Perfect

I have this great kid.



He is so cute (though don’t tell him I said that; he hates being called cute). He says the funniest things; I have about a hundred videos of him that we all watch again and again because they warm my heart and make me smile on my bluest days.

His gift is going to be music. Michael found a first-generation iPod that we loaded up with music for him; he loves to sing and play instruments, write songs.

He’s so very kind-hearted. When his sister gets in trouble, he will come in shaking head to foot telling us to leave his sister alone. If she loses out on tablet time, he offers to give her some of his.

My Ben is a constant, overflowing cup of joy, and by far and away, my biggest and most steady source of guilt.

It’s usually this….sort of uncomfortable humming running in the background. Like the sound of the air conditioner unit—every now and then, it’ll kick on and make itself known with a lot of racket. After awhile, I acclimate and stop hearing and feeling it so acutely, and it’ll flip off for a bit to flare up again later.

My Ben is perfect, you see. He’s so good and kind and sweet and funny. There is absolutely nothing wrong with him.

Not autism.

Not diabetes.

...nothing.

There is such a dearth of available resource in this house—there isn’t enough time in the day, enough space, enough peace, enough quiet. Our lives are bursting at the seams as it is, trying to hold all our wants and our needs and hopes and our dreams inside that there isn’t room to move or breathe, crushing us from all sides. The very rarest and most precious of gems though is parental attention.

When we are particularly tired or drained, Michael and I will half-heartedly snip and snarl at each other, cyclical arguments that go nowhere and mean nothing, saying the exact same thing: Please notice me.

So when confronted when a gaggle of siblings, each with needs so much louder than his own, how does Ben fit in?

At meal time, when we are handling cooking and finger pokes and two separate insulin calculations and making plates with exact portions and it’s too much and too loud, Gabe is stealing fistfuls of food off his his brother’s plate...it is easier in the moment to tell Ben to fussing about it.

When Gabriel knocks all the books off the shelf and tears up packs of diapers and dumps buckets of toys, he retains unlimited access to screen time because it’s his communication device. Ben is sent to bed early without tablet time because his room isn’t clean.

His diet is the same as his sisters to make it easier. He surrenders his candy at holidays, just like they do, and is punished when he is caught sneaking it.

All day long, he is told to go to his room, go play, go on now. He sometimes asks for special time—going out with Daddy or watching Star Trek with Mommy. Usually, he gets a tired and vague noncommittal “sure, someday, buddy.” If I’m feeling particularly harassed, I snap out of guilt. I’ve let him down so many times, he doesn’t ask much anymore.

I have tried researching it. There isn’t much data regarding siblings of special needs kids. Everyone is so busy studying the subject that we are only getting glimpses of the familial ripple effects. Some constants have been observed though:

Anxiety.
Depression.
Acting out.
Feeling like they can’t express their feelings.
Need to be perfect.
Loneliness.

At the bottom of the article, there’s usually a short blurb about possible coping strategies. Enroll them in a support group (though be advised sibling support groups are very few and far between). Set aside time for each of your children every day. Treat all the children the same. Godspeed and good luck.

The lack of attention causes mishaps along the way. It takes so much effort and focus on our part to keep the other three alive and safe that Ben sometimes falls through the cracks, and we end up in ICU because he drank nighttime medicine. Most of the time is a quieter turmoil than that: a knocked over dresser, an upended bottle of dish soap, a busted window.

No one chooses to be born into this life; no one picks the hand they are dealt. This is the path we are on and I can either keep making excuses, or I can find a way to be better. God help me, I don’t know how. I feel like a tube of toothpaste—wound so tight, keep squeezing to get more and more out, but I don’t know how much more I have left to give. Michael, I know from our pissy bickering, is in no better shape than I am.

This has been a hurt my heart has carried for a long time. Ben has never known another way. When he was born, Gabriel had just been diagnosed. He wasn’t even two when Emerald wound up in the hospital. Our particular brand of chaos is how life has always been for him. After all these years, I still don’t know how to fix this hurt he was born into, a hurt I created.

Until now, where we have this beautiful, delightful six-year old that struggles with self-worth, crippling loneliness, and fear and uncertainty. He has trouble making friends or knowing how to play because his siblings don’t engage him. Like sisters do, his calls him annoying and a brat, that he does everything wrong, yells at him to go away. His feelings are displaced because Gabe’s developmental needs are so great that there often isn’t room for anything else. “Gabe doesn’t know any better” is an all purpose band-aid slapped on every situation.

Even his mom doesn’t have time for him.

When I am scraping the very dregs of my reserves and coming up completely empty, we are all walking away hungering for something more. I’m just not it. I’m not enough on my own.

But I’m all we’ve got; I’ve got to be enough. I have to find it in me to be enough. If there wasn’t enough food to go around, I wouldn’t accept that someone would just go without. We have dealt with too little for too long. Now I have to figure out how to be more. If I have to MacGyver this situation using the scraps and trash of what I have left, then that’s what I’ll do.

Mom pushed me to sign Benjamin up for little league. Against my hesitation of adding anything else to our already overflowing plate, I did it. It is a very small something, but it is a start. What is that Helen Keller quote?

“I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”

I am only one. But I am still one. For my Ben, I will find a way.

—Andie

BenjaFriend

I lost some momentum with the story of our lives. I petered off around the exhaustion-blurred haze of Gabriel’s toddlerhood and diagnosis. Though it is more recent, it is the most difficult to recall because of the sheer muchness of it all. If we stop there, though, we miss one of the very best parts: my baby Benjamin.

Gabriel’s school had the sit down with us in late October 2010, which led to the doctor’s visit, flurry of referrals, and sleep-deprived EEG in early November. I remember a weird moth epidemic remnant from the summer, which left winged corpses all over then.

Most of the specialists we had been referred to would not have openings until the spring; the neurologist we had to see right away, but the rest were not pressing. We were suspended in this purgatory of waiting for answers.

Somehow we made it through the holiday season. Things weren't at a huge disconnect for us yet, Gabe being only shy of two, his behaviors obviously immature, his development delayed, but not so glaring or unmanageable. Those that knew of the diagnostic process we were undertaking were highly skeptical, and voiced their doubt. He seemed for all the world like a “normal” little boy.

That January, I decided to take the semester off school because all my attention was focused on Gabe. I never went back.

At the beginning of February, I took one of my semi-regular dollar store pregnancy tests to make sure I was still flying solo. Imagine my surprise when it informed me I had a tiny passenger aboard!

The day I got the positive test I remember vividly. My friends Beth and David came to take Emerald and Gabriel to the mall, where there was a new bounce house play area that had just been installed. They knew Gabe would get kick out of it. We got an afternoon pass and let them play while I talked to Beth about what I had just learned. Before we left, Beth wanted to stop in Barnes and Noble to pick up something.

Maybe he was overstimulated, maybe he wanted to go back to the play place...I'm not entirely sure. But Gabriel had his first big meltdown. He grabbed shelves full of books and was pulling them down; bright red in the face, sweating, hysterical, squalling like a fire engine. When Emerald throws a temper tantrum, I get angry and irritated. This wasn't like that. I was scared because I had no control.

All the way back home, I worried until I was ill about how I was going to handle him AND a new baby.

The pregnancy itself was not bad. We told Michael's family a couple of weeks later at his mother’s birthday party. We got a picture frame that had a grandparent quote and inside was a sonogram. Beth made cupcakes that said “boy or girl” on them. Everyone seemed happy by the news.

There was no sickness this time around, and the only craving I recall was hot dogs. As I do not eat hot dogs, I sat in the parking lot of Wienerschnitzel with the windows rolled down so I could smell the air. I had terrible acne, and for two weeks I had a carnitas monster burrito from freebirds twice a day.

In the mornings I would get up and do pregnancy yoga to make room for my big baby Ben. Next to me, Emerald would mimic the motions, down to sending love to the “baby” in her tummy like I did. Gabriel crawled beneath my legs and under my arms, laughing as he wove his way in and out, trying to knock me down.  

Early on, I asked Michael what he wanted to name this baby. Right away he said “Benjamin Reilly”. It was a name we had liked for Emerald, and the name of a Spider-Man character (Scarlet Spider, clone of Peter Parker. Look it up--good stuff). If it was a little girl, we decided on Gwendolyn Fern.

Toward the end of the pregnancy, I was dreadfully uncomfortable. I couldn't eat, couldn't sleep. I was too hot all of the time. Every night around 11 pm, that tiny fetus would get to doing loop-de-loops and barrel rolls inside me and I would lay there feeling every bit of his bony body. His head was stuck down in my pelvis and it hurt to walk, to sit, to stand. I was enormous.

He was born at lunchtime on Labor Day Sunday, one of two that day. The other was an emergency, but we were planned.

Everything was going so smoothly when gradually I fall asleep. They had sedated me, and I didn't know why. They pull out the baby and I hear the nurse say, “where was she hiding that thing?” I am confused and a little offended; what's wrong with my baby. Michael whispers in my ear that he was 7 pounds, 14 ounces. I am relieved because this enormous weight has been lifted off of me and I can breathe again. I slip off to sleep.

Michael and my little Benji baby left; I was in a drug relaxed state, in and out of consciousness. There was a carousel of blood, and the doctor saying there was a bleed somewhere. They had to fill my bladder to check for leaks.

I drifted away again.

A little while later, I feel the doctor's hand on my shoulder. I swim back up to consciousness. Not sure why I'm still in the operating room; why haven't I moved to recovery? The doctor tells me there were some complications but it was under control, but that I shouldn't get pregnant for five--he glances down at my abdomen, and corrects-ten years, if ever again. I give him my most winningest smile and say that I was OUT of the baby making business.

In recovery, I was back there for so long. The nurse with the pretty eyes said that I could sleep, just sleep. Family would keep me up, but back here I could sleep.

When I finally did emerge, I didn't realize how doped I was--I grandly and expansively told everyone how much I loved everything and everyone. I was so happy. My baby was so perfect! Beautiful! He had this dark fuzzy hair and he was chunk chunk chunky. I was quite pleased with myself.

The drugs took a while to wear off. When they finally did, Michael brought me up to speed on how concerning the day before had actually been.

The surgeon had seen a “window” where a former scar had separated, thinning the muscle of the uterus enough to make it transparent. He had run his finger across it, and it ripped open beneath his touch. The dehiscence was severe enough that they were able to get the baby out through the tear without cutting more open. As soon as they saw that, I was quietly sedated so they could control the bleeding and try and repair the damage.

I had no idea. Everything had been so calm and peaceful. The recovery was much more uncomfortable than the previous two, but this was my third.

He was so good. His newborn cry sounded like someone had described crying to him but had done a poor job; he just said the word “wah” in this deep throated absurdity.

Because of gestational diabetes, he had a narrow lower body with a proportionately larger head and chunky shoulders and arms. It was kind of funny to look at, but he was beautiful.

The first day we had him home, I set him in the bouncer to get some water. When I returned less than a minute later, Gabriel had flipped the bouncer upside down--Ben was happily cooing facedown in the carpet.

That was the only sign of aggression we saw from Gabe to Ben for several years. Ben would play too rough or hurt Gabriel, and time and again, Gabe would kiss his hand and put it back in his lap. Gabe wasn't above stealing a pacifier or bottle, but he was always exceedingly gentle with his baby brother. During OT, we would put a pillow inside a laundry basket with Ben laying on top and let Gabe push him up and down the hallway, both of them laughing all the way.

Emerald took delight in Ben. She wanted to feed him, hold him, change him. She was the first to make him laugh. She'd read stories to him and share her food and toys. Everyone she met, she would tell them about her new baby brother, of which she was so proud.

Benny is and always has been a joy to be around. He's so kind and tender hearted. Whenever Emerald gets in trouble, he comes in, shaking head to foot terrified but firmly telling us to leave his sister alone. If she can't have tablet time, he offers to give her some of his.

This post is largely influenced by my Benjabuddy’s 6th birthday, which was yesterday. The kids ask me what they were like as infants. I tell them Emerald was “Chill”, Gabriel “Curious”, Tula “Gassy”. Benjamin, my darling little one, was “Happy”. That would change to “Reckless” when he got a bit older, but as a baby, he was my cheerful fella. We would go to the store and get coffees buy-one-get-one-free (decaf for him) and walk around the store singing. He'd always loved to sing. He’s babble back to me “a doka doka? A doka doka doka doka”, intonation of speech but utter, adorable nonsense.

People ask me if it was a bigger adjustment to go from one to two, or two to three kids. As close as I had them together, everything was essentially assembly line--feed three, bathe three, dress three, kiss three, one right after another. Ben just slipped into our lives like he had always been there.

(In answer to that question, I say every addition is an adjustment and every change has a learning curve.)

I wasted so long worrying, worrying about how I was going to handle this new baby and a possibly autistic toddler, how I was going to manage with all these changes. A lot of good it would do me; life was changing, whether I wanted it to or not. I couldn't have foreseen or prepared for how difficult it was going to be, that's for sure. But I would have never gotten to see how good and gentle Gabe is with babies, or what a wonderful teacher and guide Emerald would make. Benjamin has brought so much joy and love into our family, hope when we needed it most.

God knew just what we needed when he sent our little Ben.

Gabriel's Birth

Welcome to our Wearden Family Blog! Hopefully, this will help us keep everyone more up-to-date on the comings and goings of us--Michael, Andie, Emerald, and Gabriel.

Since we have been hermits for the last few months (years), the next couple of posts will probably be catching up to the point we are now--Emerald is 20 months old, Gabriel 3 months. First, Gabriel's birth!

Gabriel was due February 24th of 2009, or Rhonda's and Marian's (Gigi/Granny) birthday. Unlike my pregnancy with Emerald, it didn't look like I had gestational diabetes, which was a huge relief, as it was an inconvenience more than anything else. Unfortunately, they were wrong, and due to Intrauterine Growth Restriction (IUGR)--meaning Gabriel was not able to grow--and the diabetes, they wanted to get him out as quickly as possible. His lungs were "severely underdeveloped, due to miscalculated due date and uncontrolled diabetes", which means instead of being born on February 12-14, he had to bake an additional week and a half.

It ended up being a godsend that we had to delay the birth of the baby, because Emerald chose that moment to develop the flu, RSV (Respiratory Syncytial Virus), double ear infections, and antibiotic-related yeast infection and had to be kept away from me and the little baby until she was no longer contagious.

Michael was the only one that got to know the baby's gender, and therefore he was the one that got to choose the baby's name. He later told me that he had narrowed it down to three boys’ names, three girls’ names--Alexander, Dylan, and Gabriel, and Aeris, Myka, and River. I love all those names--my husband has wonderful taste!

We did the c-section at 1pm on February 20th (a Friday), and it was a bit of a fiasco, to be honest. The nurse in charge of me was having quite the difficult time, resulting in multiple attempts to insert my IV, a veritable gusher of my own blood all over the hospital bed, and administration of amoxicillin (to prevent infection during the surgery), to which I am allergic. So, I was a little panicked when I actually ended up in surgery, but it all turned out fine in the end.

Gabriel Lynn Wearden was born 6lbs, 9oz (the exact same as his big sister had been, and 1 oz lighter than I myself had been) and 19 inches long (1/2 inch longer than Emerald). He had the loveliest olive skin, big dark grey blue eyes, and a dusting of the silkiest dark hair.

We stayed in the hospital for the standard three days after the c-section. He did not have any trouble when he was born--no jaundice, no blood sugar issues (despite the diabetes), nothing. He was perfect. J

Now he is the happiest, gassiest 3 month old baby boy, and in the next few days he will be joined by his new best friend, Baby Boy Bevill!!

--Andie