Loving Without A Net

As with any journey, there are lots of twists and turns along the way. Yesterday our hospice nurse returned to check on Waverly and she was pleased to see improvement. The fluid in Wavey's lungs had gone away. We were given the all clear to begin feeding her again and things were looking up. Then she starting sleeping and slept almost the entire day, but for an hour before bed. She woke up after a long night's sleep and went right back to sleep this morning. Her little body is slowing down. She is now having difficulty with basic body functioning.

I am going to be much less informative in upcoming posts. Matt and I are beginning to feel a sense of pulling back to maintain some privacy and dignity for Waverly. I will still post updates, but with more emotional detail.

"It is a unique and terrible privilege to witness the entire arc of a life, to see it through from its inception to its end. But it is also an opportunity to love without a net, without the future, without the past, but right now." - Emily Rapp

Comments

Anonymous said…
Dear Lord, Thank you for the gift of Waverly, and for the family you have given her. Please wrap your arms around this family and keep them close to You. In Your Precious name I pray.
lesley said…
Beautiful quote. Thinking of you as you travel through these difficult days.
Anonymous said…
I am just a stranger on the internet who has been following your blog for a few years. I can't begin to imagine what you and your family are going through. Warm thoughts are extended to you during this difficult time, as you cherish each and every moment you have with your daughter.
Anonymous said…
I am praying for your family.
Anonymous said…
I haven't checkend in, in a while, an was very shocked an saddened to read about the changes, sweet Waverly is going through.
I'm so so sorry for you all, having to walk down such a difficult road. I'm in absolute awe over the strength you two have as parents and am praying for you all.
Greetings from Switzerland
Unknown said…
Waverly and Oliver will always be remembered. Their lives will always matter. They have a legacy and have lived the most fulfilling and comforting and joyous lives possible given their condition. Thank you for sharing them with us. Nm
Kristin said…
Thinking of you always and checking in frequently to see how you are all doing. Both of your kids are in my thoughts every day. I am glad Wavey is resting comfortably surrounded by your loving family.
Anonymous said…
Hello, I'm another person who doesn't remember how I found your blog, but have been reading since then and holding you all in my thoughts and prayers. Please know that you and your family and your heartfelt sharing of your lives have touched many, many people.

Gail
Antiquerain said…
Praying the collect at close of day for your family tonight: Visit the dwelling of the McNeil family tonight, O Lord, and drive far from it all snares of the enemy; let your holy angels dwell with them to preserve Waverly, Oliver, Matthew and Shannon in peace; and let your blessing be upon them always; through Jesus Christ our Lord. Amen

-Erica
Anonymous said…
Sending prayers for grace to guide you in these special days...days and nights that are all for your family, and no one else. But know, we pray and we hope you find smiles through the sadness.

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