As someone with a back up plan for every backup plan I already had, I could have never planned or prepared myself for where I have found myself today.
I am surrounded by blessings, seen and unseen, and showered daily with God’s mercy, but yet,
I’m devastated. I am devastated that the plans and dreams aren’t going like I’ve worked so hard for them to go.
I’m angry and drowning in my own guilt. Angry because the selfish human in me refuses to accept that this is my new reality and I am guilt ridden because I am a fixer, but I cannot fix this.
Guilty for so many reasons, for the pain and burden of my own circumstances, and how they are flooding over and into the lives of all of those I love. My problems, my consequences are changing their lives forever as well.
Guilty for bringing this sweet child (intentionally or not, this happened because of something that I was exposed to) into this world who will have to work so hard just to be.
He will have to fight for his life just to achieve and maintain everything that everyone else takes for granted. Yes, everything and everyone.
Guilty at how this will affect his older brother. What will have to give sacrifice? He didn’t ask for this.
I’m suffocating. Suffocating by the overwhelming feeling/need to manage all the responsibilities perfectly and still maintain my sanity.
I’m consumed. I am consumed with grief. Grief over a life lost, over expectations lost, dreams lost.
Daily, sometimes hourly I am reminded of all the expectations lost.(FUTURE POST) There is just as much out there, in the world, as there is right here in my own home, that constantly reminds me how different my life is from where I always thought it would be. EVERY time that realization occurs, it’s like having air sucked right out of my lungs.
Grief eats away at every little bit of hope for today and faith about tomorrow I manage to gain.
Cheated, misled, lost, alone, scared, imprisoned, I could go on and on with words that describe how I feel. Not all are so piercing to the heart to think about. I can look back and see where God was leading me here. I can see time when he was trying to get me to understand and he was preparing me for this journey. He’s been here the whole time, but sometimes, I’m not so eager to listen.
I hope I can find purpose in writing about the ugly truths that can arise from the burdens of my grief. Again, not all my truths are ugly, but those are not the ones I’m afraid to talk about either. I eager to testify about all the moments of mercy and grace that God has shown to me.(FUTURE POST)
Having a child with special needs that make him or her medically fragile, is something I’m sure no one would ever ask for. No one asked me for damn sure. (FUTURE POST) I have to have faith that God is preparing me for a greater purpose…preparing me for something in which I could never have prepared myself?(FUTURE POST)
As I continue to search for direction and to share my journey, I hope to be able to express my most raw of feelings.
Sometimes, out of the human mind, so confounded with grief, realizations can be harsh and scary to imagine for even for that of a grieving mind, but yet, still be painfully true. These are my confessions. These are my truths. – Casey Adams
I just wanted to reach out because your post and the grief really resonated with me. I’m the Mum to a wee Peanut (5 months tomorrow!) who was diagnosed with CHARGE Syndrome at a few weeks old. She is blind and deaf and has brain and heart abnormalities. She is fed through an NG tube and already at 5 months has clear physical development delays. Up until very recently I just felt in huge emotional turmoil and it has really only been in the last few weeks that I have felt something which resembles acceptance. I know I will go back into the various stages of grief, but I am going to hang onto this feeling and the knowledge that I experienced this feeling.
I guess I just wanted to say I can absolutely relate to your feelings of grief and feeling so overcome by it. People said to me at the beginning that these would be my darkest days. That it would never be as hard as it is in those first few months. I didn’t believe them, but they were right. Hang in there, because while you might not be able to see it yet, there is a light at the end of the tunnel. It could be closer than you think.
Yes, thank you and I admire you having the courage to speak honestly about your journey…Have faith, stay strong and He will reveal your purpose in time. Blessings…
Oh my goodness, dear child – yours is a circumstance that no one can truly give you answers for other than God alone. Know that your blog is enabling awareness for the need of prayers on your behalf. I will be praying for you, God knows the specifics, I don’t need to…….God Bless You…..please never lose faith, hope ….. find joy in the small things.
Your response is the first to my first blog post ever. GOD BLESS YOU for reaching out to me. I hope this will be a positive step in my coping journey, and enabling others to reach out through their own grief. Thank you for being the kind of person to give us the courage.