If We Would Just Stop Fighting Long Enough to Look Up

It's that time of year when many of Clara's ongoing doctor appointments show up on our calendar.  Every June and December we are faced with those twice a year appointments that are B.R.U.T.A.L. Completely necessary, but horribly emotional for everyone.

Last week week, the eye doctor, and this week, the dentist.

Just hold me.

Last Tuesday's eye exam started off well. Clara was cooperating and generally tolerating the wires that hung from her head. But after thirty minutes of arms restrained while various lenses are being held up to her eyes, she started to fight.

And after that first test came the dilation for her retina check and not only did the fighting continue, it increased in intensity. Imagine three adults tag-teaming a 55 pound six-year-old to get the job done. Brandon laying over her restraining her legs and arms. Her head being held firmly and tightly, by me, to keep her from continually banging her head against the floor. And the doctor prying her eyes open as wide as possible to get the best look at the state of her retina.

Sweet Camille was there ("I just want to be with you and sister and daddy today.") instead of school and at one point tears filled her eyes and she quietly and appropriately excused herself from the room to sit in the hallway, Brandon and I looking at each other knowing a debriefing was in our future.

In the car on the way home my conversation with Camille went something like this . . .

"I know that was hard to see, wasn't it, Camille?"

"Yes, mommy."

"How did it make you feel watching Clara get so upset?"

"It made me sad and scared."

"Is that why you left the room to wait in the hallway?"

"Yes, mommy, I just wanted it to be over and for Clara to smile again."

Melt me.

"I want you to know it's hard for mommy and daddy, too, sweetie. We absolutely hate having to put Clara through these appointments. It's tricky, because there is no logical way to explain to her what we are trying to do."

"Because God made her different?"

"Yes, exactly, sweetie. When you go to the doctor we talk about it beforehand, you understand what will happen and can cooperate with the doctor, even if you're scared. With Clara, while we do tell her beforehand what is going to happen, her brain doesn't process like yours, and so she fights us as a way to protect herself. She fights us because she is scared and thinks we are trying to hurt her. But you understand that we would never, ever, do anything at these appointments that would hurt sister, right? What the doctor was trying to do doesn't actually hurt at all."

"I wish she would just relax, mommy, to know that you are just trying to take care of her."

Out of the mouths of babes, you guys, because it hit me.

This is exactly how we, in our humanness, relate to God at times. We keep fighting, fighting, fighting, banging our head and throwing our fists in His face because we don't understand what in the world He could possibly be doing in our lives. We fight, instead of relaxing in the arms of the one who cares for us day in and day out. We fight and throw tantrums because the lack of control feels scary, instead of pausing long enough to look in His eyes and realize He is just trying to take care of us.

Friends, everything He is doing, even when it doesn't make sense, is really for our good and protection. All of it.

It's the fighting that intensifies the stress of our circumstances.

Life is hard for all of us, in unique ways, so please don't think I am over-simplifying this response.

But, we have a choice.

We can choose to fight because our brains literally can't make sense of our circumstances, or we can choose to rest in faith and trust and the overarching hope that He who began a good work in us will carry it through to completion." (Philippians 1:6)

We can choose like those who came before us to "perservere because we see him who is invisible." (Hebrews 11:27)

So . . . Let's take the advice of a wise four-year-old and relax and notice all the ways our Father is taking care of us.

And let's all just say a prayer Clara can do a bit more relaxing this Thursday at the dentist. :)

Hope Mommies / Made for a Different Land: Eternal Hope for Baby Loss releasing January 1

My friend and fellow Hope Mommies blog team member, Lianna Davis, wrote a book for grieving mothers titled “Made For A Different Land: Eternal Hope for Baby Loss.” While eight of us from the blog team contributed pieces for the book, the majority of the words are her own. She wrote most of it a year or so after the stillbirth of her first daughter. I cannot wait to read her testimony and hope-filled encouragement.

For the first time this year, Hope Mommies will gift this book to those who donate to the end of the year giving campaign. For a donation of $25 you will receive a free e-book copy. For a donation of $50 or more you will receive a free physical copy of the new book. (Books will start shipping mid- December.) Funds raised help Hope Mommies serve more and more families walking the road of pregnancy or infant loss. We are halfway to our goal of raising $9,000.

Thankful for Lianna and her obedience (as well as the blog team as a whole) in writing these words that I know will touch many hearts and lives. Book contributor testimonials can be read by clicking here... from myself, Stephanie Blanks, Lindsey Dennis, Abigail Eades, Sam Martin, Ashlee Schmidt, Meg Walker, and Calli Williams. #madeforadifferentland

For more information about Hope Mommies, click here. 

To make a donation, click here. 

5th Annual Cohen Syndrome Association Fundraiser

Y’all! We can’t thank you enough! Together we raised a little over $2,900 for the Cohen Syndrome Association. Incredible! Thank you to everyone who not only supported us in our efforts but who prayed over this event. This is by far our most successful fundraiser to date. 

A huge thanks to my awesome husband, Brandon, and sister, Ashley, for their help, creativity, and last minute ideas the day of that made it all come together. A big thanks to our Noonday Collection Ambassador, Janell Mickelson, as well!

Also, see that cute little girl with her giving jar? Sweet Audrey came to the event and gave all the money she had saved, $8, to her friend Clara’s cause. Sweetest thing ever. 

Thanks again from the bottom of our hearts for supporting Clara and Katherine, the CSA,  and Noonday Collection! This money will help create an amazing conference in 2020 for families who have a child with Cohen Syndrome. It takes a village and we are grateful you are in ours!!!

Special Needs Potty Training . . . Take Two . . . One Year In

Y'all. We have officially made it to the one year mark of potty training Clara (our second attempt) and We. Have. Come. So. Far. I read back over the beginning days and almost broke out in hives.

Below is how we started a year ago . . . 

• Every two minutes prompt to drink.
• Every five minutes conduct a dry check. If dry give verbal praise.
• Every thirty minutes - 10 minutes on the potty, 20 minutes off.

Needless to say, this year has simultaneously flown by and creeped by and we have spent a lot of time in the restroom, a lot of time cleaning up messes, and a lot of time cheering our girl on because she is stinking amazing!

For a refresher on the nitty gritty protocol details, click to read our 4 month update and our 8 month update.

The protocol we've been following, with the guidance of Clara's BCBA, is no joke. Talk about intense. But it is working, friends, and I can say it has been worth the work (as is most hard things).

Clara is so much farther along at this one year mark than I ever expected. She is urinating consistently on the potty and initiating at that! She initiates by walking to the restroom and waiting for us (so we still have to continually check her location in the house) or by taking our hands and pulling us in the way of the restroom. She rarely uses her AAC device to request potty (working on it!), but she is good about holding it until we give her the opportunity to go. When we are out in the community we offer her the opportunity to go every so often since she doesn't necessarily know where a restroom is located (and thus harder to initiate).

Now we just need sweet girl to poop on the potty. Mama is ready for this milestone. Ahem. She still prefers her underwear and all my pep talks about why it's super fun to poop in the potty and not our pants aren't sticking yet. :)

But she knows how to do it.

We traveled to CT for an entire week in October and I only scrubbed poop out of her underwear one time. ONE TIME! She initiated and successfully pooped on the potty 4-5 times, ohmygosh. We were amazed! And so thankful! What a gift, especially while on vacation!

Joke was on us, though, because the day we got back home she pooped her pants. And continues to do so . . . So basically she is playing us hard. You're not tricking us, Clara. :)

So where are we now, one year in?  . . . 

• Continue to prompt her to use her AAC device to request potty when she initiates. When she drags us to the restroom, remind her to tell us by pushing her potty button. This has taken some trail and error over the last few months. We've experimented with her wearing her AAC 24/7 (but then she continuously chews the shoulder strap) and also leaving it out on the kitchen table (but then I'm always running to get it) or even leaving in the restroom (but then she forgets to use it for other things like requesting food/ toys etc). 

• After a period of time of collecting data on her bowel movements and making adjustments accordingly, and after a recent two-week period of isolating ourselves to the restroom from 4:00-7:00p.m.* (after we discovered she could do it in CT and in an attempt to remind her that THE RESTROOM IS THE ONLY PLACE WE POOP), we are at a bit of a loss in how to encourage her in this area. Her BCBA is consulting the behavioral committee to see what other suggestions they have.** Any behavior specialists out there with any input or recommendations? I'm all ears!
• Keep encouraging our girl and raising the bar and working hard expecting that in time, she WILL be fully potty trained. 

Thank you for your support and encouragement over the last year. We are so thankful for our family, friends, and overall community that stands with us as we tackle these extra hard milestones that come with raising a child with special needs. Prayerfully, Clara will be consistently pooping on the potty at my next update four months from now. 

Love this beautiful child! 

*No, not a typo. That's three hours in the restroom. Okay, so how did that work? Clara didn't have to sit on the toilet that entire time. But we did have to stay in the restroom that entire time. Since our data showed Clara typically only poops once a day, if she soiled her pants or had a success we could leave the restroom and go on with our evening, or if she soiled her pants or had a success earlier in the day we did not have to complete the three hour bathroom stay. Not having to stay in the restroom + unlimited IPad time was the reinfocer used for increasing the desired behavior. 

**Updated 11/20/18 per Clara's BCBA - Starting the Monday after Thanksgiving, 11/26/18, we will restrict her access to ALL light up/musical toys (HER FAVS!). As in, she gets zero minutes with any toy that lights up or plays music until she has a bowel movement on the potty. Once successful, she can have access to those favorite toys for the reminder of the day. AHHH. In the words of another behavior specialist, "This will be effective but the process will be hell." HERE WE GO! (Also, we no longer are to reinforce her at all for peeing on the potty as that is now a mastered skill.)