Rudolph Made Ella Cry

Yesterday I gave the kids a ‘day off’ from school. I pushed them a little bit harder earlier in the week with plans for a “party” on Friday. Though we started off as a normal day, I surprised them with a stack of crafts and coloring pages. One of the crafts was this cute little guy:

Some of you may not know (so I’ll tell you), Ella has complex syndactylism in her left hand. In normal speak that means that her fingers were fused together. In some cases, syndactyly is only webbing between the fingers, in Ella’s case she had no defined digits. When we brought her home she had a series of surgeries to “give” her fingers. Her bone structure is so poorly formed that the hand surgeon, as good as he was, couldn’t give her five digits. So, she has a thumb and two fingers. Her hand rarely is an issue, I honestly forget about it most of the time. She has never exhibited any feelings—good or bad—regarding her ‘little hand.’ When we are presented with projects that require hand tracing, I’m an equal opportunity hand tracer. I don’t shrink away from crafts requiring hand prints because I don’t want Ella to grow up feeling weird or funny because she has a ‘little hand’. That has ALWAYS been fine. And that has ALWAYS been my policy. My policy changed yesterday.

Each of the kiddos traced their foot on brown paper; then traced their hands on black paper. Ella balked when I started to trace her little hand. She looked at Everett’s nearly completed reindeer and said, “But my hand is different.”

In a moment of poor mommying I said, “Yes, your hand is different, but it’s still going to look nice as an antler on your reindeer.” Looking back I should have taken more time, maybe looked closer at her face to see how upset she was, but I didn’t.

She seemed unconvinced by my statements, but let me trace both hands. Then she started getting frustrated with her cutting skills, and I had the idea that for the first time she may actually CARE about how this craft turns out. For the most part she has generally done crafty things to appease me, and keep up with her brothers. Unconcerned with the finished product, or whether she finishes them, sometimes she even goes so far as to destroy the project as she creates it. So, we press on, gluing the antlers onto the footprint, then sticking a fuzzy glitter nose on. The kids were giggling at how their reindeer turned out, laughing that Eli drew a big smiley face and Ella drew eyebrows. I was surprised that Ella went beyond my expectations by drawing a face on her reindeer. We hung the little guys up and moved onto the next “phase” of our partying. Carmel corn and Disney’s “A Christmas Carol” followed by gifts (play dough and paint by numbers).

All was well, until Seth came home. Excited to share what we did today, the kids ran around showing him the pages they created, the paintings they did and then ran to the window to show him their reindeer. This is when our day took a turn. The boys were jumping around, general mayhem and excitement, “Look at my guy, he’s so cute!”
“I made a smile, look at my Rudolph!”
“Mine is weird. I no like him.” This came from Ella. And it hurt my heart. Then she looked up at Seth and collapsed in tears.

Several thoughts raced through my mind as I tried to figure out how to react. I was (as horrid as this sounds) happy because her feelings were complex, and she hasn’t before shown this sort of emotion. Every reaction she has is based on the concrete—she falls, she cries; she breaks a toy, she cries. She doesn’t deal in the abstract. For her to see her reindeer and realize that it looks different, then see that the difference is because she has a hand with three fingers, then be upset about that—well, that is momentous to me.

So I was excited for a millisecond. Then I saw her sobbing in Seth’s arms and the reality of what was happening set in. This was the official first time for my daughter to cry because of her differences. And I was faced with the stark reality that neither Seth nor I knew how to handle her sobs. He caught my eye and I just stood there, paralyzed. My eyes were welling up with tears and I didn’t want her to see me crying. Seth was whispering in low tones trying to console her. Neither of us had anything spectacular to say. We said what we’ve always said, “God gave you to have a special hand for a reason. We love your little hand.” The boys had gone into compassion mode and were raving about her hand, her reindeer…making fun of themselves; trying anything to cheer her up. As I spoke I felt very scared about what we will face as she gets older. I realize that “God made you with a purpose” probably won’t help a pre-teen stop crying. I know she’s going to ask “Why?” and I won’t have an answer.

Homeschool Family

I got this link last week, but didn't get a chance to see it until a few days ago. I laughed quite hard (especially because they have a big white van). If you are a homeschooler then you will laugh at how ridiculous this is, if you aren't, then you will laugh at how ridiculous this is. Click on this link: Homeschool Family Video

Life's Passing Me By

Thursday I had serious plans. They were so elaborate and extensive that I had a detailed play-by-play of where I should be throughout the day. First on the agenda was to enjoy “A Christmas Carol” at a local theatre. The theatre company had pared down the length of the original show so it would hold the attention of kids. They also pared down the price—which allowed the kids and I to attend (at $25 a pop I was NOT going, but for $5…). Dressed in our best, excited about the morning at the theatre, armed with list of activities to be done after the theatre; we left the house. Two minutes into our trip I experienced shooting pain from my neck down my left arm. Neck pain is unusual for me and in my inexperience I thought if I could just get to the theatre and sit still I would be fine by the end of the show. I was so mistaken! By the end of the show I could barely walk. The tiniest jostling of my arm or my head sent radiating pain through my left side. I sat in the Van, wondering how I would drive home. Tears seeped from my eyes just as much from pain as frustration, I had things to do!

Before you call me a wimp and tell me to take an Aleve and move on…I need to defend myself. The fact that I had tears escaping--big deal. When I was in labor with Eli, without meds, I leaked a few tears. I'm a crybaby about some things, but since I became a mom, not much coddling going on here. With that said, I hurt enough to admit defeat and call Seth in the Big City requesting that he take over as stay-at-home mom/teacher of the brood. When we got home I lay down and didn’t move until that night.

Other things were going on the other side of the world on Thursday. Several families from America World had court. Delays because of incomplete paperwork (on MOWA’s side) had resulted in these families waiting since October for this day. I wanted to spend the day in prayer for these families. Sadly, my best intentions were interrupted by life. In the wee hours of the morning I prayed for them, then I got busy with my schedule. I couldn’t bare my soul to God, because I was busy running amuck with my crew. How plans change! What an interesting way to find myself in prayer for the kids who wait and their families. There on the sofa I spent the day, initially agonizing over all I needed to do while unable to do anything. So I read and prayed.

The end of this story is bittersweet. That evening Seth got online to see the outcome of court. He taunted me by telling me how absolutely adorable the babies were. I’ve been looking forward to seeing pictures of these babies since October, but just couldn’t…get…off…the…sofa (though I tried). Here you can see pictures of the David’s baby girl, Sakari. The Carpenter family received an unfavorable ruling in court, which is quite devastating. They found out on Friday that it was simply a document not being completed by MOWA and will get another opportunity for court on December 28th. I’m already prepping myself to keep most of that day free!

Unsolicited Advice

I try not to give advice unless it's requested. I don't usually stick to it; though I wish I could. Here's a nugget of advice that comes straight from my experience...

If your laundry room lightbulb goes out, you may just want to avoid doing laundry until you replace the bulb. There MAY be SEVERAL different colored crayons in someone's pocket that get missed as you do the laundry in the dark. When you switch the wet clothes into the dryer (still in the dark), you may unknowingly put the crayons in the dryer too. Then after drying the clothes you pull them out and put the next load into the dryer. As you fold the newly washed and dried clothes in a well lit basement, you may FINALLY notice strange colors melted all over each of the freshly cleaned garments. This will strike terror in your heart as you realize that the load in the dryer right now is all YOUR clothes. As you frantically sort through the clean load you won't find any evidence of what did the colorful damage. Terrified, you will race into the dark laundry room to peer into the dryer. You will probably then, in the dim light from the basement, notice that there are globs of melted crayons on the inside of the dryer door. This will result in chipping the crayon off of the door and, sadly, hoping that the bits left on the door won't ruin any of YOUR clothes.

Once you replace the lightbulb you will fruitlessly apply magical stain remover to each spot of crayon that taints the load of children's clothes. Unfortunately, everyone knows that the magic stain remover isn't magic once the stain has been dried into the clothing. So, in the end, you re-wash the load of clothes and still have crayon marks all over each item. But, you rejoice because your clothes are fine. Besides, people will see your children's multi-colored stains and smile at your ability to run your home, school your children, AND assume those stains are from the crafty, colorful adventures you did in your free time!

If you aren't up to that headache--I'd just avoid doing laundry until you have the lightbulb replaced...

Thanks

Thank you to all of you who have left comments or contacted me regarding my last post. It has been such a blessing to read what everyone had to say. We covet your prayers, thank you so much!

I didn't mention in my post that the neurologist that we had been referred to ("The Man" as far as neurologists in this area) scheduled an appointment for us in March. I called Ella's pediatrician and they were upset that he would expect her to wait until then to be seen. Though it wasn't HIM scheduling the appointment, and what would the receptionist know about Ella's case? The pediatrician's office called me the next day with an appointment with a different neurologist in January. This is so much more palatable; I'm hoping that we can get her seizures under control before we go to Ethiopia. I kept thinking a few weeks ago, in the throes of the unknown, "What if I had two more babies here? I would be a mess!" So, even if I was upset about the wait, God's mercy is evident in allowing us time to take care of Ella before we are taking care of two more children.

Encouragement

I have put off posting about this, unsure of how to handle it. I'll try to be short (yeah, right) and to the point. Ella is pretty delayed in all facets of learning. In an attempt to help her (and us) we visited a developmental pediatrician a few weeks ago. After describing some of the things that she was doing, he suggested IQ tests and an EEG. Back in September (when our van broke down), she started fluttering her eyelids and rolling her eyes around. It was that weekend that we were stranded, she was very stressed out, and we all figured it was just how she was handling the stress of...being without the van? When we got home the fluttering didn't stop, it was accompanied by her losing a few seconds of reality. Our pediatrician wasn't concerned about this, but wanted us to see this developmental pediatrician because of Ella's delays. When we described her symptoms and abilities he shocked us by saying that she may be having seizures and she may be mentally retarded.

Neither of these statements should have been shockers--Ella has febrile seizures and has had all sorts of tests run to figure that out. It's not a big deal, it's something she may grow out of, and we just pay close attention to medicating her while she's sick. It seemed strange to me that she would suddenly just start having seizures throughout the day, but I took her for an EEG. The results came back last week; they were abnormal, she is having seizures. Whoa.

Meanwhile, we were visiting a psychologist to see what's going on in Ella's head as far as development. Before he tested her, he spent an hour going over old tests and talking to Seth and I. He found a series of tests that the school system did several years ago. One of those tests generated an IQ score, the school system never told us about that test that they did. The results back then--Ella had an IQ of 71. Whoa.

It was a discouraging week to say the least. Monday morning we met with the psychologist again, this time prepared for the worst. Praise God he gave us good news, sort of. Ella's tests were low, but not because she is incapable of understanding the tests. She's unable to focus long enough to answer the questions (or in some cases even hear the questions). She's got inattentive type ADHD. Something we never would have thought about, because she is NOT hyperactive. As the doctor started talking about solutions to help her, Seth and I were seeing the light at the end of the tunnel. Then I blew it and mentioned her recent seizure diagnosis. Evidently, that causes a bit of a problem because most of the meds that treat ADHD can't be taken by people who have seizures.

Okay, we left the office a bit confused, hoping that a neurologist can help us get things straightened out. Last week, with the news of a referral not coming for a few months, I was in the middle of all of that. That was a little bit of relief for me, since I didn't know what was happening with Ella.

Yesterday, we heard that the family ahead of us in line accepted a referral of three siblings. That means we are next...