Meet the McNeil Family

Meet the McNeil Family

Wednesday, November 26, 2014

Happy Birthday, Wavey Mae!!

We weren't sure how we were going to celebrate Waverly's birthday. We hadn't planned a party and the weather was fairly chilly for a day downtown or at the zoo. We opted to drive to a cute Virginia town we had heard about. Quaint - good shopping - great food. Sounds perfect for us! I spent a few minutes googling places to stop and we came up with a great itinerary.

First stop was coffee and pasteries at a fabulous little bakery called "Red Truck". It was fantastic and Oliver was especially excited for his red truck sugar cookie...and some of my coffee cake 

We then went to Culpepper for shopping for food. We had some fantastic BBQ (Matt's favorite) and explored the downtown. 

No birthday is complete without a sweet treat. We stopped a MooThru ice cream for shakes. Oliver's favorite part of the day. 

Wavey Mae had a great time with her family. Our little 11 year old had a great day celebrating.

Thank YOU!!

Thanks to all of you who participated in our *Wavey Inspires* campaign. We had over 1400 people commit to perform an act of kindness in Waverly's honor. We are still getting messages from people telling us about what they did for a family with family specials in their community. It made Waverly's birthday incredibly special and joyful.


Friday, November 14, 2014

Wavey's Birthday Eve

We just put Waverly to bed. Her last night as a 10 year old. Another year has passed.

Tomorrow is going to be a difficult day. A fun day of celebrating, but emotionally rough. 

Our now 11 year old will wake up in her bed, after a night of being fed by a pump via her g-tube. We will unhook her tube, give her some meds and change her diaper. We will dress her, brush her teeth, wash her face. Support her body as we shuffle into the family room for some cartoons with her brother. We will reposition her, so her body doesn't stiffen. Stretch her legs and massage her feet. More diaper changes, feeding tube hook up for lunch. Trips in her wheelchair and time in her stander.  Snuggles on the couch. She will hold a favorite toy made for babies.

Not exactly what we had envisioned for our 11 year old daughter. 

However we will laugh together. We will sing "Happy Birthday" over and over again, because it always makes her smile. We will read "Click, Clack, Moo" and watch "Cinderella". We will light candles on a cake and relish in the chocolate icing for her. We will hold hands. We will kiss her on her cheeks. We will hold onto the moment and celebrate the 11 amazing years we have had with her.

She is pure joy.

I will cry as I say goodnight tomorrow. I will watch old videos and weep when I hear her sweet voice I so desperately want to hear just one more time.

And I will hope that we will be able to celebrate 12 years together in 365 more days.

Happy Birthday, Matt!


Happiest of birthday wishes to Matt. We are excited to celebrate with him tonight after work. 

Thursday, November 13, 2014

#waveyinspires


Waverly turns 11 years old in just 2 days. Our *Waves of Inclusion & Kindness* campaign is going strong. We have had almost 900 people commit to reaching out to a family of a child with special needs in their community. We hope to cross our 1000 people goal by her birthday. Please join us and help bring some joy to a bittersweet day.

Wednesday, November 12, 2014

Waves of Inclusion & Kindness

Our Wavey Inspires page is up and going. We have had almost 800 people like our page and pledge to do an act of kindness to a family with a child with special needs in their community. What a fantastic way to celebrate Wavey turning 11 years old on Saturday. Please consider participating in our mission. If you are on Facebook like our page, Wavey Inspires, and let us know how you plan on showing kindness to a family in your life.


Monday, November 10, 2014

Wavey Inspires

Waverly turns 11 years old on November 15th. As you can imagine, birthday are bittersweet in our family. When Waverly & Oliver were diagnosed with Sanfilippo Syndrome 6.5 years ago, we were told their life span would be anywhere from 10-16 years. We have no idea how much time we have left with them, but we focus on today. Celebrating the moment at hand and making memories along the way.

In an effort to celebrate her birthday, we are asking for your help. We would like to encourage you and your family to reach out to a family in your area who has a child with special needs. Introduce yourself, have your child make them a card, invite them out for coffee or a playdate, give them a gift card. We want to see "Waves of Inclusion" throughout the world, in honor of our  inspiring little girl.


Please *like* our Facebook page - "Wavey Inspires". Share our idea and please share how you blessed a family in your life in honor of Waverly's birthday.

Thank you!!

Changes in Oliver


This little boy warms my heart. He is such a gentle soul, always waiting to take my hand for a walk. Over the past few weeks, we have noticed some changes in his behavior. He is very structured and follows routines well. However, when we head out to the car each morning to go to school, he is beginning to wander around. He just walks around the yard until I come take his hand.

He is also beginning to have some trouble while eating. He is overstuffing - leading to choking and gagging. So meal time has changed. We now present him with just a few bites of food at a time and then prompt him to drink. We have been through this before with Waverly, but I hate seeing these changes in him. Especially his eating pattern change. If you know Oliver, you know how much he loves to eat. Anything altering that behavior saddens me.