The Games We Parents Play....

The wedding was beautiful, the reception was a lot of fun late into the night … and the morning alarm clock went off anyway. So "sleepy me" is writing this update and that is usually the instigator for communicating the downside of brain injury recovery. What?  It’s all downside? Nah—though Juliana would not agree. In fact as I write, I am a little mad at that young lady.  (Not for real mad, the kind of mad parents pretend to be to make a statement to our children).

I can remember one summer as a kid my dad didn’t speak to me for a very long time. I knew he was mad but I had no idea what I had done. One day my Mom said, “You know your father is not speaking to you, right?” I was glad she brought that up. I did notice he was frostier than usual to me. You see in spite of my great respect for my father’s wit and wisdom, ours was a troubled and strained relationship. I never quite made it into the top four favorite, but still I recognized when I was less liked than normal. So this particular day after many weeks of his making a point of not speaking to me I replied to my mother, “Yeah, I noticed that.  Why?”  She looked surprised and said, “You don’t know?”  I really didn’t. I mean, I am sure I deserved it. I was a good kid, good grades and pretty darn obedient but I had a stubborn streak that I mostly held in but wore it all over my face. In our home that was still considered disrespectful. If I had to guess now what set him off back then, I could win money on the answer: "Attitude."  My mom never did tell me what it was and suddenly my Dad dropped the whole thing. That was my first glimpse into what I would recognize in the future: Sometimes parents are just trying to make a point and they may not be mad at all. I suspect now that my Dad loved me far more than he let on and was trying to use his most convincing "I am disappointed in you" face to bring out the best in me.

Through most of my life, it didn’t work, it just hurt. 

Then something happened as I watched my Dad become more and more frail. I let go of all the hurt and resentment and just loved him for the man he tried to be.  (Oh, so this is how it’s going to go … "sleepy me" is going to reflect, not depress.  Got it.)

So you see Juliana encouraged one of those moments tonight during her dinner.  We expect her to do things like feed herself. Not all of us of course, some people still feed her and forego the learning opportunity. As much as it annoys me, for the few times it is someone else preparing her lunch, I just let it go. "Bigger battles on a better day." Of course we cut the food, (hover) and give her queues, adjust her utensils, raise her arm or tilt her head if necessary, but success requires her to practice.  Makes sense, right, right?  The reward of food is the only thing she really enjoys so the motivation should be effective. Frustration during the process tonight brought back the Juliana we knew back in July: She was angry. 

Let’s see … angry, trying to eat unsuccessfully, temper tantrum ... yes, food went flying. Don’t look at me like that I didn’t throw it, SHE did! Well, brain injury or not, I have to maintain some expectations for this daughter who is smart enough to understand that the pecking order still exists. I am Mom, you misbehaved, and dinner is over. I cleaned the mess, got her back in bed and left the room. Harsh?  Perhaps, I don’t really know. When I returned she was watching me with an unsure expression. She knew I was "disappointed" in her behavior and her attitude turned around—a little. 

The one good thing about being in this setting is having "staff."  I could walk away.  So during the whole four minutes where I let her stew (what did you expect?  An hour?  Ha, she does have a brain injury you know) I thought about how I would look at her when I returned to make the impact I was trying to make. She is a 25-year-old woman who has the emotional lessons to learn of a young child. I have no idea, truly, none, if this is the right way to handle her. The expertise in this specific situation is right now limited to whatever I think is best. 

When my first four children were small I worked in a series of daycare centers and preschools so I could bring my kids to work. The side benefit is I learned from the other teachers, parents and students what worked for me and my kids. There were plenty of examples to pull from and plenty of people to consult. This is the lonelier side of figuring it out as the challenges are so specific to THIS daughter with THIS injury and no matter how many people you share similarities with, none will have YOUR answer.  Ultimately she got the point, I could drop the act … Wait, you aren’t going to tell her it was an act, right?  OK, good because I thought you were on my side here. 

Now things are fine, I even let her wear my favorite hoodie from the most awesome band, The Able Body while she waits for them to return from Singapore so she can get her own. (Hint to Chris and The Able Body boys: she asks every day for a hoodie so please, help a mother out!) She also got to eat anyway as her Dad came in with food much better than hospital food: Portillos. Once again I walked out of the room, though this time Juliana’s attitude was fine.  Her Dad was there and he wouldn’t be the bad guy and make her feed herself.

Moving on

Speech. Sigh … SIGH ... Maybe it is my insane upbringing where we were taught to articulate to the point that most people probably get annoyed at our speaking, or maybe it really is that speech therapy is something different than I want it to be.  Juliana needs speech therapy. She needs coaching on saying things correctly, exercises for the weaker side of her mouth, tricks to get out the sounds that she struggles with, ways to improve her breath control, lessons on how to add tone and melody to her voice. It must be a therapy that does not exist and my expectations are too high.

Today they decided that she should go down to 30-minute sessions instead of 45 because she struggles and tires. Guess how Juliana will undoubtedly spend the 15 minutes they gave her back? Talking. Of course, it will be talking to those of us that have already learned to understand her broken dialect, not to someone who knows how to repair it. That is the thing. We must be doing something completely wrong in this aspect and the right answer, therapy or ‘magic answer’ has not revealed itself to us yet. And yes, I am still holding out hope for the magic.

I often think that is my only true job here as a mom is to keep hoping for magic and accept it in its smallest form. 

Tonight when I talked to Chris we discussed the changes that I have seen and he continued to be encouraged and hopeful as he acts as a distant cheerleader and moral support for the troops back home. I know he wants to be here to help and feels the weight of his conscience although I try to reassure him that we are all just fine here. The unexpected trip to the hospital made it much harder for him to step away this time but his journey is just as necessary as Juliana's and we want his success just as badly. We talked about the last blog and the reaction we have both seen to the dose of reality that was handed out. It just had to be said. This is a "story" to so many of you seeing the fairytale unfold as only reality TV can portray but for us it really is just our life.

The coolest thing about it is they didn’t have to make Chris more than he is. He legitimately cared my daughter from a coma to where she is today. No potential or speculated events of the future can take that away from him because he is a good man, he is a good friend and he is a good fiancé to my daughter. I feel I started a controversy for one more thing that may or may not be. I just want to make my views very clear.  I will always love Chris as a part of our family, just as I know he will always love Juliana. I suspect it’s all going to turn out like the fairytale we wish for but if it does not, he will be no less loved by me.