2015-2016 School Start

Summer went by so quickly. I honestly think it was the fastest summer we have ever had. We filled our days with a few camps, VBS, the pool, a family visit among a few other things. Then poof, it was gone.

We gave Baylor the summer off of therapy. No speech, no OT, no summer school, nothing taxing. Her one camp was an all day camp for a week and she handled it like a champ. I figured after that she would probably handle kindergarten days pretty well. I finally had to come to terms with the fact that my shadow was going to be gone as shadows fade with the going down of the sun.

The week before school started had an official meet your teacher day and drop off school supplies with the rest of the 800 elementary school kids and the collective massive families they all come from. I mean, who doesn’t have at least 4 kids these days? It is always an overwhelming event as everyone crowds to see one wall of class rosters and pushes through the sea of humans to drop off school supplies and get more paperwork from the teacher. This year we had grandparent help as we had to bail and take Ainsley to Vandy for an MRI that evening to approve a growth treatment plan.

A week later, Baylor starts her first day of kindergarten with a fresh team of people in a very different school set up as the past three years of the early childhood program at the same school. I’m a  wreck because my baby who is not able to tell me anything other than requesting her basic needs is going to kindergarten. She is set up in the regular classroom with a few different aids that assist her all day. I kiss her goodbye and up to Vanderbilt we go to see a neurosurgeon as Ainsley had a spot on her brain we needed to discuss. We had received the call the day after the MRI telling us they found a spot on her right front lobe the size and shape of a pea.

I should have been a complete disaster but my God kept my heart and mind at peace like nothing I can experience with my own doing. We brought our petitions to Him and we know He holds our future and our victory in this life. Vanderbilt has great pediatric departments and neurosurgery is no exception. Unfortunately right before we were to see the doctor he was called into emergency surgery. However, the student came in and talked with us for a while and showed us the images. Sure enough she’s got a spot. The good news is they are not that concerned as they believe many people have these gliomas and they most likely won’t cause any problems. It is a good shape and a fluid color so they are not super concerned about it right now. We take the wait and see approach and follow up with another MRI in 6 months to check for growth.

We make it back to school in time to pick up Baylor and her teacher brings her out and tells me her day was horrible. Awesome. I had a feeling it wouldn’t go smoothly as there was no visual schedule set up for her and sure enough I was right. Her teacher and special ed teacher were freaking out. I was incredibly unhappy with the whole situation. I called for a meeting with the head of autism consulting in the county and the new speech therapist and new special ed teacher. We met a week later (last week) and things had gotten much better in the meantime. Right now everything is ok but there are a lot of spinning plates in the air regarding her education and making sure she is taught the way she can understand. She is an incredibly smart girl and she has all the ability in the world to learn and succeed but she has to be taught differently. It goes with the autism saying, “Different, not less.” There is a very sweet staff that is working hard with my baby and with me to help her succeed.

Lovingly the school added a program we started with Bay a month ago called GemIIni to her day. She watches these videos on people speaking words and showing picures of the word (ex. snake, cow, dog) and you play them over and over for a week and then switch up. She has very much taken to these videos and is repeating them and we can already tell her words are getting clearer as she practices! We are very excited she is responding already!

Prayers for my girls school year would be much appreciated along with a great report on the next MRI for Ainsley. On the health front for Baylor, we picked up homeopathy again just a few weeks ago and hope to follow it out to the end. No stones unturned.

Thank you for keeping up with us and believing with us for Baylor.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:5-7

Team Baylor

It's About Time

This title is kind of a catch 22 for me. It's about time I wrote another entry and this post is about time in the sense of the where we are this month, day, year, hour, minute. 

Sometimes I wonder if time will sort out life itself. I want with everything in me to just KNOW how the full life is going to look for Baylor. My heart longs for her to understand the deepest feelings she has and grasp to the fullest all God has to offer her. I want to see her thrive and not struggle. Her anxiety and inability to always understand that I have her best in mind and I am not walking her into harm's way breaks me. Not being able to communicate fully and her comprehend fully leaves her terrified and my heart heavier than before. But I know better.

I know she is a pretty happy little girl. She does not mind hours outside dropping dirt and jumping on the trampoline. Bay really likes school and her sweet friends whose parents jumped on the opportunity to stretch their children's hearts and minds. I could not thank those parents enough for empowering their babies to be better human beings. My daughter loves quite a few of them and they love her. School has been an amazing place for our B. She sure is giving them a run for their sanity right now with her shenanigans. I never thought I would have two meetings in one week with both church and school to try to correct my pre-k daughter's behavior. That girl is smart. Too smart.

Her sassiness knows what she can get away with and with whom. She understands so much and she needs to be challenged in a way that inspires her. She had an amazing opportunity to be challenged with the most beautiful therapist we could have ever had the privilege to work with. Bay's time with KidTalk was amazing. She had 64 therapy sessions with a brilliant, loving and Baylor whispering woman. We hear so much more language echoed back to us, and a little more random answering of questions and statements. We are starting to see a little bit of conversation! Not surprising she is best when she is mad but she sure is trying. I am so sad this time is over but we anticipate more time in the future with the first person outside of us to 'get' Baylor. Her time with Vanderbilt gave us the opportunity to meet the creators of the software she used in her research study. Those kind gentlemen from Amsterdam gave her the software after watching her use it. Now she takes her iPad to school and uses it to communicate. What an amazing blessing!

Another amazing blessing this year was using homeopathy. Homeopathy is one of the most misunderstood mysteries I still cannot wrap my head around. I not only watched the healing take place in Baylor's life, but I happened to participate in the healing, as well. Stephen and I took our lack of understanding, but God-directed path of homeopathy, and learned a bit about prayer and about who we are in Christ. Then God. God blew our minds with answers to our prayers. Sure, we do not have the total healing at this moment we would so love to see, but God breathed on Baylor and touched her in response to our prayers. I mean, who are we that He'd love us that much to show us Who He Is? But He has. He will. I am in complete awe of my Abba and Yeshua. He fills me with peace, joy and freedom that I can find no where else and in no one else. My God is so amazing, I can only imagine how He touches Baylor's life and I am so completely unaware.

Being unaware can be such a hard place to be. You strive, you try and wish and pray to understand it all but you cannot. Maybe you and I are not supposed to because it would alter who we become. Maybe it would take away the beauty of the moments leading up to the grand finale. I am learning so much about patience. About waiting. My God, He knows I hate this waiting game. I trust Him. When I lose that footing I go back and find it. Sometimes He takes a bad week or a bad month and waits until I drop to me knees and beg Him to take full control. Not the half-ass pretend it is the full monty control I pretended to give over. The full thing.

So after a few really terrible weeks I finally realize I am trying to control. Seriously? I thought I handed that over a million times. I had not fully done that. God does not want part of our affection, adoration, life, or anything else. He wants it all. So I laid it fully at His feet. I do not remember when that was but I let go spiritually and physically. I slacked off on the SCD diet (which was great for her, btw), stopped putting my hope in the beautiful package of supplements I had received, etc. I stepped out in faith and let God have control. Would you know that she is doing better than ever? I am gaining more peace in thinking about her future. I still have moments of trying to pull back, trying to gain control. I am not perfect, never will be. I am trying, though. Trying to put my feet where my mouth is. I know Christians are considered hypocrites and i hate that. We are just sinners trying to do what we believe and sometimes miserably fail.

I have noticed I can be a hypocrite without even realizing I am doing so. It took me a few years to realize I was not really trusting God. I was only partially doing so. Wow. How humbling and how freeing the moment you pass the proverbial baton.

This leaves us to today, this time in the story already written. How beautiful a picture for me to hope in. My God has written our story, and He works it out for our good. We are just a chapter in it right now. If nothing changes, to God be the glory because great things He has done. His love is steadfast and faithful and sometimes I have to sit back and wait. Be still and know that He is God. He is enough. And her smile, her dimples, baby blues and precious arms that reach out to love on me. Who am I that I should be so loved?

Never quit believing His promises,

Team Baylor


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