Our little family has much to be thankful for this year.
Reason number one . . .
And reason number two. . .
And while I could write a novel on all the hard moments of this past year, there is so much good that came with all the hard. Have I said that before? Only a hundred times. Because it is so very true.
And it's pretty difficult not to be joyful when I think back on that day in March. That day in March when our biggest girl started walking. And she continues to walk, Praise God. There's no stopping her now. . .
So my prayer for all of you this holiday season is that maybe, just maybe, you can find some good, some joy, some little thing to be thankful for, even if this is a season of hard. Because I promise there is some good tucked away in there. Promise.
And for all you locals, we hope to see you tonight at the Sugar Land Greatwood Chickfilabetween 5-8pm for Clara's Spirit Night (its a come and go, you don't have to stay that entire time!). We we will gathering together to celebrate Clara and bring some awareness to Cohen Syndrome and just enjoy a fun, relaxed evening together. Just remember to stick your receipt in the Spirit Night Box on the counter (either near the register or condiments) or if you prefer to drive thru, just ask the attendant that they place the receipt in the box. Easy peasy! Great excuse to order all your fried favorites!! I'm looking at you chicken nuggets. All money raised will go directly to the Cohen Syndrome Association. Yummy food for a great cause!
And this cutie would sure appreciate the loving . . .
Camille continues to be her happy, go lucky little self . . .
Loves: Eating, smiling, eating, pulling up on anything and everything, getting into anything and everything, eating, being tickled, dancing when she hears a beat, reading books, splashing in the bath, eating, playing with big sister, watching mommy blow bubbles, "cooking" in Clara's play kitchen, making "music" on her toy drum, eating, and riding in the grocery cart.
Does Not Love: When her mean parents take away anything from her that she does not feel is justified (basically everything), getting her face or nose cleaned, or changing clothes because that would require you know, sitting still for approximately five seconds.
Schedule: She continues to sleep 7pm-7am on average and takes two naps a day about 10am and 2pm or 2:30pm. She started waking up at night to eat a few weeks ago, but hasn't the passed three nights, so maybe she was hitting a growth spurt? She eats three meals a day of baby-food/finger-foods (leaning more towards all finger-foods) and a 5-6oz bottle of formula every four hours. (I stopped pumping at 8 months.)
Size 12 month clothes & size 1 or 2 shoe
Can you see that little green thing out of the corner of her mouth? Yes, she stole my veggie chip & then laughed about it.
Cuties riding around in Target. Oh, and just to clarify. . . Brandon put a random Christmas headband on Camille while browsing the Target isles . . . just FYI. So no, I did not purposefully put that on her head before leaving the house.
Playing and being cute. . .
Developments: Camille is a talker! She babbles all the day long, which I love. She can pull to stand and has stood for about 3-5 seconds without holding on to anything. She has cruised the ottoman a few times. She loves to grab our hands and have us walk her around the house. She also loves to clap and wave hi & bye-bye. And dance!! Turn up the music and this girl can get down to the beat! (Let's hope this love of dancing dies off by the teen years mmmmmkay?)
Camille & her little buddy, Zane, during lunch out one day. . .
Had to get a picture of them in front of the Christmas tree . . .
Happy ten months, Camille! You are such a gift. Can't imagine our life without you in it!
A few questions Brandon and I hear frequently. . . "How is Clara doing?" "How is therapy?" "Is she making progress?" And while close family and friends know the latest, I haven't posted an update on the blog recently. I thought another Dear Clara letter would be appropriate, to specifically remember this time in our lives & for her to be able to read and reflect on someday (Lord willing).
Dear Clara,
I cannot believe you turned two and a half this month. Where does the time go? I wrote a letter to you back when you were a little bitty baby, and now you are a grown up toddler with cute glasses and hair long enough for pig tails. I love you more than you will ever know, and you are such a precious gift to me and all who know you.
Two and a half is such a fun age. Your greatest quality, if I had to narrow down and pick just one, would be your overwhelming joy & delight. You find an insurmountable amount of joy in the littlest of things. The smile and laughter that overtakes you is indescribable. While most parents are feeling frustrated at this particular stage in a child's life thanks to "terrible twos" and strong wills, we are feeling the complete opposite. In daddy's prayer last night before dinner he specifically said "And thank you God for Clara and the FUN that she brings to our family." Such truth. You are just plain fun, day in and day out. Smiles, laughter, and buckets of fun.
Mommy and daddy have been fighting hard for you since June of this year. Well, we always fight hard for you, but we have had to step up our game recently. Our health insurance, which helps pay for all of your services, has decided to stop helping us until January 2015, and even then will their help be limited. For that reason, we have had to do some scrambling and switch things up on you a bit. I am so sorry for that, Clara. You thrive on consistency and it takes you a long time to develop rapport with a new therapist (rightfully so) so I know these changes have not been easy for you. It truly breaks my heart. Most of your therapy is now through Early Childhood Intervention/ECI (a state funded program), instead of private. Please know that we are still fighting for you. We will never stop fighting and advocating for your needs. Never. You are more than worth it.
You keep a pretty busy schedule these days. You are such a trooper and work so very hard. You currently are getting occupational therapy (biweekly), speech therapy (biweekly), pre ABA therapy (twice a week), and skills training (biweekly) through Early Childhood Intervention/ECI. You also get vision therapy from the school district (once a week). I would say your favorite therapy is pre ABA and you love working with Mr. A. The second he walks in the door you snuggle up to him on the couch and are ready to work. Mr. A is helping you learn how to respond to basic requests and prompts. The idea is learning to respond to basic requests will then translate over to bigger areas and tasks. You are prompted with a task, and then given a reward once you follow through. Over time the rewards will fade until eventually you will be responding to requests with no reward. You are doing SO WELL. I was actually in tears yesterday during your session. Take a look at your hard work. . .
Other than the therapy mentioned above, you see Dr. M, your eye Dr, every three months. She dilates your eyes every time to check for any sign of retinal dystrophy (a symptom of Cohen Syndrome). So far your retina looks perfect. We praise God for these good reports. Oh, and you now only see Dr. R, your neurologist, once a year! Woohoo! He is such a nice Dr, but we are thankful that we have mostly graduated from his services, now that we have an official diagnosis.
You also go to a Mothers Day Out twice a week on Tuesdays and Thursdays from 9:30am-2pm. It was a hard adjustment for you at first after breaking for the summer, but once again you found your sweet spot. You prefer not to eat lunch or nap there (silly girl), but overall you are so happy and as your teacher would say "Clara has a blast at school everyday!"
If I had to pick your favorite activities these days I would guess swinging, looking at books, cuddling with the big bear in your room, watching mommy blow bubbles, walking around outside or up and down the isles of the grocery store, riding in the grocery cart, taking a bath, and playing on your musical stand and stomp piano. You also love "bouncing" on your trampoline outside.
I pray for you daily, sweet girl. I pray lots of things for you, but my constant prayer (other than that you would grow to know Jesus and love him with your whole heart) is that you would learn to walk (check!), talk, read, and be potty trained. Lots of our family and friends are praying the same prayer over you. Your value and worth is not based on these accomplishments, please know that, but we are boldly bringing these requests before the Lord in eager expectation.
Next Friday we are having a fundraising event in your honor. Lots of family and friends will gather at Chickfila to celebrate you and the special needs community. We hope to bring about a little more awareness specifically to Cohen Syndrome as well. Next Friday, November 21, 2014 will be the one year anniversary of receiving your diagnosis. While this past year has been a hard one, we are so grateful for having an answer to your struggles, and we wanted to set aside a night JUST FOR YOU. You are that precious. You are worth celebrating. We are giddy with excitement for this night.
I love you so much, Clara. You bring a joy to our home that I didn't know possible. I thank God for you, and am honored that he selected me to be your mommy. You are a joy. You are a gift. You are precious. Keep working hard, sweet girl. God has mighty plans for you.
Love,
Mommy
Halloween 2014 . . . cutest little lady bug (same costume as 2013)
And a few pictures of Camille from her little Sunday school class last week. Why are babies in bucket seats so stinking cute?
And this picture. . . Camille & her buddy, Zane. They were sharing snacks and staring at each other and flashing smiles. You guys. . . I can't even handle it. We will just save this one for the wedding slideshow.
As I sit here and reflect upon this past year my mind can easily take me in a million different directions. You see, we are nearing the one year anniversary of when we learned of Clara's diagnosis. It was about this time last year when we got the phone call from genetics (note: we were not actually expecting to hear back from them until January of 2014) stating Dr. L, Clara's geneticist, wanted to bring us in to speak with us. As in, they had an appointment scheduled for us on November 21st, and could we please make that work?
In that moment I knew. I knew they had found something. I knew they had an answer to all the questions that had been swirling in our head since Clara was four months old. I knew there was an actual reason for her delayed development and lack of social awareness. And in that moment my heart just kind of skipped a beat.
We walked into that appointment a few weeks later, with little 18 month old Clara, and heard words that will forever be etched into our mind.
"We received back your blood work results, and we now have a diagnosis for Clara. It's called Cohen Syndrome. It's very rare and . . . " her voice just kind of faded off for a moment as I took it all in.
Dr. L went on to explain how one becomes affected by Cohen Syndrome and how there is not a lot of research due to its rarity, but they did have some information for us. Words like developmental delay, extreme nearsightedness, intellectual disability, hyper mobility, neutropenia, and microcephaly were thrown out, and also possible degeneration of the tissue in the back of the eyes which could lead to retinal dystrophy and eventually, blindness. And she might learn to talk, but she might not. And later, looking down at my seven month pregnant belly Dr. L gently explains how any biological child has a one in four chance of also being affected by Cohens.
We walked out of that appointment with a packet of print outs and a mountain of information to mentally process.
And I knew in that moment I had a choice.
I could choose to let Satan enter my heart and slowly sink all the faith, hope, and peace I know to be true.
Or I could choose joy.
JOY.
Joy in the midst of this new confusion. Joy in the midst of this new roller coaster of emotions that could take me straight down to the depths of despair or straight up to a constant source of life and hope.
I knew in that moment, for Clara's sake, I had to choose the latter. Her precious little 18 month old self deserved the latter.
As her mommy I knew that my reaction to this diagnosis would directly impact her prognosis.
Because joy is contagious is it not?
Psalm 16:11 "You have made known to me the path of life; you will fill me with joy in your presence."
Now choosing joy doesn't mean the path will instantly be easy. That is so far from the truth. This last year has been filled with some very hard moments for us as a family. Very hard moments mixed with lots of searching and begging God and unanswered prayers.
But JOY.
There is still so much of it to be found.
. . .
The women over at (in)courage just put out their new line of Letterpress Blocks, which are now available for viewing and purchasing. You can hop on over and play around with their interactive tool to create your own word or phrase, that can then be used as a daily reminder when displayed in your home. A perfect gift idea as we near the holidays. #wordsmatter
Disclosure: I was asked to write this post by the (in)courage team, but not compensated for it, nor am I receiving compensation for any links clicked or orders placed.
