Meet the McNeil Family

Meet the McNeil Family

Friday, May 29, 2015

Slowing Down

Things are slowing down in our home. And for once I am not speaking only about the kids. After Waverly got so sick in January with the flu and then her hospitalization in February, I realized that I needed to make some changes for the family.

Waverly has been sleeping in a bit more each morning. And she is requiring much more time. She cannot be left alone sitting on her bed or in the bathroom, because she is simply not strong enough to sit unsupported. She needs more time to be stretched and massaged. And her walking is horrible now. The short walk from her bedroom to the bathroom is not going to be possible for much longer. We have submitted paperwork to get a Hoyer Lift for the house, so we can move her safely whilst saving our backs.

Oliver is stiffer in the mornings and his walking looks much more chaotic, especially right after waking. He typically runs down the hall to the family room after I get him dressed. He runs a bit like a pinball now, bouncing off of the walls as he makes his way. The excitement of Mickey Mouse Clubhouse is incentive enough to keep his feet running at the moment. He is also overstuffing his mouth and storing food in his cheeks like a chipmunk, which requires me to stay close as he eats his breakfast.

All of these changes have slowed us down. Slowed me down. And I am a better mom for it.

The stress of getting to school on time was becoming too much. Our doctors supplied the school with a letter stating that we needed to move the kids to a later start time. Wavey can sleep in as late as she wants. I can take time to feed Ollie. We have time for stretching and massaging, singing and tickling. It has been such a wonderful change for all of us.

I am less stressed. And caffeinated, since I now have time for a cup of coffee before beginning my day. I am happier.

Tuesday, May 12, 2015

MPS Awareness Day

 MPS Awareness Day is Friday May 15th. It is a special day for our community. It's a day to bring awareness for this rare family of diseases and highlight the amazing kids who exemplify courage every day.

Life isn't easy for Waverly & Oliver. They have lost everything they gained over their first few years of life. Wavey has lost her words, the ability to speak, to do puzzles & perform basic tasks, to use the potty, to run, to climb, to walk, to chew, to swallow, to roll over in bed, to reposition herself. And Oliver isn't far behind his big sister.

They have chronic neuropathic pain. Wavey's hip has necrosis and her bones actually grind on one another. They have seizures, hearing problems, vision issues.

They are different. They go through life getting stared at and second glances. People avoid them. People point at them.

However Waverly & Oliver are resilient and show grace. They respond with smiles and giggles. When you get eye contact with them, you can feel it in your soul. They have impacted the world around them. They remind people to be thankful for their health and to slow down so they can enjoy the little things in life.

Friday is our day to celebrate them. To wear PURPLE - the color of courage. We want our friends to take a moment on Friday and tell someone WHY they are wearing purple. Take a picture of your family and share it on social media #mpsawarenessday.