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

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.  

My blessed life!

I was "talking" with an old high school friend of mine via facebook today.  We were talking about babies first.  She has a baby boy due soon and even though I am done having kids, I live vicariously through my friends.  If it weren't for Matt's good sense, we'd have several more kids by now.  She very sweetly complimented us on our "unique" family. . .  "Yes, you guys sure have your hands full but you both are obviously such loving parents to take on all you have. Your children are a blessing and it seems like you have one great, happy family! I always love to see pics!" 

We do have a great happy family.  In spite of all it's idiosyncrasies and dysfunction. I replied with a gushing discourse about how great my kids are but more than that, how wonderful my husband is and what a perfect partnership we have in our crazy life.

Matt and I have been through a lot.  I don't know what other "normal" marriages go through but it seems like our last 15 years have been pretty nutso and really, the odds have been against us from the beginning.  We did things wrong.

1) We were too young.  I was only 20 when we got married.  Not even old enough to legally buy myself some champagne to celebrate.  Matt took me out for my 21st birthday in snow that was nearly waist deep and then made me scrambled eggs with cheese.  Matt was only 23.  Too young.

2) We didn't know each other long enough. . . or maybe know each other at all?  I met Matt in June of 1996 when he was dating a girl I went to high school with.  I was dating Matt's room mate.  Things didn't work out in either of those relationships so Matt and I started seeing each other the first week of September of 1996.  We started talking about marriage about 2 weeks into the relationship.  He proposed to me by the middle of October (a month and a half later.) We got married October 29, 1996.  Yeah.  That was fast!

We then moved away from everyone I knew to get a fresh start in Arizona.  By February, we'd left the frozen North for everything hot and prickly.  We lived there for 5 years while Matt was finishing school.  Two kids later, he graduated and decided to join the Army.  I moved back "home" to Washington and lived down the street from my parents while he went to basic training, then AIT.  When we finally were reunited as a family 8 months later, I realized that the man I'd gotten used to as my husband was gone.  He'd been replaced by an evil doppleganger!  By this time, I was 5 months pregnant with what I was about to find out was conjoined twins.  (conceived on his Christmas vacation for all those mathematicians)

When I went into pre term labor, we were forced to uproot again a couple of months later and moved to San Antonio where we lived in The Fisher House.  ( I just realized that we're in the video that's on their page.  Check it out)  We lived in a suite of two rooms and a bathroom for 6 months while the babies were in the NICU.  Then they died.  We moved again, this time across town while we struggled to adjust to life with empty arms. 

Shortly after the twins died, we decided to adopt.  We felt led to adopt kids with special needs so we adopted Daniel first.  He has a congenital brain abnormality.   A year and a half later, we brought Willow home.  She has neuromuscular disease.  Soon after that, Noah was diagnosed with Asperger's Syndrome.  That's a lot of quirky kids in the same house!  We've had to watch our kids go through hospitalizations, surgeries, therapies and appointments of all kinds.  We've agonized over decisions for their health and well being.  We've prayed.  We've cried a lot of tears. 

It hasn't been an easy road.  In fact, its been a lot of hard work and a lot of clinging to an unyielding promise to love each other in spite of. . .  In spite of trials, in spite of circumstances, in spite of bad attitudes and changes you can't stop from happening.  Life is hard for anyone.  It seems like we've chosen a more difficult path than some, yet God continues to bless us and provide for us.  He shields us and goes to battle on our behalf. . .  "But you, LORD, are a shield around me, my glory, the One who lifts my head high."  Psalm 3:3 

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!