Lord, help the teachers….

Today I need to write and read. Not binge eat chocolate. Not drink wine. Just read and write. 

It’s been a day for the books, and yet it’s also been a very regular day.

2 kids refusing to spend 30 seconds hanging up their poster (that they just finished a week late) in the correct spot. Same kid losing rock paper scissors for who will hang up the poster, and kicking the door open and leaving the classroom without permission. Same kid crying and calling himself stupid at recess. Same kid stabbing himself with a pencil till he bled because he was mad at math. Same kid who I spent 20 minutes talking to other teachers about, only to decide we need to plan multiple meetings for this same kid. Same kid whose parents gave him toys a few days ago after finding out he’d threatened to shoot his classmate at school. The same kid who thinks that anytime he is asked to do something he doesn’t want to do, it’s “not fair” and “he doesn’t want to do it.” Same kid who doesn’t understand why people won’t stop disrupting HIM in class and why they don’t want to be his friend. 

This same kid? He’s just one of many that I teach every day with equal or greater struggles. This same kid? I remind him dozens of times a day to do the regular tasks you expect 5th graders to do. This same kid? I get to help him with work after school for another half hour every day. 

And this same kid? I love him dearly. I would give my life if needed to save him, no questions asked. 

But this kid is tough. And exhausting. And at times, ruins my day. So I write. Because I can’t sit down and grade 50 assignments right now. I need to vent. I need to cry. I need to write. 

Lord, help the teachers.

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To the ladies who stare at restaurants…

I know my son just threw up while you were trying to enjoy your meal.

I’m really sorry and ashamed.

But at the same time, I’ll go out to eat with my family again.

“He’s not sick,” I want to tell you–“we’re not spreading germs.”

“He has a feeding disorder, he gags easily, we’re sorry”–I want to tell them.

“See? He has a feeding tube!” I want to show them, as if to prove that I’m telling the truth.

But I stay quiet, because to acknowledge it more seems obnoxious.

And again I say, I’m sorry.

 

 

p.s. Yes, he is continuing to eat right after throwing up. No, I’m not going to stop him from eating. Yes, he may throw up again. And yes, having emesis bags within arm’s reach at all times while your child is eating is a thing that my husband and I are experts at. What a life skill. #sorrynotsorry

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Charles eating update!

For those who are following our eating journey with Charles, here is an update:

  • Charles is up to a little over 24 lbs. He was an 8 lb baby, so he’s finally tripled his birth weight! For reference, babies are expected to triple birth weight around age 1, and he turned 2 this past June. He’s around the 4th percentile for weight now. 
  • We recently had appointments with his feeding team of doctors and therapists, and after 3 months of not using the feeding tube at all, they were pretty satisfied with how he’s doing. Paraphrasing their words, they said, “We’re happy with where he’s at, but we can’t let up on pushing calories.” 
  • We are just excited that he is growing even without using the feeding tube, and we don’t need to go back to it yet! They said that when spring comes, and we’re over the hump of flu season, we can see how he is doing and possibly consider removing his g tube. 
  • Our little squirt is up to nearly 50th percentile for height. This is great! However, it means that he needs to gain even MORE weight for his BMI to be considered “normal.” So while he’s gaining both weight and height, his BMI is still dropping because his height is growing faster than his weight.  
  • Charles is getting way more confident with his eating, and he’s eating much more than he used to. He’s picking up a taco, eating casseroles, finishing a small bowl of cereal, and dipping food in ketchup or sour cream–all of which he would never have done 6 months ago. Previously, every part of the meal had to be separate (meat, noodles, etc.). 
  • We’ve adjusted some meds, mostly increasing reflux medication and starting an allergy med. I’m starting to suspect that silent reflux was at least a partial cause of his refusal to eat much since he was an infant, though he didn’t show signs of it until later.

We’re praising God for all that’s been happening lately for Charles and for the joy we see with his eating lately. Winter is scary, as last year it seemed like he was almost always sick, but we’re hopeful this year will be different. Thank you all for your support and prayers throughout this journey. We know that a feeding tube is not a life-threatening thing, but it’s been a big part of our lives and we are happy to see Charles begin to thrive without it.

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1 Year Anniversary

A year ago today, we were in the hospital with Charles while he was recovering from his morning surgery to place a feeding tube (g tube). July 31st was surgery day. He weighed approximately 16.5 lbs and was below the 1st percentile on the growth charts for weight. He was 13 months old. He didn’t know how to walk yet but crawled like a speed demon.

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Today Charles is just around 23 lbs even, about the 2nd percentile for weight on the growth chart. Once we stopped all tube feeds 4 weeks ago, he did stop gaining and even lost a little weight (about half a pound). We met with his feeding team of GI doctor, dietician, and therapists on Monday and they recommended that we go back to using the feeding tube if Charles isn’t drinking his recommended number of ounces a day of high calorie milk or juice. He’s getting closer to their goal, but not there yet. After 4 weeks of not using the tube, we really don’t want to go back to it, but if he doesn’t start gaining weight again soon, we’ll have to.

Weaning from the tube this summer, he’s made some progress. He’s drinking more pediasure by far (averaging 16 oz a day in early June, now averaging 21.5 oz a day in late July).  He’s also had quite a height growth spurt this summer, getting up to the 44th percentile for height! This tells us that he’s getting the nutrition his body needs to grow, we just need to see that weight stay steady or gain soon to give us that last cue that he can do this without the tube. Charles is now 25 months old, runs quite fast, can count to 10, and talks all day long! His therapists all agree that he has every skill needed to eat well, he is comfortable touching and licking foods, he just has some kind of fear of eating that keeps him from eating as much as he should.

My prayer is that he can learn to enjoy his meals, and that fear will have no place at our dinner table. My prayer is that he can gain just enough to show us he is healthy. We aren’t expecting him to be big! If he can just stay at that 2nd percentile for weight and not drop below the charts, that would be excellent.

Hopefully this update makes sense for those of you who are following our journey with Charles.  He’s a pretty special kid, and we love him very much!

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Summer Goals Update (Feeding tube wean)

This summer I had 2 top goals for myself:

  • brush Charles’ teeth every day (a hard routine to get into for some reason)
  • get back into the Word and journaling prayers regularly

I’m happy to say that both of these have been going well. I’ve been reading through Luke, 1 Peter, and Proverbs. Charles is getting used to “big boy” toothpaste and electric toothbrush.

My secondary goals were this:

  • switch Charles to straw (not spout) sippy cups–accomplished!
  • wean Charles from reflux meds–failed, we’ve realized he still needs them
  • try to wean Charles from feeding tube to see if he can eat/drink more and still grow without it–working on it (see below)

So the feeding tube wean…

  1. We started by dropping from about 13 oz through his tube nightly to 10 oz through his tube. A week or 2 of this, and he was still growing (up a few oz from last weight check). So we went to step 2.
  2. We dropped from 10 oz to6 oz nightly through tube. After 2 weeks of this, he was still growing (a few more oz since last check)! So we went to step 3.
  3. The last 2 weeks, Charles has had just 3 oz of Pediasure through his tube at night, and that’s it. The rest of his calories and liquid he is eating and drinking on his own. Tomorrow (Tuesday) is a weight check. If he hasn’t lost weight, we will try 2 weeks with no tube feeding at all. If he has lost weight, we’ll re-evaluate and decide what to do next.

It’s strange to think that tonight could be my last night hooking up Charles to his feeding tube, but I also want to be realistic in that there is a good chance he may need it again later, or a sickness in a month or 2 could throw him off and require us to use it. But we’re seeing progress, and I want to allow myself to hope some, too. 2 months ago he was averaging 15 oz of pediasure by mouth every day, and now he’s up to 20 oz a day on average. Some days it seems like he’s eating a lot more, but other days he doesn’t.

There is still a lot of unknown, but I’m clinging to the truth that God is to be praised no matter the results of Charles’ weight check tomorrow, and regardless of whether or not we end up tube-free in the near future.

“Give thanks in all circumstances (not just the good ones); for this is God’s will for you in Christ Jesus”

-from 1 Thessalonians 5, emphasis mine

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Failing to Thrive….or not

My son has never failed to thrive. He’s been developmentally on track or ahead his whole life. He was a healthy 8 lb baby with high Apgar scores. He’s a happy boy and was a happy baby, crying when tired and hungry but otherwise happy.

But at 9 months old, his tortoise-slow weight gain and lack of appetite caused some alarm, and we started seeing specialists. Our reason for GI referral: “failure to thrive.” What a frustrating description.

Fast forward many appointments, 1 surgery to place a feeding tube, and 14 months, and my son is now 7 1/2 pounds heavier. He’s also a much better eater than he used to be. But his charts still say “failure to thrive.”

And then today–it’s been 5 years since I did mandatory reporter training, and I had to do it again to renew my certification.  Lo and behold, on my screen as a possible sign and symptom of physical, mental, and sexual abuse: “failure to thrive.” I even answer ‘check for understanding’ questions about a girls who is thin and frail and how I should recognize that as a sign of her abuse. I’m thin and fairly frail. I’m a mother to a thin child. I wasn’t abused, and my son isn’t either. I wore my grandmother’s wedding dress 4 years ago, we were the same size at around age 20, was she abused? “NO!” I want to shout from the rooftops. And “No!” I don’t have an eating disorder, middle school classmates who asked…(side note: words matter, and they’re hard to forget)

I know most people struggle to lose weight, but being this small genetically isn’t a walk in the park either.

My size “1 long” pants might sound great to you, but they’re sold in teen sections only and I’m a fashion-inept 27 year old mom. I’d rather shop with the other women in the women’s clothes section.

I’d rather not cry during my mandatory reporter training because the same term is used to describe both an abused child and my son.

LORD, help me.

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Gender in Church Leadership

Growing up, I was never told I couldn’t do something because I’m a girl/woman by my family, my pastors, my Sunday school leaders….no one said this. But my church families implied it. When the children’s ministry leader was a woman, she was the “Children’s Ministry Coordinator.” When a man was hired to replace her after she moved to a different position, he became the “Children’s Ministry Pastor.” Same job, different title. The man was given a higher position of authority in the church that comes with the title pastor, simply because he was a man. He wasn’t more skilled, he wasn’t doing different work, but the church seemed to believe in his authority/power because he was a man. Seemed to because the church (and every church I’ve since been to) has tip toed around this. We say a woman has a different role that is equally valued, but we won’t say lower role. We won’t admit that there are things a woman can’t do in the church that men can, but nothing (that I’ve seen) that a man can’t do in church that women can.

Now, I will admit that I’m stubborn. And bold. And I don’t like to be told I can’t do something. So it’s hard for me to accept that my religion gives me less of a role just because I’m female. But if the Word clearly stated that women shouldn’t have that authority, and if Christ and the early church clearly followed this position, I would continue to try to accept it.

But I’m having trouble even wanting to try to accept “my role” as a woman in the church because the Word isn’t clear and the early church wasn’t consistent in this area and theologians and The Church (global Church, capital C) aren’t all in agreement about what this role of a woman should be.

1 Corinthians 14 say that women should be silent in the church. The context is likely speaking to a specific issue of women chattering or causing disruption in the church. Different manuscripts omit or move the 2 verses regarding women’s voice in the church, leading some to believe it wasn’t original to the text. Conclusion: the verse sounds clear, but its validity is questioned.

1 Corinthians 11 shows women praying and prophesying in the church, and this isn’t criticized by the author of the text. It even says (v. 10) that women have authority to pray and prophesy in the church (verb tense is significant here, passive or active voice depending on the interpretation of the original text). Colossians 4 references a house church led by a woman with no criticism of her role there by the text’s author.

Jesus clearly loves men and women equally, and his Kingdom is for all people regardless of gender. This is not up for debate, thank goodness, because this is critical to the gospel! The question is how critical to the gospel is the issue of women in church leadership?

Being in a church family right now that believes women should not ever be in authority over men in families, small groups, and Sunday mornings; and that believes women should have a very limited role in a corporate gathering that never includes interpreting scripture, has really brought up this question. Is it okay that I haven’t bought fully into the idea that women have a lower role in leadership? Is this my stubbornness, or is this the Holy Spirit speaking to me the truth of the gospel–that all people are loved and equal by our creator, and all people have spiritual gifts to share in all settings, and that all people should be sharing the gospel in all places.

Practically speaking, can I spread the gospel as effectively if my role is limited to being beneath my husband and other men in the church whenever they are around? In my workplace where my husband is not, can I speak gospel truth to my co-workers if I’m told at least once weekly that I shouldn’t be interpreting scripture to men/mixed company? Can I be confident that the Lord can use me to share his Good News if I’m constantly being told that my role is one of meekness, listening, serving, submitting, supporting…

Don’t get me wrong. I believe my role is absolutely meekness, listening, serving, submitting, supporting. But is it not also to go and make disciples, as Jesus said? Is it not also to share the good news in all places? The reality of 2019 is that I don’t just interact with women and children during the day, and so to spread the good news wherever I’m at means interpreting scripture with and to mixed company that includes men. It means speaking in the church on Sunday mornings. And based on the house churches in the New Testament, I think that women were doing these things in the early church as well.

I could very well be wrong. My role maybe should be much more limited. I was created as a helpmate for man, right? Not as the leader? But didn’t Christ come to break down those barriers? Wasn’t the veil torn with his sacrifice? Isn’t the gospel being spread more important that making sure I don’t speak too much or too loudly?

My prayer is that my heart will be softened, and that I will be more quick to listen and serve and submit to my husband. And my prayer is for wisdom, to know if my heart feels this way out of stubbornness alone or out of loyalty to the message of the gospel–He came to save ALL people who he loved EQUALLY and called (w/o exception) to SHARE HIS GOOD NEWS!

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