“For every tear I have shed in pain, in fear, in grief; every tear in frustration, and guilt, I will shed 1000 times more in JOY….” I can feel his heart beating against mine. I feel the rise and the fall of his chest as his breaths mirror my own. I can see his tiny feet poking out from beneath his blanket. His body is completely relaxed and at nearly four years old, his 28 pounds feels heavy against me.Continue reading →
As I lay here in bed, my mind is spinning from all the events of another long day on the road. Another day spent shuffling between appointments.
Seeking help for one kid with ADHD and the other wearing a heart monitor for 30 days. It seemed I was just starting to get comfortable again. I’ve should have seen it coming, I guess.
My heart hurts for a friend that has reached out me. She says that she is struggling; barely managing. She is sinking in the bottomless pit of responsibility of caring for a medically fragile child. The pressures and stress that come when you are the one holding everyone else together, tend to imprison we Special Needs mommas with the perception that there is not time to care for ourselves because everyone else needs us…. right now. It’s that exact imprisonment, that almost stole my light for good, nearly 2 years ago. I know all too well how badly she is hurting. I want to wrap my arms around her.
I pray for her.
My thoughts move to my close friends, that are laying their heads down tonight with huge gaping holes in their hearts. The holidays are approaching. The first, since they lost her, and more than likely, the most difficult one they’ll ever face.
I pray for them.
I can hear my husband banging around in the kitchen. I’m so thankful for him. He has stood by me as I fell from everything we value. He is still here as I continue to my journey to stay in the light.
I pray for him.
I am so tired. Why am I so emotional?
Oh God! GOD!??? Nope. Nope Nope!
That’s not funny, God. Just NO!
The images flash through my mind. The exit ramp and the rough turn and the bridge. “My” parking spot. It’s taken. I don’t need it any more any way. They can have it. The doors slide open and the rush of warm air causes me to squint my eyes. The shiny floors and the huge round logo seated into the concrete. That is where we stood to take our “Coming Home” picture. The sounds of the waterfall below the stairs that lead to ambulatory surgery. The smell of the coffee shop that we’ve never been to around the corner. The gift shop, the visitor badges, the red wagons. The influx of people, the scrubs. I see one of Kolt’s surgeons going up on one of the elevators while talking on his phone, dressed in full surgery attire. We waited today for several hours. As we left, there was a chopper coming in. Someone was sick. A child. Someone’s baby. Just like my baby.
It isn’t the first time I have been back. In fact, I’ve been back too many times to remember. I have always felt a connection to this place. So much of me died here. But here, I learned a lot about living too.
I am beginning to realize that being there today, has started to evoke emotions in me that I’ve been holding back. I truly love that place. But dammit, I really hate it! It hurts. This place and all the memories, the anger and pain, and darkness. The loneliness and frustration and fear!
The tears begin to flow. The pressure around my chest builds, the memories are like fire in my throat. My stomach clenches and I’m positive my heart physically hurts. I curl into the blankets, my face is wet and my eyes are swollen. The silent screams in my head are taking my breath and now I’m struggling to find even the smallest break for air in between the echoes of sobs, while I’m clenching my teeth as though to keep my family unknowing of my moment in despair.
What are these weird itchy clothes? I thought we were riding….Why am I being carried up to all these doors. Why am being asked to hold this bucket. I don’t know that person. Why are they touching me. Nope. Don’t touch me. Why am I being put in Continue reading →
Growing up, Halloween was a decently big deal. Mainly just for the night though. I remember Halloween cookies or carving pumpkins. That’s not to say we didn’t do it, I just didn’t manage to archive those memories very well I guess. I remember the uproar caused by deciding what to be for Halloween Continue reading →
I have struggled so much accepting what my children mean to each other since my youngest son was born. Kolt’s needs and circumstances most often take the forefront, always causing Kash to have to wait.
I so often feel like so many of Kash’s experiences are stolen by Kolt’s needs. Truth be told, I feel like Kolt’s needs have stolen nearly everything. Dreams, relationships, time, experiences, freedoms….the list goes on, but that’s another story. Being such a young child, it’s understandably difficult for Kash to constantly
My youngest son, born with CHARGE Syndrome, received his feeding tube once he was stable enough to endure the surgery at just 6 weeks of age. From that day forward, it’s been a battle. That not to say that we wouldn’t have had our battles otherwise, but it has just been a never ending, get-on-my-nerves, drive-me-crazy, issue. Continue reading →
You gave rise to a love I didnt know existed. Real love. True love. A pure love. A love that has no expectations. A love that sustains, even if it is not reciprocal. A love that is neither biased because of what you have to offer, nor prejudice for what you are incapable of sharing. A love that is absolute. A love that has no regard for cajolery. A love that is unwavering. Continue reading →