Meet the McNeil Family

Meet the McNeil Family

Monday, December 11, 2017

The Sights of Christmas

Last night we attended a family Christmas Party at Jill's House. We haven't been for a few years, but this year I can feel the tinge of the Christmas spirit deep within me. Our family was warmly greeted, Oliver by name. The fireplace was roaring and the lobby was decked out in beautiful decor. All of the staff and fellows wore festive hats, a perfect way to distinguish them from families. They had created craft corners and cookie decorating stations. A photographer offered her services to take family portraits in the library. Tables were filled with food and drink. And of course Santa made an appearance and gifted each child with a present.

As I weaved through the crowd holding Oliver's hand as he paced the premises, we bumped into others. No need to explain or apologize, just a simple knowing smile. We were understood. We had to stop quickly as kids ran through the crowd. We naturally made way for wheelchairs. The glow of dozens of iPads lit the way, as children used them to communicate in various ways. Quiet areas were available for those in sensory overload. 

Matt was with Oliver and I found myself standing alone on the perimeter. As I glanced around the room I was overcome with joy. This safe space where families could exhale as they passed through the doors. No blaring music or flashing lights, no expensive knickknacks to avoid or stairs to navigate. No barriers. No worry.

What a blessing to enter into a party with all of your children and enjoy the celebration. Thanks to Jill's House for once again providing us with rest. And thanks to so many of my friends who have donated to a place that means so much to our family.

Tuesday, December 5, 2017

Two Years Later

I watched Waverly's funeral yesterday afternoon. I am not sure why, but I wanted to be in that space again. The thread that seemed to weave throughout the service was the idea of Joy and Sorrow. We wanted to create a space that was welcoming of both - celebrating the joy that was Waverly and the sorrow that she is no longer with us.

The night before her funeral, we hosted a get together at our home for all of our friends who traveled in from out of town. We had snacks and drinks, a fire going outside to stem the crowd. Our house was filled with dear ones who wanted to honor Waverly's life. We directed people to take time in Waverly's room. I had a photo album for those closest to us of Waverly's final weeks on hospice. We even tip toed into Oliver's room so they could see our sleeping boy, oblivious to the fact that 75 people were in his home. We wanted that night to be a celebration of friendship. A thank you for those who traveled to be here with us. It was one of the most special nights for me. I looked in each room and saw friends from childhood, high school, camps, college, work, and moments in between. I introduced friends who remind me of one another, who have similar interests, who write on the same topic. I felt loved that night. It was the shot of confidence and strength I needed to get through the next day.

Watching Wavey's funeral brought some tears to my eyes, but I found myself smiling. Beaming. So many gathered for her. One of my favorite photos was looking down at all of us. The room was filled with flowers and I remember the smell of lilies permeating the space. I was able to hear our friend Adam lovingly play Waverly's favorite songs on his guitar. I listened as our rector welcomed those who assembled. I loved that in that moment we were new to our church, only six months in, yet they surrounded us with love and support. And I celebrated the fact that we have been there for almost three years and we are known. Oliver is known. I watched as Matt, Oliver and I walked in carrying Wavey's urn. I listened as our friends read scripture. I marveled at Matt's ability to deliver the most moving eulogy, something he knew he had to do for his little girl. I was grateful to my friend for reading a letter I penned for my daughter and the image of aspen trees. I thanked God for bring our friend, David, into our lives. His homily was outstanding and people still reference his way of honoring the sacred space of grief. I sang along to the music, my lips moved as the Apostles Creed was said. And I felt confident in the commendation.

"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. Amen."

Thursday, November 30, 2017

Steps & Space

Matt and I spent time last weekend cleaning and organizing. Matt focused on the outside, whilst I worked on the inside. My area of concentration was Waverly's room. It has been stuck in a netherworld of no longer her bedroom, but no other purpose. I decided to make it into an office/sitting room. There is a comfy chair with her quilts nearby to cuddle up with a book. Our desk is in there for days when Matt is able to work from home. I consolidated her belongings to one small bookcase. Other items were moved into the closet for storage. And the final box of her clothing was mailed to my dear friend for her two daughters. It is a bright, cheerful space that is ready for houseguests and visitors.

Waverly's urn has been in her bedroom since the day we brought it home from the funeral home. I had a candle nearby and her favorite stuffed lamb. Each morning and evening I would go in and kiss it, loving the cool feel of the pottery. I remember cradling the urn in the days and weeks after Wavey's death. I loved the weight of it and it's delicate floral design. When we went away a month after she died, I took it with me. I was unable to leave her behind. And when the time came when I could no longer travel with it, my mom was given strict instructions to greet it each day as she cared for Watson. I found myself forgetting to kiss it goodnight and then feeling guilty for forgetting. Eventually it became a beautiful vessel, but the realization that her essence was not contained in the clay became clear. I decided to move the urn into our bedroom. It feels right. I put a beautiful blue vase with a blackbird next to it filled with dried heather from her funeral.

I miss Waverly. Being in her room and removing her things always bring up a lot of emotion. It is confirmation that death is final. She isn't going to fill that space again. 

There is one pink hoodie hanging in her closet. It wasn't added to the quilt we had made. I couldn't bring myself to send it in the final box of clothing for our friends. And unlike a stack of t-shirts I still have saved for another quilt, I couldn't bring myself to add this sweatshirt to the plastic storage bin. I hung it up in the closet on the little hook, as if it is waiting for its owner to return.

In my time. No right or wrong.

Monday, November 27, 2017

Birthdays and Anniversarys

November is such an emotional month. On the 15th we celebrated Waverly's birthday. She would have been 14 years old. I cannot imagine her as a teenager. I spend very little time thinking about the what could have been and instead revel in what was. Wavey loved birthdays. In latter years we would always sing "happy birthday" twice, because it didn't click until we were almost through the first time. She then would burst into giggles for round two. This year felt different. I was able to reflect on birthdays past, not simply focusing on her final birthday in her hospice bed.

We opted to leave town this year to commemorate the anniversary of her passing. We went to Hilton Head to a resort we visited as a family in 2011. We invited some best friends to join us. It was the absolute best decision. We ate fresh seafood by the water, visited Savannah, walked the beach, had a dance party by the pool, played cards over wine and lit a candle in Wavey's memory. A blackbird flew overhead and monarch butterflies were abundant on the 18th, God's reminder that His promise is true.

Friday, November 24, 2017


A little fourth grade girl wrote this poem in Waverly's honor. Her teacher shared it with me on Waverly's birthday. It was the perfect reminder that she is not forgotten.


THANK YOU for helping us bless Jill's House with lots of toys and supplies in honor of Waverly's birthday. Over 300 packages were delivered this month. It was the perfect way to celebrate her impact on our world.


Saturday, November 4, 2017


November has arrived. I love this time of year. Halloween to birthdays to Thanksgiving to Christmas to Oliver's birthday to New Year's. Colors abound from the warm hues of autumn to the silvery shimmer of Christmas.

It also brings new feelings. The cool morning air, sounds of people raking leaves, smells of apples and pumpkin all remind me of Waverly's time on hospice. I vacillate between fondness and fear, smiles and stress. I return to the memories of holding Waverly on our couch. I twirled her hair and whispered love and life lessons. We always had candles lit, fresh flowers surrounded her as she was wrapped in special blankets holding favorite stuffies. I also return to moments of total fear. I question our decisions and worry we failed her.

I *know* in my heart and mind that we did the best we could to provide her with a peaceful and pain free completion of her time on this earth. However I still struggle in moments of weakness.

I am trying to embrace both the joy and sorrow of this month. One of Waverly's favorite places was Jill's House. She attended day camps, had overnight sleepover adventures, attended Christmas parties, and had her own birthday party there. 

I have had the honor of volunteering there the last few months, working on organizing and inventorying different rooms. As I did so, I had an idea. All of the puzzles with missing pieces and toys that were loved to the point of breaking needed to be replaced. What if in honor of Waverly's birthday on the 15th, we flooded Jill's House with gifts. So I asked them to create an Amazon Wish List. It is filled with toys, puzzles, and craft supplies, along with office and cleaning supplies. My hope is that this month we can all join together in blessing this organization that has been an incredible blessing to our family.

Here is the link for the Jill's House Amazon Wish List. Check it out. There are items available for all price points. Just add them to your cart and Jill's House's address will appear as your shipping option. You will have to reenter your credit card number, since you are shipping to a new location. And that's it. 

Thank you for joining us in this celebration of Waverly.

Thursday, October 26, 2017


Oliver loves pancakes. Going to diners for breakfast has been routine for our family. And Matt gifted me with an electric griddle a few years ago, so we could up our flap jack game. Purchasing real maple syrup is a necessity in our home - no Aunt Jemima or Log Cabin here.

I spent part of this afternoon unpacking Oliver's Real Food Blends from our supply company. Each month I receive a tower of boxes full of pureed food. Instead of having the boxes sit in our dining room until they were needed, I decided to move some things around in our kitchen. I cleared two shelves under our coffee supplies and squeezed in as many pouches as possible. Neat and tidy and organized, with each different meal in a separate plastic bin.

I was only left with one item to relocate. The electric griddle. As I opened cabinets to find space for the behemoth, I realized that I will most likely not be using it very much anymore. Blueberry pancake breakfasts no longer appeal to me. Oliver can't eat them anymore. 

I was overcome with the truth that I will never make him pancakes again. I won't see his fingers dyed purple from the blueberries, sticky from the syrup. This simple realization has knocked the air out of me. And I am heartbroken.

Monday, October 16, 2017


Matt and I have finally uttered some scary words to one another. I have been mulling them over for weeks. As they swirl around my head, my chest begins to heave with tears and my ability to breathe deeply becomes a struggle. When you are partnering through trauma, you try to protect your spouse. We both have friends in our lives who are willing to absorb some of the hurt. We tend to see saw emotionally. When I am up, he is down and visa versa.

We are both down. We are both sad. And it was time to enter into that sadness and speak frankly with one another. We are worried about Oliver. We are terrified about what the next year will hold. Alarm bells are going off in each of our minds and we needed to express it honestly with one another. It is not an easy conversation to have, but we have done it before.

I am not being an alarmist or waving the surrender flag. However I am also not going to ignore the fact that our little boy is dying.

This requires a shift. A shift in the way we manage his care, choosing pain management and quality of life over anything else. A shift in the way we interact with the world around us. I am finding my voice of honesty once again; choosing bluntness and vulnerability more quickly. People can choose to enter into our lives or not, but when asked how I am doing they can expect truth. I am trying to accept help once again, instead of putting up my armor of capability. To allow people the opportunity to carry a bag or push Oliver's chair, because it is their way of connecting and supporting.

I suppose this post is my attempt at saying we are not doing well. We are hurting. We are worried.

Wednesday, October 4, 2017


This is going to be a free flow of thought kind of post.

I attended the funeral of a beautiful little girl on Saturday. Livia Grace was 10 years old when she passed away from Sanfilippo. 

I spoke with Liv's mom days after they received the diagnosis. I met her at an MPS conference in Orlando a few months later. They were new to the world of Sanfilippo, cradling Liv's baby sister and watching this bouncy toddler with little manifestations of the disease. While the conferences can be informative and provide connections for parents, they can also be incredibly overwhelming. You are faced with the full trajectory of the disease; babies with no signs of Sanfilippo to teenagers in wheelchairs with feeding tubes being placed on the floor for a diaper change.

I have had the honor of speaking with Kelly, Liv's mom, throughout the years. We would exchange texts to check in or seek advice. She and our friend Stefanie flew in from Chicago to attend Waverly's funeral. This was a beautiful show of friendship and support. And for two moms who knew what the future held, another scary moment of entering into glimpses of the future. The last two summers we have been able to meet up in Chicago and enjoy a day together. I had a particular connection with Liv. She reminded me of Waverly. I would at some point of the visit situate myself next to her and hold her soft hand. It felt just like Waverly's. As Liv's body started to slow down I spoke with Kelly more often, sharing details from Wavey's story as she asked. I have learned from other moms that usually the best way to walk someone through this stage is slowly, only revealing moments as they are requested. It can be incredibly overwhelming and my choices are not going to necessarily be theirs.

I boarded a plane on Friday morning and flew to O'Hare. I drove to Rockford and had the privilege of spending an hour with Kelly talking in Liv's room. I listened to her story and entered the sacred space of her grief. It was a gift to have that time with her.

I then drove to our friend Stefanie's home. She has three children, two of whom have Sanfilippo. She is a fellow warrior mom. She walked alongside of Kelly in the bravest of ways. Stefanie is a woman of faith, who lives that faith daily. It was such a joy to enter into her home for a few days. To talk from the heart, share honestly and love her family. What an honor to know these ladies.

I cried for Kelly. I cried that my dear friend has entered into this side of grief, no longer anticipating. It is her reality. I cried that this world only had Liv for ten short years, yet in that short time she impacted many. I cried for Liv's sister at the loss of her best friend. And her father who would have given his own life to save hers. I then cried for Stefanie. I ache that she will have to do this twice. I cried as I held her children, J & B, who suffer with joy. I cried for her daughter E, who is going to lose both of her siblings. I cried for her husband who happens to be one of the best dads I have ever encountered.

As I boarded my plane home on Sunday I cried for Waverly. I miss her deeply. And I cried for Oliver. My sweet little boy who has gone through numerous changes in recent months.

I don't think I have ever wanted to squeeze Oliver more tightly then I did Sunday night. I relished in changing his diaper and holding his hand as he navigated the house. I spent time snuggling him in his bed and watched gratefully as his little eyes closed in sleep.

I have been living in a fog since returning home. I was taken back to my last moments with Waverly. I try not to allow my mind to venture back there, because it is utterly painful. I have also been faced with all of the changes going on in Oliver's life. He seems to have taken a large dip recently. His walking is much more disorganized and requires more support. He is flopping forward in chairs, needing support to sit up straight. He continues to lean to his side. We had the abrupt change in feeding, moving from oral feeds to full g-tube feeds. It all feels like too much too soon.

It took the events of this weekend for me to look at Oliver through a different lens.

As the younger child, he was always the healthy one. He was capable and strong. Comparing the two, Oliver always was in a better place for the simple fact of being three years younger. Then very simply he was alive, easily holding onto the crown of healthier. No need to worry.

Now I see him as an almost 11 year old boy with Sanfilippo. His body is slowing down, his joints are stiffening and his muscles are contracting. I cannot save him, but I can surround him with love and joy.

That is my job.

Sunday, September 17, 2017

My Boy, Oliver

Our little guy has had a difficult few weeks full of many changes. He started fifth grade a few weeks ago. He attends the same school with the same teacher, but his classroom is now on the first floor. I like this so much better. He is closer to all of his specials and we don't have to worry about the elevator anymore. Plus I think the new space is good for him. He likes his routine, but he needed a change.

We also started sending him to school with his wheelchair. He was crying by the end of the day and I think a lot of it had to do with being fatigued. It warms my heart to see him happily sitting in his chair chewing his tube each afternoon. His teachers are great about not keeping him in his chair, but using it when he needs it. This means Matt and I had to switch vans...again. Since Oliver's chair is being used daily, the ramp of our wheelchair van is much more convenient and easier on my back.

This leads to Ollie's next big change which he now sits in the front seat. Our wheelchair van has the most uncomfortable back seats and they simply do not offer him the positioning support he needs. We aren't ready to have him ride in his wheelchair, so we gave the front seat a go. He is well supported and seems to enjoy the new view. Plus I love being able to hold his hand more easily.

His final change involves food. The thing that brings him his greatest joy. After months of dietary changes and seeing the signs, our SLP who specializes in feeding issues, gave us the news that it was time to switch him to enteral nutrition. Our goal is to keep his lungs healthy and currently he is silently aspirating as he eats. His swallow has deteriorated to the point of it being unsafe to feed him orally. So I frantically got the supplies together, filled out all of the necessary forms for the school and we started a new chapter.

Oliver is tolerating the change fairly well. We are able to offer him pleasure feeds still, so after I hook up the g-tube pump, I can give him small bites of yogurt or smoothie or fruit. I went to the baby aisle and picked up some meltable treats, so he can pick up a few puffs to eat. His body is handling the change well. He still wanders to the table confused as to why things have changed. We have yet to take him to a restaurant or eat in front of him, for fear he it will upset him.

We have been through this before. We are comfortable with the process. I can change a g-tube without looking now. Prepping the pump is second nature. I have been taken back to my time caring for Waverly. The beep of the feeding pump is associated with her. It is more painful this go around. I know what lies ahead. I know that over time his rate will decrease. We will lessen the volume of food he requires because he isn't as active as he once was. In time those pleasure feeds will be too risky and he won't want to share a bite of ice cream.

It's too soon. I'm not ready.

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


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.

Monday, July 31, 2017

Road Trip Summer 2017

We took another road trip to the Mid-West a few weeks ago. We had a fabulous time seeing friends and family along the way, although the 2300 miles in the car did get a tad long by the last leg of the journey. We began in Chicago exploring the city and taking in a Cubs game. Bucket list item for Matt & Oliver checked off. We were also able to attend a Liv Life event in northern Illinois. (Liv Life is an awesome parent run Sanfilippo organization.)

We then ventured on to Michigan to spend a few days with my best friends and their families. Having all of us stay together in a home with our husbands and children is a dream come true. It is one of the highlights of my year and I am so glad we were able to make it happen once again this year. Oliver is well loved there.

On to Indianpolis to see family. A stop in our old college town for a bite to eat and a quick visit to campus. And some time in Ohio with Matt's family. We were exhausted, but thrilled out little man was up for another long car trip.

It's the summer of memories!

Tuesday, June 27, 2017

Go Nats!

Some friends of ours arranged for our family to be on the field for batting practice last Saturday. We have been fans of the Nats for over 8 years. And this year we splurged on a Sunday package. Oliver has always enjoyed baseball games, especially when he can see the field. Not to mention the tasty treats of cotton candy and popcorn. This was unlike any game we have ever been too. It was an incredible experience.

Oliver got some game balls and autographs. Plus we had amazing seats behind home plate with all inclusive treats. Thanks to our friends for helping us make a day full of memories. Oliver is still holding onto his game ball.

Friday, June 23, 2017

Meet Our Second Winner

Today was the last day of school. The sixth grade class is recognized for all of their hard work in elementary school. Awards are given for academic, physical fitness, and musical success. We were also able to give the Waverly McNeil Memorial Award for Kindness & Inclusion. This is the second year we have done so. In my very biased opinion, it is the most important award to bestow on one student.

Matt and I created this award to recognize the student who most exemplifies kindness and inclusion within the school. In her years at VES, Waverly changed the school. By including her in the main stream classes, celebrating MPS Awareness Day and Special Education Week, and brainstorming with the teachers for opportunities to volunteer, she helped create an environment of respect and value for all students.

The winner this year is Alyssa Morse. Her teachers were quick to recommend her. She wrote an essay for a creative writing assignment on the benefits of kindness. She then went to each classroom during morning meetings and presented her essay, spreading the word on the benefits of kindness and inclusion. She is remarkable young lady.

As I watched another group of children step up to receive their certificates for completing sixth grade, I was overcome with the knowledge that these kids are going to take those lessons into their middle schools, high schools and beyond. It is my hope that they reach out to the lonely, befriend the new kid, protect the bullied and show kindness to all. I hope that kids in wheelchairs, who use chewy tubes, who are non-verbal are SEEN.

Wednesday, June 14, 2017

Empty Hangers

After Waverly passed away, we were left with the task of what to do with her room and all of her belongings. Each person is different in the way they cope. Some people keep the room as is for years and other dismantle everything within days. No right or wrong, just the individual way we all choose to survive loss.

Matt and I found ourselves somewhere in the middle. Her room went untouched for a few weeks. We found solace collapsing on her bed and holding her pillow tight against our chest. Eventually we were able to let go of some things. Her drawers were unpacked and we gave many of her clothes to dear friends whose kids continue to wear them and give them life. I adore seeing photos of Waverly's dresses jumping, playing and swinging. It soothes my broken heart. Her chest was moved into Oliver's room and now contains his wardrobe. Her Sleep Safe bed was given to friends for their son. Stuffed animals were passed on to friends who wanted to remember her with a tangible object.

We moved our desk into her room, along with my crafting items. Matt sometimes works from home in there and I complete paperwork at the desk. Her room will continue to evolve, but in our memories it will always remain her room.

One thing that couldn't be moved were favorite dresses; especially those which she wore again and again in her final weeks. I have always loved Hanna Andersson and their play dresses were a constant favorite. They always had corresponding leggings or bike shorts, perfect to cover a diaper. They were soft and she always looked put together which was important to me. Even though she had lovely cotton nightgowns, it was five play dresses that she wore constantly whilst on hospice. They were too precious to be donated or given away. So in her closet they hung.

Until today.

I reached out to friends via Facebook to collect recommendations for a quilter. I wanted to have a blanket made of all of the special items I have saved over the years. Dresses, costumes, scarves, pajamas all saved lovingly in bins. I found someone who I think it going to create something beautiful for us. We found a design and it is time to ship off the fabrics.

Unpacking the plastic bins and placing the items into a cardboard box was painless, but those hanging dresses. I could not do it. Each time I grabbed a dress, I would weep. Remembering her frail body filling the space. Wanting to smell her on them, but finding only the scent of fabric softener. Wishing things were different. So the box sat open and waiting for more treasures.

I was finally able to delicately take them off of the hanger this morning. I carefully folded them, placing them in plastic for they are the most precious. This process wasn't without tears.

I have one more dress to include before I can seal the box and send it across the country. The dress she died in. 

Vulnerable and honest.

I want to be sure this item is at the heart of the quilt.

Tuesday, June 6, 2017

Do More 24 - Jill's House

On Thursday June 8th, Jill's House is participating in the Do More 24 campaign sponsored by the United Way of the National Capital Area. It is a 24 hour fundraising event for local non-profits. About 80% of the Jill's House budget comes from fundraising! The grand prize winner gets an additional $10,000 and there are some corporate donors who are offering matching grants to increase our chances of winning the big prize.

As many of you know, Jill's House has been vital for our family. Waverly first started attending soon after it opened. I vividly remember her first weekend stay. We dropped her off on a Friday night and I was so impressed. The nurses and staff knew all about her, down to her little lamb being her comfort toy. We received an email that night containing a picture of her with her child support attendant. The next day we took Oliver to a local amusement park. It was so nice to focus on him, knowing Wavey was enjoying a weekend away at a place designed specifically for children like her. They had Sleep Safe beds, an adaptive playground, bouncy castle, a zero entry indoor pool, gym, music room, huge movie screen, sensory room, and so much more. She was making friends with the other children and the staff. We were beyond anxious to pick her up and I believe we arrived an hour early, waiting in the parking lot for our check out time. And thus began our relationship with Jill's House.

Oliver had to wait almost 3 years until he was old enough to attend. Finally he turned 6 and he burst through the backdoors to the playground. He rode around on a two-person tricycle, watched Mickey Mouse on the big screen, played in the pool.

Jill's House staff have become friends. When Waverly was placed on hospice, it was a Jill's House staff member who delivered coffee to Matt and I. They delivered a huge poster filled with photos and notes celebrating her 12th birthday. (She had birthday parties with her friends there in the past.) Purple balloons arrived at our door.

And they wanted to help in the best way possible, by loving Oliver. They understood that Matt and I were focused on Waverly. So they stepped in and offered Oliver additional nights. He was given so much attention and love. It was during that time he bonded with Isac, one of the best staff members at Jill's House. Ollie needs consistency and gentleness. He needed a hand to hold and a kind voice to guide him. Isac provided all of that and more. Still to this day Oliver is calmed by Isac's presence.

When Waverly passed away, it was a staff member of Jill's House who meet us at the church. She walked us through funeral plans and handled details that I couldn't bear to carry. They helped serve the food and drinks, and after the funeral they cleaned up so Matt and I could focus on our family and friends.

It is for all of these reasons and more that I am asking you to help us help Jill's House. Please consider donating in honor of Waverly & Oliver. It would mean so much to Matt and I knowing that more families will receive the blessings that Jill's House provides.

Click here to donate.

Thank you.

You can learn more about Jill's House here.

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


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


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.