Surgery date
By Natalie | March 3, 2010 at 11:03 pm
Grant’s surgery will be Friday, March 19. They needed bloodwork done at least two weeks before, so we went ahead and got it over with Tuesday. I’m not going to lie–this was for my sake. I’m such a wimp about needles. I couldn’t stand to have it hanging over my head all night, so I practically dropped everything and dragged him to Children’s as soon as I got off the phone with the scheduling lady. You might think I’d have a better handle on this particular anxiety by now, with all the pokes I’ve had to administer/witness, but…clearly not. He, however, was once again very brave, and the whole thing turned out to be sort of anti-climactic. We did get to play in the 4W toy room and saw a few of our friends at the nurses’ station. It was sweet to see that the snake picture that Grant drew last summer is still hanging up.
Afterward we went to the pet store, where Grant showed me all the geckos, snakes, spiders, and turtles for sale. I have a sinking feeling that one of those things is going to end up living at our house one day. He also had both arms full of bags of dog treats at one point and was heading toward the dog beds to pick one out “in case there’s a dog in town that doesn’t have a family, and we can be his family–you, Daddy, and me. He can live at our house.”
We are definitely in trouble.
Topics: animals, tonsillectomy | 5 Comments »
Aspen
By Natalie | March 1, 2010 at 9:44 pm
Aspen was amazing. The mountains were beautiful, the town and the people were the picture of hospitality, and we even managed to ski without hurting ourselves or anyone else. (Not surprisingly, Kirk caught on quickly and went down the half-pipe by the end of our lesson. Also, not surprisingly, I did not get the hang of it quite so quickly. I did technically make it down the smallest hill a few times, though, so I’m counting it as a success.) The trip was everything a vacation should be and exactly what we needed. We’re already scheming about how to go back. And finally, here are the pictures!
Grant had his ENT appointment this afternoon. It went as expected, and I’ll call in the morning to schedule surgery to remove his tonsils and adenoids. The doctor said that what I was describing was at least Sleep Disordered Breathing, if not full Obstructive Sleep Apnea. It can actually cause a lot of problems. School-age kids who have it are sometimes misdiagnosed with ADHD when they’re really just overtired, fidgety, and unable to focus from not getting proper sleep. The “fidgetiness” and extra energy required to breathe during sleep can also cause them not to grow well. We also learned last week at the dentist that Grant has a crossbite on one side in the back, which I later read can also be caused by OSA. In severe cases, it can cause heart problems. Who knew snoring could be so serious? Tonsil and adenoid size peaks between 4-6 years old, so it’s good we’re taking care of it now.
Topics: Aspen, Grant | 5 Comments »
Some “Grant” stories
By Natalie | February 17, 2010 at 3:01 pm
I realize it’s been awhile since I’ve really updated. It feels…weird, I guess, to come here and write about the funny things Grant’s doing and the regular day-to-day stuff that’s going on when we all know there’s this giant, horrible cloud of grief hanging over everything. I don’t know how I want to address it, either, so I just don’t. You can imagine the same struggle for balance playing out in every other part of my life, too.
The grief is different this time. It’s taking longer, for one thing. It’s been five months yesterday, and I would say that the “numbness” phase is only just starting to fade. I’ve cried more in the past two weeks than I have in months. Probably the fact that I feel the need to mostly keep it together for Grant’s sake during the day is making a difference. Then by the time he goes to bed at night, I usually just want to distract myself with a book or TV until I’m too sleepy to deal with how I feel. It’s kind of hard to make any “progress” that way, but that’s where I am.
So that covers that part of how things are going. Otherwise, Kirk is busy with work and the two internet seminary classes he’s taking this semester. Things seem to be going well with getting his new office set up. One bit of exciting news is that our 10th anniversary is coming up at the end of next week, and we’re getting away for a long weekend in Aspen! I can’t wait!
Grant and I have been keeping ourselves busy, too. I bought a preschool homeschool curriculum to go through with him, mostly to give me fresh ideas of things for us to do during the day. It’s been great, although one night in the bathtub, he did tell me, “I don’t like your games.”
“Really, you don’t like painting?”
“Well, I do like painting.”
“But not the beanbag game?”
“Yeah, I do like that. Okay, I do like your games.”
Some other funny moments from the last few months:
- Christmas Eve, after we read through the story of the birth of Jesus in Luke, we were asking Grant some questions to see how much he remembered. One of them was who Jesus’ mom was, to which he quickly responded, “Aunt Mary.” (My great aunt–if you know her, it’s more funny!)
- There was the shopping trip that ended with me dragging Grant out of the mall screaming, “NOW I’LL NEVER FIND MY PERFECT SHOES!”
- A few weeks ago when we were visiting our parents Grant ate what have become known as The Infamous Blue Cupcakes. Really he only ate the frosting–a LOT of very bright blue frosting. A few days later we learned that blue frosting can turn something else blue. (I’ll give you a hint: it rhymes with “blue.”) It was very exciting. He still mentions it almost daily.
- His dinosaur play (oh yeah, he’s still obsessed with dinosaurs) has taken a disturbingly realistic turn. It’s all about the meat-eaters eating the plant-eaters now. One time he had a T-rex come upon a smaller “baby” dimetrodon and say, “Ooh, she’s so cute! CHOMP!” (Please tell me this is okay.) Possibly we should lay off the dinosaur documentaries and stick to Dinosaur Train on PBS.
- He’s been doing a lot of “experiments” lately with food coloring and today, old spices from a spice rack Samantha was throwing out. He’s always checking to see if it will “dissolve.” I guess all that prenatal time in the lab while I was finishing up my research and dissertation did affect him! He’s also into other “science” words, and assured me today that Sadie wouldn’t chew up his “solid” dinosaurs and asked me to bring some “solid” bricks when we were playing with construction trucks.
He definitely keeps us smiling. Thanks for checking on us!
Happy Mardi Gras!
Topics: Uncategorized | 11 Comments »
CureSearch Walk
By Natalie | January 31, 2010 at 3:51 pm
As I said before, on Saturday, May 1, our family will be participating in The CureSearch Walk 2010 here in New Orleans. CureSearch supports the work of the Children’s Oncology Group (COG), the world’s largest cooperative cancer research organization that treats more than 90% of all children with cancer.
If you’re reading this blog, you probably already know how our family has been affected by childhood cancer. As a parent who has faced this twice, I know the one thing that every family in this battle wants more than anything else: a cure. And the only way to find the cures these kids need is research.
I’d like to ask you to join us in raising money to support research that will one day cure diseases like this. You can do this in two ways:
- Joining our team, Marching for the Maxey Girls. To join, either as a walker (actually attending the event) or a virtual walker (part of the team, but not attending), go to www.curesearchwalk.org and follow the links to the New Orleans walk and our team. The registration fee is $10, but once you’re part of the team you can use the site to raise more money if you want.
- Making a donation in support of one of our team members. You can donate securely online by following the instructions above to find our team’s page on the site, or you can write a check (be sure to include New Orleans CureSearch Walk and Marching for the Maxey Girls on the check) and mail it to:
CureSearch NCCF
The CureSearch Walk
4600 East West Highway
Suite 600
Bethesda, MD 20814
Every donation counts, no matter how big or small. We truly appreciate your support! Please help us spread the word about this on your blog, facebook page, whatever you’ve got. Let me know if you’d like a flyer to print out and post, and if you think your company or school would be interested in being a corporate sponsor or forming a team to attend the walk or just raise money, I can get you more information on that. Also, please encourage other families in the New Orleans area and the entire state of Louisiana to form their own teams. (Or send me their info, and I’ll contact them.) Thank you!
Otherwise, we’re doing pretty well. I did have to take Grant to the doctor this week. He started snoring–loudly enough we can hear him from our room–right after Christmas, and I thought at first it was just a stuffy nose or something, but it hasn’t stopped. Then this weekend we were visiting our parents, so he was sleeping with me, and I noticed that he’s actually having periods of apnea with all the snoring…so we thought we’d better get him checked out. The pediatrician said it’s probably his adenoids (his tonsils look big to me, too), so we’re going to make an appointment with an ENT. He also got a flu shot on Friday, and was very brave for that.
We’ll see how well I emotionally handle our first foray into realm of normal, straightforward childhood medical issues. I’m trying to be sane for Grant’s sake.
I promise to sit down and share some of his funny antics soon. Between the potty training (and associated potty humor) and newfound anatomical curiosity, some of it might not be appropriate content for this site, but I’ll do my best!
Topics: CureSearch Walk | 6 Comments »
CureSearch Walk in New Orleans
By Natalie | January 13, 2010 at 9:29 pm
Update: The walk is now going to be May 1 instead. I guess I was a little premature in making the announcement. Look for details in the next week or so.
—-
I’m very excited to announce that CureSearch, the fundraising part of the Children’s Oncology Group, is going to hold a MileStones Walk in New Orleans on Saturday, May 8 at Audubon Park. This will be the first year we’ve had a walk here. I’ve volunteered to be on the committee, and we had our first meeting last night. Everyone is very enthusiastic, and I think it’s really going to be great. It’s a little early to start signing up just yet, but the things I want you to think about/start spreading the word about are forming/joining teams and corporate sponsorships. I’ll share a lot more details in the next few weeks, but I just couldn’t wait any longer to make the formal announcement.
We’re doing okay. Kirk is busy with work. We’ve been very blessed that he’s been able to work at home since we moved here, but now the company is growing to the point that this week he’s moved into an actual office and will have a few more engineers working there with him as soon as they can be hired. We’re proud of him, of course, for his part in all the growth and success they’re having, but I have to admit we’re really going to miss having him so close during the day.
Grant has already claimed his old office. He said he was going to have to go on some trips and have some meetings when it’s his office. I asked where he was going, and he said Mars. He also filled our dry-erase calendar with appointments in different parts of the solar system, but he assured me that he’ll be home that same day. He’s really enjoyed drawing and coloring lately, and has gone from scribbling to drawing recognizable pictures and even writing his name (although he’s not that confident about it and still wants me to help him) just in the past month. He did draw a Brachiosaurus with five legs last week, though, and everything has six fingers or toes on each hand or foot. He wants them “even” (two sets of three). He’s so funny!
Thanks for checking on us, and I’ll have more walk details soon.
Topics: CureSearch Walk | 3 Comments »
What the boys have been up to
By Natalie | January 5, 2010 at 10:53 pm
Topics: Grant, Video | 17 Comments »
Reflecting
By Natalie | December 29, 2009 at 11:40 pm
I’m reflecting on this month and this year, and as usual, it’s hard to know where to start. It’s been hard, but can I really say it’s been the worst? And if it is the worst, what does that mean? This month was full of sadness and stress–the anniversaries, the memories, Kirk’s dad’s surgery, my grandpa’s stroke, another Christmas where our little family felt somehow even smaller–but it was also the only time when Grant will ever be three years old at Christmas. He learned about the wonder of Jesus and Santa and gingerbread and the fun of giving and getting gifts. While part of me wanted to just skip the whole thing, I knew at the same time that, out of my whole life, these were the moments to cling to and treasure.
And this year…I knew when it started that it would be too hard to bear, that it would take more of me than I had to give. And it was and it did, more than I (thankfully) could have imagined at the time. But it was also the year that Annette was here with us, that we heard her laugh, that I saw Grant love as only a big brother can. It was the only time we had. It was beautiful as much as it was horrible, and in a way I wish it could have lasted forever.
Mandy gave me the Steven Curtis Chapman CD “Beauty Will Rise” for Christmas. The songs are all related to the loss of his daughter. I highly recommend it, and I’ll probably end up posting the lyrics for most of the songs here eventually. I’ll end with this one.
Questions
Who are you God?
‘Cause you’re turning out to be so much different than I imagined
And where are you God?
‘Cause I’m finding life to be so much harder than I had planned
You know that I’m afraid to ask these questions
But you know they are there
And if You know my heart the way that I believe you do
You know that I believe in You
But I still have these questions
Like how could you, God?
How could you be so good and strong
And make a world that can be so painful?
And where were you, God?
I know you had to be right there
I know you never turn your head
You know I’m confused by all this mystery
You know I get afraid
But if you know my heart as completely as I trust you do
Oh, you know that I am trusting you
So is it true that for every tear I cry, you cry a thousand more
As you weep with those who weep?
And are you just holding yourself back
From crushing all the pain
And evil in the world for reasons we just can’t understand for now?
But isn’t there a day of redemption coming?
Come quickly, Lord
Come quickly, Lord
Come quickly, Lord
So who am I, God?
That you would raise me from the dust
And breathe your life and your love into me?
You know that I believe
Topics: Uncategorized | 18 Comments »
Christmas Update
By Kirk | December 22, 2009 at 8:46 pm
Last night Grant told me quite the Christmas tale….”There once was a spooky house with no windows, only doors. It was spooky and haunted. There were witches, and goblins, and mummies, and creatures, and monsters. And they were all dressed up as…chickens. Grrrrr!” Couldn’t have told it better myself.
Topics: Christmas, Grant | 10 Comments »
Grant and Santa
By Natalie | December 20, 2009 at 4:11 pm
Our boy is loving Christmas. It’s not Halloween, mind you, but it’s not too bad. (We’re still listening to the Halloween CD, and yesterday Grant asked me if I wanted to sing Halloween carols. Only in this house would you hear that!) I wasn’t planning to have him take a picture with Santa when we went to the mall last week to look for a few last-minute things, but he insisted that “Santa wants me to sit with him” and “I have to tell him what I want!” There was no line that day, so I wiped the gingerbread cookie he’d been eating off his cheeks, and he was out of the stroller and in Santa’s lap almost before I could tell the people his name. He assured Santa he’d been good, and told him he wanted a “big Transformer thing.” And could this picture be any better?
Topics: Christmas, Grant | 11 Comments »
One year
By Natalie | December 14, 2009 at 10:21 pm
I just read through those first few posts from Annette’s diagnosis. I have no memory of writing them–so much of those days is a blur, while some images will be with me forever–but I definitely remember the shock, frustration, and sadness that I felt then. It’s actually not that different from how I feel now. I don’t remember if or where I slept that night. I remember everything about the little meeting room we were in the next day when the surgeon told us that the tumor was one of the biggest he’d seen and worst of all, that it had spread to her spine. I don’t remember holding her or feeding her the first time after that first surgery. I’ll never forget how much we loved her or how far we would have been willing to go for her.
I know that the story is not over, and I’m clinging to that, but living without her–without both of them–is so very hard.
Topics: Uncategorized | 16 Comments »