides. Place this in a large roasting pan and fill the roasting pan with boiling water about 1 inch up the sides of your cake pan. The aluminum foil will keep the water from seeping into your cheesecake. 

Place in the oven and bake for 45 minutes. Your cheesecake should still jiggle when you take it out of the oven as it will finish setting as it chills. Place in the refrigerator for about 5 hours. 

For the filling, place ingredients in a saucepan and simmer over medium heat, stirring occasionally, for approximately 5 minutes - or until the fruit begins to break down slightly. Remove from heat and allow to cool. 

Remove cake from springform pan, using a thin spatula to loosen the crust from the sides if necessary. Spread the blueberries across the top, slice, and enjoy!