Bittersweet, it’s ok

It has been a couple of months since I posted but really I have not been idle. In fact, I don’t know too many moms and dads who have much idle time. My husband and I went away together… alone. I am not sure if this would be considered a phenomenon of parents who are caregivers to their disabled chilren or disabled young adults like one of our sons, however, it was not easy to just leave. Although, I perfectly trust my other capable adult son to care for his older brother, I still had a sense of urgency to get things in order, in the event something should happen to us. I prepared extensive medical notes with my son’s meds and medical history, physician contacts and vital information. This will be something attached to his wheelchair. Also in this time frame before we left, I facilitated a new pulmonologist for my son. It was not easy because I wanted to present myself as intelligent and articulate and educated in what my son needs to be healthy. I wanted this doctor because he follows a different protocol than the other doctors in the practice and he has educated himself in the care of patients with Duchenne Muscular Dystrophy. He sees another young man I know with MD. Up until recently, I have experienced that many of the doctors disregard the knowledge that parents possess, possibly because they may not have the experience, and perhaps they do not have the time to do the research. I mean no disrespect to doctors at all. In fact, recently I told the new pulmonary doctor that I know many women across the country whom have emailed a certain specialist from the ER rooms where their children lie, usually critical, and this specialist will email the families back almost immediately with instructions for the local doctors. I know this because I am in touch with many families around the world via Facebook, whose sons share the same illness that my son has. The expertise and knowledge shared between parents is extremely valuable. There is no need to keep reinventing the wheel and to expect doctors to know everything. I did quite a bit of homework for our first appt. with this new doctor. I read a book and highlighted information on a packet of papers, in order to be proactive in our son’s care. I told the doctor that I wanted to know that when an emergency  arises with my son, that I do not have to spend valuable time arguing with them regarding his care. We want a solid team of professionals who will listen to us and most importantly will listen to our other son, in case my husband and I are absent and our affected son may not be able to speak for himself. My son agreed to fill out a medical Power of Attorney . I also filled out medical directives for myself. This week, we will also be receiving some new equipment, two ventilators, one for day and one for night. We will all be trained on it. My son has mixed feelings about needing more equipment, and I suppose that is valid. I recall when he received his first wheelchair, then the hospital bed, then a hoyer lift, then a cough assist machine, then a bipap, and now new vents. It may be bittersweet, but everything will be ok once we all get used to the new hardware.

Reprint permission with author’s permission @

Leave a Reply

Your email address will not be published. Required fields are marked *