Tag: buglife

It’s always something… and an effort to choose happy.

I say this phrase almost every day. When people ask how I am. How we are. What’s the latest with Landon.  It’s always something. As I lay on my exercise mat this morning, avoiding an ab workout, I thought… no phrase has ever defined me so much as this one. And I don’t like it. In fact, I’m down right fed up with it. Why the hell does it HAVE to always be something with me…. with us?

As I surmount one hurdle, another one rears its head. I find myself telling people I’ve just met here a mini synopsis of our life and it sounds absurd. Most of the time, they stare and say “seriously… that’s ridiculous and down right stressful, honey.” Or they try to hand me a cocktail. Our life is always peppered with this one phrase.

This goes back to before Landon. Before marriage. To avoid reopening old wounds, let’s just say “it’s always something” has hung around my neck since my early twenties. With my parents, with my father, and then with Bo.  To resurrect some humor during my darkest hours, I’ve said this to others. To let friends know that I saw the absurdity in just how bad things had gotten. Or that I could see my way out of whatever it was.

After we became a family, it was something that should have been put on a needlepoint pillow. We had this incredible girl and she has a rare syndrome. It’s always something. We took her to specialist after specialist. Waiting rooms, long subway rides. Therapy and not meeting goals. Breastfeeding or the lack thereof. It’s always something. While still in New York, as a couple, we started failing each other and being less of a team.  It’s always something. So we moved. We started over. Living with his family and trust me… around here it truly is…always something. But now, as we build our house and see this dream out there… almost within reach… Bo lost his job.  It’s always something. I’ve now gone back to work from home full-time. It’s exhilarating to use my brain more often and with adults (!!) but now Landon prefers someone else reads to her. When I run into the room after working all day to pick her up from her grandfather, she cries when I take her.  It’s always something. And the highs and lows as you work together to find jobs, find insurance, keep up with Landon… there have been many somethings. And these things keep getting in our way of just being happy.  Just being anything other than put-through-the-ringer exhausted.

 This new normal is not just a life with a child with special needs. This new normal is riding on a roller coaster. I stop and think some days that surely all of these tests are preparing me for some unbelievably hard thing that’s coming. Surely there is a larger plan at work. God has this road map that I am following.

And this morning, as I lay there, I reminded myself that even if He does have this plan for me, my choices matter each and every day. My choice to be be warm and supportive to Bo instead of cold and challenging sets the course for that day and sometimes that week. Making more of an effort myself to leave my phone OFF or in another room when playing with Landon is my choice. Saying something truly positive when someone asks “how’s it going?”… my choice.  My choices can offset this “it’s always something” attitude.  That phrase is actually negative. “Sure this sucks and I’m in pain but this happens all the time to me, what’s new?!” It’s gross.

I want to break this habit.  I want to make choices that break this habit. 

I want to choose happiness and light instead of complaining or casting emotions aside. I want to stop assuming something else negative will come our way, because acting like “it feels like it sure will” isn’t helping anyone.

And today especially… all I wanted to do is come here and rant and rave about how frustrated I feel. How mad and sad and annoyed I am that it’s always something. But, after writing and thinking and writing some more… I’m choosing another route.

I am always preaching “choose kind” from the book Wonder. I promote the Kind Campaign on social media.  So now… I want to choose happy. This will be my hashtag (and mom I’ll explain what that is later).  No matter what someone else is doing, what energy they are throwing my way… I will choose happy. It’s not easy. I’m not saying it’s as simple as deciding. This choice will require a paradigm shift in how I think and interpret what’s going on in my life. There is darkness in this world and things are unfair, but dammit… this is my goal.  I am plain old tired of being frustrated and feeling like I’m cursed. My choices have led me here after all.  I’m a mother to the world’s most special child. I have an amazing family and husband.

And I… choose happy. 

Who’s with me?!

xoxo,

Eloise

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Journey into motherhood…

When I was in my twenties, there was a great deal of focus on finding love. My girlfriends and I spent so many hours focused on finding a man- going out to find a man, and if we did have a man… was he the right man? Maybe it was because of my southern heritage, but most women I knew then felt the same… finding a husband was some sort of ultimate goal. Careers were important as well, but getting a boyfriend and getting married were our other full-time jobs.  That’s not to say that we didn’t enjoy and revel in our friendships, because we did, but finding someone to love felt like an ultimate prize.  

When you find someone to love… it’s exhilarating. You are synched in a way that you cannot properly explain. Your world tilts on its axis and even the grittiest streets of New York seem rose-colored.  While I was dating Bo and then newly married, I still always felt that I had to have some bigger purpose. Being Bo’s wife was wonderful. But I didn’t really feel any different from before…and I never felt defined by our relationship. I wanted a full and rich life and being a wife felt like just one component. Work was fulfilling in another way, but without a specific career goal at the time… it was not exactly everything to me either. You could say that I had it all from looking in from the outside, but I didn’t always feel that way. I knew that there was some larger purpose for me laying somewhere out there in the future.

When we decided to try to get pregnant, I was nervous. I had never been one of those women who had always exclaimed her intense desire to be a mother. I always thought I would be a mother some day, but there were other things that I wanted to do as well, and I wondered if that meant something.  With my butterflies in tact, we started to try.  If you know me at all,you know I don’t do things half-way. So, I decided that I would approach getting pregnant like most things that I wanted to achieve… with absolute determination bordering on obsession. Once successful, I focused my nervous energy on pregnancy fashion, cute little shoes and making lists of names.  But towards the end, my worries interrupted my sleep. I wondered to myself if I’d even be any good at this thing called motherhood, considering I loved my time alone as well as uninterrupted sleep.  Although I read the baby books, I felt so unprepared. 

I’ll spare you another story about having bug. I think y’all know that tale pretty well now.  So we’ll jump ahead.. talk about what it’s like for me now after 20 months of being her mother.  

I think of myself now as two people. Before and after Landon. My purpose in this life feels very specific. Giving of myself to her and giving of myself to others through her. She is the greatest gift in my life. We all say this about our children, but I really feel this overwhelming sense of honor when I look at her.  The profound statement that I’m her mother for a reason, rings true daily. It’s this very specific role of advocate & champion of her needs that fills my heart with purpose and love. She’s made me a better person. Reminded me of my faith and made me live my life out loud for all to see. In doing this, I’m reminded that there are greater things in life that what was once important.  

What I’ve learned over the last six months, with what seems like challenge after challenge, is that SHE is everything. WE are everything. THIS FAMILY is everything. I’m here simply to do everything I possibly can to provide, protect, and push her to be her best self.  If that means working again full-time; if that means calling coordinators or doctors 10 times a week or day; if that means running at 6:30 am so I have the best mindset to be her mother… than I will.  And her sweet face, precious laugh, and wild spirit is my light in all of this.  

Happiest Mothers Day to all you wonderful mommas and mommas to be. 

XOXO,

Eloise

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PTBS… Post Traumatic Birth Story

I’ve been doing a bit of heavy lifting on the emotional front while on my long (and slow) runs lately. Most of this past month, I’ve devoted my toddler-free-brain while running to the speech I’m to give at W&L in a week. Once it was written, however, it was like the channel was changed very suddenly. I started to think about what it would feel like to be pregnant again. I guess that’s what was stored up for me as if my brain has a Netflix queue.

Most people with a toddler rounding two-years-old begins this process with excitement… a sibling! Yay! I, instead, pause for a long period, and have no clue if I want another. I go immediately to the place of… it would be best for Landon I believe…. so we should seriously do it. But, on this run, I believe I discovered the WHY that underlines my trepidation.

Most, my husband included, assume my anxiety-riddled hesitation is because of the possibility of another child with Treacher Collins. Those that know Landon are quick to say “why not, she’s amazing” and call it a day. That is possibly 40% of my thinking these days.  And I am quick to remind these dear friends and family members that Landon’s TCS is the MOST mild version I or anyone that’s familiar has EVER seen. If another child born to us had it… you just never know. Most children with TCS have had close to 20 or 30 surgeries by age 10. Their emotional battles far exceed what we will ever face. I admire and respect these families and parents so greatly. But I know… very clearly… I’m capable of parenting Landon. I do not truly believe I could parent two children with TCS.  That is my honest to God truth and I’m not scared to admit this.

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So, what makes up the other 60% of my fear then? As a major fan of self diagnosing (and making up diagnoses), I believe that I have PTBS.  Post Traumatic Birth Story.  I’ve written about her birth story before… it’s in the “Start Here” section of this blog. It has most of the details and is somewhat poetic (if I’ll allow myself) in it’s descriptions of how I felt.  I do not, however, think that I went THERE enough though. The gritty rawness of the 6 days I was in that hospital is actually impossible to put into words.

First, the emergency surgery scared the living daylights out of me. I was calm on the outside as tears streamed down my face while I prayed. Please God, just save the baby.  If we don’t do surgery, the baby will die.  How could my body fail me in these last moments? I have been asked countless times in countless doctors’ offices.. I had the most normal pregnancy ever. I ran until I was 6 months along, then worked out most days lightly. Did yoga. Walked the dog. I felt amazing… until I was huge.  But, if I  had not been at a hospital for her birth ( I do know some hella brave women that delivered at home) she and/or I would have died most likely. The fear that something like this would happen again… has sunk in.

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Secondly, what happened after I awoke… is the most disturbing part of the story. The cold, sterile way I found out what was happening to my baby. The intense, sharp pain I felt when they told me she would have no bones in her face, that she’d have surgeries, that she’d have trouble eating and breathing. That she did not have ears. First, they got a lot wrong but had no problem telling me the probabilities and possibilities. No ears, no hearing. Residents and surgical interns spouted terms like I was familiar. Bone anchored hearing aids. Softband. Therapy. Surgery. Implantation. Maybe cleft palette. Not sure. More tests from her incubator. She was alone. I was alone. There were three and then five of them. A swarm of white coats from departments I knew nothing about. Genetics? Why? Ohhhh…

The fact that she was in the NICU was jarring. The fact that I couldn’t physically move to go down and feed her was jolting. The physical pain I had from surgery was heightened by the pain in my heart. The way she looked back then scared me. My initial reaction to hide it… scares me. No one said… she will fill out. No one said, I do believe she has all her cheekbones. No one said anything positive.  I have a lump in my throat now just remembering the hallways that I would wheel down with my mother, who did everything she could to hold it together.  Landon’s start to her life featured a shell of a mother. And I’m not entirely sure I’ve ever processed all that happened. As someone who needs to do that in order to move on, I think it’s about time.

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I like to believe that I am the farthest from that person now. That I’ve risen to the challenges and I’m every bit of the mother I dreamed of becoming. This girl is my light. I watch this angel flourish and think… surely I should be able to do that again. But I do not believe I can until I am done processing what happened that week. Write about it, run in honor of it, give those uncomfortable thoughts and memories the breath and time to heal. To become just a small thread in this tapestry.

So… there it is. My made-up diagnosis that I actually think fits a few other dear friends that I have. Let’s remember to process those darker things with time and love.

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xoxo,

eloise

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Will I get better at this?

We scanned the restaurant for a table. One in the back, I thought, so we can just “be”. We were coming from occupational therapy. An hour where bug slams into mats, sticks her hands in foam, stacks blocks, scribbles chalk, swings in a cocoon and works on her feeding issues. It’s an exhausting hour and that’s just me. 

I had Landon on my hip, nose goopy and running, my huge heavy purse slung over me, two cups, our order number card as I awkwardly pushed a high chair. I noticed a family across the way and a few folks eating alone nearby. One guy smiled knowingly at me. “He’s got kids,” I thought. 

As bug craned her entire body out of the high chair demanding my iPhone, I eagerly gave up just to make the noise stop. Elmo played and I pulled off bites of her pb&j for her; scattered chips on top of a paper napkin. I’m never that mom that remembers to buy those disposible place mats for situations like these. She chomped on a chip. Smeared jelly on her face. Tugged on her bahas.  As she squawked again for a slug from my water cup, I saw them.  Three little heads turned our way. Sisters ranging from 8 to about 14.  Staring.  One’s mouth had parted. Gawking. 

My face burned. My stomach tightened. Immediately, without pause, I glared. A seething glare with squinted eyes and pursed lips. I felt my face flush and realized what I was doing. My instinctive mother lion snarl.  I’m pretty sure that if it were common to growl… I would have. 

Their father was with them but never looked up from his food. Never met my gaze. The oldest girl did and un-phased  she went on to stare more at Landon. My grimace thwarted.  

I didn’t look their way the rest of our meal. I shoveled salad quickly in my face as I tried to get Landon to look up from Elmo long enough to swallow anything. As I wiped off her hands and face, she screamed again.  The girls were closer now as they put up their trays. As they looked again, I faked a smile.  Take that… stupid tweens. 

As we drove home, I thought carefully about my reaction. Will it always be this way? Will my ferocity to protect her consistently give off such rage? Will I get better at this? How is it that my husband doesn’t even notice people when they stare? It never affects him in the slightest. I may never fully attain such a state of nirvana, but surely… hopefully… I’ll be that example for her. More along the lines of “oh… you’re staring, must be because she’s so beautiful.”  Because, my God, she is. 

XOXO,

Eloise

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Sanctuary

I’ve been on this wild ride as described over and over here. Lately it feels like a marathon without any real breaks. It’s the same race all of us mothers run. Same story, different city.  Same maxed out feeling, different tale. Whenever she sleeps I try to work. When she’s at “school” I’ve decided I have to go running or I’ll let my stress do the talking during the day and lose it by 4pm. 

We all have this same sense, working full-time or not, of losing ourselves or pieces of ourselves.  After all, we’re not the important ones. These little people come first as well as husbands or wives. Toes go unpainted, gyms are sometimes eluded. Making it to kids’ bedtimes seems the ultimate goal occasionally or every day.  We add pressure where it might not naturally exist. There is the pressure that comes from losing a job or your faith in your partner. From judging ourselves too harshly for the mothering we’re doing. The pressure to provide. We have all been there.  For me, I create pressure around ensuring Landon’s therapy is just what it needs to be with the right people. On mastering the sensory processing she is currently struggling with.  There is pressure of the ever drifting eye and the internal battle I’m fighting to decide whether or not to operate on it.  The pressure of being present when we play together.  And so on.

On Sunday, after I dropped my mom at the airport, I was so sad as I drove back to the house. As I sat in traffic and Landon whined and people honked and terrible drivers swerved, it dawned on me.  I bought myself a Christmas gift that I had forgotten… one month of yoga.  Hallelujah.  So… the very next day I went in and began my unlimited month.  It felt like such an indulgence. Shouldn’t I be doing something else?  I wondered if my muscles would remember the rhythms. Would I enjoy it here like I did before?  Could I quiet my mind after all we’ve endured in 5 months?

I arrived early and sprawled out my rarely used mat. As I laid down, I decided to try something for the first time in my adult life. I meditated for 5 solid minutes. I remembered my breath and allowed the peace I desperately needed in my head and heart to take over. I saw Landon’s face and smiled. I saw Bo’s face and smiled. My people. All my love. I then made a conscious decision to think of myself. How far I’ve come as a mother and as a person. And I smiled. To love these other people in our lives, we must love ourselves first. I was given that advice by my first therapist at 22 when my parents split, my dear friend died and my boyfriend had broken up with me. This statement has meant so much to me in my life. I’d of course forgotten it. I opened my eyes and did the class and at the end, the instructor read a passage about finding peace in our minds while we practice.  After it was over, I sat quietly and reflected on how much this one class gave me.  I realize that I had craved a type of sanctuary. A place that was for me. I realized suddenly that it wasn’t for me, it was in me. This sounds too philosophical for me to say, but I find that sanctuary in myself when I practice yoga. That is the place where I feel ultimately my best. I’m able to unlock something in  my mind that I am unable to doing anything else. So my promise now is if I cannot go, or cannot afford it, I’ll try at minimum to meditate. After dinner, after bug’s bedtime, that’s my window. My five minutes. My sanctuary.  I don’t necessarily need the beautiful teak floor and candles. The sanctuary I crave is somewhere in my own heart, and the peace provides clarity around what is truly important. Loving my husband and my little girl. Loving our parents. Making sure to tell my husband that I believe in him. Remembering that despite all we deal with, we’ll be great because of each other.

The peace we seek and comfort we yearn for exists in all of us. We just need to find the way to unlock these sanctuaries.

xoxo,

Eloise

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Next up….

Through some diligent digging (read… I annoyed people day and night), I was able to find an OT locally who works with Babynet. Thank God. We start Friday and have another OT that’s even closer that we could see if our first one doesn’t suit us. Hurdle conquered. Mountain of stress surmounted. Or at least replaced with a book where I’m learning the difference between hypo and hyper sensory sensitive. The battle to be waged with Babynet will move into next week or next month.  As we move into the proverbial clear… why is it that more hurdles pop up. ALWAYS. It can’t just be calm in this life anymore. There always has to be some emotional struggle. Some topic to keep me up and induce an addiction to Advil PM.

What is it now? Another eye surgery. Ughh.

We saw a new ophthalmologist at MUSC (the third in her life) and explained how since last July… her other eye rolls back. This means she loses vision in it when this occurs. It happens when she’s tired, sometimes more. We should be patching every day. But it’s been almost a year now and nothing has changed. It happens just as often. Maybe more but honestly I am having a hard time distinguishing exactly how often because her eye openings are slightly smaller because of her TCS. 

Here is the tricky emotional part (other than my baby going under general anesthesia again)… the guy saw her for 10 minutes. That’s it. Then we booked the date for the surgery while we were still in the office. It was so rushed. Too rushed for momma. He doesn’t know her little eye well enough yet. So we’ll be going back- even if he doesn’t need to see us.  Also… and this is where my voice catches in my throat…since it’s elective.. it feels like it’s up to me. It feels like I have 50 tons of pressure sitting on my shoulders. When she woke up the other day she gave me this incredibly sweet smile and laid so still staring at my face. I broke wide open at the moment and ever since… WHAT if something happens to her. I chose the surgery. What if…. And how do I go through it again?  Bo thinks since I’ve done it once, this should be easier. Nope. I’ve now cried once a day since Thursday.

Here’s what I know… Her vision is impaired in this current state. She can’t fully focus in speech therapy when that eye drifts. Therefore…when she starts school, she’d most likely fall behind.  Surgery could fix it. It could also mean the eye muscle he moves slips and falls off. It could mean one or more surgeries to fix this surgery. It could mean an infection in the eye… or worse… from the anesthesia. It’s with a different surgeon. One I don’t know.

So… as I sink into my Sensory Smarts book, I am balancing my time with googling DVD surgery and this surgeon’s name. There seem to be emotional land mines that I’m just learning to coexist with. When it feels like too much, I run to the ocean. I go to the gym so my body feels physical pain to try to match the panic I am feeling.

Anyway… time to call it a night. Sending y’all love.

xoxo,

eloise

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