Unkind

Writing is how I emotionally work through what is happening in my life. The hope is that by unpacking some of this unpleasant day, I can calm my body and brain enough to sleep. I debated whether or not to identify them by name, but I decided against it--rising above and all that. I will be referring to them as Mrs. A and Mr. B.

It was a hard day today. Some are like that, I know. It felt like every part was a struggle.

Tuesday, there was a city bus stopped picking up passengers on my way home, so I turned down College Drive to pass it. It’s not a street I normally go on; it’s nice and quiet, near where Michael’s department has their supply shop. While I was driving, I saw a sign: “4 bedroom house for rent”.

Normally I avoid phone calls like the plague, doubly so those with strangers. There is this psych metaphor about spoons—you only have so many allotted spoons each day, and each activity takes a certain amount of spoons, which means you can only accomplish so many things in a day. You have to budget your emotional energy resources the same way you budget your finite money. Making a phone call, which seems innocuous, can be daunting because you have so little control over it. For me, it takes too many spoons.

But we need to get into a bigger place, so I figure it is worth a try. Probably going to be more than we can afford anyway. I call and leave a message on the listed phone number.

A little while later, I get a call back. It takes yet more spoons to accept an unexpected phone call from a stranger, but I answer. We visit about the house, size and price, what my family is needing. It is sounding fairly reasonable and she seems nice; she and I work out a time that afternoon for Michael and me to come see the house.

The woman’s husband takes us to see inside. Before we step foot in, Michael tells him that we have two older cats that are non negotiable. We are willing to pay deposits or work out conditions, but the cats come with us, so if they have a no-pets policy, this is not an option. Mr. B says that to get a family as renters, they might be willing to make an exception.

He shows us around the house and it is perfect. It is large and very nice, and comes furnished. All of our furniture is hand-me-downs, things we got free off of Craigslist and Facebook; it would be so nice to have things that aren’t falling apart. It’s a little more than we are spending at our current house, but it is twice as big, with four bedrooms. We are so excited because it has things we have been dreaming about—a dishwasher, a dedicated laundry room, counter space. This is a place we could be comfortable and happy in for a while.



At the end of the tour, Michael asks again about the pets. Mr. B wants to discuss it with his wife, but he thinks we can work something out—they like the idea of our family moving in. It is looking very positive.

We take an application, call our current landlord to ask if he will be a reference. Michael also speaks with a leader from our church whose financial advice we seek often and appreciate; he, too, agrees to be a reference, and says this sounds like a wise move for us. Both of our references are friends with the landlords, both people the couple respect. They have discussed the pet situation and we agree on an additional deposit, plus to pay for the carpet to be cleaned once a year. We are told to bring our application by in the morning and our deposit by the weekend, and we could have the house.

I tell Mom about it and the name of the couple we met with. Her eyes got wide—she knew this woman as they had attended church together in the past. Mom recommends I call Jarrod and talk before we sign any paperwork.

Wednesday morning, Emerald and Tula had doctors appointments with their endocrinologist. Tula had trouble sleeping so I was up a lot of the night before, not at my most mentally sharp. Emerald was moving slow, having to be told multiple times before she would accomplish a task, and it was frustrating me. We drop the application off with Mrs. A and hurry late to the appointment.

Tula was fussy from having not slept well and struggled throughout the double-length appointment. The doctor does not recommend a pump for her, which is disappointing but understandable. She is still in the honeymoon phase of her disease and it can fluctuate too much for a pump to be advisable.

It’s finally over, but we have to go get the girls’ hemoglobin a1c drawn. It’s a blood test they do every three months for their diabetes. Tula, who had finally fallen asleep on the car ride to the lab, was displeased by the needle in her arm. She was shaking all over and sobbing, calling for Daddy as her little arm bruised like a pear. We got through it. Emerald got dropped back off at school and I went home to have lunch with Michael.

Cartoonishly, annoyingly bad, while taking our frozen pizza lunch out of the oven, I drop it topping side down. It’s ruined. To the rescue, Michael ushers me to the car where we have a picnic lunch and listen to a podcast. It was actually lovely.

After I get the kids from school, Mom phones. Mrs. A had called her, which was odd—she was listed as emergency contact, not reference. Mrs. A had mentioned to Mom that she was going to “drop by” and visit with us about the cats because she had other interested parties. I am concerned because we might lose this house we both had liked so much.

I am out in the backyard pulling weeds to take my mind off what a horrible day it was when this woman I met literally met yesterday shows up unannounced and uninvited on my back porch. Emerald didn’t know any better and had let her in. I was so taken off-guard; she hadn’t called, had in no way implied she was coming over to my home, this place that she did not own. Our current landlord wouldn’t have sent her over without calling us; he always alerts us to visitors. Surely Michael wouldn’t have either.

This whole situation has taken spoons I didn’t have left.

This stranger says she has come to meet my cats. I say that they are rather shy and wouldn’t likely come out for people they don’t know, to which is promptly tells me to show her how we have them set up here. She talks and acts like she has a right to be here, like we had set an appointment for me to show her how we store the litter box and where we keep the cat food. Flustered, I show her.

She informs me then that she suddenly remembers that she has a severe cat allergy (which, had I known before, I likely would have discouraged her from entering the house as both cats are now actively rubbing against her legs) and they have other offers so we need to look for another house.

Unless, she leaves the question dangling, I might have the cats put down….?

The sheer amount of horror I felt at that question, I can scarcely describe. I know not everyone cares for cats, and there are quite a few that hate them. But these are my pets. I have raised them for over a decade—they are no kittens, but nor are they feeble and dying animals. They are sweet and gentle boys who spend the entirety of their day laying in warm spots and purring and fulfilling their sole purpose in life: to bring me joy.

And this horrid woman is standing in my bedroom suggesting that I have them killed because she, a stranger, doesn’t like them.


I usher her politely to the door as she continues her idiotic prattering, rattling off excuse after excuse why my nice family with perfect references and impeccable rent history is not a good fit for her rent house. With a mixture of fury and sadness, I shut the door on Mrs. A and text Michael to come home.

Michael calls Mrs. A who refuses to speak to him, just handing the phone promptly to Mr. B who said our landlord did not have kind things to say. Michael firmly but civilly tells him how disappointed we are in how this situation was handled, how they had gone back on their word to us after we agreed to their additional terms. Mr. B apologizes several times.

We contact our landlord who balks—he said they asked three questions.

Did we pay our rent on time?
Yes.

What about the pets?
I have them down as service animals.

Can they come take a look at the house we are in?
That would be up to Andie and Michael.

He talks with us for a while and then again with the couple, getting two different stories. He calls back to reiterate that we have been great tenants and that he said nothing to imply otherwise.

I am absolutely crushed. I feel like a fool. I should have told her it was presumptuous to show up at our house and to go away. I should have called her out on her rudeness.

Michael says the measure of our character is how we act when someone treats us unkindly. He wished them luck in all their future endeavors; I sent them a thank you card for their time. I also wrote this rather grumpy blog post, so I suppose Michael is made up of nicer stuff than I am.

They learned nothing from this, because they don’t see that they did anything wrong. I can’t change that. They have a right to do as they wish with their house. Had they politely called and said that they had reconsidered the cats and it was a no-go, we would have been disappointed but respected that. They could have told us they decided to go a different direction.

Instead, they ambushed me, pushed their way into my home while I was alone with my children. They lied, mislead, and told me to kill my cats, then let me know my family wasn’t good enough for their rent house.

Since she left, I have been cycling through emotions—disappointed, embarrassed, furious, depressed. I am so angry that she would think this was okay, that she had a right to act that way, and even more so that she likely thinks she did the right thing.

I know that God is gently tugging me back toward the path He has set for me; this was not a waypoint the Weardens needed. And I believe with all my heart that what He has planned is going to be so much more amazing than what we are leaving behind. I also recognize that this was a blessing, to see the sort of people these two were before we entered a legal rent agreement and were at their mercy. I shudder to think what liberties this woman would believe herself entitled to if we lived in a property she owned, if she would show this much presumption toward a perfect stranger.

In the end, I respect their right to do as they please with their house, and I understand that cats can be a threat to property in certain situations. Not every landlord wants to take on that responsibility.

I just wish they could have been a little kinder, that’s all.

--Andie

Attitude

Emerald’s favorite sentence is “I hate my life.” It is her go-to when we ask her to do something she doesn’t want to do, when she gets in trouble or when something happens that she perceives as “unfair” like bedtime or not having a cellphone, anything she asserts “everybody else at her school” doesn’t have to deal with. Most often, it is followed up with a declaration of how much she hates diabetes as it is the epicenter of all negativity in her life.

She says it so often over the last five years that it has almost lost all meaning.

I would like to think myself above an emotional response to such an outburst, but I have found that I most certainly am not. It could elicit any number of things, depending on my mood and what else is going on at the moment.

It might make me angry--angry that Emerald is not more appreciative, more grateful for the life we have provided for her. Angry that she would say something so inflammatory. Angry because she might possibly mean it.

It might make me sad because she has a right to hate her life. She didn’t make a decision to have this disease.

Michael said something that led me down the rabbit hole recently: What are the chances that we would have these kids with these conditions, with this frequency? It sparked my curiosity so I began to chase it down, looking at the statistics. 9.4% of the American population has diabetes; only 5 to 10% of those diagnosed have Type 1. About 0.24% of that population are under 20.  Less than 10% of those with the genetic marker for diabetes will actually develop it in their lifetime--risk factors include certain viral infections, living in colder and northern countries, immediate family history, being given cow’s milk too early, being of caucasian descent, and having other autoimmune diseases. It is more likely to affect white males than white females, and more likely to affect African or Asian females than white females. Just 6% of families that have one child diagnosed will have a second one develop diabetes.

Michael was right. Statistically speaking, Emerald was a long-shot to develop this and yet here we are--our number kept coming up. So a lot of the time, it makes me so very sad that she has to deal with this and that we have to deal with this, that there is no cure and this will be her life for as long as there is an Emerald.

I feel ashamed, too, that I can’t do better for her. For all I know, I am completely flubbing this whole deal up. Maybe she has a point. Maybe her life is just terrible and it’s my fault because I couldn’t provide more, be better, do better. I might expect too much of her, may be too strict. I didn’t expect to be the hard-ass parent; I hoped I’d be patient and understanding and kind like my mother and instead I’m a cranky goblin.

And let’s be honest, occasionally I feel slightly amused. What a drama queen.

It makes me wonder: is that how God feels when I complain about this life He has given to me?

When I grouch about diabetes, is He annoyed that I don’t appreciate how He has provided medicine and care so that we can keep the girls healthy and safe? Does He get frustrated that I don’t thank Him for watching over them and protecting them from the worst this disease has to offer?If I fuss about autism, is He sad that I’m focusing on the difficulties and not on what a sweet, intelligent, wonderful little boy Gabriel is?

Is God ashamed of my attitude toward all the blessings He has given me?

Emerald has inherited my sass and penchant for hyperbole; saying she hates her life is a habit that will prove hard to break. I cannot change her attitude—she is entitled to feel unhappy at her situation, because being unhappy is how we improve. Our emotions are a call to action to remind us to change what we can and to somehow find peace with what we cannot. I would like to teach her that a bad moment does not make a bad day, a bad day doesn’t make a bad life. It is a good reminder for me, too.

Maybe Emerald is just entering a new stage in her life, and I’m reading too much into it, taking it too personally. If that’s the case, there’s a storm a’comin.

Huh. Why don’t I feel any better?

Medicated

I couldn’t think, couldn’t sing, couldn’t write.

It had stolen my ability to be Andie.

I have suffered from depression in one form or another for over ten years. First arriving on the scene as postpartum with the arrival of my strawberried Emerald, it took root in our difficult life circumstances, fed on my up-and-down hormones from four pregnancies, and flourished in autism and diabetes.


With tiny baby Emerald, I should have been suspicious when I told Michael, “I’ve read that some mothers don’t bond with their babies right away, so it’s okay if I don’t love it yet,” by his response:


“She’s already here; can you not call her ‘it’?”


From the thickets, it’s kind of hard to see though. Your body is telling you that you indeed feel this way so obviously you are supposed to feel this way—if it wasn’t a logical reaction, you wouldn’t be having it. It isn’t until you separate yourself through the lens of someone else’s perspective that you start to realize the script is all wrong—this isn’t how your story is supposed to play out.

The analogy that is most often referenced is getting glasses for the first time: you didn’t realize how blurry everything was until it came into focus.


After Benjamin was born, I was sitting at my general practitioner’s, Dr Andy, for my 25 year annual physical. It was my first appointment with him; I was referred by my obstetrician because they were golfing buddies. Michael wanted me to bring up my mood swings in response to an incident we had earlier in the week: We were running behind getting ready to go to church, so I got upset and kicked the high chair across the room. Which apparently was the wrong reaction.


As I sat there, feeling ridiculous because I had a couple of bad days and Dr Google over here was diagnosing me with depression, and the doctor is going to think I’m an idiot, why am I even here, this is stupid, stupid. Tears are in my eyes and my throat is sore because I am not going to cry again and make a fool of myself, and I’m just so, so angry and I don’t know why. I am absolutely furious, fuming, sitting there on the examination table all by myself and there is no reason.


This isn’t what depression was advertised as. You envision sadness, not anger. Thoughts of suicide. I didn’t want to kill myself. That would have taken way more energy than I had available, and I couldn’t see hurting myself. At night when I closed my eyes for the briefest moment, I would wish I wouldn’t wake up. I didn’t want to die, but living was so hard, and death sounded so...peaceful.

Dr Andy explained that depression wasn’t just sadness; it was all the emotions, right under the skin, ready to fly out before we could stop them.

He prescribed Celexa (citalopram) for depression, Elavil (amitriptyline) for anxiety.

The first week, I was euphoric. Not because the medicine had such a profound impact on me, but because I was so optimistic—we had identified the problem and there was a solution! I wasn’t a cold, hateful mother; it was a biological issue. The medicine was going to help, I could feel it in my bones.

The second and third week felt like I had been cruising down the highway going 80 miles per hour and someone had thrown the parking brake. Instead of my emotions feeling right under my skin, it felt like I carried them overflowing in my arms—in any given situation, I had to frantically sort through and figure out what exactly I was supposed to be feeling, experiencing every emotion at once in a confused and upsetting state.

After about a month and a half, everything evened out and we got on kind of a system. Weekdays, I’d put Gabe on the bus to PPCD, drop Emerald off at preschool, and go home to put baby Benjamin down for nap. While he was sleeping, I would take my two little “happy” pills and hope nobody needed me for an hour because I would be too dizzy to drive. I’d lay on the couch feeling like I was rolling somersaults; then it would pass and the rest of the day would be pleasantly tepid.

It felt like the colors had been scaled down on my life. I was no longer seeing red furious or blue sadness, but I wasn’t laughing and joyous either.

After hurting for so long, the mediocrity of okay days was paradise. 

I stayed on the two meds for a couple of years until I moved to Abilene and got a new doctor, one that reacted with horror when he saw the amount of serotonin-affecting medicine I was on. He had me drop the Elavil and cut my Celexa dose by half.

The new regimen lasted about a year. During that time, I slept whenever I could get away with it. I was a perfectly pleasant (for the most part) individual, perpetually living between nap times. What drew me up short, what made me question the medicine I was on, was when someone asked me what I did for fun and I realized:

I can’t name one thing I enjoy.

I’m a person of superlatives—I have a favorite in every category, just go on and ask me. But during that time, I couldn’t think of anything that brought me pleasure. It felt like I was doing things because I had done them before, things like watching cooking shows and reading, but there was no satisfaction, no emotional connection, just an automated response.

With depression, my chest ached remembering things I had once enjoyed, longing to recapture that experience. I’d get a plate of TGIF hot wings—my favorite, with the crispy outside and the buttery, spicy sauce—and will it to taste as good as I remembered, but it never did. I’d get dressed up and go out on dates but no matter how much I put on my “happy” costume, I couldn’t make my insides reflect out.

The treatment, the antidepressant, though...it felt like the candle inside me had been blown out.

If my favorite show was on, I wouldn’t look up once until the credits were rolling and realize I hadn’t heard a word. I would sit down my favorite meal and taste nothing before the food was gone.

My mind felt like a yawning, wind-filled cavern where placidity reigned supreme. I couldn’t think. Couldn’t sing. Couldn’t write.

Antidepressants had stolen my ability to be Andie. 

For a brief while, I switched to Wellbutrin to see if it was the specific med that was causing the issue, but it was an emotional cataclysm and I couldn’t finish the initial 6 week course. I talked to my doctor again, noting that my youngest child was then four years old, so the underlying issue—postpartum depression—had likely passed its course. I had ridden the wave of celexa through the last storm, but now it was time for the clouds to part and let us evaluate what was left to work with.

It was hard to wean me off because I was on such a low dose to begin with, but gradually I got to the point that my system was clearing out. There was a significant period of adjustment, a time in which Michael and my mother asked repeatedly if I thought this was a wise choice (with the heavy implication that they disagreed with this course of action). To ease the transition, I started going to counseling to learn coping mechanisms.

Three main strategies emerged successfully for me:

The first was my lists. I made a list of the minimum I was allowed to get done each day. Eat healthy, Drink Water, Do something enjoyable. If I accomplished nothing else that day, then I could say I tried to take care of myself, which was a start.

The second was taking time for myself. Twice a day—once before Michael left for work and the second after dinner—I would go for a run. It was 90 plus degree weather and I loved it because I could blast my heavy metal music and not talk to anyone or socialize with anyone for a half an hour or more. It was just me.


The last was my “Thought Vomit” journal.

My counselor had recommended a mindfulness program. He said thoughts are like leaves in the stream; we can watch them pass by; we acknowledge they are there, we hear them, and we let them pass. If we don’t hear the thoughts, they’ll just keep repeating until we do, so acknowledge them.

My homework every week was to write down what I was thinking for 15 minutes every day. Just write. It’s a different process to write than to speak or to think; it feels so much more actionable. I would find a spot, usually not long before bed, and I would write down everything I was thinking—every emotion I was feeling, every song I had stuck in my head, every complaint and every praise and everything, like a grand purge until there was nothing left.

Emptiness not like the one caused by Celexa, which felt like a desert with friends hiding where I could not see them, but an oasis where nothing was happening, no one was moving, and I could just be at peace.

I spent a year getting reacquainted with myself, remembering what brought me joy and satisfaction outside of being a wife and a mother. Lemonheads, Tim Burton movies, the dark and macabre, but also sunlight and dancing and Jude Deveraux. I liked things that were powerful evocators, things that demanded a reaction. Joy was something I had missed for so long and wanted to spend as much time in as possible, but I rediscovered things I did not like as well: loud noises, big crowds, being late, messes. It reminded me of what it took to take care of myself.

Toward the end of my pregnancy with Tula, the depression took hold again. I was snapping at the kids, taking four baths a day, just waiting. Waiting to feel better. Waiting for happiness to come back. Three weeks postpartum, having cried every day because of change in routine or unexpected events or delays, I started on a low dose of Zoloft (Setraline). I was dizzy at first, but then it just ran quietly in the background. It felt like it was gently nudging me away from the darker thoughts, away from spiraling into a panic attacks. It was a little platform that held my emotions up until I could take over again on my own.

Sometimes I felt weak or foolish for needing medicine, for not being able to handle it. I felt like I was supposed to be coping better.

When I was feeling kinder, I knew that just as Gabriel took medicine to control the symptoms of his autism and Emerald took insulin to manage her diabetes, I needed support, too. It wasn’t a matter of my ability, but a physiological disruption that had to be corrected. Taking action was coping. 

I still have bad days. Thursday was a bad day. Gabriel ruined my coffee, drank the back-up; Emerald and Benjamin would not stop fighting and I burned only dinner to complete inedibility. We were supposed to play a game as a family but my dour mood had soured it for everybody. That day, I didn’t cope so well. Spending that time learning how to care for myself, satiate my emotional needs, taught me though: it is okay to have a bad day, because tomorrow will be better.

I know how to make it better.

—Andie

The Price of Being Different

I hate spending money.

It is the possibility I am reluctant to part with. In my pocket, $20 could be a pack of diapers or a half a tank of gas or a couple of groceries. Once you spend it, all the possibility dissipates. Since I was little, I have preferred saving to preserve option to spending. Spending feels so final, so...decisive.


The topic of money is vulgar to me. Don’t like to talk about it, don’t like to think about it. Do not care for the fact that it is an unavoidable, definitively adult undertaking. It is kind of like toilet paper to me--everybody uses it, each in their own way, but please let’s not discuss the particulars, shall we?


Money is distasteful. On “Cutthroat Kitchen” when the contestants are first handed the cash, what do they always do? They raise it to their face and inhale that horrid smell. The smell of books, new or old, now that is intoxicating--it is the smell of adventure, prose, romance. The smell of money is sweat and butts and squandered potential.


So, if I dislike it so much, why talk about it?


It is one of the things people are most curious about. Probably because it is a borderline taboo subject--it would be impolite to inquire about someone else’s finances, in any scenario. We know the statistics though. Raising a child with special needs or chronic medical concerns is hair-raisingly expensive and we have three. I have panic attacks when confronted with it because need is where possibility and decision collide--inaction is rarely an option.


We have been incredibly blessed. At exactly the right time, the Lord has provided for us, through the kindness of others or an open door, talking to the right person at the right time that points us in the right direction. He has guided us through.


It is a substantial consideration on our part, whether I like it or not, a determining factor in a lot of our decisions. I figured I would offer you a glimpse of the inner workings here, some of the elements at play.


We are a single income family. I have been unable to work, largely due to Gabriel but also because of Benjamin and more recently, Tula. Daycare runs about $35 a day for a decent one, but in this town, the waiting lists are substantial for any reputable child care in town. It amounts to $500-$600 a month, or the bulk of anything I would be able to bring home. Jobs that have the same hours as school can be obtained, but I have to be available to pick up kids afterward or pay for after school care, which would deplete the rest of whatever I could earn. There are no after school programs that accept children with disabilities; there are no after school programs that can manage the girls’ diabetes.








If I could work, Emerald and Tula have to have doctor’s visits every three months; Gabriel has to have doctor’s visits every three months in Lubbock. Which accounts for at least three missed days of work--one to travel to Lubbock, one of the doctor’s appointment, one for the girls if I take them both at the same time--every three months. Those are specialists, they still have to see their regular pediatrician, and like any child they will get sick occasionally.


Gabriel’s school calls an average of two to three times a week for me to come up there. Children with autism often present with chronic gastrointestinal issues and Gabe is not exempt, so often he has had a bad poop and I have to bring him home to shower and return--sometimes it is a blowout, sometimes he gets into his diaper and smears it. Disgusting, but it is something we have to deal with. Other reasons they call are because he is agitated and not calming himself down, he is being aggressive, he is having issues with his clothes or shoes and needs me to deliver new ones, he is falling asleep and cannot keep himself awake, or because he is “just not acting like himself”. Between me and Michael, my hours off are quantifiably worth less than his, so I end up taking off again and again.


Let’s establish--that is just out of the ordinary stuff, not accounting for school trips or class parties and other parental involvement activities, most of which I am still unable to attend because siblings are not allowed (after all, I am of limited help when my arms and attention are full of baby).

We’ll do Diabetes first because I am holding Tula so it makes logical sense to me.


Insurance will cover 100 test strips--the little strips that we use to monitor the girls’ blood glucose levels--a month. Emerald has to test her sugar a minimum of four times a day, six on PE days, for a total of around 140 test strips used a month. Tula has to test her sugar around 6 times a day, for a total of 180. That is if we never get an error reading or they never have high or low blood sugar and never get sick--those all call for additional strips. The test strips we buy--the cheapest on the market--are $0.18 each, for about $40 out of pocket a month after insurance covers $60. Glucometer, the meter that reads the blood sugar, can vary. The ones we use at home the pharmacy actually gave us for free because insurance won’t cover those particular test strips (Glucocard). Insurance prefers the Tru Metrix test strips and meter, so we have two meters for each of the girls at home--one that uses the test strips insurance covers and one that uses the less expensive test strips we have to pay for out of pocket.


To complicate matters, Emerald actually has a THIRD glucometer at school--ReliOn Prime--that we provide test strips for. It is a cheap one, only costing $15 so it can be replaced as needs be.


Tula also has a third monitor, but that one is a combination Ketone and Glucose monitor that we only use for the former purpose. Whenever the girls’ blood sugar is over 300 or whenever they are getting sick, we have to check for ketones in their blood so they do not go back into ketoacidosis. Emerald has strips that you check her urine with; Tula has one that checks her blood. Neither of those are covered by insurance. Tula’s NovaMax Test Strips are around $2 a piece, but will last a few weeks because she doesn’t go high very often. Emerald’s are considerably cheaper at about $0.15 each, but she has to be tested more frequently. Combined, it is about $37 a month.


Lancets are cheap--we use them to poke fingers and toes to draw little bits of blood for testing blood sugar. They run about like $5 for a box, but insurance covers those and they last forever. Alcohol swabs run out quickly and are not covered, $2 for 100 for a total of $8 a month. We use those to clean before we prick or poke and wipe off the top of the insulin. Diabetes logbooks were $5 each and last the whole year. Emergency sugar supplies are like packets of sugar or honey that we have leftover if we eat out, but we could also put dum dums in there. Negligible stuff. Pen needles are the mini needles we put on insulin pens; they are $9 a box of 50 generic. We have to buy four of those a month--insurance covers $36, we cover $36.


Syringes, which we have to use for Teeny Tula’s half dosages, cost $30 (covered) a month.


Insulin gets tricky. Medicinal insulin has been around since the 1900s, so you’d think it would cost less. Generic will actually raise your insulin resistence, meaning you will need more and more over time. We invest in the better stuff. Both girls have Lantus Solostar pens, which are $280 a box. A box has six pens, each with 100 units of insulin. One box will last Emerald a little over two months. Tula has a vial of 100 units that costs $190; it will last her about a month.


Insulin is only good out of the fridge or open for a month so we have to toss it after that or it can jack with their sugars.








That is their long acting “basal” insulin. The also have bolus insulin--Emerald has Novalog Flexpens that are $600 for a box of six pens. Those will last us about a month because she has to take it more frequently, after each meal and for correction. Tula is on Humalog pen that is about $550, but because she eats so very little carbs and only gets the tiniest little doses, it will last her a while.


They both have to have the glucagon emergency kit in case they crash. Most families do not have to use it, but you always have to have it on hand and replace it once a year. It is sort of like an epipen. They are $300 apiece. Zofran is a medicine that will prevent them from vomitting when they are sick because it could cause them to crash which would be dangerous; we get a supply of that a year for $250.


So just for medicine and supplies, most of which is covered (thankfully) under our insurance, runs us about $24,000 a year for both girls. We are personally responsible for about $1500 of that, if insurance is playing nicely and there are no issues.


Emerald’s insurance lapsed last year so we had to pay for it out of pocket for a while; that was kind of killer. I thanked God every day that we were able to do that.


Visits to the endocrinologist happens for each of them every three months; we have no copay, but the visit would be around $120 because they do discounts if you pay up front. That adds up to $960 a year for both. Each time they go, they also have to run full blood work including a1c, totalling around $1000 or $8000 for the year. We meet with the registered dietitian at each visit ($100 an hour, times two for each girl, times four visits a year for a total of $800 a year). If there are no hospitalizations and we keep up with our routine office visits, that is just shy of $10,000 a year.


I don’t want to get into hospitalizations because YIKES and because I am sincerely hoping none of that happens. Normally, we will make an emergency room run once a year because we can’t get things under control and they need fluids or if we run out of insulin before insurance is willing to cover it again. Depending on what needs to be done, an ER visit will set us back about $1200. I also won’t go into things we are not currently doing, like special camps or insulin pumps or continuous glucose monitors because while I could look up the information on that, it would be meaningless--they do not currently affect us.


Whew. That was a bit of an odyssey. Catching my breath before I move on to Autism.


Alright, took a quick Facebook break and now I am back.


Autism Speaks estimates it takes around $60,000 a year to raise a child with autism; $90,000 if the individual also has an intellectual disability. That is roughly four times higher than the cost of raising a neurotypical child.

I did the math after a friend of friend asked me. All things considered, Gabriel costs $46,000 a year more than Benjamin. That is counting incontinent supplies, medication, specialists, therapists, personal care services. Breakdown is something like this:


-Personal Care Assistant: $1000/month ($12,000/year)


-Incontinent Supplies (diapers, wipes, changing pads): 200/month (2400/year)


-Medication (clonidine, risperidone, hydroxyzine): 450/month (5400/year)


-Therapy (speech, occupational, physical): $28,800/year*

*This one actually went down substantially because we cut back—insurance doesn’t cover Applied Behavior Analysis so we had to pay out of pocket for each session; got too costly and we had to quit. We also scaled back, dropped PT at home, decreased at PT/OT school so that he could have a little break. It was getting to be a lot.


-iPad maintenance and repair: $130/few times a year. Because it’s his communication device, we have kept it available, but that means it has had a few accidents. He ruins cases, takes it into the bath with him, leaves it outside, or gets mad and cracks the screen. Currently, he’s taking a short break from screens because he has annoyed us too greatly by being uncareful. It also covers new chargers.


-Specialists: $250/visit($1000/year) he see a developmental pediatrician, which we have to travel to Lubbock for, so tack on another $40 in gas.


There are other costs like locks for the fridge and pantry, bolts for the front door, back door, and our bedroom door. We get items to work with him between therapy—trampoline, swing set, weighted blanket, compression garments, sensory brushes, hammock, exercise ball, privacy pop, noise canceling headphones. Those vary in price from $10 to a few hundred. We were doing horse therapy for a while, but have taken a break. That was at no cost.


All of that adds up to...right under $50,000 annually for Gabe, before calculating for lost wages. As he gets older, the price will increase exponentially to include a nurse or residential living (though we hope he wants to stay with us), transportation, and other expenses.


I try not to think about all of this, but when it comes together…

Yuck. No wonder I don’t like thinking about money.


When I do think about it...it’s a tangible, definable way to express how God has cared for us. A lot of families of special kids go bankrupt trying to handle it all; though we rarely have excess, we always have what we need when we need it. I think that is such a beautiful thing. I am very thankful for it, because it once again opens my life up to possibility.





—Andie

The Way I See You

“People think pleasing God is all God care about. But any fool living in the world can see it always trying to please us back.”― Alice Walker, The Color Purple

My Benjifriend is down sick today, so I had to stay home with him and miss out on church. As Michael can tell you, I took this news rather...immaturely because I didn’t want to miss service. I like going to church. It is a happy place for me, full of good things and good people. People that do not want to have themselves or their families exposed to my wee babby’s biological warfare. So, I will sequester myself this Sunday feeding him the medicines of my youth--7-up, reruns of Price is Right, and saltines--and bring him back when he is safe to be around other people, and I will use this quiet opportunity to listen to my Ludovico Einaudi and write in peace. (If you want to hear it as I wrote it, listen to "I Giorni"--https://www.youtube.com/watch?v=Uffjii1hXzU.)

I am an optimist by nature. I want and choose to see the beauty and goodness in the world; it feeds the hope that lives inside me, the whisper that says, “Wait. The best is yet to come.”

When I was younger and my faith was the sum total of all my parts (a place that has slipped through my fingers to make room for life; a place I have been trying to get back to), my heart’s desire was to see as He sees, to view the world not through the distorted vision of opinion but in truth and reality because it was as He made it. As many that have gone before me, I found the most pure, tangible connection through nature. I lay in the grass, feeling the heat the sun had lent the ground seep into my cold body. I imagined it was healing me, dragging doubts and fears and darkness down and dispersing it far below where I didn’t have to feel it anymore. At just the right time, when my skin was glowing golden from the warmth of the day, a breeze would stir and carry me away, away with the leaves and the caterpillars on their silken strings and the motes of dust that made the air sparkle like glitter.

God intended so much more than this for us. We know that; we can feel it, read it, experience the separation that sin caused. It is easy to forget that He meant more for nature, too.

He made this world to walk in with us. He made it and named it good because it pleased Him. It was a paradise He wanted to share. I can envision how eagerly He would anticipate the delight on our face when we saw for the first time the snow falling on the mountains, a hummingbird sipping from honeysuckle, the ocean washing up on the shore. In His garden, I could have bear friends named Otso and Mischa that I could hug and feed sweet potatoes and nap with in the sun.

I would have really liked that.

The Bible says that Adam and Eve disobeyed and ate the fruit, setting off the chain of events that has somehow arrived in a place where Andie does not get her potato-eating pet bears in the sun. Lady days suck and we have to toil and work and things are hard and they suck and what could there possibly be to be hopeful for?

To me, salvation is a not a story that is finished yet. Our brains hate things unfinished, which is why it wakes you up in the middle of the night repeating “This is the Song that Doesn’t End” because why doesn’t it end?! Brain likes to be able to close the box and say, “this is complete”--this story is done, the task is finished, the song is over. It bothers us endlessly to leave things open because it is still waiting, waiting to be attended to. It would be so much more comfortable for us if the Bible was self-contained, starting with “in the beginning…” and ended with “Amen”. Close the book and put it on the shelf; it is done. It relieves us of the burden of becoming.

It is so exhausting to be unfinished.

If that was all there was, the stories related to us of God working in the men and women of the Old Testament to culminate in the birth, life, and death of Jesus Christ, everything since is just an reverberation of that defining moment. We are living in the aftershocks of God’s dramatic crescendo, and thus relieved of being or becoming anything more than what we are. Why bother; Jesus said himself, “it is finished” (John 19:30). Show’s over, time to go home. Everything since is inconsequential, our lives and our actions amount to nothing, and nothing matters.

Nature shows us that it’s not over. He still cares; He’s still trying—He is still making something out of nothing, propelling us toward something more. The story didn’t end at the cross, but started there and continues on through today and into infinite tomorrows. If Jesus was sent to bring us back, then we still matter enough to try for.

So many of our opinions of ourselves can be so brutal. How is it so instinctual to tear ourselves down? When the voice in our head is dogged and determinedly repeating how we are not good enough, not strong enough, not smart enough, not brave enough. We just aren’t enough.

The part born inside is there to remind us that we weren’t meant to walk alone. God always meant to be right there beside us. He meant friends and family to love and surround us, to encourage and support one another. Our souls remember and remind us—

We weren’t meant to walk alone.

How joyous it is that partnership! How wonderful it is that He has never left us, will never leave us! I have taken great comfort in that.

As my relationship with God grew, it stretched to encompass humanity in my desire to see as He sees. We are separate and apart from creation, made special by His design, but we are also part of it. We are exhibits of His glory, too. It is difficult to see His face reflected in the actions of man, but I had to remember—in the Bible, we saw God’s chosen people turn away again and again. It was in the individual stories where we saw the most change, God working directly on hearts to better the situation for the group. It was through David, through Rahab, through Moses and Elijah and Deborah and Esther, that God led and delivered His people, and it is through those stories that we see His intent for our lives.

God loves us so much it hurts. I truly believe that. He’s so proud of us. I feel like if He had a wallet, He’d have our picture in it and show it to everybody at the grocery store. “See that Andie? She’s got FOUR kids now, can you believe it?” He isn’t sitting up there grouching about how little we visit or fuming that we messed up again. He’s hoping I got the sunshine He sent today, that it made me think of Him and brought a little smile to my face because He loves my smile.

God’s reality is that He made all of these people and He loves them, so He wants us to love them, too. I mean, He may have mentioned once or twice. That attitude  is what I strive hard for every day.

It’s hard though. Sometimes my emotional, opinionated side flares up and clouds my view of a person, leading to arguments with the Voice in my head I call God that go like this:

I don’t like them.

I made them.

Well, you did a bad job. I hate them.

I love them.

...okay, fine. I don’t hate them. But they need to be smacked.

About as much as you need to be smacked?

….that was uncalled for -generic grumbling-

Since first joining social media, I have wanted to make a post encouraging us all to share our genuine opinions of one another. In the idealized, romanticized version in my head, it would a platform for people to share how much they admired other people, how they wanted to know them better or had little crushes on them; fun things that show you how others viewed you.

My hesitancy was born in that more realistic voice in the back of my head, the one that has seen all the “Roast Me” posts on Reddit.

Do not ask for honesty if you are not ready and willing to hear the ugly, untarnished truth. My hope would be that people recognize that we all have so many negative thoughts about ourselves that we don’t need anyone to add to that. As I cannot control the direction the post will take (likely it will die on arrival; most posts that require interaction are bypassed all together), let’s not take any unnecessary chances, shall we? All I have power over is my own opinions.

Through this screen that I have carefully constructed, using what I believe of God based on my personal relationship with Him, I see you.

To me, you are the most interesting person. I love to hear stories an out your life, your family, what you wanted to be when you grew up and what your favorite things are and why you think and feel the way you do. I want to see who you are, the things that drive you, inspire you. I could listen to you all day.

I’ve seen you struggle, and my heart ached for you—I see how hard you are trying. I’m so impressed with the strength and dignity you have displayed, handling what life has thrown at you. You are so tough, so strong, so brave. I don’t have to worry about you because I know that you can overcome any obstacle, but I am going to be here to help you in any way that I can because we are stronger together.

I have prayed for you, through sickness and hard times, but in the good times, too. I pray that you feel safe and loved and happy, that you see God working in your life and it brings a smile to your face. I pray that you have everything you need, and some things you want as well. My heart is so filled with hope for you, because I know:

The best is yet to come.

—Andie