Wednesday, April 20, 2016

Trapped


This is me. Hiding out in my room. Letting you in on a little special needs mom secret. I'm trapped. Here's how it happened. 

I wasn't feeling well this morning. I got up and took my kids to school, and then came back home. Most normal people would lie down for a while, or rest on the couch. But Waverly had school this morning. Which means her teacher and the assistant are here. So while I am able to lie down in my bedroom, I still hear the bustle of people in my home. It's not quiet or peaceful. I feel stuck in my room because I can't go out, or I'll have to interact. I'd love to heat up my coffee, but I feel like I can't. I just don't feel up to interacting right now. 

So although I'm resting, it's not exactly restful. 

This doesn't happen often, but it sheds light on what it's like sometimes. I can never fully retreat in my own house. There is ALWAYS somebody here. And if not, Waverly is always here, and I've got to be keeping an ear and eye on her, so I can't fully check out either. 

For 5 years it's been like this. Imagine how exhausting that is for the brain! I am in no way complaining about the nursing care we receive or the school services she gets. But sometimes the reality of what life looks like for us even in the small things hits me, with how different it truly is. 

Sunday, March 27, 2016

Happy Easter!


This morning, as we watched Waverly have 10 minutes of seizures, it hit me once again just how important Easter is. Without Christ's resurrection from the dead, He would be just as powerless as any other person. The fact that He was raised meant that not only did He pay for our sins, He defeated death! He won! 

Daily we experience the consequences and pain of this broken world as we watch our sweet girl's body fight to stay alive. But thanks be to God that this is not the end of the story for her. As I spoke over her this morning, Jesus has won! This is the worst it will be-complete Wholeness awaits her one day. We have Hope because of His resurrection! And for that, we praise Him! Happy Easter, from our family to yours! 

55 "O death, where is your victory? O death, where is your sting?" 
56 The sting of death is sin, and the power of sin is the law.
57 But thanks be to God, who gives us the victory through our Lord Jesus Christ. - 1 Corinthians 15:55-57

Egg hunt

Waverly enjoyed making an appearance as Little Miss Wheelchair Va at our church's Easter egg hunt yesterday! 







Easter eggs

We enjoyed dyeing Eastwr eggs earlier this week! Waverly did not appreciate how cold the egg was though. 






Thursday, March 24, 2016

Needing wisdom

We are needing wisdom for Waverly these days. For a couple of weeks now, she's seemed a little "off" and we are having a hard time figuring out why. She's been constipated even though she goes every day. She's been having an increase in seizures too, and we just finished treating another UTI a few days ago, and are waiting to hear if she's got another one already. She had a fever one day this week but that's all. And she's arching. A lot. We aren't sure if it's due to pain (from constipation or UTI), reflux, neurological, or airway clearance. 

I've spent my entire week trying to contact each doctor to get to the bottom of this. We took her in last week to check for bowel obstruction or other issues, and to get some blood work to make sure her levels were ok, and most of that checked out ok. (They did note some scattered stool throughout her colon and some dodge goon in her colon. 

So, we would appreciate prayers for her as we try to figure it all out. We've talked about a hospital admission just to have a whole team working on the whole picture (which is really needed), but an admission would be risky with exposure to other illnesses that are there. So for now we are still trying to do our best to communicate with all doctors (NOT an easy task!) and do what we can to help her. Thanks for the prayers! 

These pics were from last week. Poor baby! 




Saturday, March 12, 2016

Waverly on the news

http://www.virginiafirst.com/news/good-news/ms-wheelchair-virginia-raises-awareness

Check out Waverly's message of hope! What they left off is WHERE we find our hope-in God! 

Little Miss Wheelchair Virginia

Waverly had the honor of being chosen to be one of the recipients of Little Miss Wheelchair Virginia this evening. It was such an honor for her to be asked! We are excited to show others that all life is precious and a blessing, and that despite a grim diagnosis, there is hope! She was happy to have her big sister help her!