Well 3 1/2 weeks have gone by.... April comes to a close.
I am surprised because everything is EXACTLY the same. I am not sure Evelyn was expected to live this long, but no one really knows.
So what is life like? A typical day?
Elizabeth is basically homebound. Due to Evelyn's wound a car seat is not an option and any other alternative would leave her lying on her belly on the floor of the car.....
So... Tiffany and Kathy take the kids back and forth to preschool on Monday through Wednesday and Denise or another wonderful person takes them to Church School on Friday mornings. Saturday mornings are soccer games. And Sunday is the big outting when Evelyn sits on Elizabeth's lap and we drive the short distance to church.
Elizabeth and Evelyn are alone after breakfast most days until 1:15pm and typically some one will come for a visit by late morning, usually a friend and sometimes someone from PedsCare.
Afternoons are typically filled by either Alison coming and playing with the boys or two different Hospice volunteers each come weekly and play with the kids late afternoon.
I usually get home between 3:30 and 5:30 pm. Timothy has soccer Tuesday and Thursday nights.
At times there is a hypersensitivity about, "Is she fussier than usual" "Is she sleeping more than usual?" "Is she eating less?" "Is she the same today as yesterday?" Which always brings the reality back right to the pit of your stomach. Then you kiss her fat cheek and the rest of your worries melt away....
3 comments:
God Bless You Lisa and all of your children...what a beautiful expression of love for Evelyn! Nice job! Evelyn is so lucky and blessed to be surrounded near and far by so much love and affection.
I pray for evelyn and your family everyday, you must be very strong because i dont think i could do it. evelyn is very lucky to be surrounded by a very loving family and i hope that she stays a miracle baby for as long as possible.
Dear Elizabeth, Brian, Timothy, Julian, and Evelyn,
Thank you for taking the time to share your family's journey with so many people. You are an inspiration to cherish every moment we have with those we love. I am truly touched by the love that you are sharing not only with your own family, but with all of us. You are in my thoughts and prayers.
Love,
Amanda & family
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