November 14, 2014
I feel a sense of blog readers and followers stalking my blog, waiting for me to share about my granddaughter, waiting to sink their hearts into my writings, waiting to feel closeness and understanding of God through our experiences, and yet I've kept most of it off my blog and forum because I believe my son and daughter-in-law are desiring privacy. However, I've also watched how many people close to me, friends and co-workers and church fellowship, have already been immeasurably moved by her six day journey, crying with me (last night it was a room of 12 women), unable to know what to say to us, just stopped in their existence to contemplate for a bit, knowing that God fulfilled His purpose with her life in ways I cannot imagine. I am torn. I am pulled to share, yet want to respect privacy. I can feel God pulling me to share so He can send the person who needs to read the writings here. What do I do?
Since God's nudging has been persistent for days, I'm going to remove names and share just a small part. I've written so much, so many prayers, so many testimonies, and then posted, and then left it for a short while before deleting, that there is no way to recapture it all, but to hold it all in my heart. I shall pray that no one is harmed or saddened in my sharing, but can see that it is shared with an intent to help the reader in some way that only God can know.
I want to scrapbook about it and share more, to share more of our faith journey, but somehow I cannot make myself do much of anything right now. When and if I do create those layouts, this writing will help those who see the posts understand the background.
Names are edited as Mom (my daughter-in-law), Dad (my son), Sister (my granddaughter), Grandma (me), and Grandpa (my hubby).
Just a note to say thank you for all your prayers, thoughts, and concerns during this difficult time.
Abigail was born Sunday, Nov 2 and passed away Saturday, Nov 8 at about 5:35 p.m. Her funeral is at noon on Saturday, Nov 15. We could not stay that long and started home just before the big snow storm. I am burning a candle until Saturday when Grandpa and I will hold our own little devotion time and blow out the candle. We are touched that some friends that started a candle in her honor also.
I took the above photo the day before she passed away and put it into the above image during the early morning on Saturday. Her Daddy gave her the little bear.
This little girl touched many hearts across the country with relatives and friends of relatives spread out across the country.
We were blessed to be able to hold her on Thursday, Friday, and Saturday and to be there when she passed away, with her Mom, Dad, Sister, two Grandma’s and Grandpa surrounding her.
Everyone asks what happened, so I thought I would share so I do not need to repeat it.
I am copying Mom’s final blog note below which expresses it through her words.
After the first few ultrasounds, the doctors knew something was wrong because Abigail's head and brain were too small. They had tested her for CMV in utero and it was negative, but after her birth, the test was positive. As she had ultrasounds every two weeks, it became more evident that her body continued to grow, but her head and brain did not, and that the possibility of her making it after birth were not good.
We were told CMV is a virus that is common and many children, and some adults, have it even today and it is not life threatening after birth. Once you have the virus, your body develops an immunity. It would seem that Mom never had the virus in her lifetime until she was 3 or 4 weeks pregnant, which transferred it to Abigail. Since Mom carried no immunity to it, she could not pass on immunity to Abigail. She is now immune to it and, therefore, this is not a threat to a future pregnancy. Apparently it was a “lightning bolt chance” that she would never have had it (especially with 6 siblings and being a nanny) and to have had it early in pregnancy when it would do the most damage. Abigail’s brain stopped growing and would never grow. She had a perfect, beautiful body that her brain could not sustain. Modern medical care could keep her alive, but she would vegetative, so Dad and Mom had to make the tough choice to allow her to pass.
I think for Mom the most difficult part is knowing that her body is supposed to be the giver of life and not the taker of life. She knows it was not her fault, but she struggles.
They fed breast milk and gave medicine to Abigail through a tube. They gave her breast milk by mouth through a swab and she would suck on it, as well as to keep her lips and mouth moist by rubbing it around. Sister really enjoyed helping out this way. Sister, in her 2 year old ability, did not fully grasp what was going on, but did get to enjoy being a big sister.
Everyone asks how the family is doing, which is difficult to answer. We are all emotionally and physically spent, but our faith is what we cling to and what has and continues to sustain us during this difficult time. When a child hurts, we as parents hurt in the deep parts of our stomach. As grandparents, it was triple hurt watching both our son, daughter-in-law, and granddaughter hurt. Then the emotions mixed as we thought about the blessings of being able to see her and hold her and talk to her and the joy of celebrating her life in heaven. With time will come rest and restoration.
Dearest friends and family,
Thank you for all of your prayers and love . We have never felt so much pain but neither have we felt so loved.
Abigail came home on hospice on Thursday at 3. We never wrote an update as to what the doctors found so I will share briefly here. Abigail was born with severe effects from Congenital CMV. This is a virus that 80 percent of the world is immune to and is very common in the US. It can pass from a mother who was not immune and baby can be effected. The intensity of damage in utero depends on when in pregnancy the virus occurs. The infectious disease doctor told us that our case was a lightning strike chance and very rare. Most CMV infected babies are born with little side effects and many times no side effects.
Because CMV passed to Abigail when I was probably only around 4 weeks pregnant, the virus effected the most crucial part of development and she was born with significant brain damage. Her brain could not communicate to her body what it needed to for life. No one ever wants to hear a doctor say to them "your daughter is dying". We wanted her home at that point. Away from monitors and noise and machines.
We brought her home and the few days she was here with us were intensely precious. Caring for her and helping her be comfortable and without pain brought a deep joy that we didn't know was possible. Along with pain we didn't know was possible either. We loved sleeping with her in our bed. Reading every passage we know about heaven to her. Sister loved swabbing her mouth with milk so gently. Sister couldn't get enough "holding her" or enough kisses and snuggles. We loved playing with toys in Sister's room and singing and laughing together. We loved the family time spent with her. I loved watching Dad tenderly give Abigail medicine through her feeding tube. And care so deeply for her. I loved seeing her eyes looking at him as he talked to her about anything and everything...and especially loved hearing him tell her about the weight of glory she was about to experience.
I was snuggling in bed with her in my arms this evening when she stopped breathing and her breath didn't return. Her struggle for each breath was over. Amazing, she passed around 5:35 this evening, the exact time the entire church was in service saying a prayer for her after our pastor announced her birth. No one knew they were praying for her right as she was passing. She was ushered into His presence on the prayers of hundreds of brothers and sisters.
Our hearts have never known so much pain. She was beautiful. Absolutely beautiful.
Our hearts have never known so much love.
Our hearts have never known so much hope. We will see her again, when we see Him, our King and all is made perfect.