Holding On

"I wonder how bad she was," my dad asked, as he watched Princess cram another noodle into her mouth. "I'm sure she didn't have much longer to live."

I'd never actually thought about how close Princess must have been to death. But I'd never seen a baby with heart condition struggle to hold on to life. My dad had.

He was with me when I went into cardiac arrest. I was born with Transposition of the Great Veins and had open-heart surgery when I was 6 weeks old. It was my first and last surgery.

Princess was born with Tetralogy of Fallot. While not as complicated as Transposition, it can still be fatal if it's not surgically corrected. In the United States it's corrected shortly after birth. Evie lived with it for two years. She probably turned blue and had a hard time breathing. Combine that with her cleft lip and palate, her poor weight gain, and life in an orphanage, it's a miracle that she survived.

I will always wonder who held her when she had a Tet spell? Who got her knees up to her chest so the blood would start flowing again? Who decided this child with two significant special needs, should get life-saving surgery to correct her heart in hopes that a family would adopt her?

Someone was with her in those early fragile days. Someone had to love her. Without love and human contact, it's not unusual for sick babies to give up.

Princess fought. But she couldn't have done it alone. What angel did God place in that orphanage to care for her until we got there? I wonder if she's still there tending to the sickest, to the least of these? Is she helping other babies hold on for just a little bit longer until they can finally come home.

Boy + Girl = Bonding

It could have been a very bad day.

The toilet backed up.

The dog got sick.

A carton of orange juice spilled all over the counter.

And this was all before 8:00 am.

It could have been a very, very bad day. I needed help and the only person around to help me was my four-year-old.

"I'll help you, Mommy," he agreed. He played (gently) with Princess. He helped carry the rags I used to wipe up the OJ to the laundry room. And he managed to keep the dog out of all the messes. Then we flew out of the house to run our errands. My Middle Guy pushed Princess (gently again, after I reminded him) through the store in her stroller. He helped load bags into the trunk. And he did it all without complaining. He was such a good boy, he got to out to McDonalds for lunch.

At McDonalds he held Princess' hand as I balanced the trays in my arms. He even fed her french fries. Then he was off to play in the tubes. She has refused to even try to say his name. She has been calling him "boy." But when he popped his head out of one of the tubes, Princess looked up, waved, and yelled, "Love you."

Sometimes the best times come out of the worst days.

Mommy Guilt

Within 48 hours,  my four-year-old got a new sister, said goodbye to his grandparents who live halfway across the United States, watched his best friend move from the house next door, and waved goodbye as his older brother got on the bus to go to school all day.

My Middle Guy was stuck at home with me. No friends. No grandparents. No brother. Just me and Princess who cried and cried and had to go to countless doctor appointments. He went from being my baby to the middle child. He was dragged to all of the Big Boy's stuff and now all to Princess' appointments.

And I poured on the mommy guilt. It got better when his preschool started, but even after 3 months of being home I still have guilt about him. Just this week, he sat through 4 different appointments. On Wednesdays he has to hurry up and go to school, so I can hurry up and get Princess to speech therapy. Then after school he has to hurry up and come home, so I can hurry up and get Princess to physical therapy.

I haven't figured out how to slow it down. Until he asked to watch Tom and Jerry--with Evie. I don't normally let my kids veg in front of the TV. But they were sitting on the couch as close as close could be and begged. Even Princess said, "E-V," and pointed to the screen.

As it started, my little guy laughed and laughed. And so did Princess. But not at the TV--she was laughing at her big brother, who, for a moment, slowed down with his sister. They are bonding, but it's slow. Maybe there are more Tom and Jerry episodes in our future. And maybe my mommy guilt will one day fade with the laughter.

Heaven Is the Face by Steven Curtis Chapman

I heard this song by Steven Curtis Chapman on my way to Target yesterday. It was so moving, I couldn't go into the store. If you have time, take a listen. You can hear it here: http://www.onlylyrics.com/hits.php?grid=11&id=1036348

If not here are some of the lyrics:

Heaven Is The Face
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

Chorus:

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,

And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy (no more).

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

I'm Tired

I'm tired. I know every mom can say that. I know every mom is tired and spent at the end of the week.

But I'm really feeling it. Princess has been home for a little over two months. I have taken her to the doctor 27 times. Yes, 27 times. And this week has been, well, hard. There's no other way to say it.

I wasn't prepared for the sores on her tongue and around her mouth after surgery. I wasn't prepared for her to just stop eating and drinking. She is so tiny she needs every calorie she can get. I wasn't prepared to battle her every single day about her thumbs. She so desperately wants to pop them back in her mouth. But if she does, she could jam them right through her palate. Which would mean a repeat of this entire week.

But today, I got the biggest surprise of all. It was a beautiful day, so we met some friends at the park. Exactly one week to the hour post surgery, she climbed up to the top of the slide, smiled, and slid down by herself. I know that's a pretty typical thing for kids to do. But Princess isn't typical. She could barely climb stairs last week--her muscles just aren't developed.

As her mouth heals, I am seeing more confidence in her. She also said her first sentence today. She said, "Love you, Mom."

I may be exhausted, but that's enough to make me want to get up and do it all again tomorrow.