Monday, January 23, 2017

Thoughts tumbling around in my head

I had a Stake President (an ecclesiastic leader over ten or so congregations) when we lived in Katy who once said something along these lines (it’s been a few years):

“When we are pregnant, all we want is for that child to be born healthy and for them to be happy.  When does that change?”

I remember it clearly.  We were seated in a side room with Stake Conference being piped in over the speaker because my kids weren’t being the most reverent – and that was before we adopted our extra loud and wiggly ones :) .  It has always stayed with me. (Luke 2:19)  He went on to talk about the big plans we make for our children, our high expectations, but what they really need is to have love from us.  Oh, how I have wrestled with this over the years!  Our children need the bar to be high.  They need far flung goals, something to work for, to strive to become.  I tell myself anyway.  And I believe that – where we set the mark becomes an inner dialogue in their heads.  And yet looking back at my life, I held myself to extremely high expectations and when my health failed and I had to crawl instead of sprint each day, there was no condemnation from my parents, only love and concern.  Perhaps President Pickard was right.What about if the reason we fall short isn’t health related (which is easier to justify)? What if we missed the mark in other areas of our lives? 

In July Alex had two big seizures.  They changed him – and they changed me.  He regressed in so many areas.  Now six months later, he is pretty much back to where he was.  I’m not sure I am.  He is a faster cope-er and deal – er than I am.  Oh!  How my dreams have had to change for him!  How excited I was to adopt him!  How I instantly loved him!  My adorable sweet little Chinese boy!  And then we found out he was blind – my world rocked, but I adjusted.  I dreamed he would be an amazing blind attorney, perhaps an advocate for those with disabilities.  Then his shunt failed.  Then the diagnosis of Autism.  Then the probable future diagnosis for intellectual disability (no one wants to be the one to slap that one on, so they keep saying in the future he will be diagnosed with ID…).  Then the epilepsy diagnosis.  I sit here and feel beat up and dizzy.  With each new diagnosis, I try to look to the future and see his path, his bright tomorrow.  I try to focus there so I know the steps we have to take to get there.  My poor focus keeps changing, then changing again.  I’m tired.  I’m beat.

“All we want if for that child to be born healthy and for them to be happy.”

When we were naming Alex, we wanted to give him a Chinese name in addition to his American name of Alexander Joseph.  We named his Jian Fu.  Which means “health” and “happiness” because we wished for him to have good health and to be happy.  With all he had gone through by four months, we wanted him to be blessed with health and happiness.  When did that change?

This month a friend of mine lost her son.  He went into the hospital for what she hoped was a “quick tune up,” I remember those.  But in a matter of days, he was gone.  This world is poorer for the loss of Joel.  He is missed tremendously.  I remember when we thought Bella was terminal.  For years I fought for her.  Fought for every medicine, to find the best doctors, to get the equipment she needed, to get the nursing care she needed.  If she needed it, I made it happen.  She was going to be happy and we were going to do the best we could for her no matter what!  Period!  Now she fights for herself.  She is such a strong willed little human being – she makes me smile, when I’m not pulling my hair out! :)

I really think there are two mindsets: the first. Life is short, let’s enjoy every second!  The bucket list idea.  Make a wish trips. and then there is the second, Preparation, save for retirement, get a good education, personal improvement line upon line.  Really these are in such stark contrasts!  “She’s only going to be here for a little time,” so no discipline happens.  I see that when people laugh at Bella and Joy in public when they are naughty.  “Aren’t they cute?”  Um, no, and you won’t think they are cute when they are forty and doing that.  Typically developing kids can’t get away with that, so neither should mine.  But….I”m looking at the long term.  I have to live with these cute girls for the rest of their lives, and they won’t be tiny and cute forever.  On the other hand, if I knew that one of my kiddos was going to die in the next year, daily life would be out the window.  Forget homework and vegetables!  Let’s go and make some memories, so there is something to hold onto and look back on when you are gone.  Where is the clock above everyone’s head that tells me how to act?  Push that one because she needs to know what it’s like to fail and get up again, to fight unbelievable odds, cause that one is going to find the cure for childhood cancer.  Hug that one extra tight because there’s isn’t much time left, only a few more bedtime stories and family prayers left for that one.  How am I to know?  What if I get it wrong?  Is that my job to know?  Or is my job to love and to cheer?

Alex’s IEP was last week.  A group of eight of us sat in a small room and decided what we would focus his education on for the next year.  We talked about placement for school for next year.  My boy is five – old enough for Kindergarten!  I am dying!  I want him to stay at VIPS till he is called home.  He is loved there.  He is pushed just enough to grow.  But he can’t stay in preschool forever, so my heart is desperate again.  Wanting the best for him – wishing I could see the future so I could know where to push and where to love.  What does he need?  Where is he headed?  What lies in store for him?

I’m looking at Alex and trying to adjust my focus again.  I want to take the best for the long and short term approaches.  I want him to be the best Alex that he can be!  I’m trying, Alex, I’m trying.


No comments: