Meet the McNeil Family

Meet the McNeil Family

Wednesday, May 31, 2017

Shut Down

Recently I was in a meeting with someone I had never met before. She was underprepared and what should have taken a short time took over two hours. We were meeting about Oliver and assessing his developmental age. This is certainly not a fun subject and I was already irritated to have to be there in the first place. I was unsure what she actually knew about Oliver and the full arc of his diagnosis. Terminal diagnoses are thankfully not incredibly common within schools, so I try to show grace when together we are fumbling over words to set goals for a child who is regressing.

The elephant in the room was Waverly. Did she know about her?

Typically I would mention her in this setting, making sure the professional I was dealing with was aware and could therefore make the necessary changes. Avoid sibling talk, avoid the phrase "I would just die", and in general avoid discussing the future. I know this isn't easy. People stutter and trip over their words. I try to smile and say that it is okay. I usually make a statement about our society not dealing with death and grief very well.

I totally neglected my duties this time. And halfway through the interview, the woman looks up at me and thoughtfully says that she knows about Waverly. She expressed her sadness for my loss. It was everything I say I want in these types of interactions. Acknowledge her passing. Say her name. Express some sort of condolences.

My response - "Yes. And I don't want to discuss it any further." I didn't thank her. I didn't say Wavey's name. I said it. I looked down and coldly turned my body, giving her every indication that I was done.

We finished the assessment, shook hands and I tried to end the meeting with a kind word. Everything in me just wanted to get out of that windowless room into the fresh air. I wanted to scream, cry and run. I made my escape and I couldn't stop thinking about that single moment.

Why did I respond in such a way?

I was already on edge, unhappy with the way the meeting was progressing. I was also fasting for a doctor appointment, so no food or coffee for 18 hours. But something else snapped in me.

I knew that if I uttered her name I would fall apart. My emotions were welling up inside of me and I hadn't cried for awhile. Her name on my lips would bring a waterfall of tears and I knew this was not a safe place to fall apart. It was self-protection.

I share this story for one reason. Grace. She saw my terse response, thanked me for being direct and moved forward. She didn't shut down. She didn't turn cold. She saw before her a woman who was just trying to hold herself together in the midst of unfathomable grief, and she responded with grace.

May we all encounter and strive to be like her in that moment.

Monday, May 29, 2017

Oliver Update

We met with Palliative Care last week. They have been a part of our journey for over two years, but this appointment was solely focused on Oliver's future. And it was focused on Matt and I. The appointment is comfortable, like a therapy session. Low lamps and couches. How are we coping? What are our fears? It was a reminder that we do have some control over Oliver's path. As painful as these appointments can be, they are also incredibly supportive. 

I also met with Oliver's school psychologist to do some questionnaires for his triennial evaluation for special education. We were able to skip them three years ago, but the state dictates that they must now be completed. So I answered the questions, stopping after five no answers in a row. It no longer takes very long into the test to get there. Typically within the first page I can move onto the next section. It is both a relief and heartache. I also tackled the Vineland with the school social worker, unable to answer one question without a "not at all" response for the 10 Year questionnaire.

It was an emotionally heavy week. Thankfully we had fun weekend plans full of exploring, baseball games, gardens and BBQ. Focusing on present and enjoying the now.


Wednesday, May 24, 2017

Spring

My thoughts are jumbled this morning. I have felt very busy doing not much at all. May tends to be an emotional month. Allergies are in full force for Oliver, so throwing the windows open to enjoy the cool evenings isn't a possibility. Anniversaries and awareness days pop up on the calendar and with smiles, they certainly bring tears.

Spring has felt different ever since Waverly passed away. Rebirth and blossoms budding seem a slap in my face as I recoil from the joy of life awakening from winter slumber. Don't get me wrong, the colors are majestic. There is something beautiful about seeing flowers appear in gray places, like along the metro tracks on 66. The purple flowers (or weeds) are stunning. Autumn still feels like my season. I want to bundle up, turn away from bright lights to the fire's flicker. Spring is new, stripping away of the old. I want to cling to that which was.


Friday, May 12, 2017

Possibility vs Certainty

As I grieve Waverly, I also anticipate the loss of Oliver. And unlike the anticipatory grief I experienced with Wavey, I now know what to expect. What was a possibility with her is now a certainty with him. It wasn't that she could escape the death's grasp, but rather I couldn't fully understand it. Nor could I imagine what it would be like. But now as I look at Oliver, I know death. I know he can not avoid it. It is slowly creeping closer as the syndrome ravages his brain and body.

At times I need to sit in the seriousness of what lies ahead. I cannot let it dominate, but I also cannot avoid that which will happen. Exploring my grief and sadness, mourning that which was and what will be, can be a healing balm. It steadies me and gives me the strength to persist.

I heard someone mention that in Gaelic when a person experiences the loss of a loved one, the response is 'I will stand with you". No I'm sorries or condolences, rather a promise to walk through the grieving process. One that doesn't last thirty day or one year, but continues throughout a lifetime. I also read an article on removing the phrase "it will be okay" from our vocabulary and replacing it with "I'm here". When your child has a fall or a friend loses a job, a meaningful "I'm here" provides so much more comfort...when backed up with action.

Monday, May 8, 2017

T4

Matt and I read an article in the NYTimes a few years ago about a new memorial in Berlin honoring the lives of those murdered in the T4 program. Over 70,000 people with physical and intellectual disabilities were some of the first to be put to death by the Nazi regime. In 2014 a memorial was finally installed near the Tiergarten to bring light to this horrific part of Germany's past. It was high on our list of things to see during our time in Berlin.

It was a highly emotional moment for us. There is a wall as seen in the first picture below which details the story. It is written in German, English and a simplified German for those with intellectual disabilities. There is also a braille translation and an audio visual section. It is fully accessible. Reading the stories of the victims, I couldn't help by glance down at Oliver in his red wheelchair and think that he and Waverly would have been taken from us. They would have been starved to death or gassed.

The memorial is a long blue glass wall. I am still trying to fully understand the meaning of the design. It definitely evoked transparency to the horrors of the past. There was also an element of removing the veil and being seen. It had a profound impact on Matt and I. I am so thankful we were able to visit it with Oliver.






Sunday, May 7, 2017

One Last Big Trip

Our family loves to travel. It was supposed to be a part of us, the life of a foreign service officer. However the kids' diagnosis shattered that dream and a civil service family we became. As much as I like to fantasize about life abroad, I know that given the needs of our family, we could never have done it. And finally, after living in northern Virginia for 9 years, it feels like home.

We have never given us our yen for traveling though. As Waverly became more compromised, our journeys got smaller. However we wanted to take advantage of Oliver's relative health and booked a trip to Berlin. We have very dear friends who live there, so we took them up on their offer and decided to visit.

The weeks before we filled with anxiety. Oliver has been going through some changes and all of a sudden the thought of traveling so far away felt irresponsible. I worried about how he would be on such a long flight. Would he be able to easily adjust to the time change. How accessible were our destinations going to actually be for him.

The idea that this was going to be his "last big trip" kept playing over and over again in my head. I didn't want to go anymore. That label felt constricting and suffocating. Last big trip.

We packed our bags, face timed with our friends and took a deep breath. Sanfilippo be damned, we were going on an adventure.















Here are a few pictures. You can tell we had a fantastic time! We visited both Berlin and Prague. Oliver was a fantastic little traveler. Berlin was incredibly accessible, Prague a bit less so. We ate well, drank well and walked many miles each day.

I came home ready to plan our next adventure. No way is that going to be Oliver's last one.