Meet the McNeil Family

Meet the McNeil Family

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.

Wednesday, December 28, 2016


Christmas has always been difficult for me since the kids' were diagnosed. Initially I tried to push the sorrow away with sparkling lights and gifts. However as Waverly & Oliver's disease progressed, their interest in the holiday diminished. Oliver hasn't shown any interest in presents for years, he doesn't notice the Christmas lights and I don't think he spotted the Christmas tree. Our life gets quiet as those around get so busy with preparations. 

We attended Christmas Eve service and (thank to his iPad), Oliver sat through the entire service. We decided to go to Founding Farmers for dinner. It had been a tradition in the past to go there and then walk to see the National Christmas Tree. We had a lovely dinner and it felt comforting to be surrounding by tables of other families celebrating the holiday together. Christmas night we took Oliver to Meadowlark to walk through the gardens and see the lights. It was a wonderful way to close out the day and I think it will become a new family tradition.

Monday, December 19, 2016


“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it. At first that sounds very hard, but at the same time it is also a great comfort. For to the extent the emptiness truly remains unfilled one remains connected to the other person through it.
It is wrong to say that God fills the emptiness. God in no way fills it but much more leaves it precisely unfilled and thus helps us preserve—even in pain—the authentic relationship. Furthermore, the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain.”
― Dietrich Bonhoeffer

I shared the above quote on December 18th of 2015, exactly one month after Waverly passed away. My hope was in this sentiment. Days were dark and filled with pain, but I was also cognizant of the silent joy filling the crevices. As heartbroken as I was, it was an absolute honor to be Waverly's mom. She filled my life with love and happiness. Walking through her final weeks, as her body failed her, I found beauty. What a privilege it was to be by her side, holding her hand as she passed from this life into the next.

Last night at church on this 4th Sunday of Advent, our priest talked about JOY. And he said something near the end of his sermon that resonated deeply. In fact I had to find him afterwards to get the quote exactly right, because I was unable to jot it down fast enough. David said, "Joy is not the removal of everything that causes you pain. Joy is knowing that there is one who has resolved to be with you in it and superintend for your good."

This has been a theme. From watching "Inside Out" with Waverly in the theater a few years ago and her laughing when one of the characters sacrifices himself for a friend. (I on the other hand was ugly crying at this particular moment.) To Waverly's funeral when my friend, David spoke about the intermingling of sorrow and hope, grief and joy.

I am still processing, still learning new truths. I think by experiencing one of life's horrors, I am fully able to experience the true essence of joy.

Monday, December 5, 2016

Looking Back

It's another day of "one year ago today". December 5th loomed on the calendar. It will always be the day our family and friends gathered to celebrate and honor Waverly's short, yet full life. 

I threw myself into planning and wanted to be sure each detail was well thought out. We had some extra time since we opted to delay her funeral because of Thanksgiving. Our Anglican church tradition provided us with a beautiful service which we had acquainted ourselves with in the weeks before her death. We selected scriptures which spoke to our spirit. Our dear friend, Adam, was going to play classical guitar and he learned a long list of her favorite songs. Hearing the theme song to "Elmo's World" and "Baby of Mine" on classical guitar was absolutely amazing! I made a slide show of my favorite Wavey pictures and selected flowers to fill the space with color and beauty. Matt spent weeks refining his eulogy, determined to deliver it which he did. That moment is the proudest I have ever been of him. I wrote Wavey a letter, with the help of my talented friend, Laura, who put my jumbled thoughts together in a poetic way. And we had years before asked one of my oldest friends, David, to give the homily. His words were honest, acknowledging our grief and sadness, whilst providing hope.

The moment pictured above was the most special. Nathan, one of our pastors, was giving the commendation. He was with us to give Waverly her first communion only weeks before she passed away and there with us 3 days before she died to perform the Holy Unction (similar to last rites). Our pastors laid their hands on her urn and he prayed, "Receive her into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light."

That moment in and of itself was powerful to me. Looking back after a year of wondering and worrying, fearing the unknown of heaven and hoping for truth, I find comfort in that small yet mighty prayer. My arms ache to hold her. I long for her to rest and be free of pain, to be released from the hold of Sanfilippo. And all I want for her is to be surrounded by love and light.

I haven't discussed my faith often on this blog. Mostly because I am still trying to figure it out. It has ebbed and flowed in my life. Wavey was the catalyst to get me back in a church community and she led us to a beautiful place of love and friendship. I think it was her way of looking out for Matt and I, to make sure we were taken care of and surrounded with support. 

A year ago today Matt and I greeted hundreds of people who came to Waverley's funeral. We were able to thank people who have supported us and hear ways in which Wavey had impacted their lives. We felt loved. And we were filled with pride for our little girl and all she accomplished in 12 years. It was a lovely day.

Thanks to Ellen for taking this picture along with many others. They are treasured.

Wednesday, November 30, 2016

One Year

Waverly's *anniversary* was November 18th. I cannot believe one full year has passed. Each moment of the first 365 days I was consumed with the thought of what I was doing one year before. Now when I look back a year ago each day I was without her. It is been a significant shift in my thinking. I no longer focus on what was and lately I been focusing on the loss. It may seem like a minute change in semantics, but for my grief process it has been monumental.

The lead up to the one year mark was horrendous. The actual day was a mess of emotion. I wasn't sure what to do with myself. I was anxious and unsure of how to fill my time, as if there was a correct way to honor the significance of that day. We took Oliver out of school and went to our favorite bakery. We took a walk in the woods, because Waverly loved being among the trees. And we went to one of her favorite restaurants for dinner.

Thursday, November 17, 2016

Her Last Full Day

Last night as I climbed into bed anticipating Friday, I was overcome with emotion. Today, November 17th, was Waverly's last full day on earth. She was present for the sun rise and set for the final time. It broke me.

She hadn't opened her eyes for days and we knew her final breath could come at any moment. However I was able to complete my motherly routine that day to the fullest. Administering medications, bathing her, dressing her, reading to her, singing to her. We stopped moving her around from room to room because her body was sore and with each repositioning we feared we were causing her pain. We spent the day in her room. Propped her up in her bed, with pillows to prevent additional bed sores. 

Bed sores were the worst part of the process. Inevitable, no matter how much you try. But I felt as if I had failed her. I couldn't stop her body from shutting down and revolting against my best efforts.

Waverly's geneticist stopped by on her way to the airport. She was grateful for one more visit with one of her favorite patients. And our amazing hospice nurse came by, signaling that the time was near but Wavey had proven to be a fighter and was going to follow her own path. It was our job to follow her lead. I wonder if she knew that day as she said goodbye and told us she would be back the following day that it was the end.

I remember Oliver was at Jill's House, so it was just Matt and I. We camped out in Waverly's room, unable to concentrate on reading or writing. We felt we had said all we could say to one another and to Waverly. We couldn't force any other profound moments. I remember turning on the iPad and watching an episode of Judge Judy. How stupid to have watched a ridiculous show in that moment, but we were exhausted in every possible way.

I remember as we laid her down in our bed that night, so I could sleep next to her and Matt slept on a mattress on the other side of her, I cried and said what I had been unable to say at any other point. It was time. Her body was failing her and it crushed me. We finally verbalized that she could go.

We never fully slept. I tended to stay up late into the night, unable to rest unable my eyes could no longer stay open. Matt was able to fall asleep, but would awake early waiting for the sun to rise again. We make a very good team. In the midst of tossing and turning, alarms would go off signaling us to administer medication.

And as soon as the darkness was chased away by the rising sun, she took her final breath. Choosing a moment when both Matt and I weren't staring at her. She had a momentary break and that is when she was called home. A morning when Oliver was being loved and cared for by the staff at Jill's House. He didn't have to listen to the screams from the depths of our souls that only a parent who loses a child can allow to escape.

In that instant our lives changed. Our identities changed. We were before and after.

Tuesday, November 15, 2016


Today is Waverly's 13th birthday. I have been anticipating it for such a long time and felt helpless the entire day. I just couldn't quite figure out what I was supposed to be doing. Wailing, celebrating, baking her favorite cake, volunteering my time. Nothing felt right and everything felt wrong.

My morning was routine since Oliver has standing OT and PT appointments. After I dropped him off at school, I popped into Target. I love giving gifts. I decided that in honor of Wavey Inspires, I would buy some of her favorite books and DVDs to donate to Jill's House. I put together a bag full of items and dropped them off this afternoon with Oliver. I hope the gifts bring them joy.

Matt and I went out to one of our favorite little restaurants. We sat in the corner by the fireplace and enjoyed some time together. We toasted Waverly 13th birthday and I shed a few tears. We ended the night early because we are both emotionally exhausted.

Last year on this day I remember praying that should would make it through. I stayed up until midnight to make sure she would see another day. We truly didn't know if she would. I remember our pastor coming over that afternoon to preform the Anointing of the Sick sacrament (similar to the last rites). I laid in bed next to her as Matt, my mom and step-dad stood around our priest. It was a beautiful moment.

Thanks to those of you who sent emails, texts, messages, for the flowers and the balloons and the cheesecake. For the photos of you wearing purple and for sharing the ways Wavey has touched your lives.

Today I tried to focus on celebration. Waverly loved birthdays and nothing make her smile more than hearing "Happy Birthday" being sung. I hope she was surrounded by those who love her and heard the happy birthday song sung twice (as she preferred). 

Happy Birthday, dear Waverly. Happy Birthday to you.

Wednesday, November 2, 2016

Blackbird Fly

This is my souvenir from our time in Portland. I have been wanting a tattoo that represents Waverly since she passed away. Blackbirds form a connection for us, yellow and purple are her colors. 

"Take these broken wings and learn to fly. You were only waiting for this moment to be free."


The calendar has turned and November has arrived. I have been anticipating this month for a year. Since Waverly passed away on November 18th, I remember wondering how I will survive without her.  Those first hours and days I was in constant counting mode - 4 hours since she died, 3 days, one week, a month. Wednesdays were painful and each 18th of the month crushed me.  And now I find myself days away from the one year mark. 

I have retreated the past few days. I read through my blog posts of her final weeks. Each morning I systematically check the On This Day section of facebook to see what I was feeling and what we were doing. It all happened so fast. My instincts were heightened for months that something was wrong. However reading my words I see that I couched my fears, hid them deep within the sentences.

 I miss her.

Friday, October 21, 2016

Go West, Young Man

We took a trip to the Pacific Northwest. We have been dreaming of taking this vacation for years and were finally able to make it happen. It was beautiful. The natural beauty found in that part of the country makes it easy to understand their population boom. Plus the food! We had some of the best donuts, coffee and micro brews we have ever had. Some of our highlights, aside from visiting family, were the Chihuly Museum in Seattle, seeing Mount Rainier, Multnomah Falls and the amazing Cannon Beach in Oregon. Memories were made. Bucket list item checked off.

Tuesday, October 18, 2016

11 Months

It's been 11 months today.

It is unimaginable to me that it has been so long since I heard her breathing. I have been feeling quite numb the past few weeks. We took a trip to the Pacific Northwest and it provided a beautiful escape. It was a chance to see loved ones and take in the beauty of that part of the country. Mountains draw me in and a day spent by the sea was cleansing.

As we arrived back in DC Saturday night I could feel the cloak of grief begin to pull over me. The weight was especially startling. It's always there, but being home make it so much more pronounced. The pressure of my grief grounds me. I find comfort in it.

We are entering into a difficult phase. We are reliving the days of one year ago and we are able to process them in a whole new light of distance and understanding. Birthdays are approaching and the one year anniversary is standing out in the distance waiting to envelop me.

I miss her. I miss everything about her. Her smell is fading from her toys and clothes. Her room has changed and reflects who used to be. I no longer look in my rearview mirror expecting to see her warm smile. Yet I cannot believe she is gone, never to return. The finality of it all doesn't seem real.

She has sent me a few signs though. Blackbirds have started to appear, especially when I am talking to her and thinking of her. They are her little message to her mommy.

Thursday, September 22, 2016

Hoping For Signs

I have been struggling lately. I no longer feel Waverly's spirit around me. I like to imagine that she is off exploring or visiting other loved ones in her life. Maybe she, the ever devoted big sister, is staying near to Oliver at the moment as he experiences some difficult changes. But I miss her, both physically and spiritually.

I hope to feel her again. To hear her whisper in the songs of birds or the ringing of the wind chimes. To sense her presence holding my hand when I am too exhausted to take another step. I hope she will begin to visit me in my dreams, to send me little reminders that she is ever present.

Grief offers a unique perspective on the afterlife and what lies ahead. It can also provide immense comfort in the midst of unfathomable pain.

Monday, September 12, 2016

Making Changes

I recently read a beautiful essay about grief and how is changes oneself.  (You can read it here.) I keep rereading it and reflecting on it throughout my day. It has preoccupied my thoughts for a few weeks. Time won't heal all wounds and things won't return to normal, as the cliches want me to believe. Grief changed me.

I want to go back in time to experience Waverly again. I want to brush her hair into thick pigtails. I long to say "I love you" three times as I kiss her on both cheeks and forehead. I want to hold her hand and allow her thumb to pick at my fingers. I miss the weight of her wheelchair in my hands and the feel of her body leaning into mine for support.

Yet I want to take the new me back in time to her. The new me appreciates the subtleness of life. The rising of her chest with each breath and the little snores that would sometimes occur. The fragility of a moment. I want to go back and soak her in. I want to go back and put my phone down, climb into her bed for an extra cuddle, awake early to be there when she opened her eyes.

I have the unique and terrifying prospect of having to grieve the loss of a second child. Oliver will one day succumb to the horrid disease that is Sanfilippo Syndrome. How can I take what I have learned thus far into mothering him? What changes shall I make moving forward?

These are the questions I have been asking myself. 

Wednesday, September 7, 2016

It's Blossoming!

Waverly's beautiful tree starting blooming purple blossoms just as school started. What a lovely way to begin the beginning of a new year.

Monday, September 5, 2016

On This Day

One of the many reasons I blog is not because I think others are interested in what I have to say, but rather it serves as a record of all we have done and felt. I have written quite openly and honestly over the years. It is a reminder of my own personal growth. I also thoroughly enjoy going back and remembering. Revisiting the past has been painful throughout this journey, but never more so than now.

We have photos all over the house of Waverly & Oliver. Wavey's smile greets me as the background on my phone. When I look back at photos that aren't in my daily routine, the pain can be searing. Wavey's face is farther back on my Instagram and I have to scroll down so far on iPhoto to find her.

Facebook provides the incredible On This Day feature. With one click I can see everything I have posted on this day in my social media history. Photos, status updates, blog posts, all remind me of where we have been. Matt and I have actually had conversations about what the next few months will bring up for us emotionally. The smell of autumn, crispness in the air, certain clothes, back to school - all of these things bring memories of last year to the forefront of our thoughts.

A few days ago after clicking On This Day, the first item that popped up was this blog post. We had been seeing the changes in Waverly for months, but I remember clearly feeling like we were beginning to lose her then. Every bell and alarm in my mom gut was going off. I was trying not to panic or worry, but I could see it.

I am dreading these next months. The one year mark is standing before me like a huge monster ready to crush me. And I know each day I will be reminded of how I was feeling and what I was doing. I will be able to read between the lines and sense the anguish knowing I could not stop death. I could not stop Sanfilippo from stealing my beautiful daughter away from me. And I can not stop it from taking Oliver one day as well.

Thursday, September 1, 2016

Her Spirit

Today was Oliver's Open House at school. He is starting 4th grade next week and this will be his 7th year at VES (he attended preschool for 2 years). He has the same wonderful teacher and the same wonderful aides. The classroom is the same and even though he wasn't thrilled to be back - he is my homebody - he knew right where to go. He also has one of my favorite teachers as his grade level teacher. She is passionate about inclusion. And some of my favorite peers are with him. It should be a good year for him. He is surrounded by people who love him.

After visiting his ID and 4th grade classrooms, we headed to the side of the school to see Waverly's tree. We are there almost daily to water it through the hot summer. Today was different. Wavey's absence was more profound. She was supposed to be there with us. But her spirit can be felt both at her tree and within the school. She left her mark within those walls. I am proud of the legacy she left behind, paving the way for her little brother and other children in the Intellectual Disability program.

Monday, August 29, 2016

Waverly's Room

We have made some changes to Waverly's room. We were so fortunate to have a Sleep Safe bed for her. It made a world of difference in caring for her and allowing her to sleep safely each night. Plus it gave Matt and I the gift of a full night's sleep. It took some time, but we finally dismantled the bed (with help from my step-dad). A lovely family who also has two children with Sanfilippo Syndrome is came down and picked it up for their son. I am so thankful another family can benefit from this bed.

Wavey's room felt so empty and nondescript without her bed. I still wanted it to be *her* space. So I moved our desk in there. It's the perfect space to sit for paperwork or working from home. I bought a bright pink rug and moved her Yogibos there for comfy seating. I have found myself back there often. It's a new space, but it is still her space.

Sunday, August 21, 2016


Nine months into the grieving process and I have learned a few lessons along the way. An important one being that transitions are tough. Any change going on around me - seasonal change, end of school, preparing for a holiday - is a reminder that I have to navigate it without Waverly. 

I seem to be having an incredibly difficult time with Back to School. Photos started popping up on Facebook from friends in areas where school has already started. The stores are highlighting all of the back to school items. (Which to be honest has always been a difficult season for me. Instead of shopping for school supplies, our lists consisted of Lysol wipes and hand soap.) I had to order some pants for Oliver and when I went into Hanna Andersson to pick them up, I succumbed to tears over all of the adorable fall girl items. I loved dressing Waverly - she had style. Only one letter from school arrived this year. And as all of Wavey's classmates are anxiously anticipating the beginning of middle school, I am left mourning.

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.