Thursday, November 13, 2014

Dear Clara . . . a letter to my girl at age two and a half

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.


 Halloween 2014 . . . cutest little lady bug (same costume as 2013)

 Riding in the grocery cart with sister. . .


  1. It's so great to hear these updates!! And so awesome that 25% of the Big Prayers have already been answered!! :)

  2. Such a sweet letter to such a sweet girl! I didn't realize the extent of the insurance issues and I can only imagine how frustrating that must be. I know everyone has said it a million times, but she is so lucky to have a mom and dad that advocate for her like you both do.

    Love the first grocery cart pic because they look so similar to me there!

    Oh, and if you need me to let the air out of any insurance company representatives' tires, I would be happy to do so. Or if you'd rather me just take out the whole parking lot at their HQ, I can try to arrange that as well :)

  3. Such a beautiful post for your beautiful daughter. LOVE the ladybug picture! Cutest ladybug ever!! We are looking forward to coming out next Friday!

  4. I'm with Amanda's idea above ;) Looking forward to next Friday where we will celebrate Clara and all of her hard work, as well as all of the hard work you and Brandon put in as her parents!!

  5. I love this update and that sweet girl!


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