Meet the McNeil Family

Meet the McNeil Family

Thursday, July 28, 2016

A Bump on the Head

Oliver had an appointment at CNMC this morning and thanks to the Metro's Safe Track project, we now have to allot two full hours for the 25 mile trek. We were out the door by 7:30 and arrived on time for his Modified Swallow Study, only there was an error in scheduling and his appointment was for Monday. I almost lost it then and there, but I reminded myself that a kind word is going to be my best friend in this situation. I explained our story, showed the order with the appointment information and said that we were willing to wait if they could please fit us in.

An hour later we were back in radiology getting prepped. I popped Oliver up in the x-ray chair and he waited ever so patiently for his first bite of food for the day, no worries that it was covered in barium paste. As we waited for the team to assemble, Oliver started to get a little antsy. I bent over my bag to grab the iPad, stood up straight and banged my head on some piece of equipment. I saw stars. Embarrassed and in a considerable amount of pain, I tried to shake it off and hold in the expletives that were aching to escape.

And then they came. Tears. It hurt, but not enough to make me cry. I turned my head to try to pull myself together and they started flowing even more. And in an instant that bump on my head released a few weeks worth of emotions. Flashes of memories of Oliver's surgery, my worries, my memories of Waverly, the realization that this g-tube is not a step I wanted to have to take already, my fears that Oliver's time is slipping by too quickly - they all poured out. And I was completely unable to stop them.

I am fairly certain the SLP and radiology tech thought I suffered a traumatic brain injury or an emotional breakdown. I muttered something about wanting to just keep moving forward and we did. I fed Oliver spoonfuls of barium purees, cups of barium nectar and graham crackers coated in barium paste  And with each of his swallows, snot dripped from my nose and tears fell off my face. I was a mess.

I haven't had this happen before. A bit of physical pain causing an avalanche of emotional pain to rush forth. I have read about other bereaved parents having a similar outburst, but this was my first time. It is always cathartic to have a good cry and feel. However I try to do so in the privacy of my home or surrounded by a few close friends. Not in front of 5 strangers during a medical procedure.

Two Belly Buttons

Oliver had his g-tube placed on Friday morning, along with repairing his umbilical hernia. The same surgeon who did Waverly's was able to do Oliver's. She did a wonderful job and he was up and walking the following day. This time around the g-tube was no longer a scary and overwhelming ordeal. We have three years of experience with them under our belts. We were even able to teach the nurses a thing or two about them.

Oliver did great. He didn't complain or thrash around. He slept well and allowed all of the medical staff to check him out repeatedly. We were even able to see our Palliative Care doctor and geneticist. He was a super patient. We are so proud of him.

Tuesday, July 19, 2016

Eight Months

I don't have to set a reminder. My iCal doesn't send an alert. I anticipate the date weeks before it arrives and I find myself reeling from it for days after. 

The eighteenth.

It jumps from the screen. My eyes spot it immediately. Intrinsically I avoid scheduling appointments or activities on that day.

I don't curl into a ball or cry all day. I simply remember. I replay the morning of her passing. I feel her absence more deeply. I ponder time and how it can feel like she was here yesterday and yet also feel like she has been gone for years. I hope for signs. I hold Oliver closer. I always end the night in her room, twirling a ribbon of her hair.

Another month has passed and I can see the one year mark approaching. I am thankful for friends who have been down this road, who are able to advise and guide me. My dear friend, Helen, who lost two children to Sanfilippo, has been my guidepost. When I told her about our plans to be on vacation for the one year anniversary she wisely said that I should reconsider. Knowing my grief journey and the ways it has mirrored hers, she speaks from experience. Being home in my own space with all of my memories will most likely be a better option. A safer space to experience what I anticipate to be an incredibly difficult process. As I arrive closer to one year without Waverly, I am confident that there is no place I would rather be than in her room surrounded by a blanket of memories.

Monday, July 18, 2016

Mid-West Friends Tour

We returned from a 10 day road trip adventure to the mid-west. Thankfully Oliver is great in the car, because we drove a lot of miles. We have some special friends in Illinois, Indiana, Michigan and Ohio, so we packed up the van and off we went. Thanks to all of our friends who met us, hosted us and spent time with us!

Waverly was always more of a dare devil than Oliver, but I thought he would like the swings. I may have overestimated his enjoyment. But we survived and made a memory. 

Matt loves Rick Bayless, so we made a point to visit two of his restaurants in Chicago. 

 A little time spent on the Indian dunes on Lake Michigan.

 A definite highlight was spending the afternoon with these two amazing families. There is nothing like connecting with people to truly understand.

 Another highlight was spending a few days with my college best friends and their families. We got a picture of all of our kids, including Waverly's baa-baa.

We made a quick pit stop at our alma mater. 

I love sharing a king size hotel bed with Oliver. He is almost always horizontal and he likes to stick his feet underneath me. As uncomfortable as it sounds, I relish in it.

Wednesday, July 6, 2016

Happy Half Birthday, Oliver!

When your birthday falls between Christmas and New Year's Eve, you have to celebrate half birthdays. Oliver is 9.5 years old! He loved each and every bite of his ice cream cake.

Friday, July 1, 2016

Six Months On

My lovely friend, Laura, wrote this poem on the sixth month anniversary of Wavey's passing. She has an incredible ability to take my emotional chaos and put it into beautiful words.


"Six Months On"
for Shannon
By Laura Fabrycky

Ask yourself:
How long can you hold your breath?
How long under that dark wave,
down under its heavy
press, the sandy churn?
How long perdure?
How long withstand
the instinct to gasp,
watching for one break in the waves
to breathe that one life in,
any hopeful apparition,
as your lungs ache to burst with longing?
One never gets over the need for air.


The importance of friendship has been dominating my thoughts this week. 

Matt and I hosted a little picnic for friends Saturday. Five couples and their children filled our home for a few hours. All of them have had a significant impact on our family, especially within the past year. It was a beautiful opportunity to thank them and introduce some of them to one another.

On Sunday we went to a going away party for friends who are moving to Germany this month. We have known them for 10 years. Laura and I were pregnant when our husband's joined the Foreign Service. We immediately bonded and forged a friendship that has lasted through many years and many countries. Three years ago they moved back to Virginia and I was beyond thrilled. I have been without close friends in the area for quite some time. (The downside of living in transient DC and having so many friends on various tours throughout the world.)

Laura and I invested in one another's lives. Creating time each month to sit with one another and share over coffee. When Waverly went on hospice it was Laura who took control of meal delivery coordination, yard work sign ups, and fielding phone calls for me. She provided a shield of protection around our family - allowing space for us to simply be with Waverly.

A little over a week before Waverly died, one of my closest friends flew in for a long weekend to be with us. She cleaned, folded laundry, hung a sign on the door to keep away sales people, conveyed my concerns to a nurse when my emotions took over and I was unable to speak, sipped tea with me and forced me to take bites of food. Kamarah had the incredible gift of being present, but respected our space. She whisked around the house making beds and preparing dinner and then held me on the couch when I needed comfort.

When Kamarah left, I panicked. Her presence, especially at night when I feared Wavey's death, was profound. Knowing there was another person here with us was the most calming sensation. So much so that I called Laura the afternoon Kamarah left. I needed her presence. And she came with dinner in one hand and her pillow in another; leaving behind her baby boy for the first time. She stayed in our guest room praying for us and available within a moment's notice. The offer stood that she would be there for every night to come, for as long as I needed.

The act of these two women coming into our home, knowing that our daughter could die during their stay, is simply amazing. I am so thankful for friends who will enter the dark to be present. 

(I also have to acknowledge my dear friend, Michele, who lives out of the country. I know she would have been here in a second had I asked. Indeed she stayed with me for a few days after the funeral, knowing I would need her support. Very wise.)