Playing For Keeps – A brother and sister kind of story (part 2)

 For the first half of this story, click here:

 Playing For Keeps -A brother and sister kind of story (part 1)

Over the course of 4 years, Leila and Eddie shared a sweet bond that I rarely see in other siblings, including my own sibling relationship growing up. They were siblings and  more importantly, they had become friends who enjoyed playing together. Water gun fights, nerf wars, board games, video games – We had so much fun as a family! When the going gets tough, get out and play together. And let’s be real, when you are a frustrated parent, there is NOTHING more therapeutic than spraying your kid in the face with the garden hose. I just saved you a $125 counseling session – you’re welcome.

One summer, Eddie’s behavior started turning violent, panicked and bizarre. To the point where I had to sit on him in order to keep him from tearing his room or his things apart. After too many bruises on my body, exhaustion at the overwhelming task and ultimately exasperation, I took him to the pediatrician. She referred us to a neurologist. We did the obligatory EEG during our 6 week wait to get an appointment and I knew as I watched his face in the flashing lights that something was VERY VERY wrong. I got a call from the pediatrician’s office a few days later and they gently told me that the EEG had recorded seizure activity. My stomach dropped, and once I hung up, I bawled my eyes out. The first thing to hit me was guilt. All the times he had gotten in trouble and he it hadn’t even been his fault. Then, I had to call my husband and break the news. It was too much to bear for quite a while.

img_0610So from there began the hospital stays, emergency room visits, the therapies, the counseling, more testing. And all the while, Leila was watching her brother as his medical needs took over our lives. All the focus and attention surrounded him. And it impacted her, deeply. It is the nature of having a child with a medical condition. She did her homework in clinics, waiting rooms, hospital rooms, at friends’ houses, at relatives’ houses…. everywhere but where she should have been – in the comfort of our dining room. It took it’s toll on her. Over time she became resentful and craved more of our attention and I remember telling her how sorry I was that this was our new normal. When one person is affected by special needs, the whole family is impacted one way or another.

Sometime during these initial months of his epilepsy diagnosis, Leila had her first psychotic break. I won’t give any details as to what that looked like but it changed her completely. And her brain manufactured its own paranoid reality. I searched desperately for help for her. Someone, anyone who would diagnose and treat what I knew was mental illness. Instead, I found counselors who told me she just needed to be loved and valued. No psychiatrist in the area was taking new patients. No one. No help. Nowhere to turn. I finally found a therapist just out of college to take her as client. She saw what Leila’s diagnoses should have been back then…the same ones she actually has today. So Leila saw her regularly for 18 months and it helped very little since you can’t reason with psychosis – It just doesn’t counsel without medication keeping it under control or at bay. So, her brain began developing terrible behavior and thought patterns that did incredible damage that will take years for her to overcome.

Her brain decided that Eddie was doing everything he could to steal attention away from her and to get her into trouble. Her mind turned him into a villain. And the collision of each child’s special needs with the other derailed their entire relationship. I could not convince her of anything different than what her brain perceived. Play couldn’t fix this…yet.


Fast forward another 4 to 5 years – Eddie’s epilepsy has disappeared. Leila is living in another state getting mental health care and is finally properly diagnosed and in treatment. Both children have come out of a living hell. So have their parents!  She came home for a mid-winter break last week and I saw a Leila I hadn’t seen in years. She is happy, she is playful, she is loving. But her brain still believes that Eddie is her enemy. Although, it isn’t as bad as it once was, this relationship needed fixing. Time to retrain some messed up neural pathways that won’t just heal on their own and it was the perfect opportunity to start!

So what did we do? Why, we played of course! We started over, from the basics. We made sure to engage in activities that we knew both kids enjoy. As tweens/teens their “fun” has changed but not too much:

Let’s go hike our favorite trail and hit up our favorite greasy burger joint afterward…

Leila and Eddie, why don’t you two go play Legos while Sue is napping…

Sure, you guys can play video games together for an hour….

Leila, you need to just sit next to your brother for the car ride home. He won’t bite…

Both of you please just go outside and play with your little sister in the backyard…

Guys, go put on your nice clothes, you and dad are going on a date to a posh sushi joint…

FullSizeRender-2…and for the first time in years, I heard them belly-laughing and they were enjoying each other just like they used to. I did have to convince (force, push, insist) Leila to engage, but once she did… it was like old times. I didn’t think the fun would ever happen again. The damage felt irreparable at the time. But they are remembering that hey, he/she isn’t so bad after all! They are loving each other again. There will be bumps ahead, but as long as we can keep her mental state healthy, it’s nothing a little playtime can’t fix.

I stood at the window the last half hour before it was time to take Leila to the airport as all three kids screamed with laughter. I couldn’t take my eyes off the little bit of heaven I was seeing and grateful tears stung my eyes. But it felt so good. This time, we didn’t want her to leave. So this summer, bring on the water guns!

 

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