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WELCOME, GUEST |
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(2 members)
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niylnnrae @a…6 |
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LUCKY LUKE
Page's7 |
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WHAT'S IN MY HEAD
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Jan 11, 2011 05:31pm (EST)
I have a constant blog running through my head all day long most days, but when I finally sit down to write it out, it disintegrates... Why is that? Maybe it's because every time I sit down, my kids and babies think I must be bored and find something for me to do. 
I took on a full-time infant boy (cousin's son) starting yesterday. My brother also brought my nephew, so... Wow. A 6 week old and a 6 month old along with Nora... exhausting, to say the least. Thankfully, I don't have them both every day. My nephew only comes about 3 days a week. It's nice having babies around to cuddle on, but A LOT of work. It's forcing me to get more organized, which can only be a good thing. Slow progress, but progress nonetheless.
I'm continuing to struggle with trying to understand how to help Luke better navigate in his world and ours. It's hard when there's no map to follow. It feels like we're in a maze, but the maze keeps shifting so that just when you think you've found the right path, WHAM!, another dead end.
It's so frustrating. Sometimes, he seems SO typical that I think that I must look like an idiot when I talk about issues we struggle with. But then there are the times when the issues are out there to be seen by all. Ironically, I also feel like an idiot at these times because I haven't yet figured out a way to help. I'm still 95% sure he has high functioning Aspergers, but because of the spectrum of behaviors, it seems a diagnosis of that sort is unreachable. If he were diagnosed, it would open up another realm of services for him. As it stands, it's like we're seeing that realm, but through a thick, unbreakable window. Just out of reach.
He has a re-evaluation coming up. They will be doing several tests including more IQ tests and some social/speech/language testing. We'll have his annual IEP meeting at the end of February and discuss the results and anything new he may qualify for. I'm just hoping that he doesn't lose any of the few services he has now. 
Last week, Luke and I went to Disney World with my mom. There were definitely some ups, but also a good dose of disappointment. Not in Disney World, that was awesome. I was disappointed because I had preconceived ideas of how wonderful and how much fun it would be to be able to spend all this time with Luke (and Mom), and how much he would enjoy it. What I didn't think about is that it's Luke. Luke is Luke no matter where we are. Disney is Magical alright, but not so much that it could change his behaviors or fears. So - I wasn't disappointed in Luke, or Disney... just in my own irrational expectations. There was one point where *I* had a bit of a meltdown and felt like the WORST parent ever. It still makes me cry to think of it... On the upside, I now know that I have a partner to go on all the big rollercoasters with! He LOVES the big rides! He also got to lead the conga line with Minnie Mouse in the Celebration Parade. That was probably the high point of the whole trip. She held his hand the whole time and loved on him quite a bit. Unfortunately, I haven't figured out how to share those photos yet.
Well, the little one beckons... Thanks for being here, Share.
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Posted by Page's7 | Comments: (1) | Permalink
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THE FINAL TWO
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Dec 27, 2010 05:56am (EST)
I just tucked in my last two year old. Just typing that almost physically hurts. Tomorrow, at 12:01 p.m. my bitty baby girl turns three. I can't wrap my mind around how fast it's gone and I can't find words to describe the emotions around it all.
She brings so much joy, woven together with miracles and peace and wonder and also with strands of fear and heartache and tears that random memories bring of the road that leads from the twinkle in my eye through her homecoming and even up to tonight. A blink of an eye, and yet in ways what seems an eternity...
Eh.. like I said, the words aren't there.
We were going to have a Birthday Tea Party for her, but decided that it would likely be lost on her this year. We'll save it for when she has little princess friends to invite. This year, we took her into the party store and let her choose. She picked a Strawberry Shortcake theme. She's just been getting into that over the last few months. It's fun to watch her get excited and really know what the whole Birthday thing is all about.
Her party should be fun, we've invited several family members to celebrate with us. My little nephew and a cousin's brand new little boy will be here, and my very pregnant sister in law. She's due January 13th. (a girl this time) Just and aside: It's amazing how many babies are coming along right now. My nephew this past July, then a cousin's in November, another cousin's in December, s-i-l due in January, step-sister due in February, close friend due in March. It's like I've joined the Baby of the Month Club! Bittersweet, really. They've all been healthy babies/mommas so far, and I pray that it stays that way-- but it makes me wonder again why they can have that so easily and I wasn't able to... Oh well. I don't know why I bother questioning something there will not be an answer to.
Anyway, it will be a happy, baby filled Nora Day party and that's all that counts. I'll post pics when I'm able. I got a video camera for Christmas, so I may even be able to figure out how to share some footage! 
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Posted by Page's7 | Comments: (3) | Permalink
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FEELING DECEMBER
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Dec 14, 2010 03:51pm (EST)
In so many ways! Brrrrr, for one thing. It's very cold here! I know it's MN, but c'mon! Our high yesterday was supposed to be 0. We didn't make it. Today we're supposed to see single digits, it's not happening yet! The nice think layer of ice under the 16+ inches of new snow is not in a hurry to melt off the roads, either. I HATE driving on ice, so I've not gone anywhere since we got home on Sunday.
Saturday afternoon, as the blizzard was in full swing, Grace mis-stepped at the top of the stairs and fell down nearly the full flight. She hurt her lower back badly. It was swelling and she was unable to move without excruciating pain. Because of her spinal deformities, we were not willing to take a risk, and decided to call an ambulance. (Good thing, because our van never would have made it the 15 miles to the hospital it that storm.) Poor baby was in so much pain...
They did xrays almost immediately and they showed no fractures. They offered to keep her in the hospital for pain control, but she seemed to be doing okay with the oral meds.
Thank goodness my husband has a 4 wheel drive truck, otherwise he wouldn't have made it to pick us up. It's small, but it was enough to get us the 3 miles to my mom's house. The highways were closed by the time he got to the hospital, so there was no going home even if we wanted to- which we didn't.
She's been in pain since. She wanted to go back to school today, so I let her - she couldn't even carry her own books... I'm a bit worried. The school nurse just called and wanted to know what happened to her back that she had to stay in the hospital. What??? "She didn't have to stay in the hospital." The nurse then told me that Grace was in this morning and told her that she'd been in the hospital for 3 days.   Lordy... I don't know what I'm gonna do with that girl...
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Christmas is soon to be here. We have most of the shopping done. I did a lot of it online. We didn't get a whole lot of gifts, but what we got for the kids will make it worth it to them. The tree has been up for a week, but doesn't have any lights or decorations on it. I've half a mind to take it back down and forget it this year... I would if it weren't for the kids. The only other things we have up to suggest it may be Christmas time is the Nativity scene and the Christmas countdown calendar. ... I'm trying to get on the ball. There have been so many things that seem so overwhelming that there are days where I can scarcely get out of bed, but I'll pull through- I always do. There is no other option.
I've also been trying to plan Nora's birthday party. She's going to be 3 already. I can't believe it. I feel like we're so far away from her baby-ness. It makes me heartsick for the days that I could and would spend an hour or more rocking and singing her to sleep. When she fit snug in my arms rather than spilling over my lap... I'd hold her and just stare at her after she'd gone to sleep, thanking God that she's real and she's mine. She'll still snuggle up with me once in a while, (and believe me, I hang on to every second I'm given!) but mostly, she's busy being a "big girl". I still thank God for her of course. 
Our new dog is fitting into the family nicely. Like he's always been here. He's one of the few "common grounds" that our family has. I'll take any I can get at this point.
There's more, but I've written a book already, so I'll keep the rest.
Love!
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Posted by Page's7 | Comments: (2) | Permalink
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IT'S JUST ME
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Nov 30, 2010 02:44pm (EST)
There are so many things going through my heart… I’m not sure where this entry is going, so bear with me if you will.
We had the kids’ conferences a couple of weeks ago. Luke’s teacher had nothing but good things to say about Luke. All of his grades are good, some even exceptional. He is bright, involved, stays on task, keeps others around him on task, does everything asked of him and doesn’t complain about anything. Mr. M. said that if he had a whole classroom full of Lukes, they’d be halfway through their course material for the year without issues.
The only concern was Luke’s final math grade. It was a B-. He does extremely well on his homework, but not on his tests. Ben and I knew right away what the likely cause was. He hates to be last, so we figured he’s seeing other kids finishing and hurries to keep up causing him to make mistakes. Mr. M. said that now that we mention it, he’s sure that’s what’s happening. He made arrangements for Luke to test in a different room and it seems to be working. (This accommodation is on his IEP on an “as needed” basis.) Oh, another “negative” (if you can call it that) was that Luke’s reading/language scores are so high, it leaves little room for improvement. I’m guessing there will soon be talk of placing Luke in an accelerated program for that. In fact, if he wasn’t in special ed. I suspect he would already be in one.
The conference left me feeling proud, of course, but also like the worst parent ever. Why is he perfect at school? Why does he not have issues there? (Aside from social stuff, that is.)
The answer is clearly… me. I am the problem. Luke needs a strict schedule and very clear expectations to function at his highest abilities. Even if I think I’m giving him clear expectations, apparently I’m not doing it in a way that works for him. And a strict schedule? Forget about it. He doesn’t get that here. The battles with him here at home have been getting bigger and more difficult. This morning, I woke him up 4 minutes later than usual. The morning was shot. He shut down before he even got his legs over the side of the bed. The bus ended up having to wait for him while he walked at turtle speed down the driveway because the wind touched the back of his neck and made him cold. … Yeah. But you see, it was ME who woke him up 4 minutes late.
I always try explaining to him that the whole world doesn’t run on an exact schedule and that he can’t expect everything to be exactly the same thing every day. I tell him that real life isn’t like that and he needs to learn how to deal with changes… Even as I write that, it doesn’t seem like such a bad thing to say… But I think about it… I’m trying to get Luke ready for a “normal” life. I’m trying to help him succeed in *our* world, *our* society. But that’s not really the world he lives in. These concepts are foreign to him. The chaotic patterns of our everyday lives may be functional, and even beautiful to us, but they make no sense to him. They never will.
I get so upset when I feel like someone doesn’t “get” him. But it’s me. It’s been me all along. Instead of helping him walk through his world, I’ve been forcing him to stumble through mine. This epiphany is immense… and so is the heartache that comes with it.
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Posted by Page's7 | Comments: (1) | Permalink
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JUXTAPOSITION
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Oct 18, 2010 03:40am (EST)
Yesterday was Bethany's first HIGH SCHOOL homecoming dance. Let me just warn ya'll... It like prom now. WTH? Seriously... It's kinda ridiculous. BUT, we did it anyway. We found the dress, the shoes, the whole nine yards.
She didn't have a "date" per se. She went with a large group of friends, some had dates, some didn't. Not that she's really allowed to date, anyway. I mean... She's not even 15 yet. 
Before the dance, the whole group went to a park for pictures. It was a chilly, but beautiful evening. The sun was beginning to set and the fall colors are still enough there to be pretty. The girls all looked beautiful, the boys handsome.. But all of them so grown up. Much too grown up.
Nora came along with Ben and I for the pictures. She heard "park" and beat us to the car!
As we stood there, wrapping up the pictures, Nora had decided she'd had enough looking at all the pretty dresses, and she wanted to play on the playground. All the big kids had come to the playground area for some silly pics.
I stood there, with my beautiful, 6 foot tall (with the shoes), much too grown up teenager to my right, and my sweet little bit of a thing to my left. Just running and giggling and playing... Reminding me very much of another little girl, not so very long ago..
As I looked from left to right and back to left, I was accutely aware of how short a time had passed since I helped Bethany up those same ladders, and how short a time it would be before I would help zip Nora's dress and tuck that last wisp behind her ear as she walks away in her fancy dress and high heels...
*sigh*
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Posted by Page's7 | Comments: (7) | Permalink
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THE FACT IS...
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Oct 12, 2010 01:48pm (EST)
I posted yesterday about Nora, but deleted it. I'm struggling to explain why this new discovery has hit me so hard. I realize it may just sound like unfounded whining to some, but... Well, I really can't explain...
I copied and pasted from my other blog. Though it's still not quite right, I think it does a better job.
Nora's doctor called back today about her MRI. She does not have a tethered cord. However, she does have some spinal fluid in the middle of her spinal cord which isn't normal. Neurology was consulted, and it appears there's nothing they do about that unless it causes neurological symptoms. They would like us to watch her closely and come back in a year if we haven't had any issues by then.
The fact is, I know that this isn't the worst news on the planet and it's good that she only has to come back in a year.
But here's the thing. Even though I know this- Even though I know that in the grand scheme of things this bit of news, right now today, seems very small and not serious... It still makes my heart ache. Now I have to wonder. Now I have to try and discern regular kid things from not-so-regular kid things. I have to wonder every time she falls down, or goes too many days without pooping or pees her pants. Now I have to be afraid to sign her up for gymnastics. I have to wonder if this nothing is going to turn into something. Now I have to see her dancing around and not just love that she's dancing around, but in the back of my mind will be wondering if she'll always be able to dance.
Knowledge is power. Well you could have fooled me...
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Posted by Page's7 | Comments: (5) | Permalink
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MUNCHKIN
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Oct 10, 2010 02:29pm (EST)
I didn't realize that I hadn't posted about Luke and the play here. I think I put it on my other blog. Sorry about that.
Luke does indeed get to be a munchkin in the play. On the first couple rehearsals, they tried out for individual parts, but he will just be a munchkin in the crowd. Well, actually, it looks like she's putting him in a second story window. I'm thinking maybe she did it that way so he won't really have to worry about learning so many dance steps, and he won't get knocked down.
He's still pretty excited to be a part of it. And I'm still pretty excited for him, too. 
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Posted by Page's7 | Comments: (3) | Permalink
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LONG READ- SORRY.
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Oct 08, 2010 10:44pm (EST)
Nora had her MRI today. It went a bit differently than I expected. We got there and they had us taken to the PACU. I asked why and they told me it was because of the difficulties they had last time she was intubated. WHAAA??? When the anesthesiologist came in, he asked me if I knew why we were up there. I told him they said something about the intubation last time. He, said, yes. It’s documented that she has a difficult airway to navigate, so they asked us to do it up here. I told him I wasn’t aware that they had difficulties last time. He said often, they put it on the chart, but don’t always feel a need to tell the parents. Oh… So, he went on to tell me that she has an unusually small jaw and wondered if that was what contributed to it. I really like this guy. He was asking me all the usual questions. Asked about recent illness. I told him that she’d been running a temp since yesterday with no other symptoms of illness and that I had treated it with motrin. He wasn’t too concerned as long as she didn’t have a cough. As he checked her out, he asked if she had any blood tests ordered. No she didn’t. He asked if I would agree that she looked pale. Yes. I did. She was pale and had dark circles around her eyes. He told me he would feel better if we got a CBC on her while she was asleep. So they did, as far as I know. I wasn’t able to talk with anyone after her scan because I was with Luke at his appointment a few blocks away. My mom was there with Nora, but they didn’t tell her anything helpful.
Man. It was a day. I was worried sick over the thought of Nora being a “difficult airway” and all the usual anesthesia worry. I was feeling guilty for not being there when she woke up, but would have felt very guilty if Luke had missed his appointment. It was one of those days where I needed more than one me. In any case, Nora seems to be doing okay now. She’s still pretty loopy and still is running a close to 103 temp, and looks like h-e-double-hockey-sticks. But her Super Princess attitude is still holding strong.
Luke’s appointment was good. His xrays looked “perfect” and his wounds were healing well. He’s out of a cast, but unable to get a new AFO until next week. For now, he’s not really supposed to walk around on his leg without the extra support. He couldn’t if he tried. He tried. So for now he’ll have to deal with having it wrapped with an extra large ACE bandage for support. It seems to be doing okay. His leg looks so different now. His toes point forward! (mostly) His heel is flat on the floor… just strange. Good, but strange. I wonder how he’ll ever be able to use it after what it was like before, but he will. He always does.
My own health has been faltering lately. There are more issues than I care to mention right now. I know if I don’t start taking better care of myself it’ll kill me. I feel like I’m rapidly running out of time, and it scares me… and yet… here I am, not doing everything in my power to help myself. Ugh. Enough about that.
I wanted to say thanks to everyone who replied to my last post. I appreciate that you all take the time to let me know you care. And Stacy and Carrie, thank you for sharing. Your posts definitely put me at ease about the next steps, whatever they be.
xoxoxoxoxo
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Posted by Page's7 | Comments: (3) | Permalink
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