A letter to my angel babies

It's January 29, 2012.  Eight years ago today our family made the hardest decision we've ever had to make.  We had to let our babies die.  Brynleigh Belle and Victoria Grace were born July 25, 2003.  They were 2 months early.  They were tiny.  They were broken.  They were a miracle!  During the 6 months prior to withdrawing life support, we watched helplessly as they struggled to survive with the conjoined body they were given.  We listened to their shared, malformed heart beat through the monitors, heard the swish and pump of the ventilator, the beeping when their blood oxygen levels were too low.  It was constant.

They lived and died in the Neonatal Intensive Care Unit at Wilford Hall Hospital in San Antonio.  Natural light could only be seen through the window for part of the day.  It would never be enough to replace what they missed of the world outside.  They never felt the sunshine's warmth on their faces or the wind blowing across their pink cheeks.  They never walked barefoot through green grass or felt sand between their toes.  They never were able to smell flowers or bread baking or fresh salty air of the sea.  We'll never know if they would be girly-girls and like pink and princesses and flowers or whether they'd be tomboys who liked to climb trees and play in the dirt.  We have no idea if they'd like to sing or do crafts or ride bikes or swim.  We will never see them dance or hear them giggle. 

Even their cries were silent.

While even now there is grief for those lost moments with them, more than that there is gratitude. 


My darlings, Bryn and Tori,


As I look back on my life, and remember you, I observe what some would see as hardship. I can only call it a blessing.  It was an honor to know you, even for the short time we were together.  Because of you-- your birth, your life, your death--  I am forever changed.  While I prayed that God would save you, heal you, let you live, at least give us more time. . .He, in His infinite wisdom, had a greater plan for you. . . a purpose that we never could have anticipated.  You see, someday when we all meet again, I will tell you about the brother you never met.  His name is Daniel.  He was a little boy far away in another country that needed a family.  

Because I loved you, I could also love him.  

Then I will tell you about the sister who was on the other side of the world waiting to belong to someone.   Her name is Willow.  She has been sick her whole life just like you only she went through it all for years without a Mama.  

Because I loved you, I could also love her.  

We learned we were stronger than we ever thought we could be. . .because you were born.  We saw you struggle and learned so much from you. . . because you lived!    We have two children in our lives now that we never would have known. . . because you died. We are stronger, wiser, and better people because of you.  I can only say thank you.  Thank you for teaching me about compassion.  Thank you for teaching me how to love.

Loving you until I see your beautiful faces again in Heaven,
Mommy

Exercise woes

I'm getting older.  I'm getting fatter.  It's not as easy as it used to be to do things as it was when I was in my 20's.  My friend Lauren (see picture at left) has decided that we should exercise together which is wonderful!  It makes sense, she dances at the dance studio where my kids dance. We're in Bible study together.  We live in the same neighborhood.  Great, right?  Except for one thing.  She IS still in her 20's.  I'm in my 30's.  It hasn't been as easy as I'd hoped to get started.  She's in better shape than me because she's a ballerina.  She's got a goal in mind.  I've just got this vague idea that it would be nice to be thinner and I know I should exercise but my loathing for anything that might make me break a sweat is an obstacle that is hard to overcome. 

So yesterday we started with a quick upper body workout that left me feeling like I wanted to cut my arms off.  Life without arms at all might be a better option since I can't lift mine anymore anyway.  Today it was our Couch to 5K day.  We started off walking for 5 min then running for 1 and then walking again for 1 and 1/2.  I think we did that 8 times.  I lost track because all the blood rushed out of my head and I nearly passed out.  I could hear my heart pounding in my ears and there was no way to catch my breath.  My legs were like jello and I thought I might die.  All this extra work and I'm also trying to watch what I eat.  It's difficult to do when exercise makes me want to eat a small farm full of delectable barnyard animals.  Steers and pigs and chickens, OH MY!

What I need to do is find it within myself to change my attitude and just accept the inevitable.  People who want to be healthy and have a body that's reasonably free from rolls of extra flesh, exercise.  That's just what they do.  Many of them even like it.  I can't figure that out. . .but they do.  So the question is:  How do I bring myself from point A (hating that feeling of impending death when I exert myself) to point B (endorphin addiction?) 

A letter to the public

Dear People in Public,

Today you met a child who has an invisible disability.  He looks like a normal eight year old boy but inside of his beautiful, perfectly formed skull is a brain that is broken.  It didn't develop properly while he was being formed in his birth mother's womb.  This is called schizencephaly.  Would you stare and whisper if it was his legs that were misshapen instead of his parietal lobe?  If instead of a hidden part of his brain called the septum pellucidum being absent, it was his arms? 

The tantrum that you witnessed was not just a child being a "brat."  While you were staring at him and forming your judgments, he was struggling to maintain self control.  He knows right from wrong and can clearly articulate that when he's feeling well.  Today he had just left school where he had to hold it together for his teachers all day.  He was tired.  He was hungry.  He had come back to his family where he is safe to show his struggles.  He knows Mom loves him unconditionally.  Mom is comfort.  Mom is security.  Knowing that after school is his hardest time, this mom had no choice but to take him to a doctor's appointment for his brother.  After waiting to be picked up from school, being told he had to wait in the waiting room was too much for him.  Being tired, hungry and bored pushed him over the edge. 

While you were seeing a boy hit and kick his mother and yell and throw things, I, the woman who knows him better than he knows himself, was seeing progress.  This child's half hearted thumps on my leg with his fist had none of the intensity of tantrums past.  His screams contained no threats of homicide or obscenities.  He may have kicked me but he did not object when I took his shoes away.  He put his teeth on my leg but he didn't bite.  This child who has been an inpatient in a pediatric inpatient psychiatric treatment facility 8 times in his short 8 1/2 years has been on 7 different kinds of medication at one time to keep him from hurting someone else or from cutting his own tongue off!  Yet he never even talks about hurting himself anymore!  He sleeps when he's supposed to sleep.  He makes jokes.  He laughs.  He's a mere shadow of the intense, volatile, angry child he was even a year ago!    He cares about his teeth and proper nutrition.  He is affectionate and works hard in school.  He has increasing empathy for others.  At Thanksgiving when asked what he was thankful for, he announced "Jesus" without any leading. 

So while I thank you, dear lady in the Dr.'s office waiting room for your offer to cut a switch off of a tree outside while he howled in frustration at my feet.  Though it might have looked like my child "just needed a spanking," it won't be necessary.  When my soft, calm words and consistent discipline fail, I'm wise enough to know my child just needs a safe, quiet place to be.   When his daddy picked him up, he promptly fell asleep in the backseat of the car.  Like a toddler who's had too much activity in his day, my "normal" looking 8 year old boy felt much better after a power nap. 

I hope that in the future you will remember my son for whom I've often thought I should buy a shirt proclaiming "I'M NOT A BAD KID. . .I HAVE BRAIN DAMAGE!"  When you see another child struggling, understand that not all disabilities can be seen outwardly.  Even so, the struggle and the stigma are very real.

Thanks.  

Major storm coming our way!

We've got raindrops falling and thunder in the distance!  A major storm is heading our way, according to the news.  It doesn't look like that big of a deal from this image but they say there are tornado warnings in some counties.  In any case, most of the time when a thunderstorm passes through, we end up losing power, at least for a little while.  I'm trying to hurry up and get my blog posted for tonight before that happens.  We've got our generator ready, flashlights and candles gathered.  The dogs are inside and we're hunkering down to weather the storm.  

I'm praying that no trees come down on our house tonight!  Living in the woods like we do, that's always a worry.  Especially since we had a close call right after we moved here. These pics were taken in the summer of 2010 when lightning struck a tree by our driveway.

This was a cherry tree that came down between our house and our dear sweet neighbor's within a month of us moving here.  We were the fortunate ones.  Notice that the top of the tree's branches just barely brushed the siding of our house? It also came within feet of crushing our car.  The other side of the split came down right smack on top of our neighbor's truck, crushing the hood and the cab.  Poor dear sweet neighbors!  

We've learned to take our storms seriously around here! 

Kindergarten

When I was in kindergarten, our class was a half day program.  A five year old was either in "morning kindergarten" or "afternoon kindergarten."  We sat in short chairs at tiny tables and did puzzles, played with play dough and cut and pasted pictures of things that started with whatever the letter we were studying that week.  When it was time to put our toys away, we heard 3 familiar notes played on the piano and our teacher, Mrs. Walton, sang "Please clean up!"  We sat on the floor "Indian style" and sang songs about popcorn popping on the apricot tree, April Fool's day and my personal favorite "I Told the Witch Doctor I was in Love with You!"  We had the coolest teacher in the world!  She was magic!  She could tell what color a crayon was when you gave it to her behind her back, she had a ring that changed to a different color every day and she knew how to make lollipops grow on a tree!  I have so many memories of kindergarten, even now. . .30 years later because she made it memorable.

I went to kindergarten twice.  I was a very smart child so my parents had me tested for kindergarten when I was 4.  That's me. . . second row up from the bottom, all the way over to the left.  The one in the ponytails.  I was little.  I was the youngest in the class.  I did well that year and went on to the first grade but I cried a lot and still needed a nap.

 At 5, I went to first grade in the morning and then back to kindergarten in the afternoon.  In this one, I'm in the back row.  Second kid from the left.  I was older, taller and actually belonged in kindergarten at this point.  I got 2 wonderful years with Mrs. Walton.  I thought I hit the jackpot!  We all loved that lady!  I assume that she's probably gone now to wherever all the best teachers go.  I hope she knows how special she was to all of us and how much we loved her. 

All I Really Need To Know I Learned In Kindergarten

by Robert Fulghum

Most of what I really need
To know about how to live
And what to do and how to be
I learned in kindergarten.
Wisdom was not at the top
Of the graduate school mountain,
But there in the sandpile at Sunday school.

These are the things I learned:

Share everything.
Play fair.
Don't hit people.
Put things back where you found them.
Clean up your own mess.
Don't take things that aren't yours.
Say you're sorry when you hurt somebody.
Wash your hands before you eat.
Flush.
Warm cookies and cold milk are good for you.
Live a balanced life -
Learn some and think some
And draw and paint and sing and dance
And play and work everyday some.
Take a nap every afternoon.
When you go out into the world,
Watch out for traffic,
Hold hands and stick together.
Be aware of wonder.

Perfect Love

So there we were, sitting in the pew, enjoying the special music trio of our pastor, his wife and their son singing together.  Suddenly on the screen next to the stage lights up. . . revealing a windows desktop computer screen.  Then facebook pops up.  There, on the screen in front of the entire church was MY face and some comments I'd made on my favorite time wasting social network.  My friend Erin, (who was sitting next to me) and I both were kind of startled!  We looked at each other and sort of laughed uncomfortably.  I was frantically trying to remember if there was anything I'd said that I wouldn't want on the screen in front of church on a Sunday morning.  Unfortunately, I was sitting too far back from the screen to be able to read the comments I'd made.  The song the trio was singing on stage was a nice one but it was excruciatingly long waiting for them to finish while my face was on the screen.   I began to sink lower and lower into the pew.  As the pastor's wife sat down in front of us, Erin alerted her to what had to be an obvious mistake.  She only nodded and said it was supposed to be there and no, it had nothing to do with me!  Phew!  It was part of what the pastor was preaching about in preparation for Sanctity of Human Life Sunday.  He wanted to show a video clip that we had all been talking about on facebook.  I'll post it here:



The fact that our pastor used this youtube clip as an example for sanctity of human life comes as no surprise.  He's got a heart for people with special needs.  This is one of many reasons why we love him.  He can see value and worth in people that some would call unworthy.  He sees each individual and appreciates them because they are a unique and special creation of God.  Sanctity = the quality or state of being holy or sacred.  Sanctity of each human life, without regard to ability or lack thereof, regardless of race, sex, intelligence, talent or physical handicap.  I'm blessed to be surrounded by people who lead by example and see people as Jesus sees them. . . through the rose colored glasses of perfect love. 

Always learning

Once you've home schooled your kids, it's hard to change that mindset.  Every day contains a learning opportunity!  Today, we had a baked Italian pasta dish for lunch so we set the house up like an Italian Bistro, turned on some traditional Italian music, and learned some Italian words.  I taught the kids how to say "pane" for bread, "insalada" for salad along with "por favore" and "grazie" and a few others.  We learned a little bit about Italy's history and I had the "big kids" show Daniel and Willow where to find it on the globe.

After we cleaned up from lunch, the kids wanted to watch a movie.  After scrolling through pages and pages of choices on the Netflix instant stream, they decided on the original Cheaper by the Dozen from 1950.  The movie takes place during the 20's which led to a discussion on why they were called the "roaring 20's," the economy during the 20's and what happened to change the boom after World War I.  We then discussed the stock market crash of 1929 and trading practices on Wall Street, including what it means to buy stocks on margin and how that led to people losing so much money. 

All in all, it was an interesting day!  The kids had fun and stayed busy which is always good for Moms! 

On my heart tonight.

It's not "Wordless Wednesday" so I thought I should say a few words here.  I read several of my blogging friends posts for today and many of them are adoptive parents or are somehow involved in orphan ministry.  Tonight, the plight of the orphan is heavy on my heart.  I can't help them all. . . but maybe with some friends on my team, we can help a few more!

Lessons

Willow was scheduled for foot surgery tomorrow.  We've spent the past 2 weeks arranging for a nurse to be here to help care for her after the surgery, arranging for special equipment like a hospital bed, shower chair, etc to be delivered.  The school will be sending a tutor out to our house and we even have a physical therapist who makes house calls.  We were ready.  Then they called today and said they can't do it tomorrow.  The control freak in me wants to scream!  However, I believe that everything happens for a reason.  I believe in God's perfect timing.  The doctor's office needed to postpone the surgery by a day and do it on Saturday because of over scheduling or a conflict with the doctor being on call Friday. . . I'm not sure of all the details.  Does a day really make much difference?  Yes.  Why?

Because maybe. . .just maybe, God needed to show me something.  Until recently, I was a very lonely person.  We moved to a new town just over a year ago and right around the 1 year mark, I was feeling pretty down.  I missed the support I had in San Antonio.  I missed my parents, my siblings.  I missed my friends.  I thought I'd never have that feeling of "belonging somewhere" again.

We'd been invited to church several times by our dear neighbors but I had always declined the invitation.  I thought: we can't do that!  Isn't it enough that we live next door to these poor people; Matt and I with our hodge podge of high maintenance, LOUD children?  We don't want to invade their church too!   It will be too much for them!  They won't be able to escape us!  

But over the summer, they invited us again.  This time to Vacation Bible School.  I tend to take my kids to more than one VBS in the summer anyway just because it's wholesome, it's fun and it's free!  This seemed like a good opportunity to get my kids out every evening for a week and finally show up to visit my neighbor's church.  We walked in and immediately saw people that my kids knew.  The nurse from Daniel's primary school was there and knew Daniel by name!  The church was small.  It was much smaller than I ever thought would feel comfortable for me again, even though I was raised in a small church.  My neighbor told me that they only sing hymns in the services.  Surely that wasn't for me, right?

But we went.  The kids had a great time.  They said it was the best VBS ever!  I thought, really?  But it's so small!  There aren't very many kids!  It's not fancy like other churches we've gone to.  There aren't lots of programs and people and loud music.  They don't even have a special needs ministry!  But we went again. . . and again. . . and we stayed.  We are home.  I still marvel at the people that go to my little country church in the middle of no where.  They are family.  My family.  I can't believe how big their love is and that they have just accepted us in to their lives like we've been the missing piece that they have been waiting for.  Our pastor called me Wednesday afternoon to make sure he knew what time Willow's surgery was going to be.  He plans on being at the hospital with us.  I had no idea people still did that sort of thing.  Never, has anyone offered to come to the hospital and stay with me when Willow has surgery. . . and she's had a lot of them.

 When he offered to come I said "Well thank you, that's very nice but you don't have to do that."  Thinking to myself, that's a long drive and it will probably be very early in the morning.

He replied without hesitation and with complete sincerity "But I want to show Willow the love of a church."  

He wanted to be there, not for Matt, not for me but for Willow. . .my 11 year old, broken, sickly child, my child that talks with words so slurred and nasally that much of the time people can't understand her speech, my child that can't keep up socially, emotionally or physically.   He wanted to show her what it means to be loved.  I thought for sure that when her surgery schedule changed that he would have other, more important plans.  It made no difference to him.  He's still taking time out of his day to drive the 40 minutes plus it takes to get to the hospital because he wants to be there for my child.  Amazing.  Lesson #1  We have a family.  We belong.

As soon as I got the call that we were going to have to do the surgery on Saturday, I had resigned myself to the fact that I was just going to have to take Willow to (yet another) surgery by myself.  I've done every surgery by myself since we've moved here.  Matt was going to be at home watching the kids.  I posted on my facebook page that I was looking for a place for my kids to go. . . individually of course because certainly no one would be willing to take on all 3 of the other kids.  Within a few hours, I had offers from 4 people to take all of them.   It used to be hard for me to find someone who would take Daniel. . .even by himself but today, no one refused.  Everyone who offered wanted Daniel too!  I had so many offers that I was still able to divide them up and I didn't feel guilty that I was over burdening one person.  Lesson #2  I have friends.  I belong.

So God, tonight I repent for all those frustrated words I spoke this afternoon when I got that phone call about postponing Willow's surgery and I thank You that You gave me this opportunity to feel loved and accepted in my community but most importantly in your kingdom.