Saturday, May 23, 2009

Inside this Body

Can you guess why my beautiful girl is singing? Because she knows that she holds the key to curing cancer.

If we as a culture had successfully killed off all fetuses with Down syndrome, the cure you may someday desperately need would be that much further out of reach.

While she has meant the world to me since her arrival in it, I am so pleased to think that her existence, and that of those like her, may bring about the greatest and most elusive cure in modern medicine. Let’s hear it for that extra 21st chromosome!

Sunday, May 17, 2009

Prayer #2847

Through the years I have often wondered about prayer... what to pray for, and if it really matters. My prayers started off fairly simple in the early days, "Lord, if you take away this hangover, I promise to never drink Mai Tai cocktails again." Eventually I stopped being so self-centered, "Lord, please keep Cute Boyfriend safe on his motorcycle."

Time wore on and I began to pray more consistently for things I deemed important... someone’s health, marriage, salvation, or the outcome of a court battle. I wondered if those prayers made any difference. It was hard for me to have faith when the conversations seemed so one-sided. Even when things turned out the way I wanted, I still wondered, "Was it always meant to be this way or did my prayers influence the outcome?"

When I found out that the baby I was carrying had a massive heart defect, and that it might be an indication of Down syndrome, I wanted to pray the right prayers but had no clue what they were. Should I pray for a miracle... that the baby’s heart would be fixed in utero and that there would only be 46 chromosomes? Why not.

He answered "No" on both counts.

I prayed that she would eat, that she would heal, that she could go home... "No, no, no," He said. Everyone else prayed too; family, friends, church acquaintances, strangers... hundreds of people, all praying a prayer that, summed up, sounded like, "Let her live."

But after weeks and weeks, it was looking like we were going to get the ultimate "No". And this got me to wondering about my relationship with God. Isn’t He my best friend? Doesn’t He love me? Doesn’t He want only good for me? Let me tell you, if I had any other friend who had the power to save my daughter’s life with one breath of their attention, and they chose not to, well we wouldn’t be best friends anymore.

Did those prayers matter at all? Was she destined to die on some predetermined schedule?

When king Hezekiah was deathly ill, Isaiah told him that the Lord said he would not get better, that he would die. When Hezekiah heard this, he turned his face to the wall and prayed to the Lord, "Remember, O Lord, how I have always tried to be faithful to you and do what is pleasing in your sight." Then he broke down and wept bitterly. God tells Isaiah to go back to Hezekiah and say to him, "I have heard your prayer and seen your tears. I will heal you... I will add fifteen years to your life..." 2KI 20:2-6

Well, Hezekiah’s prayer made a heck of a huge difference, now didn’t it. Hence, I kept on praying for her life. Somewhere around prayer #2847 on her behalf, I realized that I was missing something. You see, I was still mad at God for not performing the miracles He could have. And all those "nos" were starting to make me question my faith altogether. What would it mean for me and God if He let her die? Could I still trust Him, love Him, believe in Him?

Thus, prayer #2847, "God help me to accept your decision concerning my baby. Help me to forgive you if you take my daughter back. Help me to not let my broken heart stand in the way of our relationship. Help me to let go and let you, even though I can’t understand why."

"Yes," He said, "I’ll give you that." And, finally, I felt peace inside.

Friday, May 8, 2009

Got A Lot?

Been blessed with a lot? Then go see what Libby says is the perfect Mother's Day gift to give your mom. It's a gift I know I'd love to get.

Are you reading this post late and Mother's Day is already over? Well, there's a ton of other good reasons to pop for this present, so go anyway.

Tuesday, May 5, 2009

Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.

The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.

Saturday, May 2, 2009

Triple Play Date

Our playgroup, Triple Play, got together for lunch last week. Getting five little ones to all look the same way and smile while five mommies are trying for that perfect shot is a tough. (Where is Artist Anaa when you need her?)

We took the kids to the store today and I realized that I am still watching people watch her. I wonder what they see. I am so crazy about her and I see so many children with Down syndrome all the time now that I no longer see it. I only see them.

Then I take her out. You would think babies have magnets instead of poop in their diapers or something. People just gravitate to her carseat and stare. Surely it is because she is so darn cute.

So let's just suppose Mary had a baby with ds. She, Jesus, and the rest of the gang are wheeling the baby around the market square and over come the "lookers". Does a popular tune run through Mary's mind, "Don't you wish your baby was cute like mine?" Does she ignore them? Does she speak up, "What the Sheol are you staring at?" What would Mary do?

Exactly What They Were Staring At: