Recovering from NICU trauma

 It's early morning and he starts to shift from side to side looking for me, but some how he's ended up on the other edge of the bed.  I scoot towards him and slide him towards me.  He rubs his nose and I know that means he's hungry.  I place him close to me and let him nurse.  He's still asleep, but he nurses diligently.  He always nurses every hour in the morning, when he dreams and tosses about from side to side. 

This morning I'm awake, reading amazing blogs and wishing I could write half as well.  I watch his face as he bursts into laughter.  He's having a fun dream.  I'm so glad!  I remember the early months when he used to cry in his sleep.  It used to break my heart.  It still breaks my heart.  I wondered if he was dreaming about his NICU stay...about the times when I wasn't there...when they were holding him down to poke his spine 12 times...unsuccessfully.

I remember when the APRN told me how odd it was that no one was able to extract spinal fluid from him.  She was so distracted by her failure, but I was distracted by how many times these people hurt my baby to satisfy their type A need to succeed...only to fail anyway!  I was also mad that they decided to poke my baby twelve times, without telling me.  They risked paralyzingly my baby twelve times without informing his mother.  Why does the mother have to know anyway? 

But I'm afraid to say anything.  I'm afraid my anger and fear will be labeled as difficult mother and it will negatively affect the way his nurses treat him...especially when I'm not around.  So I smile, brokenly, but she doesn't notice, she is still amazed by her first failure in eleven years.  I try not to imagine how many people held him down...because I believe you have to lay on your side or hunched over in a sitting position.  I try not to visualize it in my head.  I must stay strong.  I must stay strong.  My baby needs me. 

When I finally bring him home, he starts having crying dreams.  He doesn't always wake up.  Huge tears roll down his face as he struggles to move.  I had a hard time moving after the c-section.  It was so hard to get him out of the bassinet.  It felt like an eternity passed while I struggled to bring him next to me.  I guess this is the hard part of being a single mother.  There's no one else to bring him to me.  After a couple weeks, I leave him on my bed.  It's so much easier.  I barely wake up to nurse him.  Then when he cries, I pull him closer and nestle him in my arms.  He seems happier, more settled. 

He's 13 months old now.  He's such a toddler already, threatening to be independent tomorrow.  He rarely cries in his sleep now.  He mostly cries from frustration when he falls.  He lets me comfort him, but he avoids eye contact.  He doesn't want to be embarrassed.  He's such a happy boy!  He loves playing hide an seek...he can really squeal when he finds me around the corner.  Sometimes he waits after I've gone around the corner as he revels in the anticipation!  Then he practically runs, squealing with flailing limbs, almost hitting whatever is in his way, while staring at my face.  I just love to see the pure joy in his face!

I am so grateful to be here!  I am so ecstatic that we are doing so well!  I know there is more therapy and more struggles to come, but I feel more confident today than a year ago.  Maybe I can do this motherhood thing after all!  Maybe I'm strong enough, smart enough, and good enough to be his mother.  I do know one thing for sure.  I love this kid more than I have ever loved anyone before.  I feel so connected to him...whole body, heart, and soul!

Metamorphosing into a mother

Metamorphosing from child to adult has been excruciating.  The stench from the rotting cocoon fills my nose and reminds me of my journey to this place.  The place where healing finally begins and the past can finally be burned into ashes.  Even the ashes must be set free into the wild ocean, for the tame ground of my soul is too tender for its teeth.  The scars are still healing and sometimes they burst open revealing the puss that must be extricated and thrown into the acid of no return.

This is just the beginning.  This is just the beginning of washing the stain of my pain.  The stain that tried to tattoo itself to my heart and body.  It won't be a short journey.  It's already lasted 39 years.  Many things have changed during that time, but the pain is always the same.  It started with my reluctant birth into a world where I was not wanted.  Into a world, where my presence burdened two broken beings together.

The healing began when I birthed another being.  One I had not expected.  One I didn't know I could mother into human form.  Then a lightening stroke broke open a wound in his brain and my mothering instincts pressed the pedal to the metal and a mother was born.  She is fierce.  She is capable.  She is trying to transform my broken form into the woman I need to be.  The kind of woman that becomes the mother of a strong man, without a man.

At the climax of all that could go wrong, a gift was given.  A gift I could not refuse, even when I thought it would be best.  I found my passion in loving a little form that clarifies my understanding of unconditional love.  I found that after all, I was meant to be a mother.  After all, I was meant to be his mother.

2 months old

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Streaming thoughts of a special needs mom

barely 1 month old

 Today my muscles ache from deep inside, where knots have lived for years.  He needed to be worn all day.  He didn't want to get down.  My muscles screamed, but I ignored they're incessant complaints.  They always hurt, a little rest won't stop that pain. 

When I put him down to eat, he fell.  When I turned away to get something, he slipped.  His body is not cooperating today.  His right foot seems to be lagging behind when he's cruising.  He almost face planted on the activity table.  Is this because we didn't do the Masgutova Treatment Method today?  Can we not skip one day of therapy?  No I guess we can't skip therapy.
 
Sometimes it's hard being a therapist and mom.  Sometimes I wish I didn't know so much about the body and effects of a stroke.  I don't know if I worry more than the average special needs mom, but I worry.  I worry even when things seem to be great.  I worry more when I see him struggle.  I can see the difference when he's having an off day.  I guess I'm not that great on my off days either.  I guess I'm having an off day.

When he cries, it's heartbreaking.  He doesn't cry often, so when he cries it feels like something is horribly wrong.  Did that fall hurt his brain more?  Is that why he's screaming?  No.  He didn't lose conscious or start throwing up.  No.  He didn't have another brain injury.  Falling is a part of learning to stand, learning to walk.  He hasn't learned about gravity yet.  He will.  I hope he will.

It's going to be okay.  He's doing amazingly well.  Yes.  He surpassed all my expectations.  I have to stop having expectations.  I have to treat him like a "typical" child.  He's not sick.  He just has a brain injury.  He's not going to die.  He just has a brain injury. 



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Reason to living

 Baba thrashed from side to side on the bed.  He was trying to sleep, but he was so wired from the shopping, from the lights, and from the drive.  He started to vocalize his frustration with "go", "bah", "ugh", and stringing them together like a broken lullaby.  He pressed his tiny form against mine and giggled.  Then he put his hand on my stomach and cooed.  I put my hand on his head and rubbed it.  He looks up and I meet his gaze.  His eyes are dripping with sleep, but full of gratitude and love.  He's 10 months old going on 40 years. 

I feel fuzzy from the pain and fatigue.  He's been sick for days and he's been a little needier, but he's also been exploding with new skills.  He's so excited that he keeps practicing, tiring himself out, then needing to be carried.  He can't just lie around.  He's either on the go or cradled in the carrier.  It scares me.
 
I don't want him to be like me.  I want him to learn to relax, to be at peace with laying still.  I want him to find the joy of stillness and quiet, to not be afraid of the thoughts that are stirred in the silence. 

He closes his eyes and smiles, rolling back to the other side, and let's out a squeal.  He rolls back and touches my thigh, squeals and rolls back.  I keep massaging his head, hoping it will relax him.  He starts to babble pleasantly, as he slams his arms onto the bed. 

I get up and get ready to wear him in the carrier, but my sister comes in and offers to carry him instead.  I gratefully give her the carrier and pick up Baba.  He's used to being carried by auntie.  They've become pals.  As I wait for her to put on the carrier, I wonder what I would have done without her.  She is my rock, my sanity. 

When we were children, I was her little mommy.  I used to take care of her even though I'm only a couple years older.  She says that I raised her, but now she takes care of me.

I watch my younger sister, my first baby, carry my child and I realize that I am filled with love.  There are two people in my life that I love unconditionally, who love me in return.  Isn't this why I push through the pain, the anxiety, and the sadness?

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Auntie and Baba at 6 months old

A short time...

My baby just woke crying.  Whatever made him cry is still putting tears in his eyes.  My sister hands him over to me and I surround my arms around him.  I get off the bed, still holding all 25 and a half pounds, closely over my chest.

"It's okay, mommy's here.  Mommy's here"

He whimpers and settles in, putting his head on my chest.  It hurts me to hold him like this, but I can't think about that right now.  I continue to bounce him gently and smell his delicious hair.  It really smells so good!  My pain seems to fade and I feel love flooding into my chest.

I look out at our amazing view.  It's cloudy and cold today.  So different from the warm and sunny day yesterday.  But it's still an amazing view, one I'll miss when we move.  I try to soak it in.  

Baba looks up and stares at the view.  Does he see what I see?  I rest my head on his and we continue to look at the swarming city that seems so quiet today.  

I can't believe we've made it this far.  I can't believe how 10 months have passed in a blink.  How much longer do I have before he won't let me hold him like this?  He's already such an independent soul.  When will he feel too old to be comforted like this?  Do I have 2 more years?

I smell his hair again, drinking in his essence.  Yes, at least 2 more years.

 enjoying the view

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