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.
Email Post

Comments

Rachel said…
Praying for comfort, wisdom, and Waverly
November 6, 2015 at 12:25 AM
Anonymous said…
Climb into bed with your darling girl. Breathe in her scent. Twirl her hair in your fingers. Drink your gorgeous daughter in. You are all in my thoughts. I am forever thankful that we contacted a fingerprint Jewelry website and had J's fingerprint impressions taken and had them made into silver Jewelry and that we took handprints and footprints. I am thankful that we didn't do the last load of laundry and that we still had clothes on that smelled like J. Lots of love is raining down on you all from all around the world. Xx
November 6, 2015 at 12:33 AM
lesley said…
She will lead the way for you. You have always given her everything she needed and you continue to do so. That's all we can ever do for our children. They come here with a life trajectory that is independent of us and we are honored to care for them in every way possible, as long as they need us. It's just so hard to let them go.
Thinking of you and your family during this difficult time.

Lesley, mum to Sarah
November 6, 2015 at 12:52 AM
MB said…
Prayers for peace and comfort for all of you.
November 6, 2015 at 12:58 AM
Anonymous said…
For a few days now, I wanted to write to you, wanted to say the 'right' thing, but not knowing what that might be. While struggling with what to say I remembered a post of yours, how you hated those what-not-to-say lists, so I stoped worrying about saying something wrong.
So, with tears running down my cheeks, all I can say is that I am so very sorry for your family, it just plain and simple sucks.
I'm praying for your sweet family
November 6, 2015 at 1:22 AM
Jeremy and Ange said…
Can't stop the tears. Praying as you walk this road.
Ange
November 6, 2015 at 6:19 AM
K said…
I've been praying for your family for years and continue to do so now.
November 6, 2015 at 7:04 AM
Anonymous said…
Oh Shannon! My heart is breaking for you all. I'm praying for your sweet girl and your family. I pray that you feel the Lord's loving, gentle, strong hands around you during this time.
November 6, 2015 at 7:12 AM
Jill V.V. said…
Shannon & Matt & Oliver, Grief is a lonely very personal place, I can't even pretend to understand the level of your pain and grief. I will tell you this, I am praying that when Waverly's soul leaves this physical world,that she has a peaceful,painfree passing, and I pray your sweet child, gives you a sign just as soon as she can, and I also pray that you are surrounded with angels of strength to help you cope with your loss, to help you carry on and care for Oliver, to adjust to a new normal, and to hold onto each other for comfort & strength.I am hugging you from a distance and keeping you in my heart. XO
November 6, 2015 at 7:31 AM
Katie said…
Praying for you dear sister in Christ....I don't know what to say but I do know Jesus will hold all of you in His arms through this horrifically hard time. He is always faithful. He will carry you thru the valley when you don't have the strength to walk, He will uphold you with His righteous right hand. Praying....praying...still praying. ..
November 6, 2015 at 7:39 AM
Unknown said…
there aren't any words at all, so we've been lifting you up.
November 6, 2015 at 7:43 AM
ashleytiberi said…
I'm part of the Taylor family. I've been reading your story irregularly for the past three years or so, but I've always caught up on past posts. I just checked for the first time in a few months last night and wept through your posts of Waverly's sweet spirit beginning to depart this life and your family. My mind and heart and prayers are with you all as you walk her through what is to come. Much, much love and peace and grace to you all as you hold your dear miracle.
November 6, 2015 at 8:23 AM
Anonymous said…
My heart breaks for you. What an awesome Mama you are to your sweet children. We will continue to pray and weep with you. Lots of love...
November 6, 2015 at 8:57 AM
Anonymous said…
Holding your precious Wavey and entire family in the light at this difficult time.
November 6, 2015 at 9:26 AM
Kimmy said…
Dear Shannon,

thank you for sharing Wavey with us. She has touched many lives, I think about you all every day. When the time comes, there will be a candle burning for her in the middle of Europe.

You and Matt are amazing parents, Wavey and Oliver could not have chosen better.

Please give Wavey an extra kiss for me.

Kimmy
November 6, 2015 at 10:55 AM
dawn said…
Praying for you daily.
November 6, 2015 at 12:00 PM
Anonymous said…
I have been reading your blog since you lived in London. Friends of friends, Heidi and Aaron Mann, spoke of your family's story. Your strength is remarkable. Your compassion is abundant. Your persistence is unbreakable. Your love is immeasurable. Your family is an inspiration to many.

We lost our first born at six weeks of age due to a heart condition. While that does not compare to all that you have endured, we do know the pain and heartache of losing a child.

So many are praying for your family. Waverly has made an impact on many. She is a gift and a true ray of sunshine. May you all feel the hands of love wrap around you and heal your heart.

Hugs!
CL in Kansas
November 6, 2015 at 12:46 PM
Anonymous said…
Waverly and I have the same birthday. She and you will never be far from my thoughts each year on November 15th. I pray for you, and weep for you, knowing that the Father is holding you close, totally understanding and grieving with you. Praise God for the true hope only He offers in our darkest hours. Peace, dear Waverly.
November 6, 2015 at 1:56 PM
E said…
Shannon, You have not been far from my thoughts and prayers for the past week. Your family and the story you share with us weigh heavily on my heart. I think about you and your kiddos, I talk about your journey with my friends who also pray and I weep as I think about where you are in these seeming last days of earth-life for your precious girl. My mama heart can't fathom doing what you're doing, but the grace you walk in is so encouraging to me. Waverly has made such a big impact on my life. Thank you for sharing her journey with us. You're an amazing Mama to that amazing little lady. With love, Elisha
November 6, 2015 at 2:34 PM
Anonymous said…
Praying for you, for the Lord's strength and peace and comfort.
November 6, 2015 at 2:36 PM
Jacci said…
Oh, Matt and Shannon. Please know we are praying continually. It seems like everything brings you to mind lately, and every time I think of you I pray. Praying that the body of Christ shows you His love, comfort, and strength. That you would know how much you are loved and how much so many wish we could somehow help carry the weight of your sorrow and pain. Praying that, yes, we are also thanking and praising our God with joy because of all that Waverly is and has been. And also praying that the Spirit would do what only He can... give you a supernatural sense of His closeness and His tender care, lead you through this fire, give you hearts to worship Him even in the deepest grief, surround you with His peace that passes all understanding, and give you a deep, abiding comfort and certain hope that the resurrection is real and Wavey WILL receive a new, glorified body that will never fade or die. He carries the lambs in His arms. xo
November 6, 2015 at 3:47 PM
Unknown said…
With tears streaming down my face I write to you tonight- your words touch a part of my soul that was unlocked when I became a mother- a part of me that feels these words you wrote so deeply and profoundly that I can't properly describe it. The pain you feel I can only fathom but the love you have for Wavey and Oliver- that I know so very well. They are a part of your being, they are emotionally and physically bonded to you from having been a part of you and that is forever. I wish I could make this all better and wave a wand and I feel so helpless and words feel so limiting. I close my eyes and see your beautiful children happy and full of the love and life you give them and think of the power of a mother and father's love. I think of how time can stand still when we are with our children and when I'm away from them how we can still feel them with us because that bond between a child and parent is unbreakable and again eternal. You are incredible and your children are incredible. They are pure love and you must be so proud of their strength and beauty. Please know that we are thinking and praying for you all and know how very much you have changed my life by just seeing this journey you are on and knowing your remarkable family. Love to all of you from Sarajevo and kiss sweet Wavey for me- a truly extraordinary and mighty girl.
November 6, 2015 at 4:08 PM
Jill V.V. said…
Loving God, I thank you for blessing the McNeils with Waverly and for the wonderful gift of her time with her family. Thank you for the joy she has brought and continues to bring to her Mom & Dad & brother and the lives of so many others, especially those who love her. Thank you also for the people who give her joy, those who love her, past and present.
I pray today for strength for Waverly in her body and in her spirit: Strength to find whatever healing there is in this time and place, strength as she waits to come home to you when she is ready and You call her to be with You for eternity. I pray for courage for her family as they support her and love her and surround her in care.
Mostly, dear Lord, I pray for peace. Peace for Waverly in her body as the pain fades away, peace for her family and loved ones in their hearts as they wait with her, and peace for Waverly in her spirit as she finds her true peace in you. As in all places, help us know that you are here with us, granting your peace.
In the name of Christ, who taught us not to fear death and showed us beyond doubt that God will grant us victory over mortality through Him, I pray.
Amen.
November 6, 2015 at 4:53 PM
Anonymous said…
Praying for you - for strength, comfort and peace.
November 6, 2015 at 5:07 PM
Anonymous said…
Please know that you are in our prayers.
November 6, 2015 at 6:29 PM
Anonymous said…
Praying for all of you. I am remembering Waverly's big smile when I knelt down to say hello at her level. She is a beautiful soul now and forever.
Peace,
Erica
November 6, 2015 at 10:44 PM
Anonymous said…
Darling... I just got to read your story. If anything keep us standing is the hope to be reunited in love free from all struggle in heaven. Some things are just to hard to understand but I hope, if possible, that you have found meaning in this you are facing. Only finding meaning we can let things be, otherwise is just something we will struggle to live with. I hope this makes sence to you. Im the mother of 3 kiddos, all with epilepsy and autism. Nothing close to SanFilipo, but I can relate a little to you. All my love and respect to you from Mexico.
November 7, 2015 at 12:01 AM
Inga said…
Dear Waverly,
I'll always remember how I used to read to you outside in the front of the school and how Ms. Ling and I would help to teach you to walk around on your own. I always would look forward to that day of the week so that I could spend A half hour with Waverly and get to read to her and teach her new things.
Your friend, Robbie
November 7, 2015 at 8:24 AM
Anonymous said…
Praying for comfort and peace to surround you and your family. This is not the end. You will meet again.
November 7, 2015 at 9:22 AM
Anonymous said…
so very sorry - my thoughts and prayers are with you and your family.
November 7, 2015 at 12:34 PM
Anonymous said…
I have just found your page and can feel the love and agonizing pain that comes through in your words. May God bless Waverly and your entire family, and carry you through the days ahead.
November 7, 2015 at 5:01 PM
Mama Oak said…
Shannon, your grief cannot be imagined, but you are so loved and supported in the prayers of so many, including me, right now. I hope that you feel that strength and that your broken heart is flooded with every wonderful, extraordinary and tender memory you have shared together with your beautiful and angelic Waverly. Xoxo, Cindy
November 7, 2015 at 6:42 PM
Inga said…
Our family is holding your family in the Light. Our son has enjoyed his friendship with Wavey for all these years at VES. I wonder how many lives she has touched? She is and will always be a gift. Even though this is beyond all understanding, we pray for that peace that passes understanding.
November 8, 2015 at 8:31 AM
Anonymous said…
God hold you all in the palm of His hand
November 9, 2015 at 1:10 AM
JulieK said…
Shannon, I'm so sorry. Praying for you continually. You are an amazing mother.
November 9, 2015 at 5:02 AM
Anonymous said…
Sending thoughts, prayers, tears, comfort your way. There are no words and I am so very sorry for all you have had to endure and all that you will have to endure. Waverly and Oliver are very special and have been so lucky to have you as a mom.
November 9, 2015 at 12:35 PM
Anonymous said…
I've been reading about waverly for years. I'm sorry I couldn't have met her but you need to know that she's made a big difference in my life. I'm not sure of the right things to say but please know I'm praying for you and your family during this difficult time.
November 9, 2015 at 8:52 PM
Post a Comment

Popular Posts