Thursday, November 1, 2018

Where I've Been

I looked out the window at the Cincinnati skyline and smiled at the beauty of it.  Dazed from thirty hours of travel with four kids, I felt a sudden surge of adrenaline pulse through my body:  we were moments from our final destination.  I heard the landing gear engage and my excitement intensified.  My adoption journey that started almost a decade ago quickly approached its finish line.  It was surreal.  I fought back tears as the flight attendant welcomed us home; I almost stood up and clapped as the captain expertly landed the plane.  A wave of joy and relief washed over me.  We were home.  We were complete.  We turned the last page of the adoption book of our family, closed it, clutched it to our chest, and in a final family hug, thanked God for all He had done to weave our lives together as one.

We stepped off of the plane, excited to open a new book, ready for the next adventure.  We had been living "On Hold" ever since Munni came home - it had taken a toll on everyone and all of us were excited for a new beginning.  

Two weeks after arriving home, I reached to put my laptop on the coffee table so I could get up to go to the bathroom.  I felt something in my back, not a pop, but something wasn't right and it hurt.  I told Roopa I thought I pulled a muscle.  It hurt all night.  The next day, it still hurt.  Wow.  I knew age affected things, but this was crazy.  I couldn't believe how bad my back was hurting.  And not only my back, but my hip, and a sharp pain that ran down the outside of my right thigh.  Then, a day or so later, as I was getting dressed, my hand rubbed against my right thigh as I pulled on my shorts.  Ew.  My leg felt like a stranger's leg.  My thigh was completely numb.  The pain continued to worsen.

I ended up completely out of commission, as in flat on my back for almost a week.  I couldn't sleep.  I couldn't drive for a month.  The pain of sitting and extending my foot on the gas pedal about put me through the roof.  This also coincided with the 8,325 hospital appointments we had for both Sonali and Mohini.  My mom had to drive us everywhere.  In addition, I couldn't lift, hold, or even have my girls sit on my lap because even the weight of them being on my lap, sent shooting pain in my back and deep into my hip.  

I saw a chiropractor who performed decompression therapy on me.  It provided minimal pain relief.  I went to urgent care because the pain was so bad.  The doctor said she would give me a steroid shot and a steroid pack.  On the verge of tears, I told her I had 4 kids.  She said she would give me 2 shots.      Finally, I was able to get in to a spine specialist.   First, I had to have X-Rays.  Then, there was a debacle with the pre-authorization for the MRI, so I lost three weeks of waiting.  At last, it got sorted out and I got my MRI last week.  The results came back and I have an annular fissure in my lumbar disc.  So that's fun.  I find out tomorrow what the plan of action will be.

While all of this was going on, more and more medical issues kept appearing with Sonali and reappearing with Mohini.  My vision and expectation of how I thought our life was going to look when we stepped off the plane was nothing like what we were living.  I cried every single day.  The worst part has been not being able to hold my kids, especially Sonali.  Imagine just having a baby and then not being able to hold your baby for almost 2 months.  Attachment and bonding are critical in adoption and physical touch is such a huge component to that equation.  On top of that, Roopa asks me daily when I'll be able to hold her again.  I struggle with this because she is growing so fast and I wonder if I'll ever be able to hold her again and that breaks my heart.

And then there's Mohini.  I had a total breakdown in the neurologist office.  I think it all just came tumbling out because the doctor was nice and I'd been in denial/avoidance for so long but now that Sonali is home and it's staring me smack in the face, it gutted me, right in the doctor's office.  It wasn't pretty, but thankfully, the neurologist was compassionate and the team at Cincinnati Children's is amazing.  I know we will get the resources Mohini needs - it's just overwhelming looking at the big picture.  We are looking at years of therapy.  And it frustrates me because I HATE trauma and all that trauma does and how it wraps its disgusting tentacles deep within their brains and hearts and affects their lives for years and years and years and I want to punch trauma in its face because I feel helpless and pissed and tired and frustrated and scared and sad because I love Mohini with all of my heart and I want her to be all that she can be.  Her medical issues alone are significant, but the consequences that trauma adds to her issues just makes everything a million times harder.

Almost everyone has heard of RAD -Reactive Attachment Disorder, when a child doesn't establish healthy attachment with parents or caregivers.  Another lesser known attachment disorder is the one we are fighting: Disinhibited Social Engagement Disorder.  We became hermits because of this.  It's exhausting explaining why I parent the way I do and why it's not "just normal toddler behavior" when Mohini does the things she does.  People wouldn't respect the boundaries I asked, so we stayed home or stopped visiting.  I had to put her in the carrier to help eliminate some of her behavior, but then she got too heavy for that and I got too frustrated.  I grew resentful.  Our life changed dramatically and where we once were able to come and go freely and enjoy parks, the zoo, museums, basically anywhere outside of our house, suddenly became major anxiety points for me.  She has no stranger danger.  She would literally go home with the mailman.  She thinks every adult is a safe adult.  She doesn't cry when I leave.  She wanders away with no fear at all and never, ever panics.  If I let go of Mohini's hand for one second, she would be hugging a stranger's leg, or grabbing another's woman's hand, or hugging a random man - lightning fast.  She's freaking adorable so everyone thought is was soooo cute and smiled and laughed, which only encouraged her behavior.  The whole time I have to say it's completely unhealthy, run through my script, please don't touch my child, she doesn't know what a mom is, blah blah blah, the faces drop, the looks turn and I can see their thoughts running across their face... I'm the crazy one.  But they don't know.  They don't see it every. single. day. and every. single. place. that we go.  So, we stayed home for basically an entire year.  I tried everything the therapist told me to do.  I prepped her before we left the car:  "Mohini, we don't talk to people who aren't our family.  We don't touch people who aren't our family, Ok?"
She'd smile and say, "Okay."
And then, we'd go into whatever establishment and it was as if the conversation never took place in the car.  I'd remind her, "Remember?  We don't talk to people.  We only talk to Munni, Roopa, and Mommy."
Big smile - "Sorry, Mommy."
Walk three steps and she's talking to random man, reaching out trying to touch his arm.  She's adorable and so he responds to adorable baby reaching out to him and touches her back.  The cycle continues.   These are just small examples.  You can google the effects of DSED as children get older, it's not good.  That's why I'm busting my tail trying to lay the foundation for her to have healthy attachments now.

Sonali has been home two months.   Seeing her attachment compared to Mohini after being home a year and half is startling; hence the breakdown in the neurologist office.  Thankfully, we managed to get in for an assessment with the Division of Developmental and Behavioral Pediatrics (DDBP) at the autism center in a few weeks.  Normally, it's a 6 month wait.  They don't think that she has autism, but because of her brain injury, and being an institutionalized child, a lot of her individual behaviors are somewhat autistic in nature.  The neurologist thought it would be a good "home" for us because of the amount of resources available.  We were also assigned a Developmental Pediatrician.  In addition, she starts speech therapy next week.

My back injury occurred on September 6th.  When I stepped off the plane at the end of August, I truly thought we were home free.  I was giddy with joy.  We had been dreaming of all the fun things we wanted to pursue this year.   Funny how things change.  Instead, I found myself in convalescence.  Basically, a decade of stress and anxiety came crashing down and literally took me out.  There were many days were I wondered if I was ever not going to be in pain and it scared me.  I have a new compassion for those who live with chronic pain.  It messed with my mental state big time.  I read my bible and found solace in the story of Elijah.

He had just come off of two major spiritual victories - and then ran 6 miles back to town to make sure the correct story was told.  But when he got there, his public enemy number #1 aka Jezebel, had a little warm welcome note waiting for him.  It went something like this:

I'm gonna kill you.  

That was enough for Elijah, who dipped and bounced to the desert.  He ran for his life, terrified.  Exhausted, he sat under a Juniper tree and told God to just let him die, there was nothing left for him to do and that he was no better than his ancestors.  Then he fell asleep.

I thought about my adoption journeys.  When I was in process, there is an adrenaline and energy to get you to the finish line.  God performs so many miracles, a community rises up beside you, it's like a tidal wave that pushes you forward.  And there's a beautiful face in front of you - keeping you focused, prayerful every day, fighting the battle.  The climax comes when you finally arrive in country and wrap your arms around the child for whom you've prayed, cried, dreamed, loved for months and months.  The title orphan is exchanged for daughter and that child is grafted into your family forever.  It is the sweetest victory.  But then you get home and real life sets in and all the demands and medical needs and stresses and attachment issues and sibling issues and behavioral problems and resentment and doubt and fear and sadness and questioning and I'm sitting under that Juniper tree feeling afraid when I think about all that we are facing.

An angel comes and wakes Elijah and tells him to eat.  He looks and sees bread and water so he eats and falls back asleep.  A little while later, the angel touches him again to wake him and tells him to eat or else the journey ahead will be too much for him.

I was reading a devotional about thankfulness.  It talked about learning to take every single circumstance and thank God for something about it - to look for the good that He can bring from it.  It's been challenging, but I have to say shifting my perspective to that has been a great lesson for me.  I thanked God for my back injury because it forced me to rest.  It forced me to slow down.  It forced me to be present with my girls in ways I normally wouldn't have been.  It forced me to humble myself and ask for help.  It provided opportunity to spend more time with my mom.  I made three new friends who have ministered to me and my family in the sweetest ways.  I think about my journey ahead, and I see how He has provided sustenance for me while I rest and prepare.  Part of that meant pulling back and circling tighter.  He sifted some relationships and brought me new ones.  We are idling in first gear, waiting for the moment we have the healing to pick up speed and shift gears.  Until then, we are going to continue to slowly inch forward.





1 comment:

  1. That is a lot! I appreciate your candidness and authenticity. God brought each of these girls to you without any doubt. And he will also provide the emotional and financial means to raise them! Praying with you for God’s leading in each step you take. ❤️

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