Meet the McNeil Family

Meet the McNeil Family

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.

21 comments:

Donna (Dodge) Rey said...

You have said so eloquently what my heart felt when my son died! He was born about 3 weeks after your precious Waverly and we only had him 20 days. He would have been 12 this December. My heart breaks anew for your family and I am brought right back to that ache. But in that, I am able to see the hands of God and how He cradled me the way He is cradling you under His wing! We continue to pray for you and your family for strength to walk through the funeral preparations and the burial. It will take more of everything than you have, which is why God gives us the Holy Spirit to carry us! There will be a tremendous time of mourning for you, but never forget that God will eventually turn your mourning into joy. You will, someday be able to talk about her without tears choking your voice. And one beautiful day, you will actually realize you are smiling and laughing as you talk about her. God bless you, I know he already has!

Alicia Booker said...

I know your story through my sister Pia, and I am sitting hear with tears in my eyes and a huge ache in my heart. I can't imagine the pain and ache you are feeling. God chose you, your husband, Waverly, and Oliver for this unimaginable journey for some reason that is far bigger than all of you. I know that is little comfort as you get through each day without her. My prayers are with you and your family...Sending so much love and crazy hugs to all of you! God Bless...

Anonymous said...

There is no way to measure the heaviness l feel in my heart in knowing your beloved Wavey is gone. Mother to mother there is an understanding of what it is to love a child with every cell of your being. For you, and something that will always remain elusive to me, the experience in knowing that a child will be taken away....no matter the love, the tender lullabies, the special experiences, the safety of your sustained embrace. For this I cry and find myself with so many questions, and yet, there are no parents on this earth who could have ever been to Wavey what you and Matt have been and continue to be for Olie. God chose carefully; of that I am sure.

Jessica said...

we are here. Listening. With love and my deepest condolences.

Anonymous said...

I don't know what to say. I'm just so very sorry for you and your family, having to go through something so tough. I can't even begin to imagine the pain you must be feeling, just know that you and your family are thought of and prayed for from afar.
You are an incredible family and you as a Mom inspire me all the time to be a better, more patient, more appreciative mother.
Sending you lots of healing thoughts from Switzerland.

Chris Mechler said...

Praying for you and your broken heart, from here in Thailand. No words, just prayers for peace and comfort somehow through this storm.

Anonymous said...

I am so sad for you. I've never met you but I just want to give you a hug. There really are no words. I do know God never leaves us so I pray God totally surrounds you with his presence and comforts you, as you grieve. You have shown a God-given strength, as I have followed your blog through the years. I ask God to send you small blessings, and a sign from your baby girl that she is near you. Take refuge in him.

Anonymous said...

There are no words,but it feels wrong to not write anything. Praying constantly for you all.
-Kate

Jan Donegani said...

So sorry that we have only just caught up with your family.

Many tears across the miles and our heartfelt prayer for you all through these days of sorrow. We pray that our Lord Jesus will sustain and be very close to you Shannon, Matt and Oliver over the next moments, days, weeks and months, and that your bitter-sweet memories and enduring love of precious Waverly will draw your hearts towards heaven where you will one day joyfully meet again.

So we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. 2Cor4:18

Thank you for being so open and honest in all you write. Your words are really meaningful.

With Christian love
Jan and David xx

NM Wisner said...

Sending so much love. Nothing, nothing worse.

Anonymous said...

My heart breaks for you, and yet it is only an infinitesimally small fraction of what you feel right now. I am so sorry for your loss and your heartbreak. HUGS and love from an internet stranger.

Anonymous said...

You story has touched so many, far and wide. I live in Virginia, and desperately grieving for your family. As they say, the world may have lost one more beautiful soul, but Heaven certainly gained a bright angel. She's lucky to have had you as her mother to prepare the way on Earth. Know that Waverly is safe, and most importantly, without pain. Take care of yourself, and allow yourself to feel the grief. Time heals all wounds.

eangela said...

We have never met, but I have been thinking about and praying for your family all day.

Anonymous said...

I have been reading your blog for awhile now ....finding it after researching this terrible disease. My cousin has two children with SanFlippo (boy and girl) and are walking the same journey as your family. My heart aches for you and your husband. I will pray for you and ask God to give you the strength as you experience a life without your daughter. Prayers coming from Iowa.

A Nelson said...

We are so very sorry for your loss...

Facebook follower - London said...

Prayers - there are no words adequate for the depth of grief you must be feeling. X

Carrie said...

Another internet stranger who has been following your family through this blog since 2007... thank you for sharing your Waverly with me all these years! Her light and smile - your strength and vulnerability - have touched me deeply.

Melissa G said...

My heart aches for you. I only hope our prayers can be a support and comfort to you.

Heidi said...

Love to all of you. I am so glad that you and Matt got to have some time with her today. The picture he posted with her sweet hands looking so peaceful in the background made my heart ache. And I think about Mr. Oliver all the time. He and Miss were so little when we lived in London. It seems like yesterday that we were following them around the soft play area. But it wasn't. Too much has happened since then. It was not my favorite time of my life to have young kids, but I'd go back in a heartbeat if it meant Wavey was here with you.

I learned early on that when we have kids, we wear our hearts outside of our bodies within them. I don't know the pain of losing a child, but I do know that part of your heart went with her. Thank you for sharing all of this because your grief touches all of us. Part of our hearts went with her too. We don't have the right words, but we are here to help you hold it. Sending love. So much love.

Kristin said...

My heart aches for you all. I am so sorry.

Anonymous said...

The world is sorry for your loss. Please accept this sharing of a beautiful piece of music to soothe your heart. It is in a link to a blog, and you will see the words. Scroll down and there is a YouTube link to a performance of the piece. The blog entry explains about the lyricist and composer. God bless you all.

http://williamlanderson.blogspot.com/2010/12/lord-of-small-by-sterling-singers.html