Tuesday, September 19, 2017

First day of school 2017-2018

And we're off!

Camille started preschool today (delayed two weeks thanks to Hurricane Harvey). She was beyond excited and didn't think twice about walking into class. She would go to school every day if I let her! I had to basically beg her to give me a hug before running to her seat.

Clara goes to school year-round, thus doesn't have an official "first/last day of school." In an effort to track her growth school year to school year though, I started taking pictures of her last year, just like I do Camille.

Meet the teacher on Monday 9/18/17
 And here's my attempt at "cute front door first day of school pictures" . . .






A look back at last year . . . Man, take me back! Honestly, I love each stage/age more and more, but I do miss these tiny, baby faces.



Praying for a new school year full of growth, maturity, new milestones achieved, joy, and a blossoming of new relationships.

Tuesday, September 12, 2017

Even in trust, there's triggers

We are blessed that in this massive city of Houston, there's one other family parenting a child with Cohen Syndrome. A family that has a daughter just three months older than Clara.

Ironic?

Or maybe a God thing. :)

After many recent attempts and cancelations due to sick kiddos and the like, we finally were able to collide our calendars for a dinner get-together.



It was so good for my mama soul.

Because as much as my family and friends support and cheer on and stand beside, unless one is living the day-to-day life of a child with special needs, the ability to fully understand and relate is just hard. And honestly? It's comforting to know that someone else understands every. single. bit and is able to say "Oh goodness, my girl does that too," or "Us too!" or "What do you do about x, y, or z?"

This get-together came at the perfect time for me. The perfect time meaning the start of the school year. The school year when my sweet girl should be entering Kindergarten, but instead she remains in the same class that she entered 2.5 years ago at a school for children with special needs.

I'm fully trusting and confident in our school choices for Clara. It is where she needs to be, no doubt. And I'm fully trusting of God's overall plan for her life. One thousand percent.

Even in trust, there's triggers. 

After a long, hard meeting yesterday with Clara's BCBA, regarding a new plan for potty training (please just pray) and potentially transitioning her to a communication device/iPad app from her PECS book, I stupidly opened Facebook.

You would think I would have known better.

Picture after picture of children on their first day of school, kids starting Kindergarten, etc. etc. etc.

And I broke down in tears because here I am discussing programming for how to teach my five year old to void on the toilet, how to help her best communicate, and agreeing with her lead therapist that no, she is not ready for a less restrictive environment, all the while moms of typical kids are distressed because another school year is starting.

In 100% vulnerability I wanted to scream, "Do you not get what a blessing this is, your kids going off to school? Your kids are starting at a typical school with typical teachers in a class full of typical peers sitting in a typical lunchroom and playing typically at recess and will continue this year, all year, to learn all typical, age-appropriate, educational targets, and you are crying?"

All the while I'm crying because who knows if my child will get that experience.

All the while I'm crying because we are working on skills we've been working on for years. Skills like "Pat the table," pointing to objects, "Wipe your face," "Show me your eye," "Walk with me," "Look at me, Clara," and other targets such as completing a 3-4 piece puzzle, responding to her name, drawing a straight line, stringing a bead, using a fork and spoon, and the like.

I'm crying because while I fully trust, life around me continues and will continue to be a reminder of how different life feels for our family at times.

Through the tears the Holy Spirit convicted, as He always does, ever so gently.

Just because you're dealing with a certain level of hard doesn't mean the people around you, other moms, aren't entitled to their own level of hard. Hard is hard and looks different for all of us. Feelings are feelings and regardless of circumstance, feelings are real for all of us. 

#ouch

#shameonme

All the while I sit crying about my child's lack of milestones and delayed entrance into the world of typical school, another woman is crying because she so desperately wants a child to call her own and is waiting, childless, and looking at my life probably wanting to scream, "Do you not get what a blessing this is, the fact that you have a child at all?"

#perspective

There will always be our hard and another's harder.

I asked for a little bit a lot of forgiveness, wiped my eyes, shut down Facebook and instead pulled up the pictures from our dinner date. The tears soon replaced with a smile.




These two are so stinking cute. Seriously.
Their mannerisms and facial expressions and habits are identical. Cutest kids I ever did see. 

When I look at these pictures I see love, joy, peace, and an abundance of happiness. Four qualities that most all of children with Cohen Syndrome possess. Four qualities that at their core, are more important than any typical educational milestone.

One of the symptoms of Cohen Syndrome is, and I quote from our paperwork, "a cheerful disposition." Pretty amazing, right?

What a gift.

I've heard that when parenting a child with special needs one must be on their guard against these types of triggers (as in, don't open Facebook on what would have been a milestone day), and that it's completely likely these triggers will come and go throughout our lifetime because there will always be our reality vs. another's reality.

Even in trust, there's triggers. 

But trust is what keeps me moving forward, head held high, regardless of circumstance.

Trust is what helps me wipe our eyes, smile with contentment and feel utter gratitude for the gifts God allows my friends to experience.

For the gifts He allows me to experience.


Brandon texted me this picture the other day.
I replied, "Cookies in bed?"
To which he replied, "She asked for them."
Haha, love them!

Sleeping angel 

Tuesday, September 5, 2017

Finding The Light In Hurricane Harvey

At this point, Hurricane Harvey needs no introduction. The past ten day or so are now a total blur. Endless hours indoors (I didn't leave my house from Friday until Tuesday morning when the storm hit) and eyes continually glued to the news, days just begin to run together. As a means of documentation, a few pictures from our experience with Hurricane Harvey. 

Thursday, August 24th
Here we are Thursday evening walking home from a neighbor's house. At this point I had prepped us for a "storm," and by that I mean I bought an extra case of water and packaged snacks and knew we most likely would lose power for a few hours, maybe a few days. I had no idea what was ahead. I don't think anyone did. A few school districts had canceled school Friday and Monday, so I began to question if I should chance it with Clara as her school wasn't yet canceled. My biggest fear was driving in heavy rain Friday afternoon for pick-up. 


Friday, August 25th
Brandon went to work Friday but cautioned me to keep Clara home from school just to play it safe. (Her school ended up having early release at noon so that both students and employees could get home before the rain picked up.) Nothing extraordinary seemed to happen that evening weather wise, so we tucked the kids in bed and eventually called it a night ourselves (after prepping flashlights of course). We slept on and off despite heavy rain, wind, and continual flash-flood and tornado alerts on our phone, but were up for the day rather early. How the girls slept all night I will never know! 

Saturday, August 26th
Saturday was mild, weather-wise, with not much happening during the day. We stayed home most of the day coloring, eating, and the like. Brandon planned ahead and ordered a huge coloring project for Camille (see below!), knowing we would be stuck inside for several days. Good call, B. Saturday evening the weather alerts came on strong and we took shelter several for tornado warnings times throughout the evening/night. 





Clara was so curious about Camille's coloring project. She would plop down as if she wanted to participate, but quickly changed her mind when I would prompt her with a marker. :)



Sunday, August 27th
After a crazy Saturday night, we stayed put Sunday even though the weather seemed to lighten up quite a bit. We spent the day coloring, making crosaints (hurricane won't stop my husband's kitchen skills), reading (me), watching shows, and the Oliver's stopped by at one point to say hello, which was a nice surprise!





Camille made sure I had a cuddle buddy :). . . 




These were not awful, incase you were wondering. . . 




Glimpse of the tornado activity around Houston . . . 



Monday, August 28th
At some point on Monday a voluntary evacuation was issued for our neighborhood. The city officials expected the Brazos River to crest at an all time high of 59 feet and they were predicting this to happen on Tuesday evening. While we did not expect to have water in our home should this happen, based on the elevation maps, we didn't think it wise to get stuck (for what some were predicting would be a minimum of 4-5 days) as it would be impossible to get in/out of our neighborhood if the river crested at that height. We watched the news continuously, weighing our options/pros/cons, and eventually went to bed to make a final call the next day, just in time for the weather to gear up again. 

Monday also included some bird house painting . . . 



And lots of cuddling . . .


And croissant eating . . .


This happened not too far from our neighborhood. And yes, it was/is legit. 



And just to give you an idea of the weather maps we were staring at for days on end . . .






Tuesday, August 29th - Friday, September 1st 
Tuesday morning we decided to pack our bags and evacuate to my parents house a few minutes up the road. While they were also issued a voluntary evacuation, we were much less likely to get stuck in their neighborhood should the river crest as expected, so we figured this a safer option than staying at home. My brother, sister-in-law and their kids and a sweet, older couple from church evacuated with us and it quickly became one big family hurricane party. To say that Camille was in cousin heaven would be an understatement. Also, by God's grace, we never lost power the entire hurricane experience, neither at our house or my parent's. 






Clara was up from 1:00-6:30am the first night at my parents house, so Wednesday morning I found Brandon and Clara in the media room, like this . . .





It continued to rain on and off those few days, but intense weather alerts seemed to die down (or maybe I had just silenced my phone at that point, I don't recall).

It was at this point that the heaviness of it all really began to set in for me. Lives lost, thousands and thousands of homes and neighborhoods partially or completely flooded. So many displaced. It was truly unbelievable and the sights on the news sometimes unbearable.

It appeared Houston was literally underwater.

Several times Brandon and I turned to each other to ask, "If that was us, waiting on our roof to be rescued, how in the world would we do that with Clara? How would we keep her on the roof? Camille would be scared but she would get it. HOW would we do that with Clara? How would we sleep with her at a shelter?" Cue the tears for all the parents of a child with special needs who were not tucking their child into their own bed at night.

That Thursday I finally left my parents house for the first time since arriving Tuesday. Stores were slowly opening up in their area, so we took the girls to grab a quick lunch, buy a few things at the grocery store, and drove through our old neighborhood (which had a mandatory evacuation).

On Friday morning, September 1st, the Brazos River crested (4 ft below the original prediction, see picture below) and thus, we were safe to head home.


I woke Saturday morning with that heaviness, again. Survivor's guilt is a real thing, y'all.

We never lost power.

Our house didn't take on water, at all.

Both the streets in front of our house and my parent's remained totally passable, the entire time this tragic event was unfolding.

I felt as if I was spared the horrible and instead gifted eight days with my people, while thousands were already knee deep in ripping up carpets and hardwoods, gutting kitchens, and creating mile long lists for insurance adjusters.

This is where the mom in me felt powerless and torn. I wanted to help (immediately), but I couldn't drop everything and volunteer for days on end. Because small children.

So I did the only thing I knew to do that Saturday morning . . . I told Camille we were going shopping for families in need and asked if she would like to invite a friend. Because while I couldn't gut a kitchen in that moment, I could shop. And that decison, while it feels small in the grand scheme of the need, is still doing something, it's still taking action.

So we did!

We picked up Camille's buddy, Zane, and headed to the store to shop for relief supplies. An hour I will never forget.






Clara was there, too! In her own cart. :)


Later that day I turned the corner and caught Clara playing with her shadow. The image spoke so clearly to me in that moment, a true gift, so I grabbed my phone to video. 

I posted the video on Instagram with the following . . . 

It's been an emotional week. To see your city underwater, homes destroyed, and children of all sizes being rescued by boat, well ... emotionally draining doesn't quite cut it. It's crazy to feel so grateful and heartbroken at the same time. Grateful that our house remained untouched by water, our family of four (and all of our extended family) is together and safe, and heartbroken that so many people are starting from the ground up. I love this image of Clara. I came down the hallway and found her playing with her shadow, with light peering through the window. She's my little reminder to always find the light. Regardless of what's going on around us, we can find the light. Light is always there, regardless of circumstance. The key is we do have to actively look for it and choose to embrace it and engage it, even in the unwelcome storms that come and go and come again. Love this girl (and all her life lessons) so much. #houstonstrong

video

I don't have experience with a flooded home, but I have faced my own unexpected storms, as many of you know. So this is where we are, where I am and where Houston is as a community . . . searching for the light in the aftermath of the storm. The rain has ceased but hearts still hurt.

We don't understand the "why," which is often the case with such tragedy, but we will keep focusing on the light, focus on being the light, and we will all emerge stronger than before.

#houstonstrong

#hurricaneharvey
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