Big Country Walk

This Saturday, I see the fruition of months of hard work--the Big Country Walk for Autism.

When I moved to Abilene in the summer of 2014 (can’t believe it has been nearly two years already!), my sister’s husband Jud suggested a friend to me, saying she was a part of an autism group here in town.

Back in Lubbock, I had this...geez, for some reason I am getting emotional about this. Sorry. I had this amazing group of friends, a mothers of special needs children group from my church. We had started going to Monterey Church of Christ because of their special needs ministry. Once a month we would get together to have dinner or go to concerts, just talk and socialize, support one another. I miss them a lot, and it was hard to leave because I had found this place where I belonged.

Jud is invaluable because no matter what you need, he has a contact and can help you find it. He is basically an information broker, the guard at the gate of cities in Cyrodiil that can point you toward guilds and quests (video game reference, don’t worry about it). He sent me a friend suggestion of Stephanie, who added me and invited me to the support group at a coffee shop toward the end of the month.

Sign of our times that many important life moments happened in a coffee shop for me.

That meeting was for a non-profit organization called REACH for a Difference. Over the next couple of years, I got progressively more involved with the group, attending meetings and volunteering to help as time would allow.

I am pretty passionate about community service. I don’t have a lot to offer--we don’t have an disposable income, I am not particularly skilled in any usable area, and time is a precious commodity I rarely find myself in excess of. What I do have is the heart for service, my hands to give. Michael worries I will overextend myself, take on too much. A valid concern admittedly, but I don’t want to look back on my life as a litany of self-celebration and selfishness.

REACH was founded in 2009 with a mission statement of bringing resources, education, advocacy, community, and hope to families and individuals affected by autism in Abilene and surrounding areas. Since they were founded, they have been responsible for community events such as Sensory Santa and Autism Restaurant Night Out, as well as bringing Caroline’s Carts to Abilene stores.

Caroline’s carts are special grocery buggies that hold children with disabilities; it comes with a five point harness, brakes, and split hand bar. Grocery shopping can be surprisingly difficult. Gabriel has gotten stuck in the seat portion of the cart before; I had to have the manager of Walgreens help me remove him, which was a decidedly unfun experience. I could place him in the bucket portion, where he can toss out the things he doesn’t think I should get or take bites of he wants with much more ease (-sigh-). This cart makes shopping considerably easier, and taking Gabriel to the store more of a reality.

Sensory Santa was a wonderful, wonderful event that I wish I had written a blog post about. Michael was Santa, and he was so good with the kids. There was a trolley ride to this gorgeous outdoor venue strung with lights, and a little platform that held Santa. The kids could come up to him as they were comfortable, sit with him or next to him on a bench. A professional photographer took the most poignant candid pictures.

I will have to make sure this year to blog about it, though I am not sure I can capture the magic. This coming from a mother that could never do meet-Santa before with her children because Gabriel would not be able to tolerate the sensations of it all.

At the end of the year, REACH voted me on to join the Board of Directors.

In previous years, AutismSpeaks hosted Walk Now in Abilene as a fundraiser. There was a committee here that handled the planning and organization, and AutismSpeaks would pay for certain aspects and show up the day for the event from wherever they are nationally located. There seems to be a divide--some love AutismSpeaks for the work they have done raising awareness, their research, and the resources they provide parents. Others dislike the language they use and their efforts to find a cure, saying that autism doesn’t need a cure because it is not a disease.

Regardless of how anyone felt about AutismSpeaks, they pulled out of our region this year. Abilene is a small community and was not bringing in quite the funds of larger areas. I believe they are also making a push toward digital walks, where you use pedometers to track distance and get sponsors to donate per mileage, as opposed to an actual formal event.

REACH was approached by the committee that had planned the walk in the past and asked if we would like to host it this year.

It is sort of an enormous undertaking, and we were given around five months in which to do it. Of course, they didn’t just dump all of it on us and ditch--we retained the committee which had members representing (I believe) 15 different organizations from Abilene.

I love the whole concept of the walk because it is local money, local agencies, helping local families affected by autism--a community coming together for a cause. Before when AutismSpeaks hosted the event, they took the money donated and it went into the national organization’s funding. None of it came back to specifically help anyone here.

Their goals are future-oriented; research, causation, cures. Speaking as a mother with a child on the spectrum...that isn’t what I really want or need right now. Noble goals sure, but that is not going to help me or my family survive another day. Maybe my views are too short sighted, but I think that is why we need both groups--one to help in the now, and one to look out for the future. REACH is the now.

With REACH at the helm, 98% of the proceeds will be utilized to help families and individuals right here in the Big Country area.

We call it the Big Country Walk for Autism because it isn’t just going to Abilene--the Big Country comprises of 19 counties in the surrounding area.

The remaining 2% will go to the national Organization for Autism Research. They are so great; they send free literature to families and schools. You should check them out:

http://www.researchautism.org/

I got involved with the walk committee I guess in January. That sounds about right. I jumped on as registration coordinator--I am in charge of writing up forms and overseeing the registration process, from participant’s releases to team formation, things of that nature. It just felt like a good fit for me. I have also taken on a secondary role as volunteer coordinator until the day of the walk when I will hand it off to someone else. Sara (the president of REACH, and my very dear friend) would argue this, but I best describe myself as the grunt, the go-to. Anything really that needs to be done, whether it is writing “I made a difference” on hundreds of wristbands or email correspondence with every single person in Abilene, I am your girl.

That is our slogan for the walk this year, by the way. “I made a difference.” It is written on the back of our t-shirts and on the wristbands we wear because every single person that participates is making a difference. The money raised might not be much on a national scale, but here in our small community, it can do so much good, so much more than what AutismSpeaks can make of it.

I polled the support group of families affected by ASD, as well as a separate survey for committee members, and a third at a roundtable discussion. We then took the composite scores of the three surveys and that is how we decided where funds raised from the walk would be allocated.

It will go toward helping pay for therapies that insurance doesn’t cover. Go into classrooms to pay for resources the school district can’t afford. To events that bring the community and autistic individuals together in a common, safe place. Respite for overworked, unpaid, exhausted caregivers. It will go to the areas that families--parents, siblings, grandparents, guardians, individuals--are hurting the most, and need relief.

The Walk is this Saturday; registration starts at 9 am, the walk from 10 am to 1 pm. There will be resource vendors with child-friendly activities at every table, emergency personnel and a “boo-boo station”, many food trucks, the Wylie Belles presentation, ROTC presentation of arms, costumed characters (including Gabriel’s minion friend up there).

It is more than just a fundraising event, however.

When your baby is little and you are a stay-at-home mom...no one tells you how crushingly isolating it is. How you will never be alone, but never be more lonely; how you will wish the mailman will stay a few extra minutes to chat, or you'll consider letting the travelling salesman in so you can have adult conversation, just for a little while.

When I think of how to describe what it is like to have an autistic child, that is what I think of. It is such a solitary journey. So many days, you feel like you are the only person in the world that is going through this.

This walk is about coming out and saying: You are not alone. I am here with you. I will stand by you; I will walk with you.

You don’t have to go on this journey alone.

--Andie

The Birds and the Bees and the Big Talk

I feel it coming. This sixth sense, niggling sensation of your own impending doom--

Emerald is going to ask about sex soon.

Honestly, I am surprised it has not happened already. She is eight years old, a precocious child if ever there was one. Many times, she has flirted around the topic, dancing dangerously close to the flame. I dole out partial answers, addressing the specific questions she asks.

She knows that babies grow in a special organ called the mother’s womb. She is aware that childbirth hurts, though she isn’t sure why.

That specific exchange, which happened shortly after my niece Clara was born, went something like this--

Emerald: Mom, why does having a baby hurt?

Me: Well, where on a woman’s body is big enough to get Clara out of without being uncomfortable?

She knows there is a “magic shot” you get in your back that makes having a baby hurt less, and that Mommy had c-sections, meaning they cut the babies out. (Prompting her to ask if they used a chainsaw.) She is actually pretty clear on what menstruation is, the function and reality of it. I have covered cramps and lady products and all that joy.

When I was younger, my older sister got her period; I was so uninformed that I thought Amber was sick/dying and that I could catch it. Not exactly the experience I was wanting for my daughter.

I’m not really the “we’ll cross that river when we come to it” type. Michael is precisely that way; he thinks I am borrowing trouble for tomorrow when we have plenty enough trouble for today. It is just such an awful feeling to be unprepared. Worse yet? To be caught off guard and miss the moment all together.

Good or bad, I shoot fairly straight with her. It started when Emerald, while bathing with her younger brother, asked what Gabriel “sat in”. Had we discussed it, Michael and I might have agreed on a nice, vague euphemism. Startled, I replied, “It’s his penis”. She nodded and that was the end of it.

There have been some miscommunications at times. Benjamin came squalling in the room crying that Emerald told him, “When you are five, they take you to the hospital; they give you diabetes and cut off your penis, and then you’re a girl.”, which did NOT sound like something Ben wanted to have happen.

(Note from the author: While traditionally I am pretty much shameless, even I am having the good grace to feel uncomfortable writing this with VeggieTales Silly Songs playing in the background.)

There is such a fine line between providing adequate, appropriate information and revealing too much. Most parents are so uncomfortable talking to their kids about sex and love and relationships. Part of me secretly hopes Emerald becomes the first Church of Christ nun so that I don’t ever have to worry about it or think about it. Of course, that is never going to happen--there is not enough luck in the world. (Kidding.)

She still needs to be informed, though. There is so much misinformation out there; the thought of her being educated in the more delicate matters on the internet is just horrifying to me.

\

(This, utterly untrue picture for instance. Sex can be bumbling, awkward, messy, and straight-up unenjoyable under the exact right--or wrong--circumstances. And I have had some truly awful pizza.)

What do I tell her?

Mechanics aside, how do you teach her to protect her heart? I have made it more difficult on myself because while teaching her the consequences of premarital sex, I have to carefully skirt the issue that she herself was a consequence.

She is and always has been such an incredible blessing in our lives, and we thank God everyday for her. But...it was a lot harder on us because we didn’t wait. We struggled financially for years, trying to afford the cost of a child while we were still in school. When we had her, we were so young and completely unprepared for the realities of having a child, beyond our own ignorance on parenting.

I wish I had so much more time with Michael alone before I had to share him. He is my favorite person, someone I genuinely enjoy being around. We have so much fun together, we make each other so happy, but the vast majority of our relationship has been spent sharing our spouse with children (so many children). I wanted more time for it just to be us.  

I am also not ignorant of the fact that we kind of lucked out.

Think about how many couples you know that got pregnant before they were married. The ones that I know of...most didn’t last. Having to deal with all of that hardship while the kids were little while dealing with a dissolving relationship sounds devastating. I could straight up not have done any of this without Michael; there is no part of this that would have been improved by he and I fighting, or not being together.

I’d like to think that we were terribly insightful and clever for having chosen one another, but the fact of the matter is, we just got lucky. (Pun not intended; get your mind out of the gutter.) It could have so easily gone the other way, and we would have been left with a truncated relationship and broken hearts.

With all my heart, I believe in God’s timing. Or, at least that God can work good of any situation. Maybe it is a combination of both that was at work here. Either way--with my considerable reproductive health and gestational problems--had we waited until we were older, there would very likely be no Benjamin.

Yeah, Michael and I have had it tough, but I would like to believe it has made us stronger. We have had to rely so heavily on God throughout our whole marriage, and He has  been good to us.

That doesn't seem like something Emerald needs to know right now, at any rate.

Do I tell her about the heartbreak of failed relationships? Are there words I could say that could save her from that pain? If someone had told me, would it have prevented my own mistakes?

Or are you supposed to let them just live their lives and figure it out for themselves?

On my mind is how I teach her about self-worth, separate from the attention of lovers, apart from physical contact. I know so many people that judge their value by who loves them, desires them. She cannot grow up thinking that she is the sum of her attractiveness or what she can offer others. That she respects herself and is treated with respect is paramount. When girls don’t, they often find themselves in situations and with people that are frankly not good enough for them.

I know all the facts, statistics. Pressed, I can likely give her a scientific rundown on reproduction that will adequately mollify her curiosity, stave off the questions for a few years at least. Putting it off and off, hoping the situation will resolve itself...I can’t; that’s just not me. I can’t miss the moment; once it has passed, it will be gone forever.

--Andie

Sleeps Like a Baby

I feel a bit like the dog that caught the car; I got your attention, and now I don’t know what to do with it.

Don’t get me wrong, I am absolutely delighted to have an audience. Between now and the time that you lose interest, I will try and be as entertaining as possible. The one benefit of going down in flames is you make an amusing bonfire.

I didn’t sleep well last night.

Not that I ever sleep spectacularly well. When the kids were new, I was a targeted light sleeper--if the baby made even the slightest noise, shifted even a little in their bassinet, I was immediately and completely awake, ready to spring into action if the situation warranted. Anything else I was deaf to, be it cats messing around in the kitchen or fire alarm going off just above my head. Michael was the one that got up to check on the house noises; I was more of the “psst!! Did you hear that?!” variety.

Gabriel slept so poorly as an infant that when he did get on a more consistent routine, the cumulative exhaustion hit like an eighty-ton truck. We finally coaxed our way up to six hours a night most nights through a combination of calming sensory input and a cocktail of clonidine and melatonin, but by that time we had already gotten into the habit of maximizing sleep efficiency by falling asleep fast and hard everytime. If you are going to have one hour to run on for the day, you better make sure every second counts.

It is that almost that death-like slumber, a deep and dreamless time of nonexistence while your body frantically tries to keep you sedated so it can catch up on...whatever it does while you are sleeping.

I like to think of it as power saving mode on your computer: your brain has got too many tabs open, too many processes running. You can hear the fan whirring hard to cool it off, smell faintly burning plastic, feel the scorch of overexertion when you touch the base.

My sleep is the Blue Screen of Death.

The consistency of sleep is still an issue. I wish I could say that I get used to the luxury of a full night’s rest, but that is not true if for no other reason than my own anxiety. For the last nearly three years (three years on May 9th), I have gone into Emerald’s room to make sure she’s still breathing at least twice a night. Not because I am actually afraid something is going to happen in her sleep. The overnight hypoglycemia issue is admittedly scary, but only ever crops up when she is ill.

It is a comfort to my own mind though. Little reassurance routines that make me feel less anxious in certain situations. Like when I lock the car, I have to hold the keys in my hand so that I know for a fact that I did not lock my keys inside. Or upon locking the house, testing the door, then stopping the car so that I can physically see the closed and locked door before pulling away.

Doing those….is probably not the habit of a mentally healthy individual. Honestly, I have never claimed stability. But it helps keep me from panicking, wondering how I messed up and what damage it caused.

I know it is going to happen. It happens all the time, as a matter of fact, with far more frequency than I would like:

I mess up.

I miscalculate Emerald’s carbs and she ends up getting too much insulin for meal, causing her to drop too low before the next feeding time, forget her insulin when we go somewhere to eat. I neglect to give Gabe his afternoon medicine to calm him down, so he gets wild and dumps dinner all over the floor, or one of his many appointment’s time slips my mind. A hundred times a day in a hundred different ways, I drop the ball and end up suffering the consequences.

So, I partake in my neurotic little rituals--I have lists everywhere, all over the house that tell me exactly what I have and what I need and what I am supposed to be doing. If I have to go somewhere, I will arrive early or I will not be going at all; we need time to acclimate ourselves and figure out if this is a going to be a successful venture or if we need to bail. I triple check locks and hold my keys and give my mind something to hold onto, an anchor so that I can argue down that voice of anxiety that says, “Did you remember…”

At night, I patrol the house.

Gabriel still goes through his bouts of sleeplessness. If there is a full moon or he is getting sick or there is a cold front blowing in, he will likely fight off the sedative medications we give him. He gets up and wanders, turning on lights and vocalizing loudly, “ah-ah-ah-ah”. Crawling beneath the blankets with us, he will roll non-stop, cackling madly. He breaks the lock off the pantry, grabbing food that he throws on our faces to open for him, signing “more please. More eat”.

If he finds his iPad, he will crank it up to full volume and blast Sasha Baron Cohen as King Julian screeching “Madagascaaaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrr!!!!” on a four-second loop over and over in the main hallway of the house, rousing all of us like a demented rooster.

While it can be annoying, we don’t really fault him for this. The developmental pediatrician told us that autistic individuals physically need less sleep than neurotypical individuals would. And if he is up, he’s not doing it on purpose; it is not like this is an active choice for him.

A week ago on Tuesday (April 12th), a storm blew into town. It has rained on and off since then, including today. For our household, it meant that Gaby slept less than a handful of hours Tuesday night through Monday; nearly a full week.

It is not all bad. It has given me much more time to write for the blog. There is a quiet, anticipatory peace in the middle of the night--that tonight might be bad, but tomorrow might be better.

And dawn is fast approaching.

--Andie

A (Dramatic) Star Was Born

I have been writing more lately, because I have been both touched and inspired by people actually reading this. When I first started the blog, it was primarily Michael that was my audience; his father, Ken, was travelling a lot for work back then, and it was a way for me to keep him updated on the babies while he was away.

Mostly, I guess I am surprised that people want to hear our story, told as it is by the wandering mind of the mad matriarch.

For those that read though, I will try and be more diligent about writing. When there are life lulls where little of note is happening, I have many stories in the vault of my mind that have not yet been recounted here. Emerald actually gave me that idea.

Emerald asked me why Benjamin has a whole book about when he was born and she does not.

What book she could possibly mean, I haven't the foggiest--for years, I made and kept scrapbooks about the earlier days of the children's lives, but the more we added to the family, the less I was able to maintain that. As for baby books, I own several that are as painfully sad and empty as my own was (sorry, Mom).

As tragic as it sounds, the one in our family least likely to have a book about their birth is baby Benjamin.

For one thing, most of his story was told right here. For another, I was just plain worn out by the time the littlest arrived. Every second of that pregnancy I reminded myself, "This is the last one. You are never going to be pregnant again." So I chronicled it and enjoyed it as much as I was physically able (he was a dreadfully, dreadfully uncomfortable pregnancy, a fact I attribute to his enormous head and active fetal body). I posted pictures of my bump on Facebook, wrote out the story of his name and all the doctor's appointments on here, and generally celebrated my motherhood.

For my only daughter, there is much less in the digital plane. I didn't have as consistent access to the internet and a computer then, for one thing. For another, I was suffering, a lot. I didn't have the energy or mental fortitude to expend on much else than laying in the bath for literal hours on end (don't believe me, ask Michael).

The biggest was probably because I got knocked up before I was married.

At the time, there was a significant amount of shame. I let down a lot of people, it would seem. Smart girl like me, getting myself into a situation like that. Shame, damn shame.

Not really going to touch on all of that today because I want to focus on the positive, on the Emerald of it all.

"It is my body, I would know if I was pregnant, Michael", I said haughtily from the bathroom floor. There is vomit in my hair and exhaustion ringing my eyes.

He looked so sad and worried, but he didn't argue, just helped me clean up and put me back to bed. I spent most of my time sleeping. In my head, it made sense--I was trying to fight off whatever bug had made me sick the last couple of weeks. And I was so sick. Between blinding migraines and not being able to keep any food down whatsoever, I was weak and weary, barely able to stand on my own strength.

That night, I dreamed of a dark-haired baby girl. She lay on my chest, warm and heavy, in a room filled with light; I whispered her name and woke. With my chest still feeling the imprint of that imagined baby, I called Michael at work and asked him to pick up a pregnancy test on his way home. 

Michael and I had met two years before at a coffee shop next to campus. He was a junior psychology major; I was a baby-faced freshman with braces on my teeth and aspirations of becoming a doctor. Not just any doctor--a pediatric neurologist. I was interested in neurodevelopmental disorders, the functionality and origin of these mysterious brain discrepancies. My whole life had ramped up to this point, my singular focus and drive for the incalculable volunteer hours, extracurriculars, and individual study. I was finally here on my first big step of my journey.

Second semester of my sophomore year of college is not a good time to get pregnant. “Nineteen, with her whole life ahead of her,” people like to say as if I had died that day. I can understand their reasoning, to an extent--it did send my life into an upheaval that I have struggled ever since to re-calibrate into something recognizable. That semester I barely scraped through, little less making med-school worthy grades. Vomiting became my major pastime and I dropped twenty-five pounds, transforming into a wraith in pajama pants that haunted the science building.

The test couldn't wait to tell me I was expecting a child--no two minute wait time, as the box had predicted; it immediately, joyously blossomed a little blue plus sign. I still waited the recommended time, though I doubted the second line would fade away. I had never been late since I had started puberty; predictable as clockwork, a day and a half every thirty days. Never until now, I guess.

At that point, I was already some nine or ten weeks in, but we didn't tell anyone right away. I was bleeding and cramping and so, so sick. There was no way this was turning into a viable pregnancy. Why tell anyone when there were so many signs that it wasn't going to last?

The campus doctor saw me, then got me in to see an obstetrician. Michael and I were still pretty shell-shocked at the news, though he had several more weeks to sit on it than I did in my denial.

That first visit, they took me back alone, leaving Michael in the waiting room. The nurse was obviously unconcerned; she performed an ultrasound and showed me the screen, saying "Look, see? Your baby is just fine."

She didn't know that was the first time I was seeing the child. It was actually baby shaped, no ambiguous blob that I had been expecting; a tiny, defined head and body. I watched her roll over in her sleep, bouncing slightly in her cushioned room, and I was so taken with her immediately and completely.

In the waiting room, a white-faced Michael looked at me with apprehension in his eyes. I silently handed him the sonogram picture and his eyes grew watery. He said, "We are having a baby."

We made a follow-up appointment for a few weeks later, where the doctor sternly warned me that I would be hospitalized if I could not start keeping food down. At four months pregnant, I weighed 102 pounds, skin mottled in dehydration. The one blessing of my decreasing size was that I felt her much sooner than the pregnancy books predicted; a delicate little butterfly's wings, this wonderful and magical feeling. If I was laying on my back, you could see bulges of her protruding, too; as soon as I moved though, she would scurry away, leaving my stomach an expanse of flattened skin.

That was my first bump at five, nearly six, months. I was so proud that I had finally "popped". 

Michael was...troubled, trying to figure out how we were going to raise a baby. Well, specifically how he was going to pay for the baby. In the coming year as we struggled just to survive, his worries were justified. He worked at JCPenney as a sales associate, making some $7 an hour or so. I couldn't work at all, not in my condition and as ill as I was. They had recently made it so that a child could stay on their mother's insurance until they were 26, so my medical expenses at least were completely covered. God be praised for that.

My biggest concern was the baby itself. There were so many questions first time parents have to answer: formula or breast? Vaccinate or unvaccinated? Co-sleep, crib, bassinet?

Most importantly, what was I going to name this thing?

In the dream I had, her name was Irish. I loved it, so unusual and beautiful; I have Irish blood in me, and paired with the dream, it felt perfect. 

Mike hated it. 

Well, hate is probably too strong of a word. He didn't want to talk about baby names. That was such a non-concern in his mind because obviously the baby will not go nameless. We'll figure that out later, closer to the time the baby is born. Maybe after, when we can see what she looks like. Plenty of time for that...just not today.

I was hurt and distressed by his attitude. He had more tangible concerns on his mind, but to me this baby was already so real; I wanted to have something to call her, other than "Belly Fruit". 

There were several names I tried during that time. We sort of tossed some boy names around, but before we knew for certain, I felt in my heart of hearts that I was having a girl. I was absolutely, 100% convinced, and you could not tell me otherwise. 

Tula, which was Michael's great grandmother, was a top contender for the name, but people were not in love with it. I now know that you can't please everyone and should just pick the name you like, particularly because finding one that you and your spouse can agree on is hard enough without adding every other opinion in the world to it. Michael is into traditional girl names--he liked Sophia, Gwendolyn. I liked more....unusual names, like Niko, Myka, Amarantha, Olympia. 

I won't recount the whole name journey here; you can read about all of that on the blog post-- http://weardenfamilynews.blogspot.com/2011/07/emerald.html 

Eventually, I did stop getting so sick--I was able to keep down individual boxes of cereal, one every six hours. They held off doing the test for gestational diabetes until I showed some improvement, so at 28 or 29 weeks, I was able to do the one hour.

And I failed it. 

Nurse said a lot of people fail the one hour; I would have to take the three hour and see what that said. She was pretty confident I would pass the second time; I had no risk factors, after all. 

So I take the three hour. It was unpleasant; during the last draw, I was so weak and shaky that the (very cute) phlebotomist in training had to carry me back from the waiting room. 

And...I failed that one, too.

We controlled it through diet and exercise, with me having to test my blood sugar around 8 times a day. Walking when it was too high; eating when it was too low. It is hard to gain weight appropriate for your baby when you have to count carbs; at the very end, I had gained a grand total of 7 pounds, against the 25 I had lost. 

The last two months of pregnancy, we did Non-Stress Tests (NST's) where they attach nodes to monitor the baby's heart rate and your contractions. It was about an hour twice a week; I was set up in a nice recliner and had a drink at hand and cable tv and it was horribly boring. Every now and then the nurse would come in and press a vibrating sound maker near the baby's head; she said this would excite the baby, and they would watch her heart rate to see how quickly she calmed back down. 

(Side note: I sometimes look up what I am referencing in the posts so that I can add any additional information; according to the Mayo Clinic website regarding the issue, "Typically, a nonstress test is recommended when it's believed that the fetus is at increased risk of death." Oh, well then.)

They didn't tell me at the time, but apparently Emerald was not performing so well during these tests. We started the NST's because of a condition known as Intrauterine Growth Restriction (IUGR). She was clocking in at just the 29th percentile and not getting much bigger. 

(Side note again, this time to author: Stop looking up these conditions! Thank butts you didn't have internet access to google these while you were pregnant, because they are scary! Geez!!) 

At nearly 37 weeks, my mother-in-law Rhonda and her sister-in-law Melisa hosted a baby shower for me at Melisa's house. It was so lovely and had the most amazing strawberry cake. I vividly remember that cake; it was really good, and there had been concerns near that time that Michael's cousin Sydney was allergic to strawberries (it turned out she was allergic to cedar). Somehow that makes the cake more memorable. My grandmother, brother and sister-in-law, mother, and sister were all able to come down. 

After the party, which was on a Sunday, we went to the park and had our maternity pictures taken. My brother's best friend was a photographer and her gift to us was the pictures. It was a little lake across from the hospital the baby would be born. 

Everyone spent the night and planned on heading back home in the morning. Mom drove me to my NST the next day, where the nurse asked, "So are you ready to have your baby tomorrow?" 

-record scratches- 

What was that??

She looked abashed, because she thought someone had told me. Apparently, in the last sonogram they had taken, our little nameless baby had dropped from the 29th percentile to the 6th. She needed to come out. My blood pressure was also rising, likely to my sudden realization that someway or another, this baby was about to have to leave my body. 

Everyone that had been heading home turned around and came back; Andie had a c-section scheduled for 5pm Tuesday evening. 

I had to fast all the next day because of the impending surgery, so Mom got up and made me an enormous breakfast burrito right before the cutoff for food. It still makes so little sense to me, starving a diabetic and heavily pregnant woman, but I made it somehow. 

At the hospital, they hooked me up to an IV, wheeled me down to the operating room. Not twenty full minutes later, I had a daughter. 

The surgery itself was not bad. I was expecting it to be more frightening--I remember asking Michael, who was allowed to be in the room with me, to tell me when they started. He glanced and he could already see the baby. I could feel that something was going on down there, but I didn't feel pain. Just some tugging and then it felt like someone was pressing very firmly on my bump. All of a sudden, I felt like a deflated balloon, completely empty. 

She was actually bigger than I thought she was going to be at 6 pounds, 9 ounces and 18 inches long. She was still too small for the newborn outfit I had brought for her, so Rhonda went out and got her some preemie pajamas. 

Fumbling, we chose a last minute name from a flyer for the maternity photographer written in a pretty, eye-catching script--Emerald. Precious jewel, said to impart love on the bearer; could there possibly be a more perfect name?

It seemed to suit this little strawberry of an infant, with her florid and silken skin, fine dusting of red hair, and green hazel eyes. She was so sweet natured and precious, with her teeny squeaks instead of cries and bright eyed, smiling demeanor. Our precious little gem daughter, fruition of nearly a year’s worth of sickness and struggle.

She was everything I had hoped for, dreamed about and prayed over, and I loved her intensely.

So that is your story, baby girl. You have loudly proclaimed your existence since you were little more than a collection of cells, a vibrant, vivacious entity of life and love.

A unexpected, but very much welcome and needed, blessing in our lives.

--Mom 

Making Life Easier

Most days, I feel like we are still in survival mode.

After you get home from the hospital with your newborn, your only goal is to get through each day with everyone alive and intact. It is a full time job now though, as you have an infant that needs round-the-clock care and a body that is in some desperate need of healing. You have exactly zero time and energy to expend on anything not directly related to perpetuating your family's existence. 

So you wear pajama pants for days on end, sleep precisely when the baby is sleeping (if you are feeling particularly energetic, maybe take a shower), forgo nutrition for whatever is quick and convenient, and studiously ignore the dishes and laundry piling up around you. 

If your conscience gets the best of you, you may indulge in a twinge of guilt when you see the kitchen table covered in baby shower gifts you haven't sent thank you cards out for yet (you were so sure you'd be able to get at least some done in the hospital!) or engage in some halfhearted "foot cleaning" (kicking things thrown on the floor to the edge of the room so nobody trips). But guilt itself is a luxury you don't have energy for, so you give it up for a bad job and go back to staring sleepy-eyed at your perfect and precious new taskmaster. 

That survival state of mind is not only for when you have  newborns--families go in lockdown during times of illness or stress, lost jobs, death. It is the stripping away of all extraneous responsibility and focusing on keeping your family whole until you can function again. 

Eventually, I would like to transition out of this almost feral one-day-to-the-next mentality. There are little signs that we are improving. The living areas of my home are generally presentable. I wear real people pants almost every day (no promises on the weekend); in public, I might generally be found sporting basic makeup. Our meals are all homemade and full of vegetables and nutrients and all those things kids aren't remotely interested in eating. I can feel a shift, however slight, toward a less chaotic life. 

To get to that point though, requires a lot of planning and foresight on our part. Michael and I have taken precautions to set up our world to run a little smoother, make life just a little easier. 

For example, groceries is a bit of an undertaking.

Every month, I am in charge of the grocery shopping. The third weekend of the month, I start writing out meal plans--looking up recipes, consulting my notes on what everyone will and will not eat. Benjamin does not like potatoes or beans. Gabriel is not a big fan of meat; he will not eat something with small pieces of meat mixed in with everything else (pot pies, soups, chili), but he will eat all the components separately. Emerald I have allowed to pick three things--three things I will never put in her food or make her eat. She chose yogurt, sour cream, and guacamole. When she is eating food someone else has provided, all bets are off--if I can eat mayonnaise and smile serenely, she must too. At home, at least, she will be spared. That is just preferential things; the need portion is a little more tricky to finagle. 

In truth, our family is sort of difficult to feed. It is why I shy away from meal-centered outings for us--why I haven't been able to bite the bullet and attend a small group for our new church, or go to Wednesday night dinner. It is one of the things some families take for granted that is just more trouble than we usually would like to take on.

Michael is lactose intolerant and has the acid reflux and the ulcers; he can't eat spicy, acidic, tomato-based, or dairy. I am a vegetarian that occasionally will eat fish. Benjamin is generally not going to eat much, but at least is more or less a person about it. Emerald and Gabriel are the two really complicated ones though.

Emerald is, of course, diabetic; she will need a finger poke and an insulin shot after meals, for which I have to count carbs and calculate (and hope she isn't eating anything I didn't expressly give her). While everyone in this house follows basically the same diet as she does, at someone else's house there is a good chance she will have to watch other children eat things that I am going to have to tell her no on. 

And yeah, yeah--I know that the occasional dessert will not kill her; yes, I could give her a little more insulin and let her have sweets like everyone else. I promise it isn't that simple, though. You just gotta trust my judgment on this one. If I am telling her no, it is not because I am being mean. Pressing the point, "oh, come on, Mom!" is going to make me cave on something I have thought through and decided against. Which is just kind of a well-intentioned crappy. 

Gabriel cannot eat with utensils. He finger feeds, which is incredibly messy, and a complete no-go for most meals. Worse than though, he is a food thief. 

That part can be incredibly embarrassing--watching other children eat prison-style with one arm wrapped around their plate, eyeing Gabe suspiciously. He will casually walk by (he does not sit still for meals at all; that is something we are still working on) and take a fistful of your food and walk away. It is unsanitary and gross and rude and...

Okay, so I keep getting off on a tangent, but I did have a funny story about this: Jarrod and I had taken the kids to eat chick-fil-a in the mall. We sat in a booth so Gabe specifically so he could not steal. He kept turning around in the bench, but was otherwise doing really well. There was an elderly couple with their grandchild sitting behind us, and the grandparents were shaking with silent laughter. Gabriel had been turning around, stealthily nabbing one waffle fry at a time from the child's container; the child was baffled as to why his food was disappearing so quickly! When I finally caught on, we apologized and offered to buy him a new one, but they waved us off, still laughing. 

Back to the story at hand, eating out in public or with other people is just one of those things I usually just default to, "Thank you for the invitation, but we can't." 

Where was I going with all of this?

Groceries, right. 

So, I make my meal plans, with wiggle room. The following week,  I check all the circulars and coupons and specials for every grocery store in town, as well as what Bountiful Baskets has to offer. I use this to make my master list, broken down into categories of dairy, meats, produce, etc. Then, we are all set for grocery day. 

Grocery day is the most exhausting day of the month for me, which is precisely why I do it only once. I need the full 29 days to recover before doing it again. 

Benjamin and I go to the store while everybody else is at school or work. Painstakingly, I go through my list, cross-matching coupons so that I have the exact right brand in the exact right size so there is no hiccup that I will be too tired to fight at checkout. I have a general idea of how much everything is going to cost, and we have to stick to a budget. 

Once I get home with my bounty, I have Ben help me carry it all in. I put away what perishables I can, and we have lunch. He goes down for nap, and I start round two. 

Round two is prep. I know from experience that fresh fruits and vegetables are going to ruin waiting patiently for me to use them. I also know how much more expensive shelf-stable (frozen, canned, etc) produce is, so I buy fresh what I can, when I can. 

If you are going to use the fruits or vegetables within two months, you don't have to do the blanch and shock treatment to freeze them; you can just wash and dice them, and they are ready to go in the freezer. I did not know that at first; cutting the cooking part has cut down on some of the trouble of it. 

But for the next several hours, I wash and dice and chop and freeze everything we will be using that month--onions, carrots, celery, squash, eggplant, everything. Everything goes in individual portions so I can pull out just what I need. 

After that, I measure out and bag all the cereals and snacks and chips so that I don't have to think about how many carbs are in a snack or breakfast; I all ready know, because it is all ready measured. This has the added benefit that if Gabriel is going through one of his phases where he is dumping everything on the floor (a phase that has lasted roughly six years at this point), he  is only dumping out a single serving of a thing and not the entire family sized jumbo bag. 

The next several days, I have the crock pot and oven on nearly constantly. I don't buy canned beans or stocks. It costs about $1.30 for a bag of black beans, which makes 6 cans worth of beans when cooked; each can costs $0.89 or so. It is just much cheaper to make my own. Plus I can control how much salt goes into it, and (once again) can freeze the individual portions of beans so they are ready to use. I also makes soups that I freeze for my lunches. 

One of the things I do for Michael is that I make breakfast bowls--roasted russet potatoes, salsa, scrambled eggs, some sort of meat, and cheese--for him to take to work. That and a ton of peanut butter sandwiches. (He's gotten rather spoiled on this and insists that it is not the same when his peanut butter sandwiches have not been frozen). I write little notes or dorky jokes on the baggies for him to find. But that way, he can just grab a homemade breakfast to take to work, all ready to go. It is so easy to go to McDonald's and get something, but the price adds up over time; this is much cheaper, healthier, and seems to make him happy. 

I do all of this so that for the rest of the month, I have everything on hand, ready to go. We don't eat out because it's faster or easier. I don't have to stress about what we are going to eat every night, or spend two hours in the kitchen trying to get everything ready. No food gets wasted or spoils. And for the most part, everyone is relatively happy. 

The other big thing we do to smooth out life is that I hang the matching bottoms on the hanger with the shirt when I do laundry. It is bulky, but for any of my children, you can reach in and grab a whole outfit without having to go digging. And I don't have to fight Emerald in the morning for trying to wear shorts that are too short to school or leggings with the wrong type of shirt. Fight-free mornings. 

You can see us start trying to venture out more. Starting to socialize, make friends, becoming more people-y. I have faith that one day, we may eventually return to sane, normal adults. 

Probably not today though ;) 

--Andie