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

My two oldest children, Leila and Eddie, have had a unique relationship from the very beginning. Leila was 2 when we began the adoption process to bring Eddie home from Liberia. We prepped her tender heart during the entire process by talking about bringing a brother home, praying for him every night at bedtime, and we let her help us decorate his room. She even chose part of his name. He kept the name his birthparents gave him but Leila added to it from one of her favorite preschool songs that thankfully also happens to be my father’s name (remember, Eddie isn’t actually my son’s name).

FullSizeRender-5The time had finally arrived. So, we drove the 2 hours to the airport, stopping for a very special dinner at one of our favorite German restaurants as a last supper with Leila before her little brother arrived. Afterward, we checked into our hotel and headed to the airport. I brought lollipops to win him over because we had no idea how this was going to pan out -A little African boy just getting off the airplane and leaving the airport with strange white people who speak a language he doesn’t understand might cause a traumatic scene. You just never know.

9:00 pm…We were ready, waiting in the airport and thankfully there was a little play area to keep Leila occupied. So we waited and waited.

10:00 came and went.

10:30

Then 10:40…I started to panic as groups of people had come through from vacated flights and I didn’t see any blond 20-something young ladies with a little African child in the crowds. There was no way I could leave that airport without a brother for Leila!

11:00 pm…There! I saw the top of his head bobbing up and down as he tripped along through the terminal withe a blond haired young woman holding his hand. I just knew in a half second HE was my son. With a yelp and his lollipop clutched tight in my fist – I ran to my boy. I couldn’t have forced my feet to walk if I tried. I dropped to my knees and searched his dark eyes with long curling lashes. I unfurled the wrapper on his lollipop and offered it to him. I don’t remember what I said while I gently spoke, I just remember him. He spotted her as she approached and then Eddie limped a few quick steps to Leila, bent forward and threw his arms around her in a big awkward hug and he squeaked a big “Duh-Dah!!!!” right in her ear. Eddie embraced Leila first.


I wish I could say they just fell together into an easy exchange. That is for fairytales. They were two strangers thrown together with no common history, culture, or language whatsoever. Leila found it difficult to adjust to who Eddie really was. She had specific and as yet unmet expectations of him that he couldn’t deliver. She wanted Eddie to immediately be that confidante she could tell all her 3 year old secrets to. Well, he wasn’t that by any stretch – at first. He was a loud, rambunctious, energetic, wild clueless little boy of very few words or manners. His main goal those first 6 months was to eat everything in sight as he was horribly malnourished. But he was a lighthearted, happy guy just looking for a fun time.

img_4251We had to find a way to help them establish their relationship, so it was up to us to give them the tools to build it. I made it a point to have them engage in play activities they could do together successfully. I noticed that they both enjoyed water play – so they took an inexplicable number of baths together each day for a while. That was just in the beginning, of course.

Play is a universal language. This, I discovered while studying in India. I had the opportunity to play with a big group of children whose parents were migrant workers in Southern India – They taught us college students how to play their version of tag and we taught them how to give high-fives. I will never forget it – there was something about the fun that bridged an enormous language and cultural chasm. And this was the glue we used to fuse Leila and Eddie into a brother and sister. It was a long process that eventually worked but I think much of the success was due to the fact that mom and dad were involved in the play, facilitating the action. We could wean ourselves out, but our participation was crucial in the beginning stages. It is true what they say – the family that PLAYS together, STAYS together.

They needed each other. Leila taught Eddie some of the ropes of being a kid in the United States. He mimicked what she did and some of what she said while they played. Language was difficult for him, learning anything new at all was difficult and we couldn’t understand why (Much later on, we would discover that he had epilepsy and intellectual disability, which were stunting the learning process).

Through his joyful and charismatic nature, Eddie taught Leila how to have fun and how to be a lighthearted child. She was a somber, overly sensitive little girl holding the weight of the world on her tiny 3 year old shoulders (Now we know her mental health issues were probably gearing up even back then.) She needed someone to take the focus off herself.

FullSizeRender-2In time, Leila and Eddie developed an uncommon bond. They balanced each other’s needs because they were so different and each child had much to offer the other. It was sweet and it was fun to watch them. They could play together for hours and rarely came to find me, crying or fighting. They took care of each other. It wasn’t perfect but the strength in their relationship was such that even all the frustrations of Eddie’s learning difficulties were not enough to hinder their love for each other during this time.

After four years, it all but unraveled as Eddie’s epilepsy and Leila’s mental health problems collided…

For part 2 of this story, click here – Playing For Keeps – A brother and sister kind of story (part 2)