Meet the McNeil Family

Meet the McNeil Family

Tuesday, May 31, 2016

A Strand of Her Hair

Last night I retrieved a tank top from my drawer. I haven't worn it since last summer. As soon as I put it on, I found a strand of hair embedded in the fabric. I pulled it free and instantly realized it was one of Waverly's as it dropped from my fingers. I panicked and instantly turned on the flashlight feature on my phone to try to find it. I was on a mission. The entire time I knew this was insane behavior, but I simply couldn't discard this precious strand of hair. After a few minutes of searching, I found it on our duvet cover. And then the tears poured forth.

Wavey's hair was one of her distinguishing features. It was thick and course, textured and a kaleidoscope of colors on a single strand. I have some of her saved in little bundles tied with ribbon. But this one was different. She was alive when it fell out.

As I twisted it around my fingers with tears falling, Matt thought we should save it. He grabbed our copy of "Anne of Green Gables" - a family favorite. I tucked the hair on a random page only to be rediscovered on another day.

Friday, May 20, 2016

Button Belly


This sweet little boy is getting a g-tube. We knew the time would come and after an aspiration event on Saturday that resulted in a pneumonia, I called the surgeon. The same doctor who placed Waverly's will do Oliver's and repair a small umbilical hernia he has had for years. Because of the pneumonia, we have to wait at least 6 weeks for the surgery. And given that we have a vacation scheduled, we put it off for about 8 weeks.

Liquids have been the major source of his problems. Our plan it to use the g-tube for hydration and medication initially. As the disease progresses, we will then be set for nutrition as well.

We have been down this road before, so we know how beneficial the button was for Waverly. We know this is the best decision for Oliver. It certainly reminds us that our little boy's body continues to be ravaged by Sanfilippo Syndrome.

All who have met Oliver instantly love his big round belly. And it has been rubbed many times by many people. I hate that his smooth tummy will be marred by the g-tube. I came to love Wavey's button belly and I know I will fall in love with Ollie's as well.


Wednesday, May 18, 2016

Six Months

It has been six months since I last heard Waverly take a breath. Six months since I twirled her hair in my fingers and kissed her warm cheeks. I cannot believe so much time has passed since she was here with us.

There have been moments where I am confident she sent little signs - birds and wind chimes specifically. I am still waiting for her to come to me in a dream. And my heart has yet to feel confident that she is safe and loved wherever she is.

I haven't written much over the last month because I feel no inspiration. My mind is slowly coming to terms with the fact that she really is gone. The surface emotions are settling and instead I am left with this deep pain that has yet to be defined or understood. It has moved beyond simply missing her presence and moved to a new stage and a new depth of loss.

We were able to plant a Catawba Crepe Myrtle tree at the kids' school. It will blossom purple each summer. The tree will provide a place for those who love Waverly to visit and remember. 



Sunday, May 1, 2016

Sweet Oliver


This little boy has had a difficult week. Since returning from our vacation he started having some seizure activity again. We had ventured up to CHoP a few weeks ago to see a wonderful team of doctors, including the neurologist who diagnosed the kids. She recommended that we begin treating the seizures. After some thought we decided that this was a good course of action.

I have been dealing with quite a bit of guilt/regret since Waverly passed. I never felt like we adequately addressed her seizures and neurological issues. We opted to not medicate immediately and at times I second guess that approach. So with Oliver, we have decided to try being proactive with the seizures in the hopes of stopping some of the damage they can inflict on the brain.

Therefore a few days ago we started Ollie on a new med. We haven't seen any negative side effects. It is going to be a few months until he is up to an effective dose, so we will have to wait and see how it works. Fingers crossed and prayers sent.

Sweet Oliver continues to have petit mal seizures and some laughing ones as well. They seem to be disrupting his sleep. He is also very unsteady on his feet. I certainly hope the new medication works and is able to restore some balance, both literally and figuratively.