Friday, May 18, 2012

Avoiding Breast Cancer

I read the titles of all the new posts I missed yesterday.  I click on a few random posts that seem pretty or thoughtful.  I try to immerse my heart into the world of everyone else's problems.  If I just keep reading, I'll forget.  I'll be able to to avoid the looming thoughts that threaten to overwhelm and destroy my world as I know it.  My mom's cancer has spread...while on chemo for a decided to hit the lungs...and now the brain.  I can't think.  I can't feel.  I don't know where to put my attention, my brain, but especially my heart.  We're moving miles away in 2 weeks.  Miles and miles from where my mom will be fighting for her life.  My mom who can barely speak English, with my brother who can barely speak at all.  We're moving for so many good reasons.  We have to move.  She was cancer free when we sister and I.  We were optimistic.  We wanted to start a new life. We need to start a new life.  And yet, my heart doesn't know what to do. 

Wednesday, May 9, 2012

Wordless Wednesday

my serious baby

loves the carousel

helpful friend

save the planet

testing the ground

Tuesday, May 8, 2012

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!

Monday, May 7, 2012

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!

Thursday, May 3, 2012

Small Style

T-shirt, jeans: H&M, shoes: See Kai Run

 I love dressing my little guy in cool duds!  He's currently the best dressed in the family.  I'm a huge Star Wars fan, so this is Baba's second Star Wars Tee.  It says, "This is how I roll"...isn't it adorable?

hat: H&M
Doesn't the hat make it perfect?  I love H&M clothes for boys.  They are so adorable and affordable!  (No, I'm not sponsored for this post.) 

shirt: H&M
Here were looking at daisies.  What a perfect day!