Caleb's Crusaders

03/22/2020

Happy World Down Syndrome Day! 💛💙💛💙

Happy March 21st, otherwise known as World Down Syndrome Day!

(get it...3-21, 3 copies of chromosome 21)

03/12/2020

You are a good mom.
You try your hardest.
You never give up.
You listened to the "impossible".
You went against all odds.
You never took no for an answer.
You are an advocate.
You fight their battles with them.
You sat next to them in the NICU.
You held their tiny body in your hands.
You wipe their tears while holding back yours.
You sat next to their hospital bed watching them sleep.
You pray for them to stop hurting.
You watched as they recover from surgeries.
You begged God to please save your child.
You take them to numerous doctors appointments.
You drive hours to see a specialist.
You watch as people stared at your child & wish they would just approach you with questions instead of whispering.
You have dealt with people blaming you for your child's diagnosis.
You have watched people leave their lives.
You have watched the way people look at them differently.
You have overslept from being up all night.
You cry with your child.
You have learned so many terms from Doctor lingo, that you could almost be an assistant.
You do their therapies with them everyday.

You are a good mom.
You give it your all & you never give up. You believe in your child more then anyone. You show your child what love really is. You are a good mom because no matter how hard, no matter what people say, no matter how much sleep you get, no matter how many times to want to cry or scream, you never give up. You never break. You stand tall and strong and continue to fight, continue to do your best and continue do what's right for your child.
You are strong. You are resilient.
You, are a good mom.

My daughter has Spina Bifida and we were told she may never walk. She would have all these other issues. Being born premature at 30 weeks was hard on us too. But here she is 4 surgeries later, 19 months old, walking.
One surgery before she was ever born, 2 brain surgeries & 1 skull surgery.
Beating all her odds, proving everyone wrong & changing the world.

02/20/2020

Special needs parenting is more.

I write about parenting a child with a disability; outside opinions come with the territory. I get the comment, “this could be said of all parents” or something of the sort regularly. Us parents of kids with disabilities hear it a lot, from those close to us and from strangers. Here’s the thing, it’s often true.

Parenting is parenting, yes. But there’s something we need you to know:

Special needs parenting is more.

All parents are concerned about their children’s health. We try to provide good nutrition, we tear up at their vaccinations, we keep track of their medicines. Special needs parents do all those things, we also add in more specialists and therapists. We sometimes mourn the developmental chart our kids can’t keep up with. We sit through surgeries and regular blood draws. We specialize in paperwork, being on hold, and fighting with insurance companies.

Special needs parenting is more.

We all worry about our kids at school. We hope they make friends instantly, we hope the teacher likes them, we want our kids to learn and feel fulfilled. Special needs parents have those same hopes and concerns. But, before the school bell rings, we often need to attend classes to learn about our child’s rights. Even with laws on our side, we sometimes have to hire advocates and lawyers to get our children the most appropriate education. Meanwhile, we hope our children will be able to tell us something about their day, or even their week. Stress and paperwork are plentiful.

Special needs parenting is more.

All parents deal with their kid’s behavior issues. We redirect, reprimand and discipline. We feel the horror of public tantrums and beat down by the days gone awry. Special needs parents deal with this, but we often have communication barriers or neurological differences to navigate. We worry about what our children understand and don’t understand. We are often guessing. We read studies, and books, and take courses to try to help our kids better understand rules and expectations. We add supports and hope the world around them is understanding of the added challenges. We pray for extra patience ourselves.

Special needs parenting is more.

We are not drawing a line in the sand. We are not shouting our lives are harder to try to win some invisible competition. We just need you to know, to really know us, to truly understand our family, we need you to recognize our lives alongside our children are often intensified.
Much of our journey is like yours. Our steps are fueled by love; the love is the same. But oftentimes there are more twists and turns on the road we travel.

Special needs parenting is not better nor worse.

It’s just more.

Read essays like this one in my FREE E-book “5 Spiritual Comforts for Special Needs Parents” ⬇️

https://view.flodesk.com/pages/5df181b3154bd20026a1aeaa

02/12/2020

The world sees you tonight Zack! You are changing the way the world views Down syndrome! 🙌🙌

12/26/2019

Merry Christmas 🎄✨

12/05/2019

💙💛

While filming The Peanut Butter Falcon, Shia LaBeouf said his co-star with Down’s syndrome ‘saved him’ after a string of embarrassing incidents. The film, which sees Zak (Zack Gottsagen) run away from his care home to achieve his dream of being a professional wrestler, ending up on the road wi...

11/29/2019

When executives at JPMorgan Chase asked 23-year-old Coleman Jones to be featured on their website, in newspaper ads and on social media campaigns, Jones...

11/19/2019

😂

11/10/2019

11/06/2019

30 Reasons I’m Grateful I Get to Parent a Child with a Disability

1. Because there’s a fierceness in my heart that wasn’t there before.
2. They’ve taught me what relentless love looks like.
3. They’ve introduced me to an amazing community of moms and dads who are tender warriors.
4. They rescued me from the pointless path of pursuing perfection.
5. They’ve taught me speed isn’t everything.
6. They’ve taught me to speak up.
7. Because they give the best hugs.
8. Through them, I’ve experienced pure joy.
9. They’ve shown me the value in being different.
10. Because of them, I’m learning the language of advocacy.
11. They’ve broadened my perspective.
12. They’ve broken down my sense of entitlement.
13. They remind me to not take things for granted.
14. They show me the value of hard work.
15. Because of them, I pay more attention to the whole world, not just the part of the world who looks, lives, and believes as I do.
16. They push me beyond my comfort zone.
17. They inspire me to be more involved in the world.
18. They love hard and teach me to do the same
19. They have given me a new purpose.
20. They inspire me to do hard things.
21. Their silliness lights up my world and encourages me to be silly too.
22. They’ve taught me the importance and power of words.
23. They’ve made me more aware of injustices and push me to act.
24. They’ve taught me the importance of taking life one step at a time.
25. They bring me back to shore when I get tangled in the waves of fear.
26. Because there’s a bit of magic embedded in their uniqueness and I get a front row seat to the show every day.
27. I’ve witnessed them soften the hardest of hearts.
28. They stretch me in ways no one else can.
29. Because when I found out about their diagnosis, I prayed for healing, but they made me realize I was the one in need of healing—and helped me in the process.
30. They are helping me discover who I was always meant to be.

11/04/2019

From Noah’s mom, “I get it. Looking in from the outside this looks hard. For example this image is me pretty frustrated that my kid was refusing to walk at the Buddy Walk. And as soon as we turned around he started running as if he had all the energy in the world. It’s a snapshot though and not the whole movie. I get it. Looking in you may see an all out tantrum with my kid throwing themselves on the floor. You may have no idea what they he is saying to you without his “mom translator” present. You may see us at more doctors visits or therapy sessions than you could imagine. You may wonder why he isn’t reading yet, why we are still wearing pull ups, or why he looks a little different. You may say this is too hard, I just couldn’t do it. I wish you could take a step back though and see the entire movie and see what our life is really like. While those challenges may exist, the joy that we have experienced raising Noah far outweighs all of the above. His hugs are the absolute best. When he holds my face and puckers his little lips for a kiss I about melt in a puddle. When I watch him accomplish something even I didn’t know he was able to do, my heart does cartwheels. When I watch how he loves everyone no matter who they are or what they look like it teaches me so much. When I see his friends from school let him hold their hand as they walk down the hallway I occasionally have to wipe a tear from my eye. Today we gathered with families just like ours and were surrounded by shirts stating how proud these families are of their kids. They are breaking through barriers and proving people wrong every day. No one there today was saying this is too hard and I just couldn’t do it. They were saying we can do this. We support each other. We think your kid is just as amazing as my own. And we were all saying that our kids are worth it. ”