Greetings – happy Sunday evening. What a beautiful last two days it has been! Lovely weather indeed! I wish I could say that I got a ton of things marked off my to do list – but indeed, not a lot off the list, but still did manage to get some really important things taken care of. Lily-Bean, grandchild #3, soon to be one-year old…had her second sleep over with us this weekend! So very lovely-such a delightful little peanut! Lots of snuggles, giggles and good times had by all!
While she is a beautiful baby, and doing rather well for her condition, I still find myself mourning her situation – grieving for her illness and what she will have to endure. I even find myself grieving for my daughter and what she will be enduring….and the loss that hasn’t even happened yet.
When we first discovered her diagnosis – when she was only 8 days old – I remember telling my daughter that we will love Lily each and every day she is with us, and that’s all we can do. I told her not to think about what could be or what might happen – I’m such a hypocrite – but I am also simply human, and a grandma that loves and adores her kids and grandkids…so it’s only natural to have those types of feelings.
Grief isn’t just for when you lose someone or something to a death – it can be just a loss of someone leaving your life for whatever purpose, it can be the loss of a job either by choice or not, it’s can also be the process of losing something – the diagnosis of a terminal illness has a sense of grief. The tricky thing about grief, is that it’s never over, and you can be in three different stages in a matter of seconds, looping back around to each one throughout the day. And– get this — you an be really happy, but also grieving deeply for something at the same time. – being a human is so complicated! In case you do not know the seven different stages of grief, and do not feel like looking into them….here they are…
- Shock & Denial – obviously, when you are told your newborn grandchild has Spinal Muscular Atrophy Type 1, you are in a bit of shock and denial. This can ebb and flow, especially if you see her in pictures or on video and think – well she’s doing so good, are they sure that their tests were done correctly?
- Pain & Guilt – this one hits often while I’m driving…the pain that my daughter will have to endure, the pain of losing her baby girl…the trial and tribulations of dealing with the education system to get her daughter into a school program….
- Anger & Bargaining – my daughter and I just talked about this one the other day – “if we could trade places with Lily-Bean” “how can this be happening…” “what did we do wrong…”
- Depression, Reflection, Loneliness – this one has still yet to really come and sit with me….it’s visited a few times, but for the most part, I’ve managed to keep my head about me, and live in the here and now, and think about the positives. I’m sure this will be more prevalent if we lose Lily.
- The Upward Turn – when all these other ones run around, running into each other, crashing about, bumping around and make lots of noise, this stage comes to sit with me when Lily is sitting on my lap, giggling and being silly – living in the moment – being present with her here and now – because for all I know, I’m the one who will be gone first.
- Reconstruction and Working Through – we do this a lot when we do research, talking with other families going through the same things, or raise funds for more research – we did this one before #4 hit really hard….
- Acceptance & Hope – Even though I have visited with #7, I still find myself visiting #1-4 often. There certainly is a balancing act. It will be a process for a very long time, that I will need to give myself grace and time to allow for the process to take place and remember there are no right or wrong feelings – feelings just are – they are there for us to process and make sense of, but nothing to hang our hats on.
Life is busy and complicated – sometimes there is no time to sit and dwell on what could be or what might be – sometimes I forget to slow down and think about things – until they sneak out and smack me in the face. It’s okay to stand in the rain from time to time, grieve for the sick, grieve for the lost ones, but it’s also important to remember that there are really good things happening here right now. Don’t forget to live for today, live for people who are in your life today, tomorrow is promised to nobody. Bake a cake with your loved one that is sick, take time to make memories with the one that is aging, take some time to spend with people who are ill – live today – don’t be grieving so much, that you don’t live.
I hope wherever you are in this process, for whatever it is you’re grieving – the loss of a spouse, a marriage, a child, a parent, an extended family member, a sibling, a job, a house….and for however long you have been grieving – (because it can take a really long time to grieve something) – I hope you have given yourself grace & self-love because this process can be a life long process. Not everybody can survive it. Piece by piece, bit by bit, we get through the days. I hope your bits and pieces are getting through the days better and better with the passing of time.
Thank you so much for stopping by. Until next time my friend, hugs to you & yours.