Meet the McNeil Family

Meet the McNeil Family

Tuesday, April 26, 2016

Costa Rica!

Oliver and I took a last minute trip to Costa Rica last week. We were able to stay with some dear friends and we spent a day with our favorite New Zealand friends. I loved having this adventure with him. More memories and more travel ahead!

Oliver on the plane. Thankful for the iPad and lots of snacks. 

Chilling in the San Jose sunshine 

We took a tour of La Paz Waterfall Garden and saw some amazing animals.

And Costa Rican waterfalls!

Oliver in the butterfly rooms. Check out the gorgeous blue butterfly!

Posing in front of the waterfalls.

Breakfast on the patio 

Oliver with his buddies Judah and Chloe

Monday, April 25, 2016

Restraint

Last week I was asked to speak at our church to a group of women. I decided to share what I wrote. It provides a good introduction to those new to the blog and our story.

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Restraint

My name is Shannon McNeil. Our family has attended Restoration for a year. We typically sat in the last row of the church during the 11:00 service to accommodate my daughter’s wheelchair. Five months ago we moved forward a few rows.

In 2006 we were a budding family with the entire world open to us. A sweet spirited 3 year old girl and a bouncing baby boy. My husband had recently joined the Foreign Service and we were off to Chennai India for our first tour. Our first roadblock came when our son, Oliver, failed his newborn hearing test. A month later at 6 weeks of age he was outfitted with hearing aids. And thanks to his audiologist’s expert ear, our daughter, Waverly, was also diagnosed with a hearing loss. Another pair of hearing aids was purchased. And I grieved. Two children with hearing impairments and I felt ill equipped to deal with it. Our world became smaller and scarier.

Days later our assignment to Chennai was pulled and the kids were declared medically ineligible to travel to many parts of the world. Our dream of being world wide available and ready to explore as a family was denied.

We were offered London. They had good speech therapy services and audiological care that our kids needed. I was even able to find a preschool for hearing impaired children for Waverly. A little glimmer of light that the entire world wasn’t closed off, just parts. We could still dream, explore and flourish.

Within a few months, we were advised by Waverly’s teachers and therapists to consult a pediatric neurologist. They saw more than simply a hearing impairment. Months of MRIs, blood work-ups, genetics consults and a flight back to the US culminated in a horrible diagnosis. Waverly had a rare neurodegenerative disease called Mucopolysaccharidosis type 3 or Sanfilippo Syndrome. 

To get a bit medical on you:

***Sanfilippo Syndrome is characterized by a missing enzyme. This particular enzyme breaks down a specific sugar molecule. Since it is not broken down, it builds up throughout the body and especially in the brain. Kids typically develop normally for the first few years and then begin to plateau, before losing all skills. Eventually they lose the ability to talk, walk and swallow.*** 

The neurologists told us there was no cure, no treatment, some clinical trials were being talked about. They advised us to enjoy the time we were given and make memories. I felt our world grow ever smaller with the words “rare fatal disorder.”

They then mentioned having Oliver tested.

One month later on the streets of London I received a phone call that Oliver also had Sanfilippo. Our world grew darker and smaller once again. Overwhelmed with the future we curtailed from the UK and made a home in northern Virginia. The kids were declared medically ineligible to travel overseas at all with the State Department.

Sanfilippo took more of our freedom, our dreams and would eventually take our children.

We hunkered down in our little Vienna apartment. Matt worked. I gave up any hope of a career or fulfilling my dream of returning to school for an advanced degree. Waverly and Oliver’s care took all of my time. Managing insurance calls, therapy sessions, doctor appointments, school runs, IEP meetings. Waverly was growing more and more different from her peers. Play dates were no longer possible, church child care couldn’t handle her, going out grew difficult. 

I became very angry. Angry at people who would stare or avoid making eye contact with us. Angry that our dreams were no longer possible and that Sanfilippo was going to restrain our life.

I also became very jealous. Jealous of all the families who dodged this genetic mutation bullet.

I fought against the restraints for many years, closing myself off in a desperate act of protecting the kids and myself. I only saw limitations and dead ends.

And then I slowly began to embrace our circumstances. Waverly & Oliver have so much to offer the world around them. They ooze grace and kindness. They deserve all that we are able to provide within the constraints of accessibility, safety, and what brings them joy. We may have limits, but we can still thrive within them.

In the 8 years since the kids’ were diagnosed, I have been asked to give up things. Career, education, choice of where to live, the option of having more children. Yet I no longer see those things as a sacrifice. I have been given the gift of mothering two amazing children who have changed me to my core, who have had more of an impact on this world than most.

This is not to say that I no longer wish life were different. I would give my life to stop Waverly & Oliver’s suffering. I still scream at God and at times it’s my only way of communicating because rage is my sole emotion. Jealousy creeps in almost daily.

In II Corinthians 1:3-4 Paul wrote, 3 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

By being limited I was actually opened up to so much more.

Grace. Love. Acceptance. Kindness. Joy. Humility. Patience. And also Sorrow. Grief. Pain. Loss.          

Five months ago I laid next to Waverly as she took her final breath. All of those years of anticipating grief could not prepare me for her death. 


I was able to be there from the beginning to the end of Waverly’s beautiful life. And I will have the honor of doing the same for Oliver. 

Monday, April 18, 2016

Five Months

It has been five months. A moment and a lifetime twisted into one. Her smell is fading from her clothes and pillows, instead scented by my tears and perfume. Her BaaBaa is mangled by my tight grip on him throughout the night. I miss her most at night when I pass her bedroom door.

She is reminding me that she is still with me. There will be moments when I cry out to her and her wind chimes sing. I feel her spirit, but oh how I long to feel her hand in mine.

Thursday, April 7, 2016

#sayhername

I started using Waverly's name whenever I get a coffee from Starbucks or put my name in for a table at a restaurant. I love hearing her name said aloud. Some friends have read my blog posts and listened to my pleas to continue to say Waverly's name. They have been filling my Facebook feed and phone with photos of Wavey's name. It is a small, but incredibly meaningful tribute to my darling girl. Thank you for sharing and reminding me that she is loved.