Fashion Friday!

A day late… forgot to hit “post”! Oops! XOXO

Outfit One: Romper- Elephantito (found on ebay!!), Shoes- Robeez (last year), Baha- Cochlear, Necklace- The Dollar Tree 🙂

Outfit Two: Top- DVF for Gap former romper that I cut to be a t-shirt., Leggings- Little Four Clothing on etsy, Shoes- Converse, Baha- Cochlear

Outfit Three: Tunic Top- Used to be a dress when she was 9 months- Gap, Leggings- The Little Spoons on etsy, Shoes- Salt Water, Bahas- Cochlear

Outfit Four: Genuine Kids for Target (!!), Shoes- Saltwater, Bahas- Cochlear

Love y’all!!

XOXO

Eloise

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

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

Bright moments…

There was a bright spot in our wild and crazy day.. this morning bug truly tried to talk. She imitated and occasionally said a word back to our fabulous therapist Sarah. It was the closest anyone has gotten to getting this girl to chat it up. She babbles all day long, sure, but actual language has escaped us so far.

I woke up this morning with yet another head cold or flu. As I texted one of my closest college friends, tears filled my eyes as I described how I’m feeling these days with everything going on.  Then.. as therapy started… Landon started simply shining. She smiled as she stammered “onion, anana (banana), nnn (in), and "i wan(t) it” as we placed plastic fruit into a bowl.  Sarah and I both had chills as we silently high fived one another. A breakthrough.

I am not an outwardly religious person. I’m pretty private when it comes to my faith. This morning though, while gathering these collected moments of brightness, it was so clear that all of you praying for us were changing things. These prayers sent out there into the void were heard. 

There are bright moments hidden amongst these long days when we’re so dog’on tired. We just have to look for them. They are placed there to give us more hope and strength to emotionally show up for the tough times. To face our fears when we cannot imagine mustering the strength. No matter what you are struggling with… don’t forget to look for these moments. Don’t forget to have faith.

XOXO,

eloise

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

Fight for the right…. for therapy

It’s been a rocky week for me.  Processing another layer being added to our lives.

To lay the ground work- Landon sees one therapist here at home 6x a month and one therapist at MUSC in Charleston 2x a month.  We have been granted services (after two freaking months) through Babynet, which is the early intervention program in the state of SC.  It provides services for children under three years old, meaning the therapists bill insurance companies first and then Babynet picks up the tab on anything they will not cover or anything after they pay their portion.  After three… I’ve been told you can get services through the school system. 

The first MAJOR problem of the week is to learn that Babynet is SUCH a horrible mess in this state that hospitals and therapists all over the state are beginning to rapidly decide NOT to work with Babynet. Leaving families all over this state without any services. Without any help. Most of us CANNOT afford private therapy out of pocket. Our insurance company will pay for 40 sessions per year. Period. We have speech therapy 8x month. So half our year would be out of pocket without Babynet.  What’s worse is most people in this state just shrug when pressed as to why MUSC and other major providers of services are dropping Babynet… “it’s just SC.. what do you expect?”  I, as a mother of a child who requires services, EXPECT the system not to fail my kid. I expect New York level of service. I expect Babynet to work. It’s a federally mandated program after all.  SO… make it work dammit.  Instead, I feel like one very small person in this battle. It’s not up to me. It’s not up to the thousands of parents this is going to fail. But there it is… the largest children’s hospital in this state will not work with the early intervention program. The best speech therapist and one of the only AV certified therapists in the state will not work with them. So, we like so many others will have to walk away. We cannot afford our life and that much private therapy. AND…the amazing service providers (therapists) that do work with Babynet ARE NOT BEING PAID. Ours… not paid since last summer.  This is the definition of broken. And it sucks. We’ll add more services at home and will be fine… I think. But that wonderful woman needs to be paid. Babynet needs to be fixed. 

On top of this revelation, our fabulous home therapist mentioned Landon needs an Occupational Therapy (OT) evaluation. She seems 10 for 10 for  sensory-related issues. These early signs include crashing into things on purpose, falling off of things on purpose, enjoying being under things or in tents, aversion to textures in foods, grasping one thing in each hand consistently, banging a lot, experiencing things with her feet first- books sometimes, walking on her toes, falling and crashing as just mentioned but with no crying, an obsession with water, flipping constantly through books, and showing signs of early ADD. A lot of this can be brushed off as her being a toddler. But once I read about sensory sensitivity and OT, it clicked. Landon’s sense of hearing is impaired, some of her vision is impaired wouldn’t it make sense for her other senses to be heightened? Of course it does.  Oh and the OT therapy in Georgetown County (Nextstep). DOESN’T TAKE Babynet either. Of course they don’t. 

But after the research, after learning that we needed most likely to add another type of therapy to our lives. Add another type of therapy to master at home… I lost it.  How? What? More? When?  I sobbed to Bo. Then to his dad. Then on my own.  Between Babynet and OT.. it’s too much. To have moved here and feel like things are getting significantly harder. What was I thinking? 

I thought I’d be strong enough after this year and a half to handle new therapy. New information. Adding more to the proverbial plate. But instead… I crumbled. We have to apply for secondary insurance. Tefra. It’s complicated and feels awkward and the least easy thing. New York made it easy. Sign here and boom.. no more conversations about payment or services. It was seamless. Easy and a wonderful thing for a raw parent to experience. But not here. 

I’ve written a list. To literally do things one step at a time. Do the OT evaluation. Fill out Tefra paperwork. Drive it to Georgetown. Make list of how many sessions we’ve had this year. Stop seeing MUSC at 40 sessions.  Wait until we know if approved for Tefra. If we are, resume MUSC. If not, up sessions at home. Reapply for Tefra.  Find an OT that takes Babynet in the meantime. Do they exist? 

Then breathe. This is a marathon. Not a sprint. I’m strong enough. Repeat that phrase. It’s for Landon and that is all that matters.

Pray for us though. Pray for my strength. These days I just don’t feel like I can fight this system alone. After that list come the letters to our elected officials.  Maybe a visit to their offices when I’m home in VA. A part of me feels like I’m just getting started…

This face makes me remember it’s all worth it. 

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xoxo,

Eloise