Meet the McNeil Family

Meet the McNeil Family

Monday, November 30, 2015

Some Thoughts

I'm still in shock that Waverly died. I feel numb and unfeeling at times. Then I get upset with myself for not wailing and weeping more. There is an idea of what grief looks like and I am learning and being reminded by those who have been through it that it is a messy process. No rhyme or reason. No right or wrong. Just allow yourself grace.

With Wavey's funeral quickly approaching, the emotions are starting to swirl around deep within and I await what will transpire. Reality is going to hit. And once again it will be a rollercoaster of emotions. I am going to be excited to see old friends. I will feel such love to see people travel from all over the world to attend because they love her, even those who have never met her. I will want to celebrate her beautiful, albeit short life. I want to be sure the service honors her amazing spirit. And I will be mourning. An event on the calendar to remind me that she really is gone.

The past week I have been overwhelmed with a sense of pride for Waverly. As the cards, flowers, texts and calls come flooding in, they are all reminders that she has touched so many people. Wavey truly does inspire. Thank you all for the ways you have expressed your condolences.

Monday, November 23, 2015

Waverly is Home


I spent a lot of time searching for the perfect urn for Waverly. I wanted something handmade that would reflect her beauty. After many hours of internet searches, I came upon a potter in New England who makes some beautiful pieces. She had a few designs on her website and I wrote her inquiring about my favorites. Sadly she didn't have any currently available and given their intricacy, they take awhile to make. The next morning I received an email from her. She went into her studio and remembered this one unique urn she made in a new design. She was willing to send me a picture and sell it to me if I liked it. In as much as one can love an urn, I fell in love with it. It is white and pure, with delicate flowers. My friend, Kamarah, took a photo of it for me before Waverly passed away so I had something to share. (The idea of sharing a picture knowing she was inside seemed undignified.)

Waverly is now home. Matt and I were able to pick her up this afternoon from the funeral home. I bought yellow tulips for her and they are in her room next to her urn. I want to keep her in there for now. I can say good morning and good night to her. When I venture into her room, I can talk with her quite easily. I find so much comfort knowing she is back where she belongs.

Saturday, November 21, 2015

In Waverly's Memory

To honor Waverly's life, the McNeils ask that you give generously to Jill's House. In many ways Jill's House became Waverly's house too, a home away from home where she could enjoy life's simple pleasures, have fun, and find rest in a context that cared for her. Jill's House, a 501(c)(3), offers respite to children with intellectual disabilities and their families in the Greater Washington, D.C. area, without regard to race, religion, or ethnicity. Please visit jillshouse.org/donate, and include #WaveyInspires in the comments section, or send a check to Jill's House, 9011 Leesburg Pike, Vienna, VA 22182.

Thursday, November 19, 2015

First Day Without Her

Today was my first day without Waverly.

Even though we have been anticipating for the 7.5 years since the kids were diagnosed with Sanfilippo Syndrome and especially since Wavey started hospice last month, nothing could have prepared us for the moment. I still cannot believe it is real. That I won't wake up and realize this is simply another horrible nightmare. And if I run into Wavey's room she'll be cuddled up with her lambie snoring rhythmically.

I now understand when people say they ache for a loved one.

I understand that grief is painful. That is needs to be given respect. That anticipating grief in no way feels like actual grief.

Grief started as a scream from deep within my soul. I was unable to control the wailing. Even in my sleep I scream.

I miss Waverly.

I feel so blessed to have been her mommy. To have been there when she took her first breath and her last. To witness the incredibly impact she had on all who met her.

I held Oliver tonight before bed. He was calm and content in my arms, nuzzled against my chest. And I cannot be fully present. I am aching for Wavey and I am terrified that I am going to have to go through all of this again when it is his time.

Wednesday, November 18, 2015

Waverly's Funeral Service

Waverly's funeral service will be on Saturday December 5th at 10:00 in the morning at McLean Bible Church Tyson's campus in the Smith Center. The facility is handicap friendly. Children are more than welcome.

Flowers may be sent to the church. Thank you.

Waverly Mae

At 7:30 this morning our little girl drew her last breath. 


Fermata

The last resolved orchestral chords,
final resting tones held in a grief-bathed fermata;
rapt listeners poised in knowing silence,
inwardly begging for the music to go on.

Laura Fabrycky


We will give an update on service arrangements once they have been finalized.

Monday, November 16, 2015

Waverly Turns Twelve

Little girl continues to surprise us by her strength. Yesterday we were able to celebrate her 12th birthday with kisses on her warm, soft cheeks. The nurses were not confident she would make it and I was certainly doubtful, but she is resilient and loves to prove her mommy wrong. I counted down to her birth minute and we celebrated another year together.

Thanks to those of you who sent balloons, flowers, teddy bears, cards, cupcakes, blankets, fuzzy socks, pajamas, dinner, coffee, bagels, and decorated our driveway. 

Day by day.
Hour by hour.
Moment by moment.


Wednesday, November 11, 2015

Anticipating Grief

This has been an agonizing week. I am by nature an impatient person who likes to plan and have control of the situation. I am also a woman who desperately wants to cling to every breath inside of Waverly. We have been holding vigil by her side, sleeping next to her, one of us always near her. We are anticipating the absolute worst moment of our lives, knowing it is coming to take her away from us.

Wavey has proven to be a fighter. Sanfilippo has weakened her body, but it has strengthened her spirit. She has fought for every step, every milestone, every developmental age. And she clung to them as the disease ravaged her brain.

Each breath brings a sigh of relief and ramps up the anticipation that the next one could be her last. My chest hurts, my head is sore, my eyes are swollen from tears. I am exhausted in every sense of the word.

Doubt creeps in and I question my choices. Anger creeps in and I want to explode. Denial creeps in and I am convinced she will wake up healthy. Sorrow is every present and knocks me over in waves of sadness. And through each emotional swing, love is at the center. I love my little girl fiercely. I would give anything to trade places with her and take her pain away.

Please pray for Waverly. Pray that we are able to control her pain and seizures, so she can be as comfortable as possible through this end of life process. Pray for Matt and I as we navigate this together, both of us experiencing a myriad of emotions and never at the same time.

Tuesday, November 10, 2015

An Update

I don't want to take the time to summarize the past few days. That I will save for times of reflection and processing.

Wavey is still with us and bringing joy to each and every moment. She had a little rally over the weekend with some brighter eyes and even a tiny smile for me yesterday morning. Yesterday afternoon she began having more neurological symptoms. She was having small seizures and then one large one that was terrifying for all of us. Her little face looked so pained and she cried for the first time in weeks. It was heart wrenching. Her medications didn't seem to break the cycle and it took multiple doses before she finally fell asleep in peace for the night.

Last night our favorite doctor popped in for a visit. She has been out of town and after a long day at NIH drove to our home to see Waverly. It meant so much to us to have her here. She *knows* Wavey. And we trust her implicitly. We talked through what we have seen, what decisions we have to make, what is to come. Over the past few days I have felt overcome with feelings of regret and fear. Nervous we missed something or made a wrong turn. Her reassurance filled me with such a sense of peace.

Day by day.
Moment by moment.

*********************************

Thank you to everyone who has brought food, sent flowers & balloons, mailed cards, delivered candy, prayed, thought, texted, emailed, drove Oliver around, visited, shopped. We are grateful for our tribe of support and love.

Thursday, November 5, 2015

Thoughts...

I am unable to sleep. The white noise of Waverly's oxygen condenser is a new and unknown sound. And I am so desperate to hear her breathing, that I think sleep will be elusive tonight.

I keep thinking about random things:

How sad I will be when I no longer have anything she has worn in my laundry basket. How some birthday dresses I ordered for her are on backorder and will arrive too late. How I don't want to move her wheelchair from our entryway.

And then I think about very real things:

How will I continue living my life in the same routine with only Oliver. How her absence is going to be ever present. That I may sleep in her bedroom forever.

I am going to climb into bed with her tonight. I want to hold her hand and feel her warmth. I want to kiss her cheeks and whisper in her ear.

I have already told her that we will be ok. I have told her that I understand she is oh so tired. I have told her that she can go when she is ready.

I asked her to send me signs that she is ok. To send reminders that she is ever present.

Waverly has always been a good listener.

Days...

Waverly's little body is telling us that she is tired. Our amazing hospice nurse translated the signs for us and told us that Waverly has days, possibly a week.

Thank you all for your love, prayers and support. As you can imagine, we are turning inward to focus on Waverly and Oliver. It will be much more difficult for us to respond to communication while we care for our little girl, but know it is appreciated.

Monday, November 2, 2015

Sacredness in Tears

“There is a sacredness in tears. They are not a mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition and of unspeakable love.”

-Washington Irving

Waverly is doing as well as can be expected. She is calm and quiet, sleeping most of the time with tiny changes in her breathing. We are doing all we can to keep her comfortable - fuzzy socks, cozy blankets, favorite stuffed animals, familiar movies and music playing, storytelling, dancing star light from her sea turtle. 

We do not have time frame. She is going to guide us. She will know when it is time.

For now we prepare. And as we continue about our tasks, we savor moments with her. Holding hands, kissing her chubby cheeks, wiping her lips.

I'm talking to her. A lot.

As Matt said so beautifully, we are not hoping for a miracle. She is the miracle.