Monday, April 21, 2008

Removing the Wig

If you are a Good Morning America viewer, you saw Robin Roberts announce her decision today to remove her wig and appear on the air with her nearly bald head. Robin has been battling breast cancer for a few months now and detailed her struggle on GMA. As part of that reveal, she chronicled her decision to shave her head when her hair fell out, then appeared in a fashion show in February without her wig and finally appeared today with her own hair, now that it has started to grow back. In doing so, she made a comment somewhat to the effect that her hair represented the life she was holding on to and not where she was now. The statement was in many ways profound.

One of the most challenging aspects of caring for Dear Son, at least for me, was giving up my career, many years ago to care for Dear Son. Over the years, it was a struggle. It was not enough to manage his declining health or his loss of milestones, but without a career, there was never really enough money left to do much of anything so along with the career went any kind of goals. Because I loved what I did, I found giving up that life to be very difficult. It was hard not really fitting in anywhere and working menial jobs so I could care for him. The boredom level was extremely high and I felt punished somewhat, that because we don’t have daycare in this country for the disabled, that I was forced to live this life.

Earlier this year, I had the opportunity to attend a black tie event for the Respite House. It was a lot of fun planning for the event and getting dressed. Earlier that day, I was busy caring for Dear Son and happened to change a record number of diapers. I remember thinking about how nice it was to have a corporate type event to look forward to that evening and to be able to get dressed up and go out. At the dinner that evening, I remember the food and how good it tasted. It reminded me of the many corporate dinners I attended. Part of my job was to entertain clients so it happened fairly regularly that I would take them to dinner and an event, so eating out was a pretty normal part of my job. I’d travel to different cities and always managed to get in some personal time each time I went out of town. In addition to the client travel, we’d have our department meetings in some fun locations. As the evening went on, I met a lot of wonderful people. It was a really fun night and during that time, I would slip back into the Corporate world that I left behind, if just for a few minutes. Ironically, as soon as I’d remember back to a corporate event, I’d shift my mind back to Dear Son, as if the two could never really co-exist in the same evening, let alone the same event. During the fundraiser, they showed a clip of the Respite House that involved many of the nursing staff caring for the children. It was many of the same duties I did at home. It felt odd to be sitting at the fundraising table, when I was really a caregiver, as if my dirty little secret would be revealed anytime soon.

Make no mistake, I love Dear Son deeply. I’d never trade what I do for anything or anyone. But that didn’t mean that a part of me wouldn’t like to go back, to a time when I had a job that I loved and made a real income. In my dreams, I would often wish for a time when I could work full time and that’s part of the reason you will always hear me stressing the importance of daycare.

But something happened over these last few weeks. It was a bit of minor thing but it was huge for me. It started with the botox. As you are aware, one of Dear Son’s biggest issues was his lack of saliva control due to his deterioration. He’d choke on his salvia night after night and I was afraid he would aspirate and get pneumonia or worse yet, choke to death. The botox was great however it peaked at around the three week mark and then choking began to return. At that point, I had a conversation with the ENT over the phone about possible next steps. The next steps had included removal of the saliva glands, along with a Nissen and if that didn’t work, then we’d have to consider a trach.

I thought of the trach and was not very excited. I am rather squeamish and have a very weak stomach so the trach bothered me on many levels, one of which was how Dear Son would ever manage that and secondly, how I would ever be able to care for that myself. It would be very selfish if I had to deny Dear Son care he needed based on the fact that I had a weak stomach. On the flip side, the thought of caring for that would be very stressful. I began to have some conversations with a nursing friend of mine with regards to what a trach entailed and how it might work for Dear Son. She’s a pediatric nurse and cared for many Special Needs children, and many with trachs. I worried a lot about Dear Son being able to have a trach at all since he can’t hold his head up very well. I learned there were different types and there were things that we could maybe do to help him with this. Even though a trach might be far off, it’s always better for me to have some time to think these things through, as I don’t care much for surprises.

Once I understood how they worked a little better, came the larger decision…how would I ever tell Dear Son? Although we weren’t at the point where a decision for trach would need to be made, I began thinking about how this might play out. Typically, whenever I make a change for Dear Son, or the doctor makes a change, I tell Dear Son about it. I tell him what it going to happen, why it’s going to happen and I try to be pretty honest about it. I look him in the eye and always tell him that I wanted to let him know before it happens. I usually do this when he’s ready for bed and when we have a little quiet time or when he’s ready for a nap. I try to tell him a day or two before when it will happen since if it’s too far out I don’t want him to worry. I also make certain to include just the information that he needs and not elaborate on it too much. More often than not, he’ll lick my hand, which is his way of giving me a kiss. It means, “Thanks for telling me, Mom.”

But as I imagined the scenario in my head, I couldn’t imagine ever telling Dear Son that we were going to have to cut a whole in his throat. I could only imagine how that would break his spirit. Here is a young man who has been through a lot in his life. He has a body that didn’t work very well and a body that he spent years on in therapy trying to get it work somewhat like a normal person. To make matters worse, he ended up losing the very skills that took years to attain. And now, I was going to tear a whole in his throat. In addition, this would only present more issues for him, the panic of whether or not someone would or could help him if I wasn’t around and a whole host of different scenarios. I couldn’t imagine that.

On top of that, was how it would affect another hospitalization? What happened if he got another pneumonia? What exactly am I doing? Am I extending a life out of selfish purposes or am I really doing things to help him when he’s sick? At what point is too much or at what point is enough?

After serious consideration, I decided that I would not do a trach. I made the decision that whatever happened, it was not going to happen for Dear Son. All other factors aside, I couldn’t imagine having that conversation with Dear Son. And that was it.

After I made that decision, I was rather proud of myself. For the first time in a long time, I was able to be proactive about a decision that would potentially save or extend his life. And I felt good about it. For so long, all of the decisions were always about extending his life or doing whatever I needed to do to make him well or to make things easier for him. I don’t regret any of them. It was always very comfortable for me. They were always the right decision at the right time. But this one was huge. For the first time, I made a decision based on where we were right now, not where I’d want him to be or rather, to extend his life at any costs. I made the decision from a position of strength. By making the decision now and thinking about it far in advance, I could really explore all of the options. I didn’t feel I was taking anything away from him by not choosing to do it but rather I was giving something to him. I was allowing him to keep his spirit. I was allowing him to keep his body in tact. I was allowing him to be him, no matter what happened. And whatever happens, it will be o.k. I will love him no matter what works or doesn’t work anymore.

So today, when Robin Roberts said she was making a decision based on where she was now and not holding onto the life she had, I had to agree. For the first time, I made a decision on where we were now, not trying to hold onto the life he had, or we had, at any cost. And that felt really good. Sometimes, we have to let go to move forward. And sometimes, we have to be pushed. This time, I did it all by myself.


Michelle said...

big steps. I completely understand what you are saying. I think about you guys often, and have you in my prayers. I love that you always respect HIS needs above all else, allowing him his dignity is the best gift you could give him.

Dreaming again said...

I understand all too well. With husband rather than son.

The choice will still loom in the future. In the past, it was clear cut. He by no means wanted to be on a trache, period, end of discussion. However, after last years scare, he's not so sure ... he realizes that giving up some physical freedom to be around for his children, might be worth it.

Suddenly, I'm left with needing to know what decision to make when and under what circumstances (to intubate or not, becuase if he ever goes on a ventilator, he'll never come off, it will mean life on a trache)

It makes it more difficult that he's not even sure of what circumstances he'd be willing to make what choice.

It's been 11 months tomorrow since he went into the hospital! Yesterday ... he took a nap without the bipap! First time in that 11 months! (still used the oxygen, but no bipap!!! .. progress comes slowly, but progres none the less!)

Jan's Funny Farm said...

You are an amazing woman.

The Preemie Experiment said...

As always, you have written such a thought provoking post. You have an incredible way with words, letting us all in your world and somehow helping your readers with the bridges they are crossing.

Hugs to you Dream Mom.

Anonymous said...

As always, every word you write is infused with the deepest of motherlove.

Thank you for sharing your extrodinary journey with your beautiful boy.

Ex Utero said...

So nicely written.

Sarabeth said...

That was very moving. You are such an amazing person.

Anonymous said...

Provigil (modafinal) has recently been shown to be highly effective in prevention of drooling for CP kids. It is used for spasticity with good effects. It has other good side effects such as less drowsiness, depression, more energy, as well.

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