Babies with Something more

I was directed to this story by my sister in law and I wanted to share it with you...

SOME MOTHERS GET BABIES WITH SOMETHING MORE...My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away.It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Lori Borgman is a newspaper columnist and author

Clinic update...a few days late

Wednesday was a good day at the clinic. They checked James from head to toe and he looked good. The runny nose, eyes, and cough they think is due to a virus. I fully expected his counts to be low but once again to my surprise they were not. His ANC was 4500 and hemoglobin and platelets normal. They want to keep his ANC around 1000-1500 so I have to admit I was a little alarmed by 4500. I was alarmed because one of the main things they look at for relapse is a high white count. I think I ask the nurse 4 or 5 times if his doctors thought his counts looked ok. She assured me that they were fine. Most likely his body has geared up to fight something off.

So we were sent home with instructions to give him a decongestant and we go back in 2 weeks unless he has a fever. James seems to be in better spirits and I think the decongestant is helping him. Thank you so much for your prayer and encouragement. It means so much to know friends are walking right beside us during this trial.

A Hard Day

That is what it has been today. I feel defeated in every way a mom can feel. For the last couple of days James hasn't been very happy. He has cried alot and been very clingy. It reminds me of a steroid week without the steroids. He has had a runny nose, a cough, and his right eye has been running. I don't know if it's allergies or if he is trying to get sick. I have taking his temperature what feels like a million times and he hasn't had anything close to a fever.

We head to clinic tomorrow so maybe they can make sense of what is going on. We continue to covet your prayers. This is a very long road and some days seem extra long. Thank you that we can use this means as a way of communicating how we feel. There are still some days it is hard for me to believe he has cancer.

I will update tomorrow after the clinic visit.

Busy

Sorry it has been a week since our last post. Things seem to be busy! For the next couple of days we are keeping our nephews. Of course James is thrilled to have a buddy that stays all day and night. Cole and James played so hard this afternoon. James got a sand and water table as a gift and they had a blast playing in it. I have some pictures I will put at the end. It is days like today I forget he has leukemia. Hopefully we will have many more like that. Since James continues to do well I have decided to take on a new adventure. I am planning on going back to school next spring. I take the GRE in June and then firm everything up so hopefully I can start Spring 2009. Please pray for us as we make plans that extend beyond cancer.

And here is Little Miss.......

Exhausted

That is how I can best sum up the day. My day started at 4:30am to prepare to leave the house at 5:45am. We took Adrianne along today so it was quite a task making sure I had what everyone needed. James couldn't have anything to eat or drink but surprisingly enough he was good. He had a great procedure and great doctor's visit. His counts look good and his liver enzymes continue to drop into the normal range. James also has completed one day of steroids so please be in prayer for the next four. I have read other blogs from older children and I have an idea of what some side effects are but at the same time James can't adequately communicate what is going on and what he is feeling. Please pray that we would have discernment to best know how to care for him when he doesn't feel well.

I wanted to include some photos from the day...

Thank you for continuing to keep up with our journey and for praying for us. We know we have a long road ahead and most likely there will be bumps but your love and support sustain us.

A Victorious Day!

We set out this Sunday for the second try at going to church and we were victorious. James did much better in his class. All the volunteers and staff were there to make us feel welcomed and me feel comfortable. I have to admit I was a little distracted thinking that the pager was going to go off. All my anxiety aside, he did great. He was glad to see us when we picked him up.

This week is a big week. We head to the clinic early for blood counts before his lumbar puncture. He will receive chemo during his lumbar puncture, chemo through his port, and he will start steroids. He will also have the oral chemo he takes nightly and this week an oral antibiotic(to completely clear the ear infection). Thank you so much for your prayers concerning the antibiotic. He is taking it like a champ! We will covet your prayers as we go into this week and especially for Wednesday. Those days always start hard because he can't have anything to eat or drink.

Thanks again for cheering us on as we make sense of our days and learn to live with leukemia as normally as we can. Thanks for your prayers!

An unexpected visit

This week was our non clinic week but it turns out we had to go yesterday. James woke up with "groopy" eyes, coughing, and a runny nose. When I talked to his doctors they wanted to check his counts to make sure nothing was going on. I made arrangements for Adrianne and we headed down to MDA around 9:45am. They accessed him and got his blood and then we waited. Since we were an add in they had to out us where they could fit us in. We get back to see the doctor around 1:30-2:00 and they tell us his counts look great so most likely he has a virus. After they did his examination they determined he had the beginnings of an ear infection. So they sent us home with antibiotic for 10 days. Please pray that all the medicine will get down. I have to give him 7.5 mls which is 1 and a half syringes. James has down so well with medicine that I don't want this to be a hindrance. Thank you for your continued support and prayers.