Forgiveness: Layla’s Story Re-written

This story starts with a virus and ends with forgiveness.

{And it is told with her permission.}

It is unbelievable, but the largest culprit for my daughter’s mental health decline was a little virus called Cytomegalovirus (CMV). My best guess is that she contracted it while her worn out little 8 year old body was busy fighting repeated strep and tonsillitis infections. Evidently, it sat in her system and waged war on her body and brain for the last 5-6 years. We spent all this time searching for therapy, medications, genetics…anything to explain why a seemingly healthy child could slide into a mental health decline so severe, so unpredictable, so out of control that it destroyed much of her life. The answer was deceptively simple yet so difficult to find. Because no one was looking for it.

One of the complications of CMV is that if it sits in your body long enough, it can cause encephalitis or brain inflammation. We took her to a special clinic after too many doctors were unable to help her. Her brain scan was lit up like fireworks, nothing but red. After 3 rounds of tests including about 40 vials of blood, we discovered CMV. Brain inflammation can look like severe depression, delusional thoughts, and psychotic episodes, and it feels like out of control schizophrenia. She had every psychiatric symptom known to man. She had no control over her thoughts or moods, how she perceived the world, and how she destroyed the friends and the relationships she had. This is how she suffered for years.

We immediately put her on an anti-viral medication and immune support supplements. For a week, she vacillated between psychotic episodes and totally happy go lucky, sweet Layla. Then, on a Wednesday, after all these years, all of the worst symptoms she has ever experienced just completely vanished. We haven’t seen them since that Wednesday. We have our beautiful, sweet, loving child back. But it’s like she has been living on Mars for 6 years and has suddenly transported back to earth — the world she knew is in shambles.

img_4251

As I said before, her relationships have suffered. Her family has suffered. Many of her childhood friends are gone. And the one person she held closest to her has distanced himself completely – her little brother, Eddie. When they were small, they were the best of friends and had the sweetest relationship I have ever seen. Epilepsy and CMV destroyed all the good.

This did not go unnoticed by their mother, of course. It was Easter morning, Eddie and I were driving to church when I brought it up to him. “You seem like you are bitter and angry toward your sister. Are you having a hard time getting along with her?” He sat there very quiet. So I continued, “It seems to me that you are having a difficult time forgiving her for all the times she has hurt you. That is a very hard thing to do. But you need to realize, even if you thought she was doing it on purpose…she really wasn’t. Remember when you had seizures and it made you do all kinds of weird stuff you didn’t have any control over?” He nods his head yes. “Well, it is the same with Layla. Her brain had so much inflammation, like it was running a fever. It put words in her mouth, ideas in her head, and made her do things that she would NEVER do if her brain was healthy. She didn’t know what she was doing.”

So we talked about how hanging on to his anger will hurt her but more importantly, it will turn into bitterness inside him. And bitterness will make him nasty. We talked about how to forgive her, how to let it go. When we are unforgiving, it is like we have chained stinking, rotting garbage to ourselves.

“But I don’t know how…” he says.

It’s Easter, for crying out loud, so I ask him: what did Jesus do on the cross and what happened on the 3rd day? What was it for? Ultimately, forgiveness of our imperfections so we can have a loving relationship with a perfect God. If God can forgive Eddie, Layla and Mom of everything, then we need to forgive Layla for the things she didn’t know she was doing. Once, a pastor of ours said that when we can’t do it on our own, we need to ask God and borrow some of his forgiveness. So we can look at Layla and let go of the parts that hurt, so we don’t hang on to it like rotten garbage and we don’t hold it against her.

FullSizeRender-2

 

After church that day, we sat down together as a family. Eddie wrote down what he couldn’t say out loud to his sister, “I am having hard time letting go being angry at you. Forgive me.” It never occurred to me that he would think to ask her for forgiveness, but I think he was right in doing so. Their relationship is still restoring itself, and it will take time but the hardest part is over. And my guess is that he will have to go through the process of forgiving more than a few times in the coming months and years. He will have to choose forgiveness and fight against bitterness.

 

Now Layla has to learn to forgive herself for the things she had no control over. And for the things she did have control over. She has to learn to receive forgiveness from the people around her who love her, who cannot and will not hold these things against her. Once she is able to grab ahold of it with both hands will she truly heal inside her heart. Forgiveness is a gift. And with this gift, she can rebuild her life. She can be the friend, the daughter, the sister, the young woman God created her to be. This road began with a virus, but it ends with forgiveness. The riches she has to glean from this experience are yet to be uncovered. There is power in her story if she can hold on tightly to forgiveness and faith – it can work for the good (Romans 8:28). Our stories can always be re-written like it says in Isaiah 61:3 ~

…for Layla, who has grieved in Zion—
to bestow on her a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,pexels-photo-235615.jpeg
and a garment of praise
    instead of a spirit of despair.
Layla will be called an oak of righteousness,
    a planting of the Lord
    for the display of his splendor.                                                                                                            

 

 

Advertisements

A Steady Kind of Hope

They say if you are sea sick, to look out toward the horizon. Or perhaps, focus your gaze out at one stationary spot as your boat bobs atop the waves. That is great advice for someone who only suffers a little upset stomach. But if you are truly SICK from the motion of the ocean, you are in the fetal position in the bottom of the boat, eyes glued shut in misery, just surviving from moment to moment. I know the difference only because while whale watching a few years back, I was the person who still had the wherewithal to look out at that horizon while my son, Eddie, was rendered immobile in the bottom of the boat when epilepsy still racked his brain and vestibular system.

 

They say to “trust the Lord” and to put your “hope in the Lord” when life tosses you around in a similar way. But what is usually meant when kind people say these things is “Trust in miracles, pray for healing, believe that God will make it better.” Some of us know all too well that when you are in the bottom of the boat, these are false hopes.

Over the last 10 years, my view has changed about the idea of HOPE. Because children have epilepsy and are never cured. People get cancer, receive excellent medical treatment, they are prayed over diligently and still, they die. Families are torn apart by mental illness despite their best efforts and most heartfelt pleas to God. Does this make God cruel and heartless when it seems like he doesn’t hear or answer our prayers? I don’t believe so. I believe that He is good, even if life’s circumstances aren’t. He never changes. There are so many things I don’t understand about the mess of chronic illness in the lives of people.

pexels-photo-1006170.jpeg

But one thing I do know: God is more concerned about healing our hearts than he is about healing our bodies. Too often, well meaning people want to hope and pray away sickness and never understand that there is something to be gained in  knowing God and his heart for us both in sickness and in health. Since we have grown accustomed to engineering our prayers around avoiding suffering or struggle, there are things about him and there are things about ourselves that we never learn.

I let myself stay stuck in the bottom of the boat for a long time. There have been wonderful times when the waves died down a bit, and my husband and I could breathe and look out again at a clear horizon. But inevitably, storms churn up and we find ourselves holding onto each other for dear life. I know that numb feeling of hopelessness, dead ends. A parent who watches their children suffer over the course of years with little reprieve, is clinging to primal prayers. At times, that was all I had. That andfistfuls of anger when I was constantly let down. But while parents do everything in their power to help their child from a medical standpoint, there are no guarantees and most often the miracle prayed for never come. When you are in the thick of it, you just have to keep your head down and get through the day, get to the next appointment, soothe the child, make dinner, etc.

 

When you live with chronic illness in your family, you can’t afford to hang your hope on getting better. Most often, very little in your circumstances will change. Sometimes they do and bless that wonderful day, but you can’t live inside that hope, or what I now consider hope as “Wishful Thinking.” No, that will not do at all. You have to live and cope within your current reality. I made the mistake of hanging my hopes on every new doctor, therapy, medication only to be grossly disappointed – a feeling akin to being kicked in the stomach. You become a yoyo with your hopes set so low and set upon transient things. You are the person stuck in the fetal position in the bottom of the boat, faith and emotions tossed around on careless waves. Would I change what I did to help my children? Absolutely not – But I would have done it with a major paradigm shift.

pexels-photo-811440.jpeg

We have this hope as an anchor for the soul, firm and secure (Hebrews 6:19)….

….this God who is an anchor for the soul, He is that stationary object on the horizon…He alone is hope. It took years to fully realize that when I used to say my “hope is in the Lord,” I really had a bunch of wishful and hoped-for contingencies attached to that phrase. My focus became healing my kids instead of knowing God. But here, in this place, I can peek out of the boat (while I white-knuckle it’s splintery side). I can’t be a good parent, nurturing brain-sick children while hanging my hopes and prayers on nothing more that wishful thinking. I don’t have a choice if I want to be strong and resolute for their sake. I can stand firm even as the world around me crumbles. Maybe when my faith is perfected, I will stand up in the boat, get out and walk on the water toward that setting sun. For now, to be a solid parental force, loving my children through extreme circumstances, my focus has to be that Unwavering Presence on my Great Horizon, simply remembering daily:

“He will go before you and will level the mountains; He will break down gates of bronze and cut through bars of iron. He will give you hidden treasures, riches stored in secret places, so that you may know that He is the LORD, the God of Israel, who summons you by name.” (Isaiah 45:2-3)

 

 

 

“Healing my Spinning Head” – Layla Explains Her New Road to Recovery

My name is Layla, I am thirteen years old, and I was born with a genetic mutation (COMT) that causes adrenal dysfunction and two genetic mutations (MTHFR) that don’t allow my brain to get rid of neurotoxins so they build up in my system. My symptoms make it look like I have extreme mental health disorders, but I truly don’t. Psychiatric medicine did not and may not help me. But we didn’t know this until I went to see a naturopath doctor this summer. I have been to a lot of doctors and no one could help me.  They just gave me lots of pills but I didn’t get better. Here is what it felt like for me when my head would start spinning:

I start to fidget, by constantly poking people or cracking my knuckles or even pulling out my eyelashes. I drive my family insane when I do things like this; but I HAVE to do things like that. I can’t help it, I can’t make it stop. 

That’s just the beginning. I begin to pick fights or accuse people of weird things they would never do, but I believe that they did. I can’t take “no” for an answer if I want something when my head starts spinning. If they do say no, I get extremely upset. My parents could say no to a treat, or no to a friend coming over because we are too busy. They could tell me to clean my room. But no matter what, it would just escalate from there and turn into a screaming match. My parents wouldn’t do anything right, according to me. There would be ‘I hate you’s,’ suicidal thoughts, cussing, and even violence. Sometimes, my parents had to sit on me so I wouldn’t hurt them or myself. All because I couldn’t eat chocolate ice cream.

My parents would be able to calm me down for a little while, but the ‘cycle’ would start back up again in either the next few minutes or the next day. No matter what, I had to get this fight in me, out. The longer I held it in, the more mean and intense the next fight would be, on my part. I would fight and scream for hours on end, to the point of  making my younger siblings cry…afraid, in their rooms. 

Of course, I would feel a little remorse after I had exploded and finished, but it would always happen again the next day. I hated it. I hated ripping my family apart like that. But fighting that way, always made me feel better after I got it out of my system.

There were a few years there where I felt like I would never get help. All the doctors and therapists I went to didn’t help me. I even moved away to live somewhere else to get mental health treatment. Those doctors re-diagnosed me with a bunch of psychiatric disorders but they were all wrong. I came home and was just as bad off as when I left. I felt pretty hopeless. I would never fit in with my friends. I would rip my family to shreds, not literally. I love my family, and I hated myself. I still do sometimes, but its getting better.

IMG_6603

Know why?

We decided to try something different since regular doctors weren’t helping. One of my family members mentioned a naturopathic doctor to my mother. My mom agreed and was excited to try it out. I felt like nothing could help me, but I decided to try just one more thing. If this naturopathic doctor didn’t help, I don’t know what I would do. I did food allergy tests, a genetic test, and cortisol test. Weeks later, we got our results.

We discovered that I have severely low cortisol levels, so bad I couldn’t even see the little line on the graph. My genetic testing told us about the genetic mutations (COMT & MTHFR) that explain all of my symptoms. I have to eat a special diet, take lots of folate, and I take natural remedies to raise my cortisol levels. So, when I eat a hot dog, it has so many chemicals such as nitrate in it that I go insane and have another fight with my parents BECAUSE OF THE FOOD THAT I ATE. If my cortisol is too low, my body tries to kick itself into fight or flight so that I can get the cortisol flow that I need to be able to think and go about my day.

But now, things are changing. I feel so much better than I have in a very very long time. I am almost off of all those strong pills that the psychiatrists wanted me to take that didn’t help. I don’t really need them! I don’t have psychiatric problems, I have what my mom says are metabolic problems and physical reasons for those problems. Those things are getting fixed and I am getting better.

I am telling my story because I feel like if parents and even other adults read this, it can inspire them to try out different things to help their kids and/or themselves, and never lose hope. Maybe they have a genetic reason why they are depressed or anxious or have other mental health problems that medicine doesn’t help.

Never lose hope.

There are answers out there.

Sometimes you have to look in new places and you find answers you don’t expect.

-Layla


For more information on MTHFR mutations below is a free resource on Amazon:

I Can’t “DO” Foster Care Without Getting Attached

I could never do foster care because I would get too attached and I couldn’t give them back…” I hear this statement all the time. And guess what? I feel the same way – I can’t take children into my home, pour my heart and soul into their care and not get attached, either. My heart is torn up every. single. time.

After we adopted our foster daughter Sue to be ours forever, we decided to try a different kind of foster care called Receiving Care. This means we get a call any time of the day or night to take children who need immediate safety from an unsafe situation. We took our first sibling set as a Receiving Care Home on Cinco de Mayo. I was sitting in a PTA meeting when my phone rang and our case manager said, “Hey, I know this is totally a long shot, but could you take 2 little Guatemalan girls? They don’t speak English but…” I interrupted her and immediately said yes. Of course I can take 2 little girls who don’t speak English….when we adopted our son, Eddie from West Africa, he didn’t speak English either. Plus, I knew I could communicate with them using rudimentary Spanish.

At 10:30 that night, I opened my front door to two scared, exhausted little girls. I spoke softly in my rusty Spanish and urged each girl into the pajamas I had just picked up at Fred Meyer, guessing at their sizes just an hour or so before. I determined I would not put the oldest girl to bed until I could get her to relax and crack a smile. So, I let her pick a Disney Princess Movie. She chose Frozen and we watched Olaf in Spanish. Within a half hour, I was tickling her and commenting on silly Olaf and she visibly relaxed and started giggling. We gathered up the girls and put them to bed in the room they share right next to mine.

Every night since that first one, as I tuck Big Girl into bed (or when she is upset because she is going to time out) she recites the same mantra in grammatically incorrect Spanish (since Mam is her first language, a Mayan dialect) – “You go to sleep with your mom. You go to sleep with your dad. They are going to sleep. You sleep with your sister. She is going to sleep too.” Over and over and over.

Now and then I hear her thrashing in the night, crying out in a nightmare. Her nightmare is real. For now, she is safe but she is far from all that is familiar to her. She kicks, she cries half awake, half asleep and screams “No! No! No! Stop it!!!!” Or she cries out for my husband to help her. And I cry a little too. She has discovered that he is safe. He takes care of her and shows her fun things like Mariner’s Baseball games, or they kick around the soccer ball. But most importantly, he lets her climb all over him with her sister and smother him with their intense need to be loved.

The girls fall in line with my children, and call us “Mama” and “Daddy.” They learned that despite what their parents believe, water in the United States will not make you sick or run a fever. Baths and spray parks are loads of fun. When they first took a bath, you would have thought I was pouring fire all over their bodies. But now, the Big Girl has learned to wash herself while I wash her loooong beautiful black hair, and she inhales deep from her belly, taking in the aroma of the delicious soaps. Her favorite is the blackberry vanilla. We have watched a million Disney movies in Spanish. We have taken walks to the market for treats, yellow or green Petit Fours are Big Girl’s favorite. She wore tennis shoes and rode an escalator for the first time with us. Big Girl loves the PB& J sandwiches I put in her lunch every day. Only my home-made raspberry jam will do. Little Girl pats my back as I burp her after each bottle. She squats like a sumo wrestler when she wants to run to me and gives me a goofy grunt, “oo” and when I catch her, she sniffs me like a little puppy to be silly and then sticks out her lips, awaiting a little kiss. And when I drop Big Girl off at school she reaches up to peck my cheek, giggles and hops off for the day.

So much GOOD and so much HARD has happened in just over 30 days.

FullSizeRender (20)

Their time to leave is upon us this very week, I am feeling the sadness start to creep into the corners of my heart. I don’t know what the courts will decide on Thursday – to send them home or to keep them in the foster care system and I will send them off to another family? Either way, I have no idea what life has in store for these precious girls. They have come a long way in such a short time. And I can’t tell Big Girl that she is leaving yet, because there is nothing to tell her. If I don’t know where she will go, I can’t say, “You are leaving but I don’t know what happens next” to a 7 year old who has the emotional capacity of a preschooler. So, I have to let her live in a fractured bliss until I do know.

So no, I can’t do foster care and without getting attached. I don’t like “giving them back.” I am already beginning to grieve their departure, even though in some ways, since I am tired from lots of sleepless nights, I will be a little relieved. But, why should I protect my feelings when these little ones need someone to care for them, keep them safe, and speak on their behalf? Foster care isn’t for everyone, that is sure. And that is perfectly ok.

But if I said “no” to these sweet little girls, they may have found themselves sleeping in a DSHS office, a hotel room, or in a social worker’s car while driving the night away on I-5 tonight. Foster care is difficult but it isn’t nearly as difficult for me as life is for a child who has no one to care for them.

So, why not say “yes?”

 

Mothering Epilepsy – An Isaiah 58 moment

October 2013 – The good days feel as though you are reliving the best day of your life all over again. And the gratitude is so strong and the love so deep, they dwarf the shadowy fear riding your back on the hard days. There is so much that is uncertain with epilepsy. I fumble each day trying to figure out this ride. Or, how to walk in it with grace and genuine acceptance.

You never know when seizures will hit, how bad they will be, or how long your little boy will be down for the count. It is our dear friends’ wedding day. Everyone in my family plays a role in the beautiful ceremony except for me. Two hours before the guests arrive to witness the sacred event, Eddie is clobbered with a seizure. Acquaintances watch as my son’s head lurches, his arms convulse and his neck stiffens. But that isn’t the scariest part. It is the look — the desperate, wild VACANCY in his eyes. And we watch as these electrical mis-firings in his brain steal my happy vivacious son away for the afternoon. He lingers in a partially catatonic state for 2 hours. His brain exhausted in every sense of the word.

He will never remember how I walked with him around the beautiful acreage of this quaint ranch in Tucson. He won’t know how the poor photographer couldn’t get MY joyous, smily son to just smile for the camera. Or how I crushed him to my chest, trying to coax his mind and body back into the land of the living. He won’t remember that I rocked him as he made whimpering noises, soft and so terrifyingly primal. Or how I quietly begged him to please wake up and give us a smile. I have rarely felt so helpless in my life as in these moments.

But suddenly, just minutes before the ceremony begins, Eddie wakes up! And he is ready to GO and he plows down the aisle when it is his turn, set on his mission to announce that the beautiful bride is coming. Hooray! And my relief is a cascade – We haven’t let our dear friends down on their special day.

FullSizeRender
Looking up from the dance floor

Eddie sits in my lap as the ceremony continues. I look down at him and I see all the smiles I had begged for while he was gone beaming from his exuberant face. I think of Buddy the Elf and how he can’t stop smiling because smiling is his favorite! And all these goofy grins are meant only for me. He is happy to see me again. Like I am some long lost friend he hasn’t seen in years. It is a bittersweet feeling to have him looking at me like that, when I was here trying to bring him back all along. And he doesn’t remember. And somewhere in the ceremony, the singer begins a song I know well and have sung often:

There is nothing worth more / That will ever come close / Nothing can compare / You’re our Living Hope / Your Presence / I’ve tasted and seen / Of the sweetest of loves / Where my heart becomes free / And my shame is undone / Your presence Lord

As the music and the lyrics poured over me, my loving and happy son wouldn’t take his smile off me. I was encased in such innocent, devoted love rising up from him and flowing down from above. Scripture says in the Old Testament that God inhabits our praise and literally hovers over our corporate worship. That imagery has stuck with me. and I sensed it in this moment. I whispered the words and felt them in my bones. My “why’s?” were silenced while I sat overwhelmed in Living Hope. We haven’t been forgotten. It is probably the most tender moment of my entire motherhood, borne out of desperation. Long after the song ended, my sweet boy continued to smile into my face. As though he was telling me that he heard my pleas while he had been away. The ceremony ended, dinner plates filled, and dancing began. And with that, we lost him again. We made our way to the Emergency Room with too many violent seizures increasing in frequency that day. Our joy-filled moment had ended.

But now I see.

I must simply mother him the best I can. I will try not to complain or glorify the inevitable suffering this brings to him and to us. I am chosen to love him and speak on his behalf. To mother him in place of the woman who no longer can. I am going to keep trying as hard as I can. And love more than I really know how. I would never have chosen this and I still ache for it to just go away. Even so, I choose to live by Isaiah 58 and tattoo it to my body so I never forget my end of this covenant that took place in my heart at someone else’s wedding:

If you do away with the yoke of oppression, with the pointing finger and malicious talk, and if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday. The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. V. 10-12

IMG_0562
I had Isaiah 58 forever inscribed into my arm during the Fall of 2013 to remind me of what God has taught me in the midst of mothering epilepsy

 After some very dark and uncertain years,  challenging my faith as I white-knuckled the promises of Isaiah 58…Eddie has been seizure free for over 2 years and he no longer has the epilepsy diagnosis. Miracles do happen.

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!

 

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)