It feels too flowery to say he’s my sunbeam.But he just is, this boy. He was very very sad and scared a couple of nights ago.I took he and his brudder to the firehouseand there were so many peoplein crowds waiting to check out the enginesand lines for the bounce house,some people sitting and some standingand in just a flashhe was gone. We looked up and aroundand back and forthand I felt the panic. The longest minutes went bywhere I thought the thoughtsthat kill a mom’s insidesand thenthere he was.His face was crumpledand his tearswere so bigand he thought I left him. I ran for himas he held a stranger’s handand it seemed like a really reallylong timesince I’d seen him last. And it felt too flowery too say it to himbut I said those things you say right then,I’d never ever leave youI love you so muchI don’t know what I’d do […]
{originally posted 6/1/09} Yesterday, at my parent’s cabin, Asher woke up at 5:00 a.m. I didn’t want to wake up the rest of the house with screeches and screams, so I put Asher in the van and we went for a drive, not really knowing where we were going. We saw the sun rise, some sheep, some cows, and long stretches of road. It was a beautiful start to the day, even if I wasn’t at all happy to roll out of bed before the sun. We drove to town and picked up a coffee and some diapers. Then with nothing else left to do, we sat in a parking lot. Asher watched Wall-E while I read a book and sipped my mocha. We did that for quite a while, lazy and content, until Asher said, “Mama…beep beep.” And I asked, “Does that mean you’d like to start driving again?” He looked right […]
Miles – 4th of July parade R & S – 4th of July dinner at Nanny and Bapa’s our very own fireworks show it was obviously quite riveting {These photos are brought to you by You Capture at I Should Be Folding Laundry} And now for your Asher update:First of all, thank you all so much for your comments and emails, your thoughts and your prayers. We feel them.Asher hasn’t had much success with that whole clearing out thing, despite our dietal (totally a word) efforts. So we’re giving it until the end of the day, hoping for a fireworks-like explosion. *ahem*Hopefully that will solve the issues with his valve tube, things will start flowing as they should, and his headaches will disappear. If there’s no luck with the clearing out, I plan to call the doc in the morning.The first thing Asher said this morning when he woke up was that when […]
(In case you’re new-ish to comin‘ around this space, Asher (almost 3) has hydrocephalus, a condition in which the spinal fluid produced in his brain basically gets stuck. So. He has a valve in place near his cloggable (totally a word) ventricles, to drain the fluid. The valve is attached to tubing that goes all the way down to his cute little round belly. This is all on the inside.) For a couple of days Asher has been complaining of headaches. This is new, he’s never really been able to articulate his pain or describe it. He’s still a bit unclear in his telling of it (when asked where his head hurts, he runs his hand all over and around his noggin), but it helps that he can say things like he did today, when I came to his room for a good morning hello, to raise my mommy red flags, “Hi Mama. […]
He says, wash mine hands, Mama. So I hoist his nearly three year old booty up to my stomach and we lean in over the sink. The water is shivery cold and so we hurry and he starts to force exaggerated shaking and teeth chattering, dramatizing as he has a tendency to do. I grab the towel from the oven handle and we wipe wipe wipe together until I can’t help anymore because he’s got both of his little arms wrapped tightly around one of mine, one of his little legs following suit as he lifts it up off the floor to try to add it to the arm hug party. A chubby cheek presses the side of my wrist and he makes sounds that say he’s warming up with my arm’s willing assistance. Which is good because the other arm is busy reaching for coffee. My heart is filled with the goodness […]
Uh huh. Asher Gets Glasses. Take two: Let the bribery begin! Yes, that’s a sucker. One that came with a,“You can keep having treats like this oneif you don’t break your glasses.” Uh huh. That’s right. This is Project Bribe To Not Break… So far. So good. P.S. Yes, the last glasses (the busted up pair) were entirely different. You are not losing your mind. The ones pictured here are his back-up pair, already in use while we wait for a part from his broken glasses to come from DENMARK. And yes, the broken pair are being covered by a warranty. PHEW. Now let’s talk about how cute he is… Thank you for allowing me to pop up in your inbox and for reading my words, silly or serious. I appreciate you. ~Heather
Monday~November 2, 2009 Asher was just standing here driving me crazy, the way he was demanding a banana. He shouts and he screams! I sigh and boil. Then I turn to look at him and I see how he sticks his tongue all the way out to say nana, and it totally cracks me up. What Asher gives off, his contagious joy, even trumps sibling rivalry. Most of the time. It was right around this time last year that we found out he has hydrocephalus. (If you don’t know what that is, it’s what used to be called “water on the brain,” where valves are not doing their job of getting fluid to the spinal cord…in short. Asher had a brain shunt (a valve that works) put in last December.) From October, when we got the news, to December, when he had surgery, we really had no idea what to expect. I don’t […]
Tuesday~October 20th, 2009 It was about this time last year that we found out Asher would need a brain shunt for hydrocephalus. I’ll never forget that phone call, when at the beginning, I couldn’t process the severity of his condition, what the nurse was saying, and I thought it meant a mother’s worst fear could be happening to our family. But it wasn’t. It was hard and scary, and of course watching him go through brain surgery at the age of one was no walk in the park for any of us, but it wasn’t my worst fear, and I’m thankful for that every day. Now Asher is Mister Good-To-Go, waking in the morning and taking inventory on his household, “Bruddow go?” “Your brother isn’t up yet, honey.” “Tia go?” “The dog is on her bed.” “Oh.” “Daaaddyyyy!!!” He runs at him and throws himself in for a hug. He’s pure unsolicited joy, […]
Wednesday~August 26th, 2009 Asher had a very long doctor’s appointment today. We saw his regular pediatrician and talked at length about what to bring up at his appointment with his neurosurgeon in a couple of weeks. We also talked about his eyesight and made an appointment for him to see a pediatric eye doctor in a couple of weeks. There’s concern that he’s having some vision issues due to the alignment of his eyes, and because he regularly mistakes one object for another. (And because hydrocephalus can cause some issues with eyesight.) I for one think that Asher would be adorable in glasses… After the appointment we headed home and while the boys napped, Ryan and I packed and got ready for he and the boys to take a trip up north together. Without me. (Cue dramatic music.) They woke up and my three boys piled in the van. I saw them off […]
Friday~August 21, 2009 We’ve been waiting for words. He’s been waiting for words. He’s still screaming and stomping, frustrated with our not reading his mind. We’ve been guessing and shrugging and apologizing for not knowing. We’ve been explaining his non-response to strangers with, “He’s not quite into talking yet.” We’ve been waiting with the doctor who said his words aren’t enough, we’ll see. The words are still a bit stuck in his throat. But he’s finally trying. A little. Scuuuse-E, he says as he tries to squeeze by. Mmm–hummm, he agrees and UH EH, he protests. And then just like that, he said two things that make the waiting the easiest thing I’ve ever done. ASH…ER, he said as he pounded his chest and grinned. ASH…ER, spoken like two words,two perfectly clear little brilliant words. Then later, as I carried him to bed, nuzzling my nose in his neck.Honey, I love you, I […]
Tuesday~August 18, 2009 I have to admit something. I don’t really know very much about shunts. This contraption is IN MY CHILD’S BRAIN, and I don’t really know much about it at all. I know that we have the very best pediatric neurosurgeon, and I know that he puts me at ease every time we see him. I know that the shunt is a valve, opening and closing depending on the amount of fluid in Asher’s brain. And I know the shunt can malfunction for a number of reasons, but I don’t really know what all of them are. I’ve never googled “shunt malfunction.” I was too scared. I’ve been pretending that ever since Asher had surgery, he’s…well… fixed. Or at least a part of me is pretending that. Of course, when he vomits or seems exceptionally tired I think about a malfunction, but that doesn’t happen very often. For the most part, […]
Wednesday~August 12, 2009 Most of what I remember from when my boys were babies is a blur with flashes of emotion. I hate forgetting even the things that I try so hard to relish. Some of the things I do remember, I should probably forget, but then again, I don’t want to forget the things that hold us tight together for the enduring of them. With Miles I remember one particular day with crystal clarity. We were taking a nap when I woke up to strange gurgling and choking sounds. He was vomiting in his sleep, eyes slowly pulling themselves open, a look of nothing on his face. I sat up and turned him on his side and more and more the gasping and choking came, covering ourselves and the bed in wet. I picked him up and it just kept happening. I walked to the neighbor’s, asking if I was being a […]
Thursday~July 16th, 2009 Yesterday we made another trip to the doctor. Boy, you’ve spent a lot of the last two years in that place. This time, we were checking for a broken nose. You fall so much, child. I’m pretty sure the doctor is starting to wonder about us. So you’ll have an x-ray on Monday because it’s likely there’s a fracture in there. You poor thing. For your birthday? A broken nose? But you know what? You’re just so happy and strong, you don’t seem to mind a bit. The doctors and nurses love seeing you. They say there’s just something special about your happiness. They can’t believe how calm and peaceful you seem. They poke and prod and you quietly sit with me. They push on your shunt and feel all around your head and you kick your feet and snuggle me. You’re such a busy little guy, always climbing and […]
Wednesday~July 1st, 2009 Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, “Uh huh!” when asked if he’s dizzy. (which is hard to hear, but it’s at the very end-the part where he looks a little drunk from all that light-headed tootin‘ of the horn.) I can’t even really describe what it’s like for me to watch Asher enjoy life, his little personality blossoming […]
Wednesday~July 1st, 2009 Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, “Uh huh!” when asked if he’s dizzy. (which is hard to hear, but it’s at the very end-the part where he looks a little drunk from all that light-headed tootin‘ of the horn.) I can’t even really describe what it’s like for me to watch Asher enjoy life, his little personality blossoming […]
Wednesday~July 1st, 2009 Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, “Uh huh!” when asked if he’s dizzy. (which is hard to hear, but it’s at the very end-the part where he looks a little drunk from all that light-headed tootin‘ of the horn.) I can’t even really describe what it’s like for me to watch Asher enjoy life, his little personality blossoming […]
Wednesday~July 1st, 2009 Asher is especially fond of a toy trumpet we found at a garage sale. (Yes, I bought a second-hand toy a child puts his or her mouth on and then blows saliva into. Sure, it probably has many foreign germs embedded inside of it, but I bought it anyway, just because Asher liked it so much. Ahem.) Anyway, my favorite parts of the video are when he plays the trumpet through his nose (brilliant), and then studies where to put his fingers very closely (brilliant), and then lastly, how he blows and blows and blows and then answers, “Uh huh!” when asked if he’s dizzy. (which is hard to hear, but it’s at the very end-the part where he looks a little drunk from all that light-headed tootin‘ of the horn.) I can’t even really describe what it’s like for me to watch Asher enjoy life, his little personality blossoming […]
Tuesday~June 9, 2009 As the mother of a lovely little guy with hydrocephalus, I’m quickly learning that it’s hard to explain exactly how Asher’s brain shunt works without visual aids. People do ask a lot of questions, and I don’t mind that a bit. I’d especially love to help parents who are embarking on this “adventure” understand how it all works. It’s much easier to deal with something when it’s concrete in your mind and you know (mostly) what to expect. People are often confused about what part of the contraption is actually doing the work, where the tubing goes, and whether or not all of these parts are on the inside or the outside of the body. So first of all, for the most part, you can’t see a thing… Of course not, Heather, he’s all covered up (and the cutest thing I’ve ever seen). Oh, okay then. Even when he’s NOT […]
*If you’re new here and don’t know much about our youngest son, Asher, this post may be a little confusing. If you’d like, you could catch up a bit by clicking on The Noggin under Labels in the sidebar. There are plenty of Noggin posts there, and I’m sure they’d love to fill you in. Yes, they’d love it, because obviously, my posts have feelings. ~~~~~~~~~~ Yesterday, at my parent’s cabin, Asher woke up at 5:00 a.m. I didn’t want to wake up the rest of the house with screeches and screams, so I put Asher in the van and we went for a drive, not really knowing where we were going. We saw the sun rise, some sheep, some cows, and long stretches of road. It was a beautiful start to the day, even if I wasn’t at all happy to roll out of bed before the sun. We drove to town […]
Monday~April 20, 2009 It wasn’t until I heard other people say that my son was a boy with “special needs,” that I even considered this idea. I thought of Asher’s situation as something that happened, and then was “fixed.” Maybe I even thought that his shunt surgery saved him from having special needs at all. Because it did, for the most part. His hydrocephalus was caught at exactly the right time to prevent brain damage that would have effected his daily life more drastically. I wasn’t offended, hearing people describe Asher as a child with special needs, that’s not what I’m saying. I don’t think that’s offensive, since at some level, we all have special needs. Actually, it’s a little silly, but I was simply surprised, thinking “Oh yeah, I suppose he does have special needs.” Then recently, from an adult with hydrocephalus, I learned that “having hydrocephalus is like having a hang-over […]
Posted on Sunday~April 5, 2009 When I was in high school, we had a class called Home Economics. I’m not even sure exactly what it’s called today…Family Science? Is that right? Anyway, I remember many things about Home Ec., like the fact that my kitchen partner was my boyfriend, and when we broke up I tearfully asked the teacher for a different partner. But that’s a whole other story. These days, the students are asked to carry around a life-like computerized doll for a week, to teach them what it’s like to be responsible for another person. The doll cries every once and awhile, needs changing and feeding here and there, and even wakes in the night. We didn’t have those dolls in my day, so we were required to carry around eggs. With cute little faces on them. Yes, just plain old white eggs, to tuck away in our lockers and backpacks. […]
Posted on Tuesday~ March 17, 2009 I had to stop and smile today as Asher made his way across the kitchen floor. Stomp-stomp-stomp. He loves to stomp. If wearing shoes, he can be found trying to find the best place for foot pounding. It makes him smile. This child loves to hear himself. It occurred to me today that he loves everything about himself and everything about life. Of course, at age 1.5, he doesn’t have the capacity for much introspection, but I’d like to think there’s more to it than that. I believe he was born with a gift that will lead him to live out loud if given the chance. I believe that because I think it’s true for everyone. This passionate little guy impresses me even while his stubborn spirit and temper stretch me every day. Asher has been through more than many folks his age, and yet his joy […]
Posted on Friday~March 13, 2009 GOOD NEWS! Here’s what we learned during Asher’s day of testing yesterday:The ventricles that were over-loaded with spinal fluid before his shunt surgery are just a fraction of the size they once were. It amazes me that our bodies can spring back and recover from such things. When Asher’s hydrocephalus was discovered, the over-flowing ventricles took up over half of the upper part of his brain, pushing into those lobes like a hand squeezing a sponge. But now, everything appears to be back in order. His valve is working as it should!As the janitor at my college used to say, “PRAISE-A-LUIA TO YA!”(I’m pretty sure there’s a Hallelujah in there somewhere.) So now, we plan to carry on with life as usual. And that sounds really good. We’ll gobble up moments like this:In which the book Asher is reading apparently says he can have a pacifier forever, In […]
Posted on Friday~March 13, 2009 GOOD NEWS! Here’s what we learned during Asher’s day of testing yesterday:The ventricles that were over-loaded with spinal fluid before his shunt surgery are just a fraction of the size they once were. It amazes me that our bodies can spring back and recover from such things. When Asher’s hydrocephalus was discovered, the over-flowing ventricles took up over half of the upper part of his brain, pushing into those lobes like a hand squeezing a sponge. But now, everything appears to be back in order. His valve is working as it should!As the janitor at my college used to say, “PRAISE-A-LUIA TO YA!”(I’m pretty sure there’s a Hallelujah in there somewhere.) So now, we plan to carry on with life as usual. And that sounds really good. We’ll gobble up moments like this:In which the book Asher is reading apparently says he can have a pacifier forever, In […]
Posted on Friday~March 13, 2009 GOOD NEWS! Here’s what we learned during Asher’s day of testing yesterday:The ventricles that were over-loaded with spinal fluid before his shunt surgery are just a fraction of the size they once were. It amazes me that our bodies can spring back and recover from such things. When Asher’s hydrocephalus was discovered, the over-flowing ventricles took up over half of the upper part of his brain, pushing into those lobes like a hand squeezing a sponge. But now, everything appears to be back in order. His valve is working as it should!As the janitor at my college used to say, “PRAISE-A-LUIA TO YA!”(I’m pretty sure there’s a Hallelujah in there somewhere.) So now, we plan to carry on with life as usual. And that sounds really good. We’ll gobble up moments like this:In which the book Asher is reading apparently says he can have a pacifier forever, In […]
Posted on Friday~March 13, 2009 GOOD NEWS! Here’s what we learned during Asher’s day of testing yesterday:The ventricles that were over-loaded with spinal fluid before his shunt surgery are just a fraction of the size they once were. It amazes me that our bodies can spring back and recover from such things. When Asher’s hydrocephalus was discovered, the over-flowing ventricles took up over half of the upper part of his brain, pushing into those lobes like a hand squeezing a sponge. But now, everything appears to be back in order. His valve is working as it should!As the janitor at my college used to say, “PRAISE-A-LUIA TO YA!”(I’m pretty sure there’s a Hallelujah in there somewhere.) So now, we plan to carry on with life as usual. And that sounds really good. We’ll gobble up moments like this:In which the book Asher is reading apparently says he can have a pacifier forever, In […]
Posted on Thursday~March 12, 2009 Today Asher has his three month follow-up appointment. Yes, it’s been THREE months since his brain shunt surgery! He’ll have a catscan, xray, and a bit of a drive to see his neurosurgeon to look over the tests. Big, long day for the Ash Man.All prayers and well wishes are much appreciated. Good test results would obviously rock the party. (This photo was taken last summer.) (If you don’t know Asher’s story, you can click The Noggin under labels in my left sidebar to learn more.) As we take off for the day, I’m going to steal an idea from Erin at If You Give a Mom a Moment. Here’s how it works: I’m going to ask a question at the end of this post. The first commenter will answer the question and leave another question in their comment. Then the next commenter will answer that person’s question […]
Posted on Thursday~February 12th, 2009 I’ve had the same person cutting my hair for about five years now. She does a really good job normally. Not so much on a particular day a couple of weeks ago, but oh well, it’s just hair. I look much like a mushroom, but I’m not that concerned. I’ve never been all that concerned with how I look. Sure, in high school and college I compared myself to the stylish girls and made half-hearted attempts at keeping up, but I never really cared. It was easier to get away with not caring when I was younger. I’m not sure how it happened, but I’ve started to feel a bit ashamed of how I look. Not in a way that concerns what other people think, just in my own eyes. While I was getting my hair cut that day a couple of weeks ago, my stylist started laughing […]
Posted on Tuesday~January 27th, 2009 Asher with his “My Mom Rocks” custom made pacifier, courtesy of the lovely Charrette.(That lady totally rocks.)______________It’s been almost two months since Asher’s surgery! Thank you for continuing to ask how he’s doing. I don’t find it intrusive at all. We appreciate that our bloggy and real-life friends think of us. (If you’re new here, you can click on The Noggin under the labels in the left sidebar to learn more. Asher has hydrocephalus, a condition where fluid doesn’t drain properly from the brain to the spinal cord. He had a brain shunt put in recently.) At his appointment last week, the only “concern” was his language development. He’s falling a little behind there, but then again many kids do. When he’s six and talking our ears off, I’m sure we’ll think it was silly to have worried. So we’re choosing not to worry. Now that Asher has […]
Posted by Heather of the EO~Monday, December 22nd, 2008 Asher had his follow-up appointment last Friday. The Nurse Practitioner thought he looked great. He’s a total post-surgery rock star. He does put his head down on the floor with his butt in the air, trying to feel the pressure he used to feel, but I was informed that this is absolutely normal. I assume it confirms that he’s a genius. He doesn’t know how he feels about his new brain, so he tries to bring back the comforts of having a full head by letting the fluid rush in, like when you do a head stand (I’m pretty sure everyone does those on a daily basis). Turning himself upside-down is fine for now, but the RN did advise that if Asher continues to do this, he will need his shunt adjusted so the fluids move at a slower pace. In short, everything’s cool […]
