Monday December 14 – Craving a Normal Life.

First thing this morning I called Dr. Feltmate’s office and your social worker. I left a message for the doctor but I got straight through to the social worker. We discussed my concerns about your mental health. I feel that things are a little worse, not better. I ask about a psychological consult. She is going to discuss it with the doctor.

I broach the topic of a weekend pass this coming weekend to see if that helps your emotions. She promises to look into it. I felt much better after the talk. I don’t feel so alone in advocating for you.

We found out last Thursday that you are seventh on the wait list to the NSRC. This translates to about a 6 weeks wait. We were told that if you are discharged from the hospital, you still maintain your position on the list. This is crucial information. We discuss this later in the day. No Christmas is worth the price of delayed rehab for you. We agreed that we both feel very strongly about this. Rehab possibilities take priority over everything else.

I made some calls and arranged for the equipment to come a little earlier and to have it a little longer. It’s all set. We will get most of the things between Tuesday and Thursday and the last item will be the bed, which we will get on Friday. Then all we will need is you to make the picture complete.

The social worker and I discussed the possibility of you being discharged from the hospital. She had said that outpatient physio may be a possibility as long as there can be someone to accompany you to and from the physio appointments. With such a strong supportive circle around us, I think that this could happen. But she cautioned me to “see what this weekend is like”. She is right. I must walk before I run. But I’m just so happy to have you home and have a little more normal in our lives.

We have all been craving some normal and we are going to get it for Christmas!

Last night when we got home, Tara complained of a sore chest. “The bone hurts.” She gestures to her sternum. I take her temperature and her pulse, they are OK. I asked if it hurt to swallow. She said yes. “Do you have a bad taste in your mouth?” Again “Yes.”

I think Tara has heartburn. I explain to her what that is. I suggest that she drink some water and get into bed. This morning, Tara is not any better. She said the pain kept her up most of the night. I decide that she not go to school today. I take her over to Juanita’s house for the day and feed her a TUMS tablet. An hour later, she is still no better, so I call our family doctor and get an appointment for 2:45.

Yesterday, while Tara was cleaning her room, she found a watch that she had forgotten she had. She has been keeping track of time since. First, she was worried we would be late … we were on time. Then she worried “Dr. Bell is late. My appointment was 15 minutes ago.” She keeps checking her watch. The her apple didn’t fall far from the your tree. This is her effort to try and control what she can. Time is a challenging dimension to control. I think this adds to her worries.

I talk to Dr. Bell privately for a few seconds. I suggest to her that anxiety is an issue and that a good physical exam would be good to waylay her fears. She gets a good once over examination. Then, Dr. Bell asks questions about her symptoms and about life in general. She thinks it’s heartburn too and she talks to Tara about how stress can do this to your body. I think Tara gets it. We leave with a script for medication and some advice to try to leave the worrying to others and take time to enjoy life. “Do things that make you happy and remember that Daddy is getting better every day.” If only I can heed this advice too.

As Tara and I go up to your room to visit, we run into the social worker from this morning. I introduce Tara and explain “That this is Daddy’s social worker.” As we climbed the stairs, Tara asks me “What is a social worker?” I am lost for words. After a few seconds thought, I said that a social worker is someone who helps a person get his or her life back to as normal as it can be. I added ,that I thought she was very good at this, because she has helped Daddy a lot.

I haven’t seen you since last night and haven’t talked with you since this morning before work. You look relaxed and pleased. You tell me of the good talk you had with the social worker, and how she is very bright and knew just the right things to say to you. She helped you change your outlook. You are very happy about coming home for the weekend. You are very concerned that coming home for longer then the two-day passes, may endanger your position on the list. We have been reassured that you will stay on the list, but you would like that in writing. You want to stay focused on the goal of rehab.

You are concerned that your presence in the house will “burden” me. There is that word again. I hate the word, burden. “You, at home, would not be a burden … it would easy compared to what I’m doing now. To have our family all together in your home is not a burden, it is a labour of love.” Emotionally, I think it will be easy. This will give us all a little normal.

I think I can hear some of the social worker’s practical advice being echoed by you. I try to stay practical too. For now the two-day pass for this weekend is the smart approach to take. From there, we will see.

We work on your Christmas list. It’s getting long. You want to give big presents to many of the staff in the hospital. “I am really attached to some of the people who work here at the hospital.” I do too, but I have to be practical, and rein you in on the present giving. A small present with a note with some heartfelt words mean more to most people then any big present.

You commented as we left, that you had no tears today. I am so relieved. I think that your brain is on the cusp of depression. It will take very little to push you into the vast dark emptiness of depression. This places a lot of responsibility on us to keep you ‘up’ and charged to go. It seems, if you get the right information on a regular basis, then you can see the light at the end of the tunnel. Today illustrates the relationship that exists between your mood and the environment. I really think, being at home will help you.

To night, when I went to pick up Quinn from gymnastics, he was reviewing the number of days to Christmas. I told him about your day and that you were excited about a different day. When I mentioned that you were coming home this Friday., Quinn said “Oh my gracishes goshishes, that rocks!” He then squeals with glee. Four more sleeps … and we will have a little taste of normal.