Meet the McNeil Family

Meet the McNeil Family

Thursday, November 5, 2015

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.

36 comments:

Sue S. said...

I don't know you, don't even remember how I found your blog but I have been following your story since Waverly was diagnosed. My heart is breaking for you and tears flow. We lost our 6 year old son 20 years ago, so I know the pain of losing a child but I cannot even begin to comprehend all that you have been dealt. God blessed you with sweet, beautiful Waverly and Oliver and the two of you are the most wonderful parents they could ever have. Praying for you at this very difficult time. So very, very sorry!

Anonymous said...

May God bless you and keep you. May he cause his face to shine upon you and give you peace. Nm

Jan A said...

My heart breaks for you all; praying a lot.

Anonymous said...

Praying for comfort for Waverly and for God's love to surround you all and hold you close. ~Beth in Ohio

Anonymous said...

Hi, I started reading your blog as a friend of a friend, just lurking and observing your journey. I just wanted to say how sorry I am that you're going through this, and how amazing your family is for the love and compassion you have toward your children. You are dealing with an impossible situation with a grace and strength that is absolutely remarkable. Please know you have the thoughts of many people. I know that doesn't make this terrible situation and less awful.

Anonymous said...

Although I don't know your family personally, I have a friend who volunteers at Jill's House and has shared the interviews you have done for the respite center. I just wanted to let you know that I am holding your family in my prayers as you go through this unimaginably difficult time. May God grant you moments of peace and a sense of His presence as you cherish your time with Waverly, and may He comfort your hearts when it's time to say goodbye for now.

Carrie said...

We will be praying for you. She will be a prayer request at our church this Sunday.

Whitney said...

Blessings and prayers to you during this sacred time.

Holly Derhammer said...

My heart breaks for all of you. Praying.

Anonymous said...

I've been following your blog for years and I'm crying as I read this. I've never met you or your family, but I feel like I know you. I want so badly to give you a hug and cry with you. Please know I (and so many others) are praying hard you, and Matt and Oliver - and most of all Waverly.

May you see God's light on the path ahead
When the road you walk is dark.
May you always hear,
Even in your hour of sorrow,
The gentle singing of the lark.
When times are hard may hardness
Never turn your heart to stone,
May you always remember
when the shadows fall—
You do not walk alone.

Jill said...

May angels of strength and comfort surround you and your husband during this very difficult time, I am holding all of you in my heart and in my prayers, and may angels of peace surround Waverly

Boos Family said...

I came across your blog years ago and have been quietly following your journey. You probably won't remember me, but you reached out to me 5 years ago when my son was initially diagnosed with Sanfilipo syndrome and I had reached out to the MPS Society for support and resources. In our case, we learned about a month later that my son was a false positive and he was and is fine. I felt too guilty for getting a misdiagnosis that I never contacted you again. My heart breaks for you and your family. I have always admired your strength and I have never forgotten your phone call and how kind you were during the worst days of my life. I wish I could do something more, but I will pray for comfort and peace for your beautiful girl and family.

Anonymous said...

Shannon, you don't know me, but I have had the pleasure of knowing Waverly and Oliver through volunteering at Jill's House. I have sung songs and played in the pool with Wavey, and have shared a snack and sat in the bouncy castle with Oliver. I've held their hands and loved on them, and I hope that knowing that there are so many of us at Jill's House who love your children brings you a little bit of comfort during this time. My sincerest thoughts and prayers are with you and your family right now, and I pray for Wavey to be content and comfortable.

Anonymous said...

I'm an ESE teacher that started reading your blog in order to better understand the road these amazing parents and children are walking. I've learned so much from your grace and love for your sweet children. Praying for you now, thank you for sharing your heart.

Leslie said...

Our family is praying for yours during this heartbreaking time. May God in His great mercy give Waverly deep peace and comfort and continue to sustain you with His strength.

Anonymous said...

You don't know me, but my son goes to the same school as your children, and my daughter did as well before she transferred schools. I have seen your children as I helped in the lunch room in years past, and my heart breaks for you. I wish you much peace.

Anonymous said...

You have blessed all of us by letting us walk just a moment in Waverly's life. You have given us snapshots of your life with your two precious children since their diagnoses, and I want you to know that I have not taken those snapshots lightly. You have acted with grace and dignity through the darkest days of your life, and shared your most precious gifts (Waverly and Oliver) with us, your readers, who have fallen in love with your children. There are never words, but continue to know that your family, and Waverly is being lifted up in prayer. May God wrap his loving arms around your family, and bring peace to Waverly and to her body that has fought so hard for her.
With love,
Kate Brown

Anonymous said...

You all are in my thoughts and prayers. Big hugs to all of you.

Anonymous said...

I don't know your family, but our children attend elementary school with your son and daughter. Please know your family is in our thoughts and prayers.

Anonymous said...

Shannon, you don't know me, but I had the pleasure of being an intern at Jill's House two summers ago and working with sweet Waverly. I wanted to let you know that my days with Waverly were the absolute best. You and your family are amazing people. I pray that God grants you the comfort and peace that only He can give.

paula said...

Praying for your family, Shannon!!! Sending love from Texas! Xoxox, Paula

Anonymous said...

My thoughts and prayers are with you and your family. I can't even imagine what you must be feeling. My sister lost her son when he was 10, it was a difficult time in our family. I am asking God to help you. He will comfort you and be your strength during this time, he will walk beside you with his Love. So sorry...

Jonathan Swavely said...

Praying for you and your family, Shannon. Hugs and love, the Swavelys

cathyvalenza said...

We are a Greenbriar Family that have been following your story. My heart just breaks for you please know if you need anything from your neighborhood family, just ask. My prayers are with your sweet baby girl

Barbara & Jim and family said...

You are all in our hearts. We wish you peace today and in the days to come.
All of you are surrounded by love and support.

Anonymous said...

You don't know me, but I have followed your story for years, even before the birth of my own children. I have sent many prayers your way, and tonight I'll send another. Just wanted you to know there is someone here who has been touched by Waverly's story.

Katie Dyer said...

"From my window there is a hill to the stars.
The hill is not high, but the stars are not that far,
And for some reason nobody sees it but me.
From my window there is a hill to the stars."

I thought of Waverly all evening.

Hugs to you all

Anonymous said...

Since you shared this post I have not been able to fall asleep, thinking about little Waverly. My heart is breaking for all of you. I have been following you for years on this blog, relating very much during the most difficult time in my life so far (a pregnancy with a very scary diagnosis).
May Wavey´s passing be painless and easy for her and her perfect soul lifted from her tired body. She touched a lot of hearts during her time on Earth and will continue to do so.

Anonymous said...

I am thinking about you and your family.

Anonymous said...

So, so sorry. I have followed your journey since Waverly was diagnosed. You all are an amazing family and are an inspiration. You all will be in my prayers.

Anonymous said...

I just discovered this blog today through a friend on FB who I believe taught your daughter. I don't know you, but as a mother, I know what that fierce love is for your kids. Thank you for letting people into your lives. You may be one of the strongest people I've ever read about. I pray for you and your family in the difficult days that come. I pray for God's mercy on Waverly as she makes her transition from this world to watching over her family. And I thank you. I thank you for reminding me that all that matters is that we love the heck out of our kids. We just love them. At the end of the day, nothing else matters. Thank you for reminding me to soak in all moments, smells, sounds, and to even see beauty in my impatience or frustration as a parent. My thoughts are with you and your family

NM Wisner said...

Sending love and praying as you asked for peace for Waverly and for you all.

Unknown said...

My Prayers are with you...Blessed to had known her and heard her infectious laughter!

Anonymous said...

I am praying for your family. God bless.

Jessica Harris said...

Shannon, Matt, Oliver and Waverly,
My heart aches for you as I read this today. I can't imagine what you are going through. May God carry you through these difficult times. I will pray for peace and understanding.

Anonymous said...

You are all in my thoughts. I have been following your children's story for a while, and I cannot even imagine what you are going through. Please know that you did what you could. You gave your children what they needed: love, care, support, family. You are both amazing parents. I admire for all that you have done for them.