Kindly Strangers give hope

It's been crazy around here as we get ready to move.  We are getting rid of everything but the essentials, so we can start fresh.  It's been a little difficult because our routines are off and we missed doing the Masgutova Method 3 days in a row.  By yesterday, Baba was falling more often than he fell when he first started walking!  He was frustrated and crying all day.  So we definitely made time for the treatment last night.  I can see the difference immediately.  He slept well and he's walking fast, almost running this morning!

I have several different articles in the works, including "What does sensory issues feel like?", "How does temperament affect therapy?", and "What is the Masgutova Method?".  It takes extra time to write those articles, since I want to make sure they are accurate and clear. 

I've been wondering lately if I started this blog too early.  I really don't have much time to devote to writing and I feel guilty for not churning out post after post.  I guess I'm putting the pressure on myself, but I started this blog to help other families going through similar circumstances.  How can I help them without disseminating information faster?  Oh well, I guess it's too late to regret it.

It's so true!  You don't really know what it's like, until you're in the same situation.  I always knew it was hard being a special needs parent, but I really didn't understand the emotions.  The worry, the guilt, the fear, and the sadness that a parent feels can be so overwhelming.  It's so hard to focus on the present and feel joy for the accomplishments. 

As a therapist, I always wondered why parents were blaming themselves.  Don't they know it's not their fault?  As a parent, I can't stop questioning every decision I make.  I wonder if I'm doing enough or if I'm doing too much.  Even with my knowledge and experience in the healthcare, I find myself feeling uncertain and anxious.  There are days when things are amazingly ordinary.  Then there are days filled anxiety and sadness.  I know it's a part of my own recovery, but it makes me feel guilty too.  I question my right to be sad, even though I know I have a right to my feelings, a right to heal from my own trauma.

I am also aware that my son's issues are relatively minimal.  I know that some children face more challenges.  I also know that there are many children like my son, who no longer qualify for therapy, but who nonetheless need it.  Yet they can't afford private therapy, so they fall between the cracks.  These children suffer silently as they face continuous frustration, trying to keep up with their peers.

It's also true that we all suffer from some sort of difficulty.  Everyone has their own challenges and we need to find the strength within ourselves to overcome them with brevity and gratitude.  We are all in this together.  We can be there to support each other and cheer each other towards happiness.

Maybe this is what blogging is really all about.  It's a place where kindly strangers can help each other pull through their difficult moments.  I am so inspired by what I read online.  It has been so inspiring! 

I read on the iPad while my baby sleeps right next to me.  He sleeps so much better when I'm next to him.  I also try to sleep when I can, so I can keep my strength up.  Sometimes, I try to write on the iPad, but it's really hard.  I write better when I have a keyboard.  The slow iPad kills my train of thought, but I guess I will just have to get used to it.  I wrote this on the iPad!

I hope everyone has a great day!

One year after a baby stroke

I don't know how many times I've started to write our birth story, but I just can't seem to make it coherent.  It's been a year and the memories of that time are dampening the good of today.  I know I'm suffering from the trauma.  It was such a difficult time.  I will eventually be able to write about it and heal, but for today I will focus on how far we've come.  There are definite challenges up ahead, but we are stronger together. 

Baba has changed my life for the better and I'm so grateful to him!  He is the light in my life and he brings out the best in me.  He is a unique little guy, who is already acting like he is a leader.  People think he is hilarious! 

He loves learning his numbers and letters, though ever since he started walking, his verbal output has decreased.  He has even stopped saying mom.  However, he is clearly able to communicate his wishes and desires with gestures and sounds.  I love to hear his little sounds because they so clearly indicate his opinions.  He has very clear opinions about his little world and I love learning about who he is as a person.

 The neurologist says that Baba may have delayed speech development and there is a slight inward turn of his right foot.  We have to keep up with the therapy to prevent bigger problems.  Baba and I do therapy everyday.  Some of it is very boring and some of it is just fun.  It's become a part of of life, so it's easier now.  At first it felt like my head was filled with therapy, but now we have more fun.  Sometimes I even forget we're doing therapy! 

 It certainly hasn't been an easy year, but I guess motherhood is harder than I ever could have imagined.  It's also more rewarding than I ever imagined.  I just love to make him smile!  It really lights up my heart and makes every exhausted part of my body happy.  I couldn't have asked for a better match in temperament.  He keeps me on my toes! 

My life hasn't been easy, but I know that I am blessed with an amazing little person who makes my life better.  I don't know how I lived before he came along! 

I'm learning so much about taking photos of children from this little guy.  He's so adorable and I can't stop snapping pictures, but I have so much to learn.  More than half of my pictures are awful.  I'm used to taking photos of flowers and things that just stand still at dusk.  It's so much harder to take photos of a fast moving object in all kinds of different lighting, but it's so much fun!

Right now, I'm so inspired by the other amazing photographer bloggers!  These are some of my favorite mommy bloggers who also happen to be great photographers!

The Paper Mama--who also happens to have lots of photo challenges, which I hope to enter soon!

Moosh in Indy--she's a popular mommy blogger, who also gives great photo tips!

Enjoying the Small Things--a super popular mommy blogger, who also happens to take amazing photos of people!

Have an amazing day everyone!

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

  Linking up to Just Write.

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

Photolicious #3: beauty therapy

I took these back in October while wearing Baba on our walk to the community garden.  I just love flowers!

Periwinkle wrinkle

 I love finding tiny flowers and making them large.  It feels like finding little treasures on my sometimes dreary path.  It reminds me that I have to go searching for the treasures in my life because they may just be hiding somewhere outside my current view.

Sunlit Pink

 Beautiful flowers lighten my heavy heart and pushes the anxiety out of my body.  Even if it's a short respite from all the things I must do that day. 

Orange Belles

 Beauty gives me reason to ponder on the beautiful things in my life, even though the ugly ones still loom.

Purity

These two pictures are of the same flower!  It reminds me that things can look different from a different point of view.

sun drenched

Sometimes, what's underneath is brighter than what's on top.  I might have to take the effort to bend my knees and look more carefully.

red fire

What do you do to help you through the hard times?  Did you find a little peace of happiness this weekend?

I hope you did!  Have a lovely rest of the day!

My bad, mommy bad...

This was supposed to be posted yesterday, but life happened. Thought I'd post it before I had to trash it. Have a great weekend!

Baba has the flu.  He was cranky for a couple days and I was starting to get irritable too.  I was having visions of putting him in a naughty chair, when I finally realized he was sick...drippy nose.  The mild fever didn't clue me in.  Mom's a dunce!  Every time he's gotten cranky, he ended up being sick or teething or both.  When will I finally figure that out?  Poor kid, he got the inexperienced mom.

snot wipe emergency!

He probably caught it when this 3 year old kid decided to pet him...on the face!  I was so shocked that I just stood there completely taken aback.  He didn't mean to be rude, he was just touching my son all over his face in an annoying way!  Actually, I was torn between thinking it was sorta cute and really rude!

cute or annoying?

Baba was shocked too and just froze.  Mom's not coming to the rescue.  He finally looked up at me and I gave him a big smile.  After all the kid wasn't trying to hurt him.  Baba chuckled!  Yup.  My 10 month old thought the 3 year old kid was a crack up!  Then he simply crawled away.  You might not believe me.  You might think I'm just seeing what I want, but he has "won" these battles with other kids.

Once, while looking at the Koi fish in the pond, Baba spotted a 7-8 year old girl, not surprisingly she was beautiful.  He definitely prefers pretty girls!  He stared at her for a few minutes, while she was looking at the fish.  They were on a mini platform, so she was kneeling on it and he was crawling.

staring

At some point, she realized that he was staring at her, he was only 10 feet away.  She looked a little confused because he was staring at her intensely.  Suddenly, he started crawling towards her, the little guy had intent.  She froze and looked scared.  My sister had to scoop him up before he rammed into her!

not watching where he's going

"hmm..."

In retrospect, I think she was blocking the path and he decided to crawl around her.  He was probably checking to see if he could take her.  I think he smelled fear.  He was right.  That poor girl looked frightened.  When do you start teaching manners?

Update:
Auntie says that he was actually going straight for her, that's why she was scared.  She was closer...so she would know.  I guess I can't be annoyed by the boy who petted his face!

"what's this?"

Anyway, I'm so tired!  I feel like a walking zombie (as opposed to the one that's still in it's tomb)!  My sister has to repeat everything twice and I still don't get it.  He's attached to my hip and won't let his auntie carry or play with him.  Ugh!

"mom hasn't figured out that I'm sick"

To say I hurt would be an understatement.  Colossal understatement!  I used to be able to take Vicodin to take the edge off the pain, but breast feeding and narcotics?  Let's get him addicted early!  Aahh!

So I must pretend it doesn't hurt and play like I'm having the best day of my life.  I just need to convince my brain to release more feel good drugs...along with the ones released with breast feeding!  Yeah!

An abundance of love

NICU

Although I have experience working with kids, I never worked with babies.  This was my first time working with someone so young and it was really hard, though very rewarding.  

PICU with auntie

I started my career working with the elderly in skilled nursing facilities.  I worked with many who had suffered from a stroke.  It was always challenging because no two strokes are the same.  The brain is so complicated and you never can be sure of the outcome of therapy.

 1 month old-holding mommy's hand

However, I learned that the people with the family support made the most progress.  The elderly didn't always have family nearby or friends who were still living.  Sometimes, they were completely on their own.  But those who had family support felt more motivated to make progress.

2 months old-looking up at mom

I know that my son and I are fortunate to have each other.  How perfect that I could use my skills to help him.  Yet I know that it isn't my skills as a therapist that matter most.

 2.5 months old-looking dapper

The most important gift to a child with special needs is LOVE.  It's love that motivates them to practice a skill till they finally achieve it.  It's love that gives them wings, so that they can fly.  Of course therapy is important, but without love it would not be as effective.  

4 months old-listening to mommy

Love gives us the insight to see our children's personality, not their illness.  It gives us the courage to fight for their right to good therapy services, good education, and social acceptance.  Love helps us to persevere when it feels so much easier to give up.

almost 6 months old-looking at fountain with auntie

So take a moment to reflect how your love has empowered and brightened your children.  You may not have all the answers, but you have the most important thing...an abundance of love.

 almost 10 months old-trying not to touch auntie's computer

He calls me mom

 I finished writing part 3 of the baby wearing, sensory integration, and NDT series, complete with links and photos...but somehow lost it.  Blogger posted a blank page.  I don't know how it happened, but I'm so frustrated.  I guess blogging has a learning curve.  I'm posting this one because it was already written.  The other post took days to write.  Ugh!!

My son first called me "uhm-mah", when he was 4 months old.  I was kissing him and making the exaggerated kissing sounds, "um-muah".  He thought I was trying to get him to imitate me...I guess.  He started to frown, so I stopped.  Then with apparent stress and difficulty, he said "uhm-mah".  It just happens to mean mom in Korean.  Fortuitous?  Maybe.

From that point on, whenever he was distressed and wanted my attention immediately, he shouted "uhm-mah".  But I don't speak Korean to him.  It's not my first language.  So I continued to call myself "mommy".

Well one day, around month 6, I heard a very loud distressed, "maaaa  uhm".  From that point, he has called me mom.  Yup.  He calls me mom.  Sometimes, he calls me mom with all the angst and irritation of a teenager.

I try hard not to laugh, but sometimes it cracks me up.  He's intonations are spot on.  Especially, when he's upset, irritated, or bored.

The little guy is his own person.  He knows what he wants.  He won't usually compromise.  Though he's pretty good at walking away from something he's not allowed to do.  I think he figures he'll wait until I'm not paying attention.  So when it's suddenly very quiet, I know it's time to go looking for him.  He's probably trying to do something crazy.

In a way, I might savor these moments more because I didn't expect them.  When I found out he had suffered a stroke, I just assumed I wouldn't be suffering these antics until much later, if ever.  So I'm grateful...even though sometimes I'm flustered.

My son may have suffered a stroke, but he is like any other kid, he has personality...the good, the bad, and the ugly...like any other kid.

Progress

It seems like yesterday when he was still in PICU.  He seemed like an old soul.  He seemed to know things I didn't know.  He was so fragile, yet so strong.

A part of me was in denial.  A part of me was terrified.  How was I going to be a good mother?  How was I going to help him overcome the many difficulties ahead?

It seemed like I was barely able to take care of myself.  My life was far from perfect.  In fact, it was so far from perfect that I couldn't imagine what typical life looked like.

Yet I am responsible for his life.  I am responsible for his care.  I am responsible for his future.

He's made so much progress since then.  He is so much like any other kid.  Yet he is different.  His future is still uncertain.

I must not worry so much.  I must focus on the progress.  I must celebrate my son.

Am I not good enough?

I've been sick on and off for over a couple months.  It's my friend fibromyalgia (chronic pain syndrome), wreaking havoc upon my body.  It doesn't like being so tired all the time, which is why my immune system is down and making me sick with yet another cold.  Fibromyalgia feels like a bad flu that won't go away, so having a cold on top of that feels really awful.  Ugh!

Other experienced parents say that you feel tired for at least 10 years.  Is that true?  I might be a sick puppy for some time.  It really worries me that I won't be able to give my son everything I wish I could give him...my time, my strength, my joy...if I'm sick all the time.  I'm most afraid that I won't be able to give him the therapy he needs...that really makes me want to cry.  What's the use of being a therapist, when I'm unable to provide therapy for the one person I want to treat the most?

He's bear crawling.  It's not the best form of crawling.  It doesn't prepare the body for walking and it doesn't stimulate the vestibular system (movement) for balance in the best way.  I can't get him to stop.  Though, honestly, I haven't been able to give him the therapy he needs to cross crawl instead.  I've been sick and therapy is a little stalled. 

Sometimes when he looks at me, I wonder if my sickness makes me less of a mother.  Would he have been better off with a mom that wasn't sick?  It breaks my heart.

Then I see him exploring and experimenting with something new and I'm amazed at his curiosity and intelligence.  I'm grateful to be his mom.  I'm grateful that he brings me so much joy...making my illness seem less awful.

He has come a long way in the past 9 months.  He is really tenacious, persistent, and stubborn.  These are good traits when you're trying to overcome a stroke.  Yes.  My son is teaching me to persist in my efforts to feel well and to never give up.

He may be bear crawling, but he can certainly squat!

And go up steps!

Get mad at his mom!

And be generally adorable!

Hmm...  Writing is cathartic.  He may have a mom who is sick all the time, but it does make me more sympathetic to him.  I really know what it's like to try hard for the little things.  I know how frustrating it is to have limitations.  I know what it's like to have an invisible disease.  Whatever effects this stroke will have on him, might seem invisible, but it will still be difficult to deal with on a daily basis.  I will be able to show him by example...how to deal with the frustrations of being "different".  Well...this is what I hope.