Warmly hugging challenges

I have sat down a few times in the past few days to write a post, but it just hasn't felt right. Anything that is going on in our lives, good or otherwise, seems so insignificant when I think of my friend whose heart is aching because she wants to hold her son again. One thing Isaac's passing has taught me is that there are so many things I obsess about that either really don't matter or that cannot be changed. Worrying about the things that aren't going MY way is pointless! I have made an effort in the past week to truly appreciate every day and moment, even if it is challenging. I envision myself wrapping my arms around whatever challenge I am facing and smiling at it and even thanking it.

It still feels wrong to talk about anything that is going on in our lives. It's too soon. We are good. We have each other, we are all healthy, we have a warm home, comfy beds and food in the pantry. I really couldn't ask for more than that.

More later!

Meeting in Room 103

I have said this a thousand times and I will say it again. We have been SO blessed with the doctors that have been placed in our lives to care for our precious boys. Dr. M traveled all the way to our southwestern suburb today to meet with Elijah's team at school. The meeting was AWESOME. Dr. M spoke as if he has known Elijah his whole life. The entire time, I found myself shaking my head yes...yep, that's our boy...yep, that's him....oh definitely yes, that explains Elijah..

He started by explaining that E has not just one or two strikes against him, but many strikes. The main ones being an extensive medical history, Nonverbal Learning Disorder and also being on the autism spectrum (some resulting strikes being sleep issues, anxiety and OCD). He explained the main aspects of NLD and how it is not a learning disorder but an information processing disorder. Also, how there are certain things that E's brain cannot do and will not ever be able to do, such as looking at a sheet of math problems and having the ability to prioritize the information and get through it without being totally overwhelmed. I could see things clicking with the teachers as Dr. M described how NLD kids react to school work and expectations and visual clutter.

Together, we addressed the main problem areas and even set a few plans in motion. Dr. M really stressed reinforcing SKILLS. For example, probably E's biggest "trouble spot" while in school is his inappropriate talking. Sometimes he blurts out noises and sometimes he says potty talk. Sometimes he calls people names for no reason at all. Since kids like Elijah think in steps and learn through a lot of verbal repetition, we came up with a plan to write out three concrete steps for him to follow when he starts to say an inappropriate word or noise. Dan and I are in the process of coming up with exact verbiage and then we will repeat, repeat, repeat those steps to him until he can stop the inappropriate sounds/talking before they happen. We will share our exact steps with the school so they can use the same words. Every time I talk to Dr. M, I gain some sort of new and valuable information. One of the things he said today that really helped me understand Elijah was that we (teachers/parents) need to keep repeating things to him until he understands....and that even though he might appear to understand and tells us he understands something, we will not truly know that he understands until we HEAR HIM REPEAT OUR OWN WORDS TO HIMSELF. Our scripts become his scripts. This is how he is going to get through school and life.

One of the things I've been saying for so long is that Elijah is confusing because at first glance, he appears to process information in a completely normal manner. He makes eye contact, he is engaging, he answers questions (mostly) appropriately and he smiles, laughs, interacts and even tells jokes. A person just meeting him could have a 2-minute conversation with him and have no idea the amount of processing that is taking place in his brain. So when you ask this engaging, smart little person to complete an abstract task like draw a picture and write a story to go along with it, you become confused when he absolutely cannot follow through. It can even be seen as complete defiance or manipulation.

Dr. M once again provided such good information. We feel very thankful for him and for E's teachers and team who were so willing to attend the meeting and who seemed so receptive (as they feverishly jotted notes in their notebooks) to understand more about Elijah and NLD in general.

I'll end on that thankful note. Next installment...the sassiest Sammy you'll ever meet. :)

Surgery, Santa and thankfulness.

Elijah did great today! Surgery was quick, with an easy recovery. It was one of the better recoveries from anesthesia that we've seen. I have been careful about saying what the surgery was all about in order to give him some semblance of privacy. It's sort of a private ordeal, so I don't want to scream about it from the rooftops. Catch me in person or over email and I'll explain! He was in a bit of pain afterward and had a mild fever. We will stay on top of pain meds through the night.

Elijah was, again, terrified of the mask. :( Also, again, terrified of removing the IV tape. I am thankful this is behind us! He was such a brave boy today. I could see signs of him being more self-aware than ever before, which was encouraging. He was able to recognize that he was feeling scared about specific things and he was willing to try tactics to not be so afraid. This is a first!

Dan and I always feel so terrible watching him endure pain, both physical and emotional, so we always allow him to pick out a toy afterward for being brave. So that Sammy never feels left out, we let him pick something out, too, for being a good and supportive brother. Today we picked out a toy for both boys to share, a new Lego Movie lego set! They were both SO EXCITED. Oh my goodness, they were happy boys!

One thing Elijah said repeatedly today in the midst of his discomfort was, "MOMMY! I miss you!" When I finally asked what he meant by that, he said that he missed me when I have to be at work so much. :( Ok, this kind of kills me. Obviously we all need to work, but I have been working an exceptional amount lately and obviously it is affecting our family. If Elijah can verbalize it, it means something. Thankfully things will start to slow down soon.

Here is the boys' photo taken with Santa from last weekend! (yes, I believe Santa's bare belly may be showing..)

Tomorrow will be busy, but I'm hoping we can take some time to breathe and be THANKFUL. We have so much to be thankful for. I am looking forward to four days of no work and tons of family time. Friday will be our annual getting-our-Christmas-tree day and we will spend the day decorating our house. We are all looking forward to the next few days! Thanks for checking in and HAPPY THANKSGIVING! Hug your family. Tell them how much you love them. Be thankful!!!!!

Back-up dancer Elijah!

Here is a super cute video of Elijah being another boy's back-up dancer at the Heart Camp Talent Show on Friday. :) I saw him walk out with the wig-hat-clocknecklace ensemble and smiled. That is our oldest boy for sure. I love it.

Elijah's talent was joke-telling and he did GREAT! We rehearsed his performance a few times beforehand and I wrote a note card out for him. I can't show you, though, because he decided to tell the jokes while lying on the ground (I'll be more clear next time). I held my camera way over my head to capture the scene, but part of my hand got in the way and I missed it. :( Sad.

Heart camp was awesome this year! I feel like Elijah got much more out of it (comparing to last year) and was way more excited about it. As Sammy and I watched the talent show, I realized that every single heart kid is so special in such an awesome and unique way. These kids are incredible and so spunky and have such personalities!

I want to say a quick "thank you" to the helpful and encouraging comments/emails we have received recently! Thank you to a handful of you who we've never even met, yet who we receive such great insight from. I LOVED the early-morning quiet time thoughts, Lauren! I think you're onto something there. And Maggie, getting the class schedule beforehand is a great suggestion. We'll definitely do this! Thank you!! We are ALWAYS open to new ideas. It's part of the reason I keep up with this blog.

I'm meeting a very old (well, SHE's not very old, but I've known her for a very long time...just to clarify!) friend for lunch on Monday. She has a son with special needs and also has worked in the sp-ed department at a nearby school for years. She has both perspectives, home and school, and has graciously offered to share insight with me. I feel so grateful!

The boys and I are spending a quick night at the dz and will head back home in the am for church and then laundry/packing at home. We will be heading out on Tuesday for an almost-week-long trip to Iowa to spend time with family. We are excited! PLEASE pray for Elijah to feel safe and secure and for good sleep and amazingly awesome behavior while we're away. Thanks for checking in! Have a great weekend!!

Support

We have such an incredible support system. My boys and I are blessed with so many pray-ers and truly kind, amazing friends and people in our lives. THANK YOU for being here, in whatever capacity you are a part of our lives.

I was able to fight off the "bad thoughts" all day today, which is a small miracle. Every time the darkness started to creep in, I shut it down. God prevailed! We are in the mindset that this newest bit of info will hopefully be at least a step toward answers, and not an additional challenge to add to The List.

That's all I wanted to say tonight. Thank you for reading, loving, emailing, praying, commenting, sending Pillow Pets for "the kids" :) or even just thinking about Elijah during this craziness. Thank you!

Thankful

On the way to the dropzone yesterday morning, Dan was in a car accident that has left all of us thanking God. He was on the interstate fifteen miles from the dropzone when a semi changed lanes and ran into the back left part of his car. Dan was in the middle lane and the semi was in the left lane. The semi and Little Red became "stuck" together, so the semi driver hit his brakes. At that point, Dan was sent into a 360-degree spin in front of the semi (!) and then headed toward the center ditch. He crashed directly into a hefty construction sign and his airbags were deployed. It is miraculous that the airbags worked at all, considering they were nearly 20 years old with no service ever having been done on them.

We drove by the scene afterward, and realized that the placement of that construction sign was divine. To the left of the sign was a cement construction median and to the right was open ditch. If he would have hit the cement median, he would have battled the semi. If he would have gone into the open ditch, he would have battled oncoming traffic. God was there. Angels were swarming.

Dan is fine, thankfully. He has a sore knee and a very mildly sore back. Actually, I don't know that his back is sore at all today, but it was just a little bit after the accident. Other than that, no issues. Little Red finished her life by saving her precious Dan. Now she is in the junk yard, which is super sad. She has kept us (but mostly Dan) safe for 378,000+ miles. Dan loved that car. We all loved her. Even the boys keep asking when we can see her again.

Yesterday was a day of processing for all of us. My main thought yesterday was--Dan is ok! Today has been different. Now I'm thinking--I could easily be without a husband! :( I hate that thought. I am just so grateful that he is here with us. Ever since the accident, I have not been able to stay away from him. I want to be next to him at all times. As I made the boys breakfast this morning, I began to cry because he was away from home (ok, this is definitely not a typical thing).

Ironically, one of the cars that stopped to see if Dan was ok right after the accident was a group of guys on their way to the dropzone to make their first skydive. Dan told them, "Getting to the dropzone is the dangerous part!" :)

I love my husband so much! I am so thankful that he is sitting next to me right now.

We are all feeling very thankful, blessed and grateful. Tell your loved ones that you love them every day. Spend time with them. Make them feel special and loved. You never know what the next day will bring!