What's the use of five?

I’ve talked before about how all the tough conversations seem to come in the car. I can never figure out what’s up with that. Is it because the kids are not looking me in the eye? And it’s not one or the other that does this more often. It’s both the kids. I am Sidney’s girl scout leader (about to be inundated with many cookies, but that’s another post), and as we were driving over to the meeting, out of nowhere she said to me, “Mom I wish I could be like everybody else.” She has expressed on occasion that she would like to have five fingers to which we ask her if there is anything that she is unable with three fingers that we can do with five to which, of course, she answers no.

This time she was simply saying it’s frustrating sometimes to look different. I think going to school there have been children who are kindly curious. It’s the curiosity that means they don’t understand why. There might be a frightened look or a question. Typically these are the children that understand quickly this is the way God made her and move on. Then there are the gawkers, the repeat offenders who come back to us on a weekly basis in places like church and grab her hands. Mama bear takes care of those.

“Sidney God made you perfect. God made you, you. There is no one else like you. Is there anything you can’t do with your three fingers that I can do with five?” “No mom,” she answered in the familiar mantra that has become our conversation. Tom is ready to let her tell kids that a shark bit them off. Sorry maybe some people don’t find that funny, but we prefer to keep a sense of humor about all things in our house.

What she told me next shocked me. She started talking about the girls in her class. Her two closest friends have made no mention or worry about her differences. In fact at the moment she is caught in a friendship triangle. Sidney is not one of two vying for the other person’s attention. No, she is the one being fought over. Instead she said, “(Enter girls name) said she wishes she had three fingers. She thinks it’s cool.” That’s when was reassured once again everything will be okay.

Sometimes she is so mainstreamed with her differences that forget. I shouldn’t say, “Sometimes,” because it’s really all the time. She goes to school with her peers without an IEP. She has such an outgoing personality, that I’m not sure from the time another child meets her to the moment they realize there are differences that they have time to care.  Her friendship and spirited nature take over before it matters. So we will take these conversations as they come.

I’m not quite sure where to stop writing, so this is it. I am off to start my day which includes cleaning and baking. I have to force myself to do the first part and give myself the reward of the second. The kids have an open house tomorrow, so stay tuned for more pictures. 

Extendo Holiday

More Christmas pictures! Celebrating at my parents, it was one of the only days warm enough to enjoy being outside. 

I love the nights we make “mashed potatoes.” While the kids are lapping them down, they have absolutely no idea they are actually eating a head of cauliflower. This is the only secret ingredient we use cooking.  Tom is the master, covering the top of the pan with sliced potatoes. We don’t typically deceive our children about anything; however this is a matter of heath. I thought our plan was foiled when Tom was called out for work leaving me to complete the process. Eli came in the kitchen rambling as he does about a fact he’d learned as I said, “I’ve got something hot! Stay in the living room,” despite the fact that he’s 11 and knows to stay away.

Uncle Jason (my brother) was such a good sport to keep pushing me on the sled!

This is the 19^th day of Christmas break. Can you tell I’m feeling crazy? Sidney has finally succumbed to the lack of routine with a couple of meltdowns while the days drag on. We are experiencing the “polar vortex” discussed everywhere on the news. Mother Nature is having her way with the weather which doesn’t allow for time outside. This is vital for Sidney. Yesterday morning I picked up my phone to see it was -18 outside. The complete opposite of his sister, Eli is elated to have the additional time on break from school.

Tromping around the yard with my cousin Finn and the neighbor dog.

Speaking of school, we had a hard conversation with Eli the other night. We are looking at sending him to public school next year. He’s attended our small private Catholic school since kindergarten, so starting in 7^th grade when everyone else in our community goes to the building for 7-1th grade, we would like him to go at the same time as the other kids. 

I love this glazed over look on my nephews face. Ah the magic of Christmas. 

Yesterday during Sunday School one of the kids in our class told him, “But you’ll be with all your friends.” Awesome! This is exactly what he needed to hear. Actually he thought of getting an iPad for his own use was also enticing. Obviously our decision will be based on much more than technology. I can’t tell what he’s thinking. Of course that’s nothing new. Part of me thinks, he wants to make the decision to move over, but it’s a really scary thing to think about. I’m sure he would just love knowing this was on here for all the world read. Of course, he might be more upset about the cauliflower. 

Procrastination

I guess I can’t procrastinate the job I started upstairs much longer, so I figure blogging is a good excuse. I’m in the process of going through the kids clothes. I typically try to do this a few times a with shifts int the season. I'm doing it now, because Sidney is growing! She has grown four inches this year. Eli grew four and a half inches. He’s turning into my giant. When he was a baby, the doctor estimated he will be 6’5”, so when he is fully grown it will be fun to see how close he hits. He’s already a size 10 shoe in men’s, and it’s time for a bigger pair.  

It's actually kind of nice to do something brainless like sorting clothes and cleaning. My work is quiet over the holidays. I'm enjoying it while it lasts. It’s good to take time to breathe. The past week was nuts between making sure all the gifts were wrapped, juggling kids home on break with working all the while relishing the fact that we didn’t have to rush out the door every morning and could stay in our PJ's a bit longer. There is no struggle to fly out the door with Eli in tow mumbling something about being sent to his misery (school). We are in the process of making big decisions about school, but I will write about that at a later time.

It's good the holidays are chaotic, because it forced me to have the conversation with Tom that the only problem I was experiencing was a first world problem. Without all the blessings in our lives, we wouldn’t have to worry about who was getting what gift and if we’d bought fairly for each child, if we wanted to bake cookies now or later, if the outfit had come yet in the mail in time for the concert, or when I was going to have time to get the roping on the front porch. 

I spent a few days feeling very conflicted last week as a result of this conversation. Not only do I think about the children in orphanages who don't know about Christmas and have never experienced abundance, I get frustrated at the lack of understanding about true need in the world around me. And we're all guilty of it. This isn't meant as a lecture. It's also a way to process all that was in my head.

Break means more time to cuddle with mom.

What else is going on? Eli is in euphoria on break, and Sidney has finally started to regulate during the schedule change a bit more. Any change in schedule is tough for most kids, but Sidney is a kid who completely excels in a strict structured environment. I think parents of sensory kids or kids in general from a similar back ground can understand when I say she never really lands. As Tom says, she doesn't "regulate" in her environment.  So what have I done to ease this? We are big on calendars in our house. Meaning if we are going to grandma’s house for Christmas, we draw a car on that day. If we are home, it’s a blank space. She is much more content when she can bring it to me and verify what is going on for the day. 

Okay off to get something done!

It's beginning to look a lot like Christmas...

Blogger is not cooperating or I haven't had enough coffee, but I'm going in reverse order. Sidney was more than excited to wear her sparkly dress before her concert Monday night! 

On one of the subzero Saturday's we've been experiencing in the Midwest, we ventured out for our tree. Guess who was not excited to go outside where it was freezing and walk through the lot but was more than ready to decorate? Miss Sidney. Eli usually helps with one orament, so mom can say he participated. He's lost the enthusiasum for the job but not the season. He's on the countdown to get out of school tomorrow. I, on the other hand, am frantic thinking I only have a few shopping days left!

All Things Medical

Sidney and I made the trip to the Univ of IA for her checkup of both her right hand and leg. Just to back up if you’re reading this the first time, Sidney is missing the fibula bone in the back of her left leg and has four toes on her foot. Her condition is called fibular hemimelia, and I’m printing it here, because I notice a lot of people hitting on my posts about the condition. She has a limb difference between both legs with the telltale sign of a fibular hemimelia patient, meaning she has an adorable dimple on her knee. Fibular hemimelia is a rare condition and even rarer for a girl. It’s most prevalent in males. Our geneticist feels her birth mom either had the measles or was exposed to a toxin. Both are a strong possibility, however I’m leaning towards a toxin.

Hanging out with my cousin Finn at Grandma Jean Jean's house for Thanksgiving.

Typically people with fibular hemimelia are  impacted in other areas of their body, meaning Sidney has three well-functioning fingers on each hand.  When she came home in 2009, two of her three fingers were fused on the right hand. Our hand surgeon did the delicate work of separating her fingers. This was accomplished with a skin graft off her hip. Her other hand was completed the following May with a separate condition caused by syndactyly, but I don’t want to confuse, so back to the right hand. Sometimes after surgery there is scar tissue buildup that needs to be revised. We tried to work with the scar tissue after the originally surgery to avoid this, however given the fact that she was in a lot of emotional turmoil first coming home, and what must have been an unbearable sensation on the newly separated fingers, she did not tolerate any type of therapy to work with the scar tissue. I’m not convinced it would have taken care of the scar tissue completely.

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Last April, she went in and had the scar tissue revised with another six weeks in a cast. This allowed her the summer to have her hands functioning well again before she started kindergarten. The separation still looks great. The doctor pinned her finger during the same procedure to attempt to correct the outside finger crooking inward. After the surgery it went almost immediately back to its normal position. Mother Nature tends to have her way. The doctor feels if she can tolerate wearing a brace this will work to avoid the finger bending. Scar tissue is not pliable and does not accommodate growth, so this is why we go for a checkup every six months.

Are you still with me? Then we were off to the orthopedist for a look at the leg. She is doing well with her lift and will continue to do so. Many people ask me if she will have this limb extended. My answer is no for a number of reasons not the least of which is a 50% chance of infection. We can’t chance infection. It’s already a miracle that her foot is in good condition. Her orthopedist has commented on more than one occasion it’s the best foot he’s ever seen with a patient that has fibular hemimelia. Typically patients with this condition have to have their foot amputated, because they do not have a fully formed foot. We are so thankful God gave her an awesome left foot. Besides, her four toed foot is completed adorable. Isn’t this how we become as parents of special needs children? We see things so differently.

Thinking

A couple of weeks ago, all 32 pounds of my “small but fierce” girl clomped up on a footstool, her head barely visible above the pulpit as she recited her memorized portion of the prayer during the Thursday morning children’s mass. One by one, each first grader read their portion of the prayer until it was time for the only kindergartener (Sidney) to do her portion. After speaking a couple of words into the microphone she cleared her throat loudly before going on. I can only assume this was to be if full voice. Anyone who’s been around Sidney for more than five minutes knows despite her small size, she is always in full voice. 

Sidney and I headed to the schools bizzare Saturday while the boys hunted. She got a cookie. Someone does these every year, and they always look awesome.

She did a beautiful job, but I sat in my pew for the first time in many months watching her and thinking of her biological parents. It's in these moments of intense pride or taking care of situaitons which would have been impossible in China, like the times we go to the clinic for her hands, that I think of them. I wonder if they could comprehend what's possible for her here?  Her education, Chrisitanity, medical care, and a family who thinks she hung the moon. It's another time I think of how blessed I am that God chose me to be her mom. 

We woke up this morning to more of this! An early out makes more time for fun in the backyard after school. 

Sidney's preschool class did a short play of the Hungry Caterpillar. Sidney introduced the play and took the role of the green leaf. Her responsiblities in introducintg the play included speaking into the microphone. Tom and I discussed that her teacher gave her this part, beceause she is not at all afraid to get up in front of a crowd. She definitely will never be the child given the part only to be found crying in a corner somewhere backstage. 

Instead, she was beeming ear to ear. This was one proud mommy. I'm sorry my photos are so aweful, but I can never seem to capture anything in the gym. At least you can get some idea of her happiness. Sometimes we notice her smile isn't a quick as other children, meaning her old soul comes out. There was no old soul on Thursday night. Instead, my little girl was rehearsing in her room a few hours before hand, "Presenting the Hungry Caterpillar," by Eric Carle, by Miss R's class." A few seconds later I heard this as she rambled on to no one in particular by herself in her room, "I sound great!" 

This photo is so hilarious. Coming up from taking bow!