My name is Rachel and I found your blog about a year ago from a friends posting. I am so sorry for your loss and want you to know how much I have appreciated your insight. I have looked at the beautiful video of Lucy with tears streaming down my face. I am amazed by your strength with a grief that must be unimaginable at moments.
I have a son who was diagnosed with a rare Brain disease & Muscular Dystrophy at 16 months. He cannot walk or talk but has a fighting spirit in him that we love. He is now 7 years old and defied many odds so far. We have been through many gut-wrenching moments where I thought there was no way my Heavenly Father would test us to these limits. Almost comparable to what I felt was “The Fourth Watch” and wondering if we had been forgotten.
What I have learned is that life is full of sweet moments but much testing. It really got my attention when you talked about the divorce rate of 80% for parents who lose a child, because it is the same for a marriage with a child of severe disabilities. Although our situations are very different, I can relate to an uphill battle of trying to make a great family life and a great marriage while under extreme circumstances that not many can relate to. Thankfully things are good right now and our family is strong. I have learned that through these horribly tough moments in life, I have become a more self-less and compassionate person. What matters is “Right Now” and learning to be grateful for what we do have. You are an example of that too.
Reading some of your moments of anger and frustration has actually helped me. I need that person who has gone through tough moments and hasn’t “sugar-coated” it even if it can be the uncomfortable truth at times. My son had a best friend which was my dad. He was taken from us 3 years ago within a week of being diagnosed with Pancreatic Cancer. He was only 65. I felt as if the Lord has added insult to injury. When you talked about loss in one of your postings I could sense that you still felt such grief and “time” isn’t always a band aid to that grief. That made such sense to how I feel. It’s real and it’s super tough.
All in all I just want you to know that I admire your courage. One day I will lose my son and I will feel hopeless and helpless yet again. Yet your example will be in the back of my mind. Thank you. You have such an uplifting smile!