Tag: oh baby

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

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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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Sensory Processing Disorder…. Processing

We don’t even have a diagnosis yet. There hasn’t been an evaluation. But… after reading 100 pages in my new “Raising a Sensory Smart Child” book. I know it in my bones. There will be another diagnosis.  She doesn’t fit every description. This might go away after a year or two of occupational therapy.  But I feel suddenly like I understand my 18 month old daughter better than ever. And that’s truly saying something since I’m with her 90% of the day and .. well.. I’m her mom.

After reading this book and many sites, I know now that her brain is wired differently.  Huh. Falling constantly and not crying. I used to think, “man, she is so tough.” Now I understand that it feels good to fall. To bang into things helps her process her body in that space. I know… I sound like one of those people wearing hemp selling homemade clothing. An obsession with water. Laying in her bathtub and screaming when removed. Hands always in the dog’s water bowl. Jumping into the pool at a very young age. I used to think “awesome, she’ll be a swimmer.” Now I understand that the pressure of the water on her body feels great. She can process sounds and images better after she does these things.  Aha.

I’m a little shaky reading this book. Unlocking secrets of yet another world I will now join. I’m a little uncomfortable with the close proximity of Autism. I have this nervous butterfly effect happening in my stomach. What will this path lead to?  I do know… this will lead to helping Landon process her world and allow her the best chance at doing well in school in the future. She’s so young, so starting now is the BEST timing.

So in adding another therapist to our lives, I’ve also added school 1x or 2x a week when we can. Regular, day-care, 2-year-olds running around a playground, eating goldfish, coloring, laughing, regular school. She is 18 months. The word regular and normal are somewhat ridiculous things to focus on for a parent. Most of the toddler parental set focus on “genius” and “charter school” and “extraordinary”. More of “watch how brilliant she is at stacking blocks”. I, on the other hand, love “normal” and “regular”. I want Landon to always, if we can, be mainstreamed in school. I do not want special schools for her. Nor special treatment. She will have therapy. She will have other appointments. I do not want her thinking that makes her different.  Waiting rooms aren’t normal so we’ll make sure playing on a playground for three hours on Tuesdays are. Balance it out.

She is smart. Now we need to make ourselves and her… sensory smart. Off to read more. And google more. And apparently make carrot, acai, flax, chocolate chip muffins.  Hmmm…

xoxo,

Eloise

Eloise ThomeLeave a comment

Fashion Friday…. day late oops

This post was meant to go live on… well… Friday but for some reason Tumblr was fighting me.  Sorry for the lower quality photos too… been one of those weeks.

Outfit 1: Sweater- Jojo Maman Bebe; Leggings- City threads; Socks- W&L 🙂

Outfit 2: Romer- Zara (please note there are no snaps on the bottom of the romper…you have to fully undress your squirming toddler when you change her….. ahem… bad call Zara)

Outfit 3: Swimsuit- Gap

Outfit 4: Top- Gap (old); Leggings- Little Four Clothing; Necklaces- her own

xoxo,

Eloise

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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

Eloise ThomeLeave a comment

A lesson for the heart… on Valentine’s Day

Since my first post on this blog, it’s really just been my voice you’ve heard. My perspective.  When I shared her birth story – it was also one-sided. It’s been 17 months and I’ve never shared Bo’s story. Truth be told…and this will sound shocking to most… I didn’t know his story. It is almost absurd to admit- I had never asked what happened to him that day. And I didn’t know what made him so strong all the days after. 

Bo has supported me in so many ways since her birth. Allowing me to be the emotional one, while he remained the stoic, grounded one.  Sometimes, I would mistake his grounded and centered reactions for some inability to share his emotions. How could a parent not cry when their child went under anesthesia? I just didn’t understand it. It would be an undercurrent to our previous tension. Yet, I never paused long enough during my emotional freak-outs to ask him.  

My sweet husband surprised me with a wonderful night out for Valentine’s Day. We got dressed up and drove over to one of our favorite places in this little beach town. We laughed and drank and told old stories and spent time talking about our new house, Charleston, our parents, and New York memories. We then pivoted to our family. We had talked earlier in the day about the possibility of a second child. It was a hard conversation- one I’m struggling with daily. And as we revisited the topic, I finally asked Bo how he was able to be Landon’s dad and never, ever break down. To not find things as challenging as I do. And for the first time I asked and really listened… finally… to my husband as he told me his birth story. His version of Landon being born and what his day was like September 6th.  

I sat there stunned with tears in my eyes and so much (SO MUCH) love in my heart. He told me what it was like when I went in for emergency surgery. When I was wheeled away from him. What it was like to wait in full scrubs behind a curtain for what felt like an eternity. Nurses coming and going – doing their work with other c-section babies. He described, with a quiet voice, what it felt like for 10 doctors to enter the room and how it felt when the head NICU nurse told him… “She has Treacher Collins. You’ll notice her ears. She has some deformities. She will be moved to the NICU as there’s a lot we don’t know yet.” The word deformities stung. Is that really the word she used for our new baby girl? He said that everything became blurry.  Treacher? Teacher? Something… Collins. He called my sister and realized he didn’t have the language to describe what our little baby had, what she’d face in her young life. He described how he walked into the operating room and I was unconscious. I looked like I could be dead, he thought. Then in the corner of the room, he saw her in the tiny incubator. He saw her with her hat on, pink and kind of squished. Then he saw her ears. He saw her eyes. And his heart broke wide open. 

He told me how he walked to get food with his dad early in the morning after I’d called and demanded he come back. They walked a few blocks and there on an Upper East side street, he sat down and wept. For all to see and hear. He openly wept on his dad’s shoulder. He cried for himself, for me, and most importantly for Landon. He told me that he specifically cried for her and what she would face. He then said something that I am still processing. He told me since that breakdown on 70th Street, he decided he would never think of her differently again. Never feel sorry for her. Never shed a tear over what gifts she’s been given. He would worry, but not because she has Treacher Collins. Not because she has hearing loss. He decided this would be his way to make sure she never felt sorry for herself. 

I learned that night why we are such amazing partners in this journey. His perspective since her birthday will bring my feet back down to the ground.  His lightness during the heavy times will lift us up.  I learned the most valuable lesson of our marriage on Valentine’s Day. That asking and listening to my partner is just as important as listening to myself. My view during this wild ride of parenting isn’t the only one that matters. 

Since leaving the intense New York world in which we lived, we’ve had a rebirth in our marriage. Everyone has roller coasters and I’ve shared some of ours on here. And now our love for each other is just as present as our love for Landon. We focus on each other more than us as individuals. This love and connection has always existed… from our very first date… but our journey has been a hard one at times. But Valentine’s night sparked something so important… a conversation that should have been had over a year ago. This lesson has been one of the most important ones I’ve learned on this journey. To listen. To ask how he feels. And to remember his strength when I feel weak.  What a great night.

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Xoxo,

Eloise

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