Skip to main content

What Nursing Means to Me

Christian and his nurse, Carolyn at school.
Shared with permission
Some of you guys have been keeping up with the issues we've been having with her insurance trying to cut our private duty nursing hours and I wanted to discuss a little about our nurses.

Some of you might be wondering what exactly private duty nursing even is. Everybody's familiar with nurses, but some people aren't aware that there are situations where a nurse can work in a person's home to help care for that person. The reasons that a person may need a nurse in home are expansive, but the value that an in home, private duty nurse adds to a patient's life is consistently invaluable and backed up by research.

Although I don't need a medical journal to tell me so, science and medicine prove that not only is it more cost effective to have a private duty nurse in the home for certain patients who need that type of care, it is also better for the overall health of the patient and will prevent many more hospitalizations and other serious adverse health events.

Now, all that is the medical side of it, and the medical side of it is why we have a nurse in our home five days a week. Christian's medical needs are complex. Caring for him is a huge job. Having a private duty nurse in our home who can go to school with Christian and accompany him to his various therapies and other things that he might need to do, not only guarantees that Christian is well taken care of and safe when I can't be there, but it takes a tremendous amount of weight off my shoulders.

Everybody wonders how I made it through law school with so much on my plate. Everybody wonders how it wrote a book with so much on my plate. Everybody wonders how I do everything that I do. The answer is threefold: lots of Jesus, lots of coffee, and private duty nursing.

There are so many battles that special needs parents fight. There's a constant struggle to be everything to everyone and do everything that's required of you and it's almost impossible not to stretch yourself so thin that you eventually break. 

Because of private duty nursing, I haven't had to struggle with trying to give Chandler enough attention because his brother require so much of me. Our nurses help me care for Christian so that I am able to care for Chandler, too. Our nurses allow me to go places when I need to, doctors appointments, classes, meetings, whatever it may be, because I have someone who is able and capable of caring for Christian. I don't have to struggle with leaving him with someone who isn't qualified to care for him properly or never letting him out of my sight. 

Private duty nursing has allowed me to hand over the job of "nurse" to someone else for a while, so I can just be Christian's mom sometimes. It has allowed me to breathe when the weight gets too heavy. It has allowed me the confidence of knowing that someone is standing in the gap for me who wants the very best for Christian, who I can and do literally trust with his life, and feel completely safe to do so. These women who nurse for Christian, I have literally asked them if they would take care of my boys for me if something ever happened to me. They are the ones I went to about the worst case scenarios of life. 

They are nurses, but they are so much more. They are friends. They are people that both my boys love like family and know no difference between them and a blood relative. They are trusted partners in raising my boys and in this crazy life of mine. 

Without Christian's nurses, I wouldn't be able to do even half of what I do now. Christian couldn't go to school without a nurse. He simply couldn't. I couldn't leave Christian long enough to work. I couldn't make these trips for my book. I wouldn't have been able to study for the bar. I wouldn't have been able to go to class when I was in law school. My life would be so much more consumed by providing Christian his necessary medical care that I wouldn't often get the chance to just be his mom. And i certainly wouldn't have nearly as much time to pour into Chandler either. 

This is why the thought of losing nursing hours is so terrifying to me. It's not that my children wouldn't be well taken care of without the nurses. I would do whatever I had to do to take care of my children and do it well. It's not that I couldn't do it alone. The fact is, I shouldn't have to. No special needs parent with a child who qualifies for private duty nursing should have to do it alone.


Post a Comment

Popular posts from this blog

Why I Won't Allow My Toddler to Have Cosmetic Surgery

It strikes me as odd that I have been asked many, many times if I will have Christian undergo cosmetic surgery to repair his birth defect. Apparently, it's not an odd question to most people, because I could not tell you how many times I've been asked. The number literally lurks somewhere close to 500, if I had to guess. I am not AT ALL offended by the question, and I enjoy explaining my answer, but still, I find it odd to be asked. Imagine your beautiful child that you simply adore. Her little button nose, those ears he got from his daddy, that little smile with that one not-so-straight tooth right up front, those freckles that dot her cheeks, that bright red hair, or that jet black hair. As you imagine that, I am sure you have a few emotions that go along with it: adoration, admiration, love. You probably think that your child is the prettiest thing you've laid eyes on. Well, when I look at my child, with tissue in the place of where eyes should be, and a crooked s

My Experiences with Bullying

For anyone who follows us on Facebook, you have probably, at one time or another, seen someone make a rude or hateful comment on a photo I've posted of Christian. It has been happening pretty much since he was born. In fact, much of the reason that I decided to make the video that went viral was because of all the negative comments that we would receive, whether through social media or face to face when we were out in public with Christian. And I have to say, I am tired of it. I sometimes find myself unable to deal with a hateful comment on a particular day, or exhausted with the idea of checking my email and finding another rude comment left on my YouTube Channel. So this blog is my outlet to vent my frustrations and share my wisdom on the matter. I consider myself a professional at handling bullying, after all, considering all the bullying I've dealt with over the last few years. At first, the comments hurt. I remember the day that I first took Christian out in in public

Was That Rude?

At the Christmas parade last weekend!  Hey everyone! Christian and I experienced something recently that I wanted to talk about and share with you all! We were at his therapy center for him to do his regular physical and feeding therapy, and we were standing at the car because his therapist comes out to the car to get him to go into therapy and then  brings him back outside to the car so that we aren't waiting in the lobby. We have been really cautious since long before COVID was a thing about germs and illness because illnesses always seem to hit Christian really hard.  And then of course my dad almost died in February from COVID. So we just try to stay out of heavily populated places when we can and take common sense precautions like regular handwashing. So, one way we try to keep the germs down is to not wait inside the lobby of Christian's therapy center and instead we just wait in the car for therapies.  So anyway, we were standing next to our car with his therapist, and a