Does a picture really say a thousand words? There is so much more to our story. It was the 4th of July. We were excited for fireworks, family, neighborhood fun. We planned ahead. Casadee has a friend sleeping over. I got them matching 4th of July outfits including accessories. Flag shirts, red white and blue necklaces, bracelets, patriotic tattoos, Stars and Stripes sunglasses, headbands. So hopeful. The neighborhood is throwing a block party. Waterslide, bounce house, face paint, games, raffles and food truck. The whole neighborhood turned out it seems. Kids running, laughing,…
Read MoreCooper had a strong finish to the first half of his miracle league baseball season! He got on base 100% of the time. Gave hundreds of high fives. Threw the ball to his coach. Ran the bases. And enjoyed himself! And I got to watch as he played. Which sounds so simple. But for parents with kids like Cooper, kids who need more, we often feel more like teachers, nurses, and therapists than moms and dads. So tonight, for the first time, I got to wear my mom hat instead…
Read MorePeople get really nervous around individuals who are non speaking. Or folks who use a wheelchair. Or who look different. I didn’t know that before I had my son Cooper. Before he led me wide eyed into the world of disability. Without knowing he showed me how a person can be invisible. A person standing front and center. Some of it’s subtle. The overlooking of a person. Some is not. And it’s hard to see. It’s hard to not get mad and sad and frustrated. Because I cannot think of…
Read MoreA couple of my friends, Finding Cooper’s Voice and Jackson’s Journey, Jackson’s Voice, started a campaign called, “More than a Caregiver”. Proceeds from merchandise sales go to help people that are well… Caregivers. Caregivers, but so much more. It got me thinking…what does “More than a Caregiver” mean to me? I’m a “caregiver” to our two boys, and I might be forever. I have hope that they will be able to do things on their own, and we are working on that. But, I’m so much more than a “caregiver”.…
Read MoreMy dear sweet boy, I love you, and I thank you for being so patient with me right now. In this new season of hard I want to be the best mom, but right now it feels like I don’t know how to be your mother at all. I promise, I’m trying. Thank you for forgiving me, for loving me through, and for granting me grace as we walk through this hard season of our journey. I’m asking all the questions, looking for all the resources. We are actively working…
Read MoreMy good friends Kate at Finding Cooper’s Voice and Amanda at Jackson’s Journey, Jackson’s Voice, have started a campaign called More than a Caregiver. They are raising money so they can help give special needs caregivers free therapy sessions. It’s so important for special needs parents to know that they have somewhere to turn when it gets tough, that someone understands them and that they are not alone. I’ve been interviewing a lot of moms this last year. One thing they all say is that the pandemic has helped people…
Read MoreIn the summer of 2020, I developed hives. It started with one on my hand, then a couple on my arms, and the next thing I knew…my whole torso was covered. The current heatwave, of course, wasn’t helping but having been in the air conditioning, I knew that wasn’t the cause. It was at the point of no return, the palms of my hands and the soles of my feet were riddled with splotches of itchy red bumps, that I called my local urgent care. A telehealth visit with a…
Read MoreI get so scared sending him anywhere alone. But I have to trust. I have to trust in good and kind and grace. I have to trust that people will know the yellow haired boys name is Cooper because he won’t be able to say it under pressure. I have to trust that they will ask him if he wants a drink of water because he won’t think to ask. I have to trust that they will wipe his mouth after he eats and adjust his waistband after he goes…
Read MoreLet me tell you about a boy. A boy who at ten years old shows more bravery than most adults I know. But his bravery looks different so most overlook it. He has very few words. Not much for conversation. But his eyes…they tell a story. If you listen to him. Patiently. If you don’t rush him. And wait. He will tell you. If you don’t talk over him. Or speak for him. He will tell you how he hears things louder than you. And smells the faintest smells. And…
Read MoreSome kids are just mischievous. Wild. Busy. Exasperating. They see a puddle and have to jump in it. A glass of water and have to dump it. A counter and have to climb it. They see a toy and immediately want to know how it works. How it’s wired. Taking it apart becomes vital. What’s it made of they think. They see mail and need to know what’s inside. A package becomes a possibility. It could be a Nerf gun or a monster truck or ice cream. They must know.…
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