Ali, I read this, enjoying a glass of wine in the sunshine, in a beautiful courtyard overlooking (actually under the shadow) of an old, huge, bell tower of a cathedral in San Francisco (yes, I live in British Columbia, but am here for a conference). It creates such a contrast to appreciate the differences in where your days are spent. As usual, your writing gives me goose bumps, smiles, and then I had some tears as I added your prayer requests to my prayer list. And, I pray that you will not need the strength of the palliative care team! Much love, Nicky
No words - just LOVE YOU and big HUGS! We plan to be in NJ 7/5 and hope to get to meet Phil, Zoe & Ethan and of course, remeet YOU! PRAYING Continually!
Ali I cannot say I understand your plight fully because I have never had to face a dilemma such as this. However, like you shared, God is going before, as well as, along-side, behind, and carrying you an the family at this time. Fear, concerns, frustration, anger are all natural human reaction; but then, there is HOPE because of the AWESOME God we serve. Just know you all are continually in my thoughts and prayers as we continue to trust the God of all possibilities.
Love you ALL - Ali, Phil, Zoe, and Ethan
Praying. I have such a strange mix of joyful excitement for you as you wait to meet your new little one and apprehension about what might be. That feeling must be multiplied by thousands for you. Zoe has changed from the most beautiful baby ever into the most beautiful little girl ever.
I haven't been on your blog in a while and have been catching up. I'm so sorry to hear about Ethan's medical stuff. Praying for you and Phil and Ethan and Zoe. Even working in a pediatric CVICU for the last couple of years, I can only imagine what you are going through as a parent. But I'm happy to talk if you need someone who does this on a day to day basis. And I will be praying.
May the peace of God surround your hearts, May His love continually overwhelm you and May His Joy never depart. The Lord is near and He holds you all in His arms!
I don't know if this will be useful to you or if it is something you need to leave alone for a while; but this is the blog of an incredible, Christian lady who dealt with the questions of life and death for her newborn. Her situation was different because there was no hope that their baby would live -- it was only a question of how long she would survive, while Ethan has all kinds of chances and hope to live well. But they still wrestled with the "weight of glory" as you are. I will put the link here; but you are the best judge if it's something that would help and encourage you or not: