The Practice of Persistent Thankfulness

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Here we are, the week of Thanksgiving, and depending on where you are or what's on your plate or what you are walking through, this season of turkeys and pumpkin spice lattes might not stir up that spirit of thanksgiving everyone is talking about. In fact, it might just make you want to swell with bitterness. Or anger. Or self pity. It is easy to walk around, eyes moving from side to side, focusing on what others have been given and naming all the blessings that have painted their path, when you feel your path is in desperate need of a fresh coat of color.

If I have learned anything over the past seven months, it is that God's goodness is not dependent on what happens to me. My situation might feel life shattering, but there is so much life giving good that the Father is offering, even in the middle of my pain. But I have to search for it and choose to recognize it. I have to keep my eyes on Him to keep my eyes from lingering on others. And there is only one way I know to keep my eyes upward during these difficult seasons. 

The practice of persistent thankfulness. 

What do we do when we want to master a new skill or life goal? We practice. We don't just wake up one day a better cook or able to run those three miles. No, day after day after day we practice. We put in the time and effort, even when we don't feel like it. We proclaim "This is important to me and therefore It is worth not only my time but my physical and emotional energy."

So when I find myself in midst of these difficult seasons, I have learned that I have to keep coming into His presence with thanksgiving, even when I don't want to. My feelings will eventually catch up with my actions. There is always good to be found, I just have to train my eyes to see it. And taking the time each day to thank God for these little blessings, may actually provide the long-awaited key He uses to unlock these difficult seasons and unleash His peace. 

Psalm 100:4-5 encourages us to enter His courts with praise and reminds us that His faithfulness continues through all generations. All generations walk through valleys, but His faithfulness is enough.

Psalm 107:22 reminds us to tell of his works with songs of joy. There is no disclaimer in parenthesis, nothing that states "but only respond with joy if life has felt easy and you have encountered no hardship." No, the verse just says it plain and simple. Tell of his works.

God is good no matter what season we find ourselves in. His love cannot be measured for however much good or ill we see today. God’s love is measured by the sacrifice He’s already made. We have been reconciled unto Him. And that has made all difference. So I will give thanks.

So I must work at this goal to be persistent in my thankfulness. I must train my eyes to see the good. I must train my mouth to tell of his faithfulness, his good works. And I train by sitting in his presence and reporting back to him all the joy I find in a day. I write it all down and then offer it back up. 

Joys such as. . . 

My husband.

My girls. 

My health.

My support system.

Good food that I enjoy everyday.

A roof over my head.

The hope of heaven.

Warm coffee.

Long hugs at the end of the day.

The giggles from my children when they jump on the bed.

The peaceful sound of listening to the rain.

My husband's job.

Health insurance.

A car that gets me from point A to point B. 

The look in my children's eyes when I greet them in the morning. 

Healthy babies being born.

Other special needs parents who truly get it. 

The smile of a stranger in passing.

Crisp air that welcomes outside play.

I take this report and give it back to God with an "I don't deserve any of this but I thank you for it." And slowly but surely the key that was once hidden, is found. My feelings catch up and my difficult season is viewed in new light, with that much needed fresh coat of white. 

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Are you walking through a hard season? What joys can you report back to God? How do you practice persistent thankfulness in your own life?

Have a great Thanksgiving holiday!

(Apologies for the wonky font sizes. Not sure what is going on and I can't seem to figure it out. Shocker.)

Weekend Links 11/20/15

So . . . Camille's hair decided to turn curly overnight. I love this and hate it. Love because she is so stinking cute and hate because well, my hair doesn't do such things. Is it sad that I am jealous of my children's hair?? It just doesn't seem right that they can live in this city of 100% humidity and their hair actually LOOKS BETTER, when mommy's just looks like she rolled out of bed.

Also, please note head in hands. . . 5-7pm is hard on us all, dear one.

A few links for weekend reading. Make it a great one!

Life
The Stories We Tell 
Grateful (By Comparison) 
An Invitation to Healthy Busy - love the distinction here between busy or hurry
Why You Might Be Missing The Life You've Always Dreamed Of

Special Needs
New to Sensory? Where Should a Family Begin?
6 Tips To Help Kids Avoid Sensory Overload This Thanksgiving 

Loss

Surviving the Crisis: 6 Ways Couples Can Thrive in a Season of Crisis, Trauma, or Grief

33 Things I Want To Remember in My 33rd Year

Today I turn 33 years old. Life keeps on keeping on, no? Year 32 marked my hardest yet, but even still, it has been a year of lots of joy and lots of good and lots of growth.

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So for today, a list of 33 things I want to remember heading into my 33rd year:

1. Laughter can bring hope and healing. Laugh often.
2. Comparison not only steals my joy but it taints my soul.
3. I am the most content when I keep my eyes moving up and down, not side to side.
4. There is a difference between being busy and being in a hurry.
5. Always say yes to spontaneous coffee dates.
6. Death might take a life but it is not the end of the story.  
7. Sometimes the to-do list, the laundry, the dishes, and various self imposed "tasks," can wait. 
8. Online communities are amazing, but they will never replace real life friendships. 
9. God is always good to me. His goodness is not dependent on my circumstances. 
10. There is no timeline for grief, no clear cut formula or grief map detailing just how long one walks this road. Be gentle with myself and with others who are grieving. 
11. When a friend is hurting, just show up.   
12. Haagen-Dazs Peanut Butter Pie is worth every penny (and every calorie). 
13. Sometimes God asks us to walk the desert but He never asks us to walk alone. 
14. Life isn't always black and white. Sometimes there is some grey. Embrace the grey. 
15. Peace doesn't mean the absence of pain. 
16. Faith doesn't mean I will always understand. 
17. Don't forget the powerful friend and guide that is the Holy Spirit. He is a gift. Tap into Him.
18. When I accept Satan's lies as better, I am choosing to miss out on God's best.
19. Toddlers are crazy. The End. 
20. For The Love by Jen Hatmaker is golden. Read and re-read and re-read. 
21. Light always wins. Darkness tries to overcome, but light always wins. 
22. Letting my kids play in the rain is always worth the mess. 
23. There is a difference in being happy and being joyful. 
24. I never regret a workout. 
25. There are days when small children temporarily lose their mind. It's not me. It's them. 
26. God always meets me in my pain, but I must extend the invitation. 
27. Arts and crafts and like things are not my gifts. Just say no. 
28. Social media breaks are so good for my mind and my soul. 
29. My response to disappointment says a lot to others about what I believe about God. 
30. If I pray for patience, don't be surprised when God grants me opportunities to live out said patience. (Aka witching hour. Every. Single. Day.)
31. People will never meet all of my needs. If they could, there would be no need for my God. 
32. Stop. Slow down. Look people in the eye. 
33. God can use a tiny life to change, for the better, a small corner of the world. 

Thank you, God, for another year to enjoy your rich blessings and the opportunity to grow and walk with you through whatever highs and lows you place in my path. May I welcome your path, wherever it leads. 

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Clara 3.5 years

Earlier this month Clara turned 3.5 years old! I thought it would be fun (and beneficial for the sake of this mommy's memory) to dedicate a post to our biggest girl at this point in her development. Throwing it back monthly update style with a few new categories that are part of her daily life today.

Loves. . . riding carousels, watching Daniel Tiger, swinging, bouncing on her bottom, snuggling in mommy and daddy's bed, playing in a big bed of pillows, light up toys that play music, taking a bath, chewing on anything and everything, watching twinkle lights, running over to us and snuggling on the couch when we yell "Cuddle Monkey," eating berries and drinking milk, watching fish swim in an aquarium, climbing the ladder and sliding at school, exploring wide open spaces, being tickled, "playing" the piano, and just being too darn cute for words!!

Does not love. . . the happy birthday song, loud/unexpected noises, when we have to clean her face after a meal, when Camille gets too up close and personal, when Camille is too loud, walking long distances, eating vegetables (although have no fear, we sneak em in!!), and kids screaming.

Sleeping habits. . . She no longer naps on weekdays due to her school schedule, but occasionally naps on the weekends. During the week she goes down for bed about 7:30pm and wakes about 7-7:30am. It is common for her to wake up in the middle of night, about 3-5 times a week, and just play in her bed until she gets sleepy again. She is usually up for 1-2 hours and then just falls back asleep. We hear this is a common issue with special needs/Cohens children.

We transitioned her to a toddler bed this past weekend. It is going as expected. Friday night was awful, Saturday night was awesome, and last night was just O-K. I took lots of pictures and documented the entire thing the past few days, but you know that thing when you think you've uploaded pictures from your phone onto your computer so you then delete them from your phone but they aren't really on your computer for some odd reason??? Yeah . . . that. Post to come. If I ever find my poor, lost pictures. 

Eating habits. . . She is a great eater! Her favorites are any type of fruit, especially berries, bananas and/or avocados, noodles w/ spaghetti sauce, ravioli, and chicken nuggets/meatballs.

Development. . . She is working so hard, all day, everyday. She has a long list of goals, but here are the most pressing: fine motor (things like using her fork independently, holding a pencil and scribbling, etc) gross motor (climbing stairs and like tasks), communication (responding to name, responding to basic directives, making choices via pointing and PECS), peer interaction, and mental comprehension (identifying matching items in a group, identifying family members in a group, etc).

Daily routine. . . During the week I wake her at 7:30am if she is still asleep, she attends school from 8:30am - 3:00pm, then home to play until dinner between 5-5:30pm and bed around 7:15-7:30pm. Weekends are more flexible since she is able to nap for a few hours and stay up later in the evenings.

Private therapy schedule/Regular Dr appts . . . Weekly speech therapy where each week she rotates working on PECS and oral motor function (well, until a few weeks ago when insurance said no more sessions until 2016, not ok, blog post for another day), quarterly occupational therapy or on an as needed basis, and 6.5 hours of ABA therapy a day via school. She sees her eye doctor every three months to check for retinal dystrophy, and also receives the VEP eye exam every six months.

Adventures. . . CT trip in October, field trip to Dewberry Farms with her class a few weeks ago, and upcoming Thanksgiving and Christmas festivities with both sides of the family!

And another throwback. . .  to baby Clara. . . HOW WAS SHE EVER THIS SMALL???

Happy 3.5 years, Claire Bear! You are pure joy!

Weekend Links 11/13/15

The weekend is here which means a little bit of link love for you. . .

Life
When She Gets a 'Yes'
The Key to Simplifying Your Digital Life
Creative Disillusionment: "If I Had a Different Life"
One Lie that Will Shut you Down (AMEN!)

Loss
The Family Photo You Can't Prepare For

The weather has been amazing the last few days so Camille and I have been taking full advantage. Lots of trips to the park this week! Yet not without loads of bug spray. Mosquitos, you can just move along.

Clara fell asleep on the way home from school with her chew beads necklace in her mouth. Silly girl.

A few Clara/mommy selfies. . .

Y'all. . . Clara came to the car yesterday with these pigtails. I was dying. Do you see how long her hair is, and how perfectly curled? One of her new-ish teachers loves playing with Clara's hair and everyday, right before dismissal, takes her to the bathroom to redo her hair in a new and unexpected way. I love how much they love my girl.

How is Thanksgiving fourteen days away? Also, how in the world am I turning 33 next week? 

Don't Worry, You Won't "Remind" Me of My Loss

Since losing our son seven months ago, friends and readers have come to me sharing that their friend or family member has also experienced such a loss, and with the burning desire of wanting to reach out, but not knowing exactly how to go about doing so without scraping an already open wound.

Questions and thoughts like the ones below are commonly presented to me . . .

How can I help?

What is the best thing for me to do without causing additional sadness?

I really want to check in but I don't want to make them cry, so I have just been giving them some space. 

I have been praying, but I'm hesitant to ask, because I am worried I will awaken their pain. 

And I understand this way of thinking. This used to be my approach. I used to think this same exact way before holding Chance in my arms, studying his face so intently because I knew the moments with him were few. I used to keep grieving mommas and wives and families at a distance because goodness I don't want to be the cause of any more grief. I surely do not want to be responsible for more heartache.

But dear friend of friend who just experienced a traumatic loss, let me be clear if I may, as one walking on the other side. Please don't hesitate to ask. Please don't hesitate when you feel the urge to call or text or seek out that loss mom or dad in person. Please don't hesitate to say their angel child's name out loud. Hearing their child's name is music to their ears. Beautiful heavily music. It is refreshing and reassuring knowing that while our children aren't living on this earth they are living on in the minds and hearts of those around us.

And while I understand that you are concerned your words might cause tears to swell, please don't worry. . .

You won't remind me of my loss. 

My loss is a part of my everyday, just as my living husband and children are a part of my everyday. Loss just becomes a puzzle piece of our new, everyday normal. There has not been one day thats passed since April 4, 2015, where my thoughts have not turned to my little guy. He is on my mind all the time. When I think of my girls, I think of my son.

You won't remind me of my loss. 

Because I never forget.

So while you might think twice about stopping that hurting mamma at the grocery store or seeking her out after Sunday school or sending her that Facebook message when she crosses your mind, let these words give you permission to stop and seek out. Your words won't bring more tears or more hurt or more grief.

I promise you they won't.

In fact your words bring just the opposite.

Your words bring hope. 

Your words bring life.

Your words bring peace. 

Your words bring joy, even if accompanied by a few tears.

Because we never forget. 

Stella & Dot Fundraiser to benefit the Cohen Syndrome Association

Nearly two years ago, on November 21, 2013, after a year and a half of continual concerns, Dr.'s appointments, testing, and initial therapies, we received Clara's diagnosis of Cohen Syndrome. We sat in the geneticists office that November day with eyes popped wide and minds on the brink of explosion. 

So much information. 

So many questions.

So many "What if's?"

So many "She many never _____. . . "

Pictures from the day of her diagnosis, November 21, 2013
(I was almost 8 months pregnant with Camille!)

That hour and a half at the children's hospital felt like a lifetime. Guilt filled our hearts as we learned that our daughter's struggles were a direct result of mom and dad passing on faulty genes. Emotions swayed from "Goodness, this is just too much," to "Okay, we can do this . . . we've got this!" 

And all of the emotions felt on that day, two years ago, still creep back inside from time to time. Special needs parenting is filled with lots of hard and lots of good. But that is just the nature of parenting . . . lots of hard and lots of good, regardless of diagnostic label.  

Cohen Syndrome is a rare genetic disorder caused by mutations in the VPS13B gene (frequently called the COH1 gene). We are so thankful to have an answer for all of Clara's struggles. 

Anyone that knows her knows that while her struggles are many, her joy is even greater! She is one amazing kid. We are so thankful for Clara and the love and life she brings to everyone who crosses her path. We believe God is going to use her, rare genetic condition and all, to change the world in her own little way. And that really isn't little at all, is it?

Clara 2014, with her little sister

Some of you might remember that last November we partnered with Chickfila to raise funds for the Cohen Syndrome Association (CSA), in honor of Clara (and her adorable friend, Katherine, also diagnosed with Cohen Syndrome).  We are thrilled to host another fundraiser this year, just in time for the two year anniversary of Clara's diagnosis. 

On Sunday November 22nd at 8:30pm we will be hosting a live fundraiser on Facebook. Our friend and Stella & Dot representitive, Gillian Mathews, has so generously agreed to give 50% of all sales to the CSA. Fifty percent!! This is a great opportunity to do a little holiday shopping while also giving to a great cause. 

If you are on Facebook and would like an invite to the live event, please let me know! For those of you who might not be able to participate in the live event, the link is up and ready now for shoppers (See below)! Feel free to browse around and shop at your convenience. 

http://www.stelladot.com/ts/n3ga6

Our goal in this annual fundraiser is to raise awareness, continue the conversation of special needs, and raise funds for the CSA. The CSA was founded by parents to raise awareness of this disease with the goal of educating parents and professionals to assure earlier diagnosis and medical interventions. We really cannot stress what a game changer it is when families receive an early diagnosis. 

For more specific information on Cohen Syndrome please visit http://ghr.nlm.nih.gov/condition/cohen-syndrome.

For more information on the CSA please visit http://cohen-syndrome.org/. 

Clara and mommy, 2015

Thank you so much for your generosity and support for not only our family, but the greater special needs community! We appreciate your love and prayers so very much.

Happy shopping!

Weekend Links 11/6/15

From our crazy to yours . . . Happy Weekend!

Life
Sometimes I have to boss my heart around
The 5 Best Things to Say to a Friend Today
When Rejection Steals the Best of Who I Am
6 motherhood truths for those days when you want to quit

Loss
Asking "Why God?" after a miscarriage
Suffering: What I've Been Missing  - "The testimony of the moments we have overcome in the Spirit are the ones Jesus will celebrate as we stand before the throne.

I’ve figured out one truth: Perseverance is our individual choice. Like forgiveness, perseverance is an act of worshipful obedience to our righteous and holy King Jesus." 

Halloween 2015

Halloween has come and gone and most are now full speed ahead into November. Yet for the sake of documentation, a few pictures of our end to October. 

We kicked off the festivities with a trip to the Houston Zoo for Zoo Boo with friends a few weeks ago. Camille had an absolute blast!! Lots of fun fall activities for kiddos. 

On Halloween eve we visited our church's pumpkin patch. I would say most kids had a great time, although our kids were a little maxed out after three minutes. Camille was giving in to her urge to meltdown and Clara was overwhelmed by the noise/crowd and remember mommy was having her own pity party, so we stayed on the play ground most of the evening.

The girls dressed up as butterfly princesses . . . not because they cared about wearing wings or a tutu, but because $9.99 at Home Goods. Decision done.

Attempting an extended family pic . . .

As good as it is going to get. . .

Swinging with cousin, Maddox. . .

On Halloween day we attended a birthday party for a sweet friend. It was honestly a great intro to Halloween for my girls. The kids got to dress up and eat cupcakes and run around wild with friends, and the parents got a few photo opportunities.

Clara was clearly not feeling the "Let's sit on the step and take a picture!!!" prompting from her parents. . .

Since the girls are still a tad young and don't quite understand the reality of what most children do on Halloween night, we decided to stick to home and pass out candy to trick-or-treaters. (Aka, we knew we could be lazy for one more year.) We only had about 20 kids come by, but Camille thought it was the greatest game ever! Except if said trick-or-treater had a mask. Then it was "NO, NO, NO" coming from her mouth until I closed the door and mask covered scary person was long gone. I would expect nothing less from my spunky girl!

(In her defense, she was truly frightened, shaking and shuddering at some of the costumes, and was not in fact being sassy.)

Another Halloween in the books!