I could blog and write this compelling post however, today I find random thoughts are entering my mind. I thought I’d share. Hope they are as relevant as everything else I write.
- Grief sucks and it ebbs and flows. I can be doing fabulously for a few weeks and then BAM! it hits and the tears can flow.
- Hard to hear “She is in a better place” I mean spiritually I totally believe that but mentally I want to say “wasn’t MY place good enough?” (believers, please don’t challenge this…I get it, she is, but my irrational, upset, she’s gone part doesn’t agree).
- I dislike that people think because I had a disabled child that we received all these benefits and a blank check every month to take care of her. Farthest from the truth and no, we receive nothing now that she’s gone. Oh, and that $20,000 funeral didn’t get paid for by the gov’t.
- Grieving parents can be very overcautious with their remaining children and will not care at all what you think about this. Yes, we will say “get off that ledge” even if it is 6 inches off the ground. In our minds, the worst plays out and well, we’ve already experienced the worst, we don’t want to lose anymore.
- I’m scared of those around me dying. People I love. When death hits you so close to home you hope and pray all those around you will be safe, healthy and ok.
- Right now I do not visit her grave. Right now, I don’t find solace in thinking of my child in a box below the ground with a stick saying her name where her headstone will go. I say right now because maybe I’ll feel differently about this in the future. I appreciate those that go – that is great to know they are thinking of her. Many help keep it clean too.
- I hate feeling helpless. As you read this parents and children are suffering from epilepsy and more people are dying and I feel like our politicians and hospital systems only care about money, not trying something working for many. I guess my kid dying wasn’t enough.
- I have low tolerance for people who get upset over petty things. People not realizing the important things in life and not letting the silly, little, “I didn’t get my coffee” this morning stuff go.
- When someone complains about how Lydia’s Law is not helping anyone I get upset. I want to either scream or crawl in a hole due to embarrassment. I know they don’t mean ill toward me directly but the whole thing is so upsetting. I fought for what? It is saving whom? Then, when people vocalize about it, it makes me feel 10 times smaller and I feel like us doing what we did for the first 6 months this year and her dying is all for naught. I then get angry because no one realizes the time I spent AWAY from my family, including Lydia to fight like I did. So I missed out not just on the last 2 months since Lydia’s been gone but I feel like almost 8 months. This makes me sad. I fought for what people say is nothing and STILL lost my daughter and ALL that time fighting for the bill. I have to deal with that every day. I’m not sure people get this.
- I have low tolerance for those that don’t take care of their children the way they should, they put themselves first over their kids – this includes material things as well as in regards to their health. Taking this amazing gift for granted makes me upset.
- Your daughter I’m sure is very cute. She is probably amazing. You have every right to comment and share her. I probably will not – please don’t be offended. If I do, it was an immense time of strength. This is hard. I don’t have my daughter anymore. Selfishly, its hard to not miss her when I see other baby girls or little girls.
- Yes, I am doing things for me now. I feel guilty about it. I also hate the feeling of needing to explain myself. As a family, we are going and doing more things than ever out of the house because we can. We don’t have a wheelchair, diapers, medications, special food and illnesses keeping us more home bound. We keep our family busy almost constantly – I think it helps all of us cope with the loss so we aren’t sitting…thinking.
- I loathe the saying “kids are resilient.” Some are but some are not and I think as parents we take this for granted and just assume they’ll be ok. My thought further on this is, If, we as adults can’t cope with some issues why do we expect kids will bounce back better than us? This is a horrible assumption so many use and blurt out. Please do not ever say it to me.
- No, I haven’t gotten my thank you cards out from her funeral. I’ve written 125 of them with about 150+ more to go. I have to be in the mood and during the week I find I’m not and on the weekends this summer we seem to be so busy. When I do write them I find they instantly create a bad mood, not because people were so kind but because of WHY I’m writing them. They’ll get done…in time.
- We have family that has not reached out once since attending her funeral. On the other hand we have friends who have stopped by, still brought food, sent us cards and reached out endlessly.
- We are learning how to have this massive balance in our home. The balance that allows us all to grieve, to talk about Lydia and yet to move forward. I want the boys to know that just because she passed it doesn’t mean we die with her – they are important too. We are learning that fine balance of putting one foot in front of each other while still remembering her amazing presence in our lives she had.
- Her death is still so surreal. There are times I sit and just am in shock she’s gone. Certain times (see bullet point one about the ebbing and flowing of grief) where I look at pictures and I can’t believe it and I want to reach out and touch her one last time.
- Before she was taken to the funeral home I wanted to hug her. My husband quick snapped “NO!” I looked at him perplexed and he explained she wasn’t the soft pliable girl I left earlier that weekend. I still think about if I should have hugged her or if that would have haunted me.
- I still ponder every once in awhile of what I might have missed. Thinking about if I could have saved her. Was there something I wasn’t keen to because I was headed out of town and preoccupied? What was going on physically with her to cause her to die so suddenly?
- I still get mail about Lydia almost daily, if not weekly. Sometimes the only piece of mail is a card from a friend or family member. What a true gift.
- I still get random texts from friends thinking of me. Tells me what kind of people and friends they are. Another beautiful gift.
- I usually share a few random thoughts on Facebook however today I had too many as the grief cycle turned its ugly head toward me again today. So…sharing here today. Thanks for reading, that is if you made it this far.
Well, that’s it…all I got. Hoping with each post you understand how the grieving process works as I navigate through it. Also, hoping you appreciate each day God gives you.
I think about you everyday. Today I listened to a song Tyson’s music therapist emailed me of the two of them singing, well her singing and Tyson vocalizing, it was “You Are My Sunshine.” I cried and thought of you. I have always admired you. You are a great person and a wonderful mom. Love Ya!
I just want to tell you how much I enjoy your blog. I know somewhere another family is receiving guidance by what your writing.
I think of you daily and loved what you have posted…… I will forever think of you and your family for that is what gives me a push every time I see something new come about with Jesslyn..keep on doing what you are because even thur your grief you are still that leader that other love to follow… if I can ever be of help plz let me know..love ya girl
You and Lydia are always in my thoughts. I cry for you, your anguish. Your writing draws me in and makes me feel your emotions. I wish I knew what to say to you Sally, when I just want to sit here and cry. You and Lydia are still touching lives and making a difference. ❤
Sally so amazing to read your posts. You fought hard and did so much for WI and my family personally thanks you for that. It will happen here in WI I’ll help you make that happen still. Lydia’s Law will save thousands here. Hugs to you!
Hope you are finding more strength everyday to guide you through your loss. Though I can not feel the magnitude of your sadness I can say writing helped me during a difficult time. I know sometimes when I would write it down and read it out loud it stopped some of the negativity swirling around in my mind. Seems as if I passed it on out to the world to take on instead of just me. You have amazing courage and love and that is evident in everything you do. Remember the sun is always shining somewhere:)
I miss you Sally. Thinking of you. Thanks for sharing your thoughts and feelings.