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The 3 feet rule

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  Only focus on the 3 feet in front of you. That saying has been with me ever since I heard it on a tv show. Being a special education teacher and special needs mom, I often have days where I don't get to sit and think. In a way, sometimes doing is better than thinking because my mind might wonder to the What if's and frankly I am pretty tired of thinking about the What ifs. When I heard about the 3 feet rule, I stopped and thought about it. Focusing on what is 3 feet ahead of me would make my life so much simpler.  Joy, happiness, sadness, anger all stream through me in different seasons. We have had 6 months of no procedures or surgeries. It has been amazing to see how much Evey has learned over the past 6 months since her last Cath lab.  Lately my mind has been thinking about what all has happened in her first three years of life. She has had 6 procedures since she has been born: 5 weeks old- stents placed 7/13/23 5 months old- stents ballooned 11/01/23 10 months old- ...
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Expect the Unexpected

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       When I first started teaching at Cornerstone and the charter school way was new to me, a lot of things I had to learn how to handle without a program administrator or someone downtown telling me what to do. The best advice I got from our director was to expect the unexpected and things would seem a little easier. From that day on and each new school year I expected the unexpected so that I wouldn't get bogged down with all the chaos that a new school year brings.      At the beginning of this school year, I learned that Evey would need another open heart surgery. I was not expecting that to be told to us. Her doctors weren't expecting it either. I went into a whirlwind of emotions. I started the school year off with a negative attitude. I didn't want to be there. I couldn't handle putting Evey to sleep because the long nights at the hospital and after her first heart surgery  crept back in. There were many nights I cried because I just want...
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54 days

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 It's been 54 days since last updating the blog.  From April until the end of May is a busy time of year for teachers. It's also been a rollercoaster of emotions for us as we have transitioned to CAP-C and a new nursing agency at the end of April. No one truly knows the amount of time it takes and the emotions a parent feels getting the RIGHT services for a child with a disability unless they have lived it.  There are so many people that take a job just to get money. Others take a job because they are passionate about the work they do. The nurses we have met through the new agency just want a paycheck. I bought two more cameras to have in our house because I just do not trust the nurse that comes in to take care of Evey. When I have peeked in on them, the nurse is on her phone ALL the time, not interacting with Evey and does the bare minimum. It's been excruciating to watch. She has regressed with her development because the nurse does nothing with her. I have contacted t...
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God is bigger than our worries

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 We have had a lot going on these past two weeks! Evey is ALMOST crawling! She is saying more and is enjoying life. We got word that we may lose her nursing services with Thrive since insurance is saying she no longer needs level 2 nursing care. While this is good news, we don't want to lose Thrive as Evey's caretakers while we are at work. Both nurses that work with Evey love her and go the extra mile to make sure she progresses in all of her skills.  When I heard that we might be losing the services, I let stress take over and it totally overwhelmed me. I got on the phone with CAPC to see how long it would take to get a nursing aide in place and asked a bunch of questions. I was in a state of stress for about three days until I heard someone say: God is bigger than our worries. God can do big things and we have to let Him take control of everything in our lives. It's the only way to really let go of what we want and  let God do what He wants in our lives. I know I will ...
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talk talk talk

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 Evey has been busy chatting! She received a dancing and talking cactus for Christmas and tonight she started talking to it, and it talked back so she kept going with it. It was pretty funny! Here is an upclose version She had a great weekend hanging out at her cousin's birthday party while the big kids had fun jumping and riding go carts! We got to spend some time outside on both Saturday and Sunday and she loved it. She loves playing on her blanket and swinging in her swing. She got up Saturday morning and hung out with Jonah in his bed while mommy was brushing her teeth and daddy was making her breakfast. She loved being in a big bed.  She got to hang out with Laney after her nap on the couch and eat a snack. She loves to cuddle with Laney and she almost pulled herself up on the couch to get to her today!  She loves to laugh at Ty. For some reason whatever motion he does, she laughs and laughs. We heard giggles coming from the playroom so we went in there and saw Ty le...
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March wind is a jolly fellow

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  He likes to joke and play. He turns umbrellas inside out And blows men's hats away. Just like the poem goes, March has brought us a whirlwind of growth! Evey started speech and physical therapy and has grown so much in the past two weeks. She has learned to say, "eat" when she wants to eat and she has learned to sign "up". We are working on 'requesting' words so that she can begin to request for items so that she is not getting frustrated.  We began our session with learning to say "wee" and modeling it for her. She does a great job when I get her attention. I learned that getting her attention by saying, "Evey, look at mommy's nose" works. It's something that I learned from my mother growing up when she worked with preschoolers. It also works with my kinders that I teach.  She also started getting in the crawling position on her own as well. She likes getting in this position then sliding down like she is sliding into home ...
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21 months

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It's cool that Evey turned 21 months in March! It symbolizes the 21st chromosome where Tri21 comes from! These past two days have been busy for Evey. Her old nurse, Carolina, comes on Monday and Tuesday now and she makes sure she works Evey until she is tired. She gave Evey a bath on Monday and Evey didn't like it, but I am pretty sure she just needs to get use to Carolina giving her the bath in the big bath tub. They went on walks both days so Evey was able to enjoy the nice weather.  We went to Ty's preschool to enjoy a Mardi Gras pancake supper and it was fun for all. Evey saw a little girl her age walking around and she kept turning her head to follow her and smiling. If Evey could walk, I am pretty sure she would have gone up to her and played with her. Inclusion is so important because if Evey is not around her typical peers she won't be able to learn from them. Being around her nondisabled peers will push her to reach higher expectations. She is very curious righ...
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