Meet the McNeil Family

Meet the McNeil Family

Saturday, August 19, 2017

21 Months

Twenty one months.
Ninety two weeks.
Six hundred and forty days.

No, I am not keeping some morbid calendar. Thanks to a quick Google search I could discover the weeks and days. However each eighteenth of the month my breath catches as I realize another month has passed.

I miss her.

My gaze remains on her photos scattered around the house. I keep finding myself standing in her room, not knowing what to do with myself whilst I am in there. I still whisper goodnight to her as I go to bed.

Our house is beginning to look like it did when she was around. We had to get the shower chair out of  the storage closet, because Oliver is becoming unsteady on his feet. Monthly deliveries of formula are arriving and an IV pole with a feeding pump now stands in our dining room.

Oliver is reminding us of Waverly. He is choosing to snuggle on the couch instead of standing in front of the TV. He is leaning forward and sideways as he sits, requiring us to put more effort into positioning him properly. When he awakes each morning he needs extra time to find his balance and lose stiffness.

Not forgotten for a moment.

Wednesday, August 16, 2017

Beach Trip

Oliver and I took an impromptu trip to Cape May on Monday. We typically go every June, but we couldn't make it happen this year. I am not a summer beach person per se, a yearly dose of salty air and sand between my toes is good for my soul. We had friends who were there and encouraged us to pop over and join them. So I booked a room, loaded up the car, and we set off early Monday morning for a little adventure.

Thankfully Oliver is awesome in the car. He doesn't mind long road trips, so long as the DVD player is working. We arrived in the mid-morning and joined our friends on the beach. They had arranged for extra umbrellas and chairs for us that day. Oliver used to LOVE the beach. When he was younger he enjoyed playing in the sand, shoveling it into buckets and sifters. Then he moved on to the surf. He giggled as he watched the waves crash over his feet as they sunk in the shifting sand. He would get dizzy watching the water recede back into the ocean. And he had no fear of walking straight out into the water. We would take long strolls on the shore and spend hours getting our feet wet.

This time was different. He cried as we walked in the warm sand. He started to make his stressed sounds as we approached the water and continually wanted to walk away from the waves. We settled on a lounge chair and he was content to watch from under an umbrella. It was peaceful and relaxing, but I couldn't help but miss the old days of playing in the water.


If you have ever been to Cape May you know that the appeal of this small beach town is that it maintains its historical beauty. Part of this means it isn't very accessible. Most of the hotels are B&Bs or Inns lacking any rooms on the first floor. Restaurants and shops have stairs leading into the front door. Our second floor room was lovely, but without the help of my friend's husband, we would have fallen down the rickety steep stairs. 

I fancy myself an adventurer, never allowing the kids' disabilities to impede our travels. But as I did with Waverly, I have come to realize that Oliver needs accessible accommodations. I also am not able to travel alone with him as easily as I once was. This is a bit heartbreaking for this independent momma.

Oliver is my little old soul boy. He loves being home. He excitedly climbs into his bed. He enjoys sitting in his "recliner" and watching his "programs". As much as I want to experience the world with him, at this stage in his life he is content to sit back and watch. And that is ok.

This certainly does not mean that we are becoming hermits and never leaving the comforts of home, but it does mean that Oliver's happiness has to supersede my grandiose sense of adventure. We will still visit the beach, but we will find an accessible room and slow down. We will sit in the comfort of our (wheel)chairs, hold hands and enjoy the view. We will have daily trips to the ice cream shop. We will find enjoyment in snuggling together on the couch watching Mickey Mouse for hours.

I miss what was, but I can enjoy that which is.

Saturday, August 5, 2017

Pity

A few weeks ago a friend accompanied me to drop Oliver off at a day camp for children with special needs. As we waited to check him in, we were surrounded by kids ready to have an adventure. Some were in wheelchairs, others were walking independently vocalizing their excitement. Parents were jostling gait trainers, orthotics, feeding pumps, backpacks full of snacks. Kids were tugging at their caregivers arms, shrieking, snoozing, bolting for the playground doors.

After we passed Oliver off to his buddy and signed the check-in sheet, we walked outside. My friend sighed and said how sad it was. He was depressed.

I was taken aback. We had just been in such a joyful environment. The building was beautifully decorated with a wall of glass overlooking a huge playground designed specifically for kids of all abilities. The staff was warm, greeting everyone with a smile. Parents were giddy with excitement to have a safe and capable space for their children to enjoy a quintessential summer camp day.

My perspective of what just occurred was vastly different from his.

He saw brokenness.
I saw beauty.
He felt pity.
I felt thankful.
He heard noise.
I heard music.

His response was completely normal. His heart ached for the families, wishing their children could be healed. He has a general understanding of the additional stressors they face - physically, emotionally, mentally, financially, relationally, spiritually. He felt compassion.

He kept saying "I pity them". My visceral reaction to that word is anger. Pity can have a haughty tone and come across as condensing. But he in no way thought that. He was sorrowful for the suffering of these beautiful families.

It was a lesson in grace.
For both of us.