Archive for October, 2007

It’s official.

Friday, October 19th, 2007

It’s official. I have lost 35 pounds in two weeks. Well, only 32 since people have been bringing us meals. :) Laelie gained her required eight ounces plus five more to show off for her doctor’s appointment. She showed her disdain for the scale, though, by promptly peeing all over everything… twice. Little imp.

I’m still having the nightmares. The memories of them are worse since I have to wake up every two and a half hours to feed my daughter. So I have clear images still bursting in my head as I’m tending to her. Lots of the dreams revolve around Laelie being tortured or starved. The first is a fear in line with her condition, and the second, a fear in line with being a new mom and having the ‘is-she-getting-enough?’ thoughts after each breast feeding. Her weight is showing she’s getting enough and I just have to tell myself that my fear is normal but false.

However, the nightmares where she’s being tortured are more real. They aren’t normal. They aren’t false. That’s her future.

I see the pictures on this site and am reminded of a happy couple anticipating the arrival of their first baby. Psalm 126:3 says, “The Lord has done amazing things for us! What joy!” (NLT) That’s the way I thought I would feel when she came into the world. It feels like the joy got robbed from us. I wonder when I can join the psalmist in his exclamation. Will I be able to before she’s too much older?

Charley still answers the phone saying, “Hi,… Good, how are you?…” and I hate it because we’re so far away from doing “good.” Of course Charley is already moving over this bump in the road so often I’m left alone in my grief. He’s already in a mood to do parenty things like talking about what school she’ll go to and getting her a gmail account (he was so mad when Laelia@gmail.com was not available :)). I’m not there yet. He’s talking about where to go for holidays and going on dates with me again while a babysitter watches her. I’m *definitely* not there yet. I was invited to the Halloween party at work and Thanksgiving dinner at home (in Placerville), but I’m just not ready. Maybe I will want to leave the house someday and be happy to leave my little daughter with a friend, but that day is far away.

My grandfather had a stroke today. They found out later that it was a minor one and are testing him for clues to a major one coming. I admit I panicked at the overwhelming need to drive up there and the impossibility of doing it with a daughter whose car seat was meant for someone with legs that could bend to allow for the belt. I was frightened at the thought of leaving my house with a tiny, breakable child.

I know I need to let her spread her wings and climb trees and explore her world. I can’t be the overprotective beast of a mother who raises a dependent weakling. I keep thinking everything is going to hurt her and everything is painful for her. Charley laughed at me when I freaked out over the thought of her getting a cold. I tried to explain that because she was special, she just shouldn’t have to suffer anything extra like a cold, a bad haircut, a broken heart or growing pains. He told me I can’t deprive her of life just because she’s special. He’s right. I have no respect for that kind of botched parenting.

Charley’s always gentle with me when I go crazy. And he’s always making me laugh. I want my daughter to have a husband like him. I want her to feel attractive.

I have a hard time living from day to day. I am constantly jumping twenty years into the future and then crying my eyes out at the picture I see. Then on the flip side, I keep wishing it was twenty years in the future so my daughter could have already lived through most of the pain. Why can’t I just enjoy my baby? Well if joy comes in the morning I’d better get to bed and wait it out. The rest of my family is asleep on the couch.

Hi everyone, Laelie here

Tuesday, October 16th, 2007

Hi everyone, Laelie here. I’ve been hearing what people are saying and to everyone who thinks my parents are great, I would just like to enlighten you all about a thing or two.

First off, my parents read to me to help me develop language. But mommy reads me romance novels and daddy reads me the Bible book of Matthew about hell fire and gnashing of teeth. Grandpa also was reading me horror science fiction. So far it’s looking like my first words will be “melted-flesh” instead of “cookie.”

Secondly, mommy and daddy fuss about every little inch of me. It’s like they don’t realize that I’m the most beautiful baby in the world. I seriously start to wonder if they even read their own guestbook!

And lastly, mommy is feeling lots better and is laughing again, BUT she keeps forgetting to stop laughing when I’m fighting for dear life to drink my breakfast! I mean, try sucking your milkshake down during an earthquake!

So really, thanks for all the messages saying they are great parents, but I think half the time they have no idea what they’re doing.

…I’m pretty sure daddy is still trying to figure out how to take out my batteries at night.

It’s been so amazing to watch

Tuesday, October 16th, 2007

It’s been so amazing to watch friends, family, strangers and family of friends meet our needs. Some people we don’t even know have stopped by to bring a card or a few words or a snack. I continue to be amazed by Fellowship of San Diego, the small church down the road, who really adopted us. Some of the people there have only known us for two weeks and yet show us love like we’re old friends. I am also struck by how deep my friends care for me even when our conversations to this point may have only been about work gossip and boy troubles.

I’m just feeling a lot lighter. They told me in the hospital that my depression was only “bad” if it didn’t get better over time. I really feel like it’s working it’s way out of my system bit by bit. That tiny pin prick in the distance is the end of the tunnel, into the sunshine. I’m really very thankful to everyone who has helped me to this point.

I’m terrible with my memory lately. I’ve forgotten names, what day it is, where I put anything and even basic English grammar. I wish I could sit down and write everyone the thank you cards and letters they all deserve, but I’m totally at a loss.

I just know that there have been fresh flowers in my kitchen (in and out of the cats’ mouths :)) every day of my darkness.

Thank you all so much. I can’t pay you all back, but someday I know God will bring someone into my path who I can shower with love and support. I’ll pay it forward and you’ll all, in a way, be a part of that person’s life as well.

Charles here

Tuesday, October 16th, 2007

Charles here.

So sure, some of our experience is unique. The part about trying to get her physical therapy, occupational therapy, and orthopedic help as soon as possible, and worrying that every day that goes by means she will have a little less mobility at 17, and feeling like the medical bureaucracy is slowly crushing the life out of my daughter? That’s unique. (And you can pray about that, by the way. We need these appointments faster. And they’re not coming faster.)

But a lot of what we’re going through is just the standard world-upending experience common to all new parents. Case in point: diapers. Like many young families, we are producing used disposable diapers much faster than we can fashion them into decorative arts and crafts projects.

So we got a Diaper Genie II, which is like the Diaper Genie, only it was made for twice as much money and didn’t do as well at the box office. You flip up the lid and squeeze your previously-worn diaper through some spring-loaded teeth, after which it just…disappears. Perfect! Problem solved!

Only not. When I saw the words “Diaper Genie” the connection I made was with the ability to fit large items into small places, like a genie into a lamp, or a lifetime supply of diapers into a canister the size of R2-D2. On the contrary: every couple days the spring-loaded teeth start backing up, at which point I open the Diaper Genie II, tie some knots, cut some plastic, and wind up with a diaper sausage the size of Barry Bonds’s arm.

I’m stockpiling them in the closet. When Mardi Gras comes around, we can just hang them from the ceiling.

People have asked us what we need

Saturday, October 13th, 2007

People have asked us what we need. It’s been hard to ask for anything, but we’re so tired and maybe it’s time we reached out for more than prayer and encouragement. For those of you who have offered to bring something and didn’t know what, well now we have a better idea. (Oh and we love hand-me-downs!)

  • Nursing Bras. I don’t have one that fits (unless you count being held together by hair ties). I think I’m a 44D or 44C although it’s hard to tell since I’ve never been this big. (Quote from Charley: “You definitely didn’t have *those* when I married you!”)
  • One of those contraptions to help me breast feed in public modestly but still see the baby (since we have so many doctor’s appointments)
  • nursing shirts (something absorbent and buttons up the front, right now I have two shirts)
  • a skirt that is loose and long (to go over my stitches since my pants hurt me there)
  • maternity underwear (for the same reason as the skirt… I think I’m a size six)
  • diapers!!! (So Charley can do more work! :))
  • burp cloths

And as for non-material things:

  • help with housework
  • guests that can stay and play with the baby, but not stay longer than one breast feeding session
  • guests who can stay with me while Charley runs errands (since I’m still suffering from depression)
  • emails reminding me to eat and drink and take my vitamins
  • healthy food

Nicknames

Saturday, October 13th, 2007

Nicknames for baby so far (in no order):

  • Littlekins
  • Chubs
  • Bulldog
  • Uku-Laelie
  • Uka
  • Babykins
  • Bug
  • Little bug
  • Laelie bug
  • Laelie of the Lake
  • Waaaaaaah!
  • Pouty-face
  • Squirmy
  • Goofy-girl
  • Rudolph
  • Rosy-nosy
  • Baldy
  • Sniffles
  • Bity-boo
  • Lae
  • Lays
  • Cheeks
  • Love-bug

Charles here

Saturday, October 13th, 2007

Charles here.

So Laelia and I have been reading in Matthew about Jesus healing the paralytics. (Incidentally, I’m so thankful we had our daughter in today’s day and age, in this country. 2,000 years ago (or in many countries today) we would be sure she would never walk, and she would be begging by the side of the road.) Anyway, it seems to me that Jesus didn’t heal these people just to heal them; he did so as a validation of His own divinity. (In one of the cases, He states specifically that He is healing this person so that people would know Jesus had the authority to forgive sins.)

Still, it’s pretty cool that Jesus used healing as His preferred miracle. He could have melted the flesh off the face of anyone who doubted Him, or just summoned rock music to follow Him around wherever He went. It’s comforting to know that when Jesus wanted to prove His divinity, He did some good at the same time.

Typical conversation with my daughter at 2am

Saturday, October 13th, 2007

Typical conversation with my daughter at 2am:

“Mom, help me I’m dying! Feed me! Feed me now!”

“Hold on baby, Mommy’s coming!” *Straps on My Brest Friend* *Puts stool under feet* *Puts on nipple shield* *Gets burp cloth* *Gets blanket* *Looks back at baby*

“Zzzzzzzzzzzzzzzzzzzzzzz”

I think it’s time for me to grieve my expectations

Friday, October 12th, 2007

I think it’s time for me to grieve my expectations. I realize that my expectations were very selfish. I saw a surprise child as an extention of myself. I dreamed of dressing her up and taking her for walks in the park. There is a playground nearby that I foresaw her enjoying. But every fun thing on that playground involves climbing and navigating a functioning body around. I hurt her little sore arm while dressing her today even with the extra big button up shirt we got for her. She can’t walk in the park with me like I did with my mom.

I want to feel normal again. I want to go back to work. I am facing staying home to care for her using SSI or some other government assistance. I don’t want it. I do well at my job and my life was pretty good. I don’t even know what kind of full-time care she needs or how I’m suppose to make this decision in two and a half more months. I want my life back.

God didn’t make her this way. People have said that and I think I get the comfort they mean behind the words, but God didn’t make her this way, my womb broke her. Something went wrong inside my body that hurt her. Even unburying this admission from my heart feels like reopening a wound. People keep saying there’s nothing I could have done, but my guilt doesn’t diminish. She can’t wear her little shoes because I am incapable of carrying a child inside me.

While I’m “confessing,” I will just say now that I don’t think God will heal her. Maybe it’s just lack of faith, but God did put rules into the universe and he rarely bends them.

There is no cure.

If there is no cure the only thing I have is relying on God to heal her. I just don’t think he will. I remember praying so faithfully that God would bring my mom back from the dead. He could. He didn’t. He could crush the moon in his fist, but I don’t think he’ll do that either. He seems to work according to his own rules. He’s not a vending machine where I can put in my quarters and get my miracles. Yes, he could heal her, but he probably won’t. Maybe I’m just putting my fleece out.

***********************

Charles here.

I have 100% faith that God can physically restore our daughter to full health, if He desires. That’s not the only miracle He could perform on our daughter. He could:

-Give her supernatural social skills in school to avoid the ostracism that usually accompanies a physical deformity.
-Provide a wonderful, godly husband who will look past her appearance to the beautiful woman inside.
-Give Laelia an indomitable hope and optimism even as her therapy continues into her teenage years.
-Make us such good and loving parents that our daughter has a wonderful childhood despite her handicap.

So, I’m asking for healing when I pray, but I’m asking for a lot of other things as well. If you think of us when you pray, please do the same. We’ll figure out God’s will together.

Frustrating

Thursday, October 11th, 2007

To respond to Charley’s blog about Children’s hospital, not only is this very frustrating, but they didn’t even spell her name right (Lailea K Wesley??? It’s not like we didn’t write this down for them! K?!). We are doing exercises with our little daughter based on the two seconds of information our physical therapist gave us. We don’t know how long to do this or what to do. There was no example or practice session. We are just moving her gently and hoping this will help since WE CAN’T FREAKIN’ GET GOOD PHYSICAL OR OCCUPATIONAL THERAPY AT ALL ANYTIME SOON WHICH SHE DESPERATELY NEEDS ACCORDING TO HER DOCTOR AND THE SPECIALIST!!!

The one good thing about our physical therapy session (besides getting “approval” for further sessions) was the waiting room. There were so many kids with problems. I was told by our pediatrician that I would cry when I walked in there and saw them. I was amazed I didn’t. I didn’t see the kids as much as the moms. They weren’t grieving anymore. This was normal for them. They praised their kids’ improvements and were smiling, actually smiling. One mom was giving me advice on breast feeding in public and another was trying to get her kid to leave the bouncy trampoline after his session. They were strong and I bet they started out like me, lost and confused and hurting.

I love her so much. I love her so much it hurts. I love her so much it hurts and I have to stop looking at her.

I have never sang so much in my life. Everything is a song. None of my songs rhyme. Her two favorites are sung to the tunes of other songs. One is Beyonce’s song, Irreplaceable, “I can have another poo in a minute, in fact it will be here in a minute, Daddy.” and the other to the tune of the song, There’s Just Something About That Name, “Laelie, Laelie, Laelie, there’s just something about that name. Unspellable, Unpronounceable, Mass Confusion. Disney won’t sell you anything. Laelie, Laelie, Laelie, Let all Heaven and Earth proclaim. Kings and kingdoms will all pass away, but there’s something about that name.” Of course with that last song she likes the original best. :)

I love to hold my baby girl up to my face. She smells wonderful. I hold her like I did in one of the pictures on this site. Note: I had been crying and throwing up for five hours after surgery in that picture… and no make up. Thus you’ll forgive the appearance. :)

It’s so crazy to have a daughter. The first time Charley said, “My daughter” while on the phone with some insurance clown, I almost corrected him. Then it sunk in that she was in fact ours. We have life. It’s amazing.