Showing posts from November, 2014

Thankfulness for machine at a time

I know that the title sounds a little Dr. Who-ish and maybe one might expect a Dalek or other type of machine to hop out in front of you, but truly as a parent of a medically fragile child, one learns to not only appreciate but rely on the machines in our life. It is ironic to read about those who sleep away from their child for the night find it quiet...the whoosh of the ventilator becomes white noise to us, ever present. It is comforting, know that your child is receiving the breath of life...through the night while they sleep. Their body is resting, strengthening while the machine does the work, filling their lungs. The suction machine becomes ones closest friend. Without the ability to cough up secretions fully, my son is in danger of choking, blocking his airway. The suction machine clears the secretions quickly and efficiently...many times people don't even realize what has happened. Last night, Javad really started showing symptoms of a cold. Yesterday he was pretty

Gratitude in spite of...a burger and a shirt.

Right now I am feeling a bit body hurts from the accident, my car is a wreck, I'm tired all the time from the accident and now...I have a cold. It's like the universe just said, " dump it all on you right now!" I sort-of want to scream, "uncle," but, as you know, that's not my style.I forge forward...I keep at it. That is the attitude that has helped me to be who I am with Javad. Even when times are rough, you just keep going. I like to think of my friend Julie when we were walking a half marathon. It was not long after "Finding Nemo" came out and we would find ourselves saying, "just keep swimming," but also we knew at the end that we were getting a burger and a shirt, so that became our mantra...As we were walking up the hill, tired and ready to give up, we would start chanting, "a burger and a shirt...a burger and a shirt." That's sort of where I am right now...looking for the mantr

Sleep...a thought of thankfulness

It's not that I don't think about the things I am thankful for during the years, but I do love expressing my specific areas where I am thankful during the month of November. Today, it is easy...I am thankful for sleep. Anyone who has a medically fragile child knows that sleep is a commodity that is in rare supply. Now, frankly, any parent knows that sleep can be in rare supply, but when you have a medically fragile child it seems that the most frightening things happen at night, when you are groggy and it is important that you are able to make life and death decisions.  We have never had nursing during the night, which makes many of our friends shake their head in disbelief. It started with my desire to work and the limited nursing hours we had needed to be used during the day so I could stay employed. It was a bit of a circle...keep the job to keep the nursing to keep the job. Comical beginning to say the least. Now, after all these years, we still don't ha

Thankfulness: My students

#mtmcnmthankfulnessinitiative Day 4: Sometimes being a teacher gets a bad rap...let's face it, the American public thinks that we aren't doing enough, that the students are lazy, that the rigorous education of the past is gone, that we are raising children who are screen-induced zombies... I am not going to lie...the education system has some issues, but this is not the time or place to get on my soap box about how we are over testing and underestimating our youth. Yes, they are different than children were twenty years ago, but they are still children who, overall, desire to learn. Over the last thirteen years, I have witnessed some incredible kindness in my students. Each year I tell them about the littlest and let them know that I sometimes am called away due to health issues. They ask about him...students who have been mine years in the past keep up on him, celebrating success. It is heart warming beyond belief. This past week I was in an students worr

Nursing our mental and physical health...

MTM-CNM Thankfulness Initiative Day 3: When you have a child that is medically fragile, you have to make concessions...time, freedom, friendships, family, sleep, and sometimes even your sanity.. Many of these concessions come don't see them coming until they have blasted through you, leaving you breathless and sometimes flustered, not knowing what just hit you. In our case, Javad was a surprise...on so may levels...but his birth, and lack of health, was a big shock. Everyone assumes that your child will be healthy...we assumed the same...until it wasn't.  I vividly remember one of the NICU nurses, Ron, telling the Neonatologist that we could benefit from home nursing and her response essentially being that it wasn't going to happen. At that time I had no idea what that meant, but now I realize that they were sending our sweetest boy home to die...nursing wouldn't be needed. He had other plans.... After five months the insurance decided that it was mo