1. There’s no way to prepare yourself for watching a team of people who don’t love your child like you do roll him away to a delicate, life-saving surgery. No way.

2. Happiness and sadness can equally fill your heart.

3. A transforming day in your family’s life can feel like it’s yesterday and years ago all in the span of a typical day.

4. Kids have the resiliency of pack mules.

5. Practice conversations are good and all, but you are really never ready. Months after surgery it will break your (my) heart to say to your (my) child “You know what sweetie? I knew you were going to be okay. Mommy trusted your doctors and nurses and I knew you would be fine. I never thought, not even for one tiny second, that you were going to die.” (And you know it’s okay to lie at that moment. This arose after some questions Gage had after seeing a St. Jude hospital commercial for the holiday where actors are repeating words said by parents of sick kids.)

6. People will surprise you with their compassion. You will always be surprised, even if you know they will show up when you need them.

7. Someone will give your son a life-saving organ out of their body and at least once a day, many days more than once, you will drift away into thoughts of amazement and gratefulness that you can’t even begin to express.

8. If other people line up to give your son a kidney you will remain stunned, unable to tell them in words just how much it meant to you that they had offered and wanted to donate.

9. Sense of humor. Don’t forget for one moment that you need it to survive as a couple through a life with kids with crappy kidneys. It helps to laugh sometimes to at your sick kids. Not about being sick of course, unless you refer to yourself as a mutant family. Because that is funny.

10. Give yourself a break for thank you notes that are written months after you intend to write them.

11. Work hard to appreciate your kids’ milestones. Period.

12. When times get rough it is completely reasonable to let other people have enough faith for me.

13. Tell the people in your life, especially your husband, that there is no way that you could have handled this past year without them. Then repeat it many, many times.

I can’t say I’m sad 2007 is over, but it did bring us some wonderful, amazing blessings. And we were sad too some of the year. So, I welcome 2008. While I’m sure our year won’t be what is considered “normal” by any one person’s standards, I’m hopeful it will be our normal. No trauma and less drama would be fantastic.

Happy New Year.

We’ve let our wonderful cleaning lady go. She’s been with us for at least 5 years. We hired her when we were getting the kids medical situation stable and our family into a new routine with 11+ therapy appointments a week and a few doctor appointments and well, things were crazy and the last thing I could manage was keeping the house orderly and clean.

Now that the kids are older and a respectable 5 and 8 years old, it is time. It’s important to me that they don’t grow up thinking that someone else will do the cleaning for them. Sure, they pick up their rooms and they wipe down the counters, and load the dishwasher sometimes, but they haven’t ever cleaned with regularity. So as a family, we’ll shoot for once-a-week cleaning starting this week.

Sounds like a fun way to start the new year, doesn’t it?

Gage got a guitar and Quinn got a tambourine for Christmas and were doing a concert for two. They sang a couple of songs…”We are going to Target to spend our gift card money…” and “We give thanks to the USA it’s not like any other…” Please note the microphone. That’s a Gage invention.

They were quite cute. If I had a video, I’d post it. Just for you.

Gage started riding a bike without training wheels. This is a major accomplishment for a kid with OMA and the desire to not to anything that he isn’t perfect at the first try. Lots of OMA kids shy away from riding bikes because they find it hard to master at an earlier age like their friends. So, it’s no surprise that I cried a little bit when he proudly showed me yesterday.

And Gage and Quinn with the kids of Julian’s niece - so that makes them 2nd cousins right? Which is fine, but a little depressing that our kids and JULIAN’S NIECE have kids the same age.

Today marks the 9 month anniversary of Jody giving our Gage a new kidney. We’re thankful that Jody gave Gage a chance at a life without dialysis. She gave him a better quality of life. Sure, there are things we have to do that aren’t so pleasant like meds and labs and such, but we had to do that before and Gage was still in living limbo. Gage was living life as best he could with what he was given but now he’s living better.

He’s got energy to enjoy an entire full day of Christmas fun with family and friends and especially his cousin Andrew. Previous years he’d still have fun, but he didn’t have enough energy to last nearly the entire day and he would often need to go to bed around 7:00 in order to be able to cope the next day. Wow, what a difference kidney function makes.

We’re thankful for your decision Jody and for the support of your family; including your husband, your kids and your parents. It couldn’t have been easy for them to watch you go through what you did, knowing it was by your choice.

It’s still remarkable to me that it all happened. Nine months later I am still as amazed as I was that day we touched finger tips after surgery and I cried. I feel at a loss for appropriate words still.

We love you. You are an amazing person. And your kidney ain’t half bad either.

We just finished up with a 1/2 day of testing for Quinn. A renal ultrasound, an echocardiogram (to check her heart because of high BP) and labs. She was charming to the staff, easy to please, a delight to be around.

It is so much easier being one-on-one with child. The morning flew by. I remember when we (or I) brought both kids. Whew…always exhausting and stressful.

I’m willing to admit that it’s a little easier because I’ve been around the block once or twice by now.

Julian let me take a nap. A long, 2 1/2 hour nap.

He does love me.

I’d post our card for this year, but it’s a Happy New Year card and it is going out tomorrow. So on the off chance that the THREE people that read this blog also get a card I don’t want to spoil it. I will scan and post it some day. Jody is on our card this year. We thought that was very clever. There’s also a picture of Gage in the hospital because that was a part of our year too. Quinn at ballet. Us in a graveyard. I know. Creepy.

And yes, I know the kids have fake smiles. I could have had Santa’s Helpers retake them a few more times for the perfect giggles and smiles, but these are my kids. Fake smiles and all.

Enjoy your day!

Quinn: Tie me up!

Daddy: Quinn, don’t say that.

Quinn: Then…tie me up good!

****

Quinn: When I get a new kidney I will not be scared.

Gage: Well, you have to go on dialysis first.

Me: Well, Gage, not necessarily. We just couldn’t get you a new kidney fast enough, so you needed dialysis. Quinn might get her kidney before she needs dialysis.

Quinn: I don’t want a catheter like Gage because it marked him up.

Gage: But Quinn, dialysis is fun! You get to watch movies…play games…and watch movies…and do nothing!

****

Me: Julian, I think I am ready for a new wedding ring.

Julian: But your ring is a symbol of our love.

Me: Our love has grown and changed.

Julian: You got me there.

****

Me: Gage, please don’t do that to Quinn.

Gage: All I am doing is bothering her. Jeez.

****

(Gage started to work on a 1st grade workbook leftover from last year)

Gage: This is easy.

Me: See, Gage? Do you remember when I told you that you are learning all the time? Last year you didn’t even know how to do anything in this book and now you do!

Gage: I know.

Long pause

Gage: I know what I know Mommy.

****

Gage: Mommy, I think Santa is a character.

Me: Well, that’s true Gage. A long time ago there was a nice man named Saint Nicolas, and they called him Santa, and so now we just like to carry on the nice thoughts about St. Nick, so that is why we still talk about Santa and act like Santa is real. It’s fun to believe!

Gage: Well I don’t believe in Santa I think.

Me: That’s okay. But it is still okay to believe if you want to.

Gage: I don’t think I believe.

Me: Okay.

Gage: But I don’t understand how he comes in through the chimney. It is just a little hole and he is big.

****

Quinn: I wish we could be Hanukkahs. Because I like the chocolate dreidels.

****

Gage: School was fun today. We cleaned.

****

On the way to see Santa at the mall as Quinn is getting in the car.

Quinn: My toes are crumpled in these shoes.

Me: Well Quinn, why didn’t you tell me? You could have worn something else.

Quinn: You made me wear them.

****

Me: You guys, can you believe you have a whole two weeks off of school?

Quinn: Yeah I know. Today, Mrs. Teacher said “I really need a break from school.”

****

Julian was making Gage read to him, as we do each night, and Gage was getting frustrated with it because, well, that’s what Gage does.

Julian: You can go to bed or argue with me.

Gage: Well, I pick argue then.

Obviously, Julian meant to say “Go to bed if you are going to argue with me.” But as Gage does with most things he hears, he will get you on the technicality.

****

Merry Christmas, if you celebrate it. Happy time off is that is what happens for you. And Happy New Year.

A couple of months ago we were able to get Quinn assessed for visions services through the school system. The evaluator did a complete assessment on how Ocular Motor Apraxia impacts her learning and if it is causing a deficit. They weren’t convinced it is showing a deficit right now (because reading is just starting) but they offered many recommendations to assist her in the classroom to help make her learning easier.

The evaluator (a doctor) was also looking at her social interactions as it relates to the vision disorder. She tends to hang in the background and stay away from active areas when in groups or on the playground so there were recommendations to help her feel safer in her surroundings. She also will choose friends who are less active and rambunctious than other children.

I have a report I’ll post one day because I want other OMA parents to be able to see the recommendations that were made because a lot of the things are easily incorporated into day to day life. The vision department said they’d check in on Quinn and be available throughout the year if any of the teachers had questions or concerns relating to vision and her learning.

The special teacher came to me a couple of weeks ago and asked if it would be okay if we modified her IEP (individualized education plan) to include vision services since they will be available to consult, in other words, so the department gets credit for assisting Quinn. I excitedly said “Yes!” to the modification. The modification means that it is official. This is a HUGE victory for Quinn. Because I know for certain there will be vision issues. As far as I know Quinn is the first child who sees 20/20 and has a visual impairment modification on an IEP. I am thrilled for Quinn and also that this could mean that other kids with the same or similar problem won’t be shut out of vision services like Gage.

Three years ago Gage was denied for vision services from the same county. While I believe I should have fought harder for this, I did feel that the special ed department was meeting his needs (at the time and now). I do however, think that a vision professional might have been able to validate me on the points I tried to make relating to the impact of OMA on his learning and ways he could be helped. Because he can see 20/20, people forget he is visually impaired. Not by their standards at the time. And I will say that Quinn’s OMA is more noticeable and her coping skills aren’t as good as his were (at that age) so she needs the “visual impairment” label more than he did.

Score one for Team Quinn.

Oh how I wish this wasn’t a blurry photo. But I think it still captures the essence of Gage. Don’t you think?

This is at his school’s holiday performance, taken while the (other) kids were (sitting patiently for the most part) waiting to perform. I didn’t hear Gage even though he appears to be screaming. I’m hoping he was just pretending to scream out loud, but can’t be certain because of the other 100+ kids that were active too.

That Gage. Sometimes you just have to laugh, right?