Meet the McNeil Family

Meet the McNeil Family

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


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.

Friday, April 14, 2017

The Beep of the Pump

The time has come for us to utilize Oliver's g-tube for more than just medication. After making minor adjustments for over a year, we need to make some major changes. I have been prepared with all of the equipment and prescriptions submitted to insurance for food, but nothing prepares you for this.

I have been through it already with Waverly. It was obvious with her. Feeding her was taking hours and she was losing weight. Oliver isn't having those symptoms, but he is experiencing a wet cough after each meal. A sign that he isn't fully clearing his esophagus of food and some may have entered his trachea. It is also a obvious sign of high aspiration risk.

He can certainly still eat by mouth, but we are altering textures and consistencies. And we have introduced a pouch of Real Food Blends as his dinner each night. He tends to be tired by the end of the day, which means his swallowing muscles are also fatigued. I used muscle memory last night as I prepped the pump and filled the bag with his food. The sounds of the pump were both musical and alarming. I was taken back moments with Waverly, nourishing her failing body and thankful for a way to keep her satiated. And I was startled to the present, knowing I am doing them same thing for Oliver now.

Tuesday, April 11, 2017

Numbness Has Faded

Matt and I were able to fly to Orlando last weekend for Blair's funeral. With the help from family and friends, we left Oliver in their care and were able to spend a few days away. This is the third funeral we have attended since Waverly's. The first two were within weeks of hers and looking back I have realized how numb I must have been. I was in a daze, grieving with my friends but unable to fully feel what was happening. I felt this one.

It was a beautiful service. Everyone was asked to wear purple and the chapel was filled with purple hued guests supporting the Chapin family. Blair touched so many lives and she was deeply loved. Her 13 year old sister spoke eloquently about her big sister, her inspiration. And her dad gave a eulogy that made us all laugh, smile, and cry. It was perfection.

Sorrow and Joy continue to be the theme of my journey. Vacillating between tears and laughs throughout the day. I mourn the loss of Blair. And I ache for my friend, Susan, as she navigates life without one of her children. I now know grief and I hate knowing my friend has to walk this path. Yet we grieve because we love.

I thought of Waverly. I thought of her as I saw similarities in Blair's photos - the same chubby cheeks and soulful eyes. I thought of her when Blackbird was played during the slide show, an homage to Wavey. I remember walking down the aisle behind the priests, ready for the service to begin. And I remember the painful walk out of the church, knowing the funeral was over. The last event I had planned for Waverly was complete. Life continues on and I have to adapt to the after.

Tuesday, April 4, 2017


I met Blair in December of 2009. It was a last minute decision to attend the MPS Conference held in Orlando. Waverly and I flew down on our own, leaving the boys behind to bond. Blair's mom, Susan, organized all of the childcare for the conference. She had friends and family members volunteer to help with all of the children, so the parents could be attentive to the many speakers. I was nervous about leaving a very rambunctious Wavey with a stranger, but Susan assigned one of her friends to be Wavey's buddy. They were a perfect match.

Susan immediately saw familiarity in Waverly. She told me how much she reminded her of her own daughter, Blair. I remember meeting Blair and see the similarity. Blair lit up the room with her smile and had an infectious laugh. She bounced around with such confidence and I was amazed at her gross motor skills. She was also dressed like Waverly, with a dress from one of our favorite shops. Susan and I shared a similar philosophy of always dressing our girls in lovely outfits and having their hair done up nicely.

Over the years, we have had the opportunity to meet up with Chapin family numerous times. They live in Orlando. Since Disney World has always been a special place for our family, we found ourselves passing through their hometown every year. This provided us the chance to explore the parks with them or being welcomed into their home.

I remember meeting Susan and Blair at Universal Studios. Blair loved Barney. I mean LOVED him. They were still hosting a live Barney show at Universal, so we took the kids. Watching Blair watch Barney was like watching those videos of young women seeing the Beatles. She was ecstatic. A smile stretched out across her face. Her legs kicking and feet flailing. Clapping and shrieking with delight. It was pure happiness. I wanted to bottle it.

Years later we met up at Hollywood Studios. We stood in a very long line to meet Mickey Mouse in his Fantasia gear. A very kind cast member pulled us out of the line and allowed the girls early access to the big guy. We got them out of their chairs, straightened their ear hats, and let them at him. Hugs abounded and lots of giggling.

Waverly & Blair were buddies. They instinctively knew one another, reaching for the other's hand.

The last time I saw Blair was after Waverly had passed away. We went to the Chapins for dinner. I loved sitting next to Blair, stroking her hair and holding her soft hand. It provided a small reminder of Waverly. And before I left I remember kneeling down and hugging her. She was finished with the hug before I was ready to let go. Tears fell as I touched her incredibly soft hair. I didn't want to leave the memory of Waverly which she provided. However I also didn't want to leave her.

When we say goodbye to our precious friends with Sanfilippo, there is always the threat that this may be the last time. We hold the hug a bit longer. We gaze into their eyes and say we love them. We whisper a prayer that they would be blessed beyond measure and always feel loved.

Our dear friend Blair passed away this morning. Her parents are mourning. Her little sister is grieving. I feel helpless watching from afar. 

Blair inspired. Her parents loved her from beginning to end. Her life was filled with love and adventure. Countless people have been changed by knowing her. She made a difference in this world.

Please pray for Blair's family.

Blair & Waverly 2015

Monday, March 20, 2017

How To Get Through Hospice

I had multiple conversations with people recently about what was helpful for our family whilst Waverly was on hospice. I thought this could be a beneficial post for many of you.

For Friends
1. Meal delivery is such a fantastic way to help. However, many families don't have the time or energy to chat with visitors. Setting up a cooler on the front porch is a great system. People can fill the cooler with food and then text the family saying a meal was just delivered. (We had my cell number written on a paper taped to the cooler lid.)
2. In addition to meals, we had friends bring paper products - plates, utensils, napkins, cups, etc. Not super environmental, but it certainly was nice to just toss stuff after each meal. 
3. Get creative! When setting up a meal train it is nice to get information on food allergies and aversions. The family is going to get a lot of lasagna and chili, so try something new. Also take out from a favorite restaurant is a nice treat. Or just bring snack type items - crackers, cheese, cut up fruit, etc. Having small bites at the ready is so helpful.
4. Fill the house with flowers. I love the fragrance and the beauty flowers provide. And it doesn't have to be a pricey arrangement. We had fresh tulips when Waverly was on hospice and I still buy myself a bunch to brighten the house.
5. Coffee, cupcakes and ice cream can be delivered. Get together with some friends and ship some special treats if you aren't local and able to deliver a meal.

For Families
Don't be afraid to create boundaries for yourself. We ended up hanging a sign on our door asking people not to knock or ring the doorbell. We were focusing on our daughter and couldn't take visitors.  Even our UPS man and postman knew to just leave packages for us; we would find them. People want to come to say goodbye or to check in on you. Take it moment by moment. Set time limits. When you are in the midst of chaos, it is nice to be able to control some things.

Accept help and try to remember that most people have very good intentions. People are sad and you are in the strange position of grieving and comforting those around you. There are those who want to "cling on". I think some people find purpose in your tragedy. Blow them off. 

As difficult as it is, try to be specific with needs. We needed people to help us drive Oliver back and forth to school. We also needed help with raking leaves at the end of autumn. Thankfully we had two friends act as gate keepers for us. They fielded questions and requests. If I needed milk from the grocery store, an email was sent out to those who wanted to help. Soon after I would get a text saying milk was in the cooler. It was incredibly helpful.

I felt a lot of pressure to thank everyone. I realized that I could not possibly keep up. A quick reply text sufficed. Plus my gatekeeper organizer friends were forward thinking, reminding everyone with each message just how grateful we were.

These certainly don't apply to everyone and are only meant as suggestions. I would say don't pop by unexpectedly. A text or a note is a much less intrusive way to say you are thinking of them. Anything you can do to express your love will be appreciated.

Sunday, March 19, 2017

16 Months and One Day

The second year is more difficult, they said. I couldn't imagine it could possibly be more painful than they rawness of those first few weeks. When the tears were constantly flowing and my chest felt like it would collapse from the heartache. I am still not sure it is more difficult, but it certainly is different.

I go about my routine and although Waverly is always present in my thoughts, my mind knows she has died. I no longer glance into my mirror and expect to see her smiling face. My internal alarm clock no longer goes off at 9:30 reminding me to hook up her feeding pump for her overnight meal. Yet I still stutter when asking for a table for three.

When grief descends, it comes like a fog. Rolling in from the distance, I can see it approach and feel the change. Ominous and oppressive, it takes it's hold and settles in. For a while I find comfort in it. I can hide and burrow, allowing myself to feel. Moody.

I am in the fog now. I have dear friends dealing with serious complications from Sanfilippo. A friend's daughter passed away this week. I find myself back there, in the weeks before Waverly died remembering the awfulness of death. The tension of wanting her suffering to end, but knowing that losing her would be utter devastation.

And as I sit in this fog, I see Oliver. Clearly. And I panic. 

Wednesday, March 15, 2017

A Continuation

Another child passed away this morning from Sanfilippo Syndrome. I have never met the family, but we have exchanged messages through the years. We have liked one another's photos on Facebook. We have connected through the keyboard many times. My heart breaks for them.

My most recent blog post was about grief and social media. I suppose this is going to become a continuation. The internet and especially Facebook has allowed communities to spring up. Families affected by rare diseases have found one another online. We can share tips on medication or equipment, the best diapers for overnight, exchange items our children have outgrown. Through all of these posts and messages, relationships form. Friendships are made and connections deepen with those you find common ground.

I am so thankful for those women who have gone from profile pics to true friends. We text and call one another. We have vacationed together and met for dinner whilst passing through towns. We show up for special events. And we are there to mourn together.

It is risky to enter into these communities. Not only do I have to watch the disease ravage my two children, I also have to see it ravage my friends' kids. Girls and boys I have grown to love over the years succumb to the disease and I grieve. And each time I am faced with grieving Waverly all over again.

As a form of self-protection I limit my contact with newly diagnosed families. It is not because I don't care, but rather I am not sure my heart can take bonding with another terminally ill child. It hurts to watch another family suffer.

So this is another public service announcement for those entrenched in rare disease. It is okay to say enough. It is okay to retreat and put up some barriers. Protect your heart. This journey is difficult enough.

Monday, March 6, 2017

Social Media and Grief

I have been thinking a lot about social media from the prospective of a grieving mother. I have been talking with several different Sanfilippo families, some of whom have a child who has passed away and others who have a child in the throws of the disease. I am not sure how fruitful this post may be, but I am hoping it can provide some reassurance to someone out there.

I have always been one to share our experiences. It is therapeutic for me to write about my feelings, allowing them to flow out and see where they guide me. It is also a beautiful journal that I have been able to delve back into the years prior and reflect on all I have learned and how I have changed. I also hope our story can help others on the rare disease journey and now on the grief journey.

The year before Waverly died I drastically changed the way I shared on this blog and via my social media platforms. She became very sick with the flu and I could see in her, even after her recovery, that she didn't have much time left on this earth. My mom gut was raging, prompting me to prepare for her passing. We did many things. Met with our doctors to have a DNR order in place, spoke with the priests at our church about funeral plans, and I also changed the way I shared about her. I turned inward and wanted to be very protective of her. This was her journey and my job as her mother was to walk with her through it from beginning to end.

I wanted to honor her privacy and personhood. I began by purging my friends list on Facebook. I wanted to be surrounded by actual friends. I had seen other children's passings as theater at times. I have a blog and a Facebook page to share things with those on the periphery. I could post in support groups as needed. However I felt the need to pull in, almost like nesting before giving birth. I wanted to create the safest and calmest space for what was going to become the darkest of time.

I also began sharing photos of Waverly that didn't show the way the disease was ravaging her. There were more photos of her beautiful hands gripping a toy, her feet crossed in her fuzzy colorful socks, her shadow on the sidewalk after a long walk in the neighborhood. Still describing the symptoms, but allowing my words to create the picture.

Those of you who read the blog know that it took me a year to share what her final day on earth was like. I wanted to hold that like a precious secret in my heart. And I still have details that are mine alone.

It wasn't right nor wrong. It was a choice I made. And I am so thankful I did. It was what I needed. It was what she needed.

All of this to say, as I watch fellow families deal with those Latter Days. Create a safe space for yourself and be cognizant of the fact that this is about your child. Retreat, share, delete, unfriend, post photos - do whatever is best for your mental health and heart. You have some control in the journey.

Friday, February 17, 2017


These thoughts have been rolling around in my head this last week and I had to put them down on paper. Please forgive my elementary attempt at hermeneutics. 


Joy and Sorrow has become the theme of my life. Two simple words to describe such complexity. It is the reason I love the movie "Inside Out". A revelation that joy cannot exist alone, it requires sadness to be relevant. Even at Waverly's funeral, my dear friend and pastor, gave a homily with this idea as a primary focus.

Many years ago when Waverly & Oliver were diagnosed I was angry (still am at times, don't get me wrong). My ability to pray was destroyed. I didn't want to pray for a cure. It felt hollow and naive. Genetics has played its part and there was nothing we could do to change that. I cringe when people say they pray for healing. I would ask instead they pray for strength, comfort, clarity, sleep, wisdom. This thought isn't to get in a theological debate about God's omnipotence.

As I was coping with diagnosis and a ferocious amount of anger, a very wise friend reminded me to keep the communication route open with God. She told me to cry, scream, and wail - He would understand. Years later, lots of twists and turns, wrestling with my faith, I find myself so grateful for that advice.

I was recently at a retreat. The speaker referenced the verses Romans 8:26, 27. It resonated with me and took me back to those dark days. 

"Meanwhile, the moment we get tired in the waiting, God's spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God." - Romans 8:26, 27 The Message

As I sat there staring at these beautiful verses , it occurred to me that instead of being reminded of this powerful message, I was constantly told to sit on the following verse, Romans 8:28. This is a verse that anyone who has darkened the door of a church has heard. And in my opinion it is one of the verses that can be used to belittle sorrow and shame hurt.

"That's why we can be so sure that every detail if our lives of love for God is worked into something good. " - Romans 8:28 The Message

I am in no way a biblical scholar. I haven't spent time studying Greek. But I have been in the church my entire life. And while I have learned songs, memorized the verse and heard countless referenced to "all things work together for good to them that love the Lord"; I have rarely seen the inclusion of the verses prior.

For years my prayers were wordless sighs, aching groans from the depths. And that is ok.

Monday, February 13, 2017

Hospital Packing List

I have been asked twice in the last few weeks about a hospital packing list. I keep a running list based on our experiences and I thought I would share it. I hope you find it helpful. Let me know if you can think of other items to add.

For Your Child
- Comfy pjs (nightgown if wearing diapers)
- Warm socks/slippers
- Favorite toy/stuffy/blanket
- iPad or portable DVD player
- Toiletry kit
- Personal diapers/pull-ups
- Sippy cup
- Favorite snacks
- Change of clothes
- List of medications (you don't have the bring the meds unless asked to; the hospital will supply daily meds whilst in the hospital)
- Lip balm
- Body lotion

For You
- Change of clothes x 2+ (I have been vomited on post-anesthesia many times)
- PJs that you won't be too embarrassed to be seen in; robe
- Slippers or flip-flops
- Cash for vending machines
- Favorite snacks
- Gum or mints
- Something to do whilst waiting (book, knitting, coloring, notecards, etc.)
- Pen and paper to write down questions or instructions ; also consider audio recording on your phone instructions if you feel overwhelmed
- Toiletries
- Towels - hospital towels are notoriously thin and scratchy
- Ear buds

Thursday, February 9, 2017

Past Tense

In the many phases that are grief I have discovered I no longer stutter over is. Waverly was. It is becoming easier for the word was to float off my tongue with all of its heaviness. I still flinch when I hear it, but it is part of my vocabulary.

I no longer confuse her name with Oliver's or Watson's. It isn't said as often and is spoken more reverently, memorialized. I speak to her often. Each morning I enter her room and open her blinds, greeting her with a simple quip. Her room is still her room, even though our desk is now there and most of her furniture is gone. Her name is still emblazoned on the wall in bright pink. Her favorite toys are displayed on her bookshelf.

Instead of the content deluge of reminders that she is no longer here, there are moments. Today I caught a glimpse of one of her princess dolls that I keep in the diaper bag. Oliver likes to hold them, so I keep one next to his football. All of a sudden the emotions tumbled forth and I ached to pass that princess back to her soft little hands. 

Thursday, January 19, 2017

A Dream

Yesterday morning I woke up before dawn to the sound of Waverly. It was a laugh she had that would morph into a cry, especially in the mornings if she was stiff or lonely. I was dreaming and she roused me from sleep. I sat up and for a millisecond thought it was really her; as if the last 14 months were a dream. Oliver was sound asleep and while very similar, they do not sound the same at all. I had the strangest feeling all day. Rationally knowing it was not her, but secretly wishing it were real. However why the cry at the end? Why a reminder of the pain that was?

It was the 18th. Exactly 14 months since she left this earth.

Waverly is becoming a dream. I vividly remember her. I can still smell her when I open her closet and hold some of her favorite dresses or hug a special stuffed animal. I can see her face in photos in nearly every room in our home. I can hear her laugh when I replay a video on my phone. But I no longer call Oliver Waverly. Or Watson Waverly. I don't go into her room expecting to see her bed. When I open up the drawers in Oliver's room, I am no longer surprised to see Ollie's clothing in them. 

Many of the minute daily reminders have faded. And I miss that they have faded; I am aware of their absence. The dull ache that occasionally roars to the surface is ever present, always with me.

Friday, January 6, 2017

Double Digits

Sweet little Oliver turned 10 years old on December 30th. Double digits are a big deal. His birthday often gets lost in the midst of the holidays. This time Matt took off for the day and we tried to do some things he loves. We started at our favorite bakery and filled him with mixed berry croissants and maple doughnuts. Then lots of Mickey Mouse Clubhouse combined with snuggles on the couch. I made a pot roast and my parents joined us for dinner. We ended the day with his favorite - ice cream.

I have written about the difficulties of birthdays for years. Most parents want time to slow down, but those of us raising children with life limiting illnesses especially want to savor each moment and pause time. As much as I want to celebrate Ollie turning ten years old, I also mourn another year passing.

Our son with an old soul is slowing down. He isn't walking as far as he used to. He would rather snuggle on the couch than bounce around in front of the tv. And his swallowing is deteriorating so much so that I see us utilizing his g-tube sooner rather than later. When he gives you eye contact, he looks straight into your soul. He is my gentle giant.