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Showing posts from 2021

Inchestones can be big milestones

  There are times when having a child with differing needs and abilities can be seen more than other times. Going to a big event such as MLB games can be one. Last night Kaleb was overwhelmed with the crowd, noise, and the overall experience. We spent more time walking him around in his stroller than at his stadium seat. Then he and I opted to watch the fireworks from the van while we listened to his playlist and I held his hands. But he watched and was able to experience from where he felt safer. However, there are two things that TJ and I both loved and silently celebrated. 1- was being able to have him walk to/into Kauffman Stadium. He’s never been able to do that. 2- (and my favorite) was watching him bat at The Little K. It’s something I wondered if he would ever do. We have countless videos and pictures of Kaden batting and running the bases, but I didn’t know if or when we would have some of Kaleb. Last night even though he was overwhelmed being all of the people and noise h

It's Okay

  It’s okay. -When we found out that we would be having a very premature baby with a heart defect who had a chance at being born with Down syndrome, our world was rocked. I was scared and kept thinking, it will be okay, I just hope he doesn’t also have Down syndrome. Then he did. Then I learned it’s okay. -Then I thought it will be okay as long as he grows and learns to eat, I don’t want to leave the NICU with a g-tube. Then Kaleb had to have surgery to get a g-tube after aspirating, getting pneumonia, and having to be intubated . I learned it was okay as I learned the true meaning behind fed is best. -When he was born twelve weeks premature with two brain bleeds we were told there was a chance he would have cerebral palsy. I thought oh no, not cp as well as Down syndrome. For a while it was out of our mind, until it wasn’t, as he grew and showed signs of cerebral palsy. Then when he was two we found out he has a rare dual diagnosis of Down syndrome and cp. Then I learned it was

Special Kaden Day

 June 1st (We have now celebrated two annual Special Kaden Days) I talk about our journey with Kaleb a lot. He has to work so hard all the time. But today we recognize Kaden. Our kid who deserves a special day to recognize how awesome he is. Last spring on Kaleb’s heartiversary, Kaden got to talking about how cool it was that Kaleb got to celebrate several different days (World Down Syndrome Day, NICU graduation, heart anniversary, etc.). However, he pointed out it was kinda sad that he didn’t really have any other day except his birthday. I told him to pick a day and we would make that Special Kaden Day. He picked June 1st. So today we celebrate our second annual Special Kaden Day. My heart aches to think about everything he has gone through in his eight and a half years. From Kaleb’s extended NICU stay that also turned his world upside down at two and three years old, to Kaleb’s medical equipment and issues, Kaleb hospital stays that took Momma away from him, the flood, and then

Take a Chance...

  We couldn’t ask for a better pre-K teacher our kids. She has been amazing for both. When it came to Kaleb, we knew she had that determination, stubbornness, and up for the challenge personality that would be what he needed. We just needed the school and Ms. Rockey to agree to give him a chance. Thank you for taking a chance on him, Peggy Rockey ! “The unknown can be scary, But take a chance on me. We’ll figure this out together and let’s see what all I can be. When you stop and look at me, what is it that you see? I pray you see beyond my diagnoses, That you see the real me. I might do things differently, And my ability you might doubt. But all I need is a chance, So don’t go counting me out. I know it can be frustrating And my learning at times might be slow. But please always remember, The role you could play in helping me grow. I know it might seem scary, But please take a chance on me. We’ll figure this out together and see what all I can b

Actually, I can!

  Honesty time: I love Kaleb so much and I am so proud of him. However, there are times when I become exhausted. One night this week was one of those nights. Nothing crazy happened, just the sheer exhaustion of trying to educate others, work with Kaleb, worry about Kaleb, and honestly heart hurting as I watch him work so hard. It hit me hard. It left me exhausted, aching, and in tears. It’s hard to sometimes take a step back and remember that it is okay. Kaleb is going to do, what Kaleb is going to do, when Kaleb is going to do it. To remember not to compare Kaleb to anyone else. As the saying goes, don’t compare the sun and the moon, they both shine when it’s their time. His teachers have no idea how their daily reports, their stories, and their love mean to me. Today we got to school and found out that today and tomorrow his class will be getting around with walkers, wheelchairs, crutches, etc. While he serves as class leader. I think he liked showing out and showing how he rolls

Learned Helplessness

  Learned helplessness can be an issue for individuals with disabilities. Many things come harder for these individuals, making it seem daunting to even try. Another aspect beside feeling defeated before even beginning or after experiencing failure, is that they get used to others doing things for them. We often do this with good intentions. We want to help. As one individual was told by a trainer, you can tell they are loved, but they are loved too much. Obviously, she didn’t mean that they really were loving them too much. She was explaining that the way and method that they were showing their love by always helping or doing things for them, wasn’t in the best interest of the individual. They were loving them to helplessness. This is a concept that I try to always remember. It can be easy with our busy lives to simply do it for them. It’s typically quicker and easier to simply do it for Kaleb as we are racing the clock or I’m trying to multi task. But that does not give him opportu

I got my Ph.D!!!

 On October 28, 2020 I successfully defended my dissertation to fulfill the final requirement to receive my Ph.D! Little did I know when I began this adventure just how much life would be thrown my way. However, we did (yes, I say we because it was a family commitment). This is the Facebook post made by my husband. 💓 WHAT A DAY!!!! To understand, I need to put this into context. Amanda started her doctoral degree in 2014. She will say that she didn’t want me to share that, but it’s significant. You see, in those 6 years, we had a son that spent 99 days in the NICU. She took time off for that (as anybody would), but she started back the day before his open heart surgery. In addition, our home flooded in 2019. While she didn’t take time off for that, she worked very hard on getting our house back together AND worked to complete her dissertation. Today, I listened in awe of the women presenting her dissertation defense to her committee. The confident, intelligent woman that shared her re

Our First Flip

 I haven't shared since 2019. I'm hoping to change that. You will also see some old writings and stories that I shared on FB or IG and am putting on my blog as new families of preemies, parents with a new Down syndrome diagnosis look through my posts. However, disability isn't the only thing that impacts our family. 2019 was brutal. Everyone (as they should) has gone on about 2020, but for us the craziness really began in 2019. On May 21st our house took on 4 foot of water in a flood. We pretty much lost everything, save a few things on selves or walls above four feet. Then the next day in a hailstorm my windshield was shattered. A few weeks later while living in a campus house (thanks to OKWU), a neighbors tree fell on my husband's car during a storm and totaled it. Then another two weeks later a deer ran into the side of the van causes $2,000 in damage.  It was a very rough summer. We were heartbroken to lose our home. Now two years later the silver lining is that it