Thank you all for your wonderful words of comfort and encouragement! They have been like balm on our hurting hearts. To be honest, John is usually so busy that he doesn't often read the blog, but last night he read what I wrote and then every word of your comments. It has been difficult for him to go to work every day and leave Ellie behind, but I hope that your words are resounding in his mind as he works this morning and bringing him comfort. As of tomorrow, John is off work for a week and he is wanting to plan some special things to do with Ellie (along with the special impromptu moments that happen when you least expect them).
My brother, Chad, just arrived for a couple of day's visit. We have not seen him for almost three years, and his memories of seeing Ellie in person are of a five year old. We wish that Janeene and the boys could be here as well, but it was a quick trip and not one that could easily be made with a brand new baby. The kids are thrilled with their Uncle Chad, and have been trying to talk him to death! When Ellie first saw Chad, she put her arms around his neck and didn't want to let go. After staying that way for a long hug, they pulled apart and then Ellie grabbed him again and didn't want stop hugging him. She had the sweetest smile on her face.
Once again we are calling upon Melanie to come in and guide us through deep waters. She arrives from Connecticut tonight. We are coming to the point of needing Ellie's port to be accessed to help deliver fluids and medicine, and beyond the physical know-how, Melanie knows what the end looks like and can be immeasurable support in that area. We are so thankful to have her knowledge and wisdom around the clock, and we realize how blessed we have been to have Melanie walk through this with us!
The medicine that Ellie is on is helping her. When it is timed right, she spends most of the day pain free and has slept beautifully for the past two nights. We had a visit from a Hospice nurse yesterday, and she was wonderful! She was able to help us do some planning and gave us an understanding of things that we needed to know. One of my questions had to do with the confusion of seeing Ellie feel so good while knowing that she is probably seriously declining. Her answer made such sense to me and enabled me to wrap my mind around the process. She called this kind of false sense of well-being that Ellie is feeling a drug "honeymoon". She said that it can last even a month (give or take) but that there's no real way to know how close the end is. But then she went on to talk about being tuned in to Ellie's mental/emotional state as much as the physical to gain clues as to the timing of her death. She said that often a person will have such a will to live that they will hang on longer than anyone thought possible, given their physical state. But also the opposite can be true. She said that sometimes you will start hearing the person feel as though they are just too tired, and don't want to fight anymore, and they are often able to let go before their physical symptoms might determine. This explanation helped me so very much, just because I will be able to be prepared as the time gets closer. I know that as you walk this journey with us, you will feel the difficulty of waiting and wondering as we do. I hope that knowing some of this will help with that uncertainty, and I will let you know the "clues" as I find them...
Ellie is doing pretty well emotionally, but as of last night we are seeing some uncertainty and a little anxiety. She very well may be feeling those first glimmers of preparation in her heart that all is not as she had hoped. Please pray for Ellie's little heart, that God will prepare her in His perfect way and perfect timing. And please keep us all in prayer that we will have the wisdom to make this final journey as peaceful and free from fear as we possibly can for her. This is the last thing that we will be called upon to do for Ellie, and we long to do it well!
As always, your love and support mean everything to us. I don't know if you will every know how blessed we have been by your love!