Sunday, February 28, 2010

Made My Day.....

While holding up a card to Daniel that had his name printed on it.

I said: "That says Daniel"

he said: "aniel" with a big smile

Close enough for me!!!


Saturday, February 27, 2010

It's Almost March - St. Patrick's Day

March is right around the corner, and with March comes that special Irish holiday
St. Patty's Day which is the 17th.

Are you going to have a St. Patty's Day party? Are you going to be one of the many out on that bar night? Just wanna have fun and be "that guy" who is so cool? Then why not help support a good cause at the same time (all funds go to Daniel's medical bills)??

How does that sound for a good spiel on selling some St. Patrick's Day crowns? What a sales person I am eh?! Anyways, I have these really cute, original "BetterThanNormal" special holiday crowns for sale right here and here. They have an adjustable velcro strap on the back to fit young kids to the adult who is young at heart. :)

Don't you want to be original and have a one of a kind crown that will make you stand out in the crowd? Be a trendsetter and get your crown today!!

Friday, February 26, 2010

We need sun to grow...

You know your child has had a big growth spurt when you have to dig out the tools to make adjustments to all of his equipment!

Yep, every single piece of equipment needs to be adjusted in one way or another - guess what we're doing this weekend?!?!

I so want the snow to be gone so we can get his bike out again, it would be WONDERFUL on his legs.

I wish there was no snow, I wish there was no snow, I wish there was no snow.....
There's still snow outside!
What happen to my magical powers???
(for the love of Pete, whatever you do don't ever look up "magic wand" images on g00gle....sheesh everyone needs to get their minds outta the gutter!)

Monday, February 22, 2010

Everything Out on The Table

One would think that when we got Daniel's diagnosis that I would say that is when I hit rock bottom in the emotions category. Probably at that time I thought it to be also. When I think back to that time, which happened to be 4 years ago this February I don't remember feeling quite as low as I do now.

Maybe its a delayed reaction?

Maybe I'm just hitting rock bottom now?

Maybe I'm just tired emotionally?

Maybe I can't handle reality of what life is?

Maybe I am just overwhelmed and I don't know what to do next?

Maybe I just need to change some things in my life/schedule.

Funny, this is suppose to be a blog about Daniel and here I am spilling my guts about being depressed. I suppose it effects Daniel because I'm his mom and he is with me 24/7, and I am probably dragging him down with me.

Maybe it's because I'm realizing that I am not the super mom that I wanted to be.

Maybe it's because I am realizing that no matter all the therapies and doctor appointments I take him to, I cannot "fix" what people think the problems are. And that what "the people" think are the problems are some of the things I love the most about Daniel and I am ashamed of that? Examples: He can't walk. Yes, I'd love for him to walk, but if he did he'd be a typical 4 yr old who is running around getting into everything. What I love about that he doesn't walk...He still likes to snuggle, and I get to hold him and carry him. I get that closeness that most parents have lost by now because their child is older/larger.

I have not lost my mind totally. I realize I am depressed and I am in the process of fixing it. But for people who have really been depressed for days on end, clinically depressed, not just having a bad couple of days type depressed, you know that it is hard to fix it. Medicines don't do the full trick. They aren't happy pills, they kind of just make it so you aren't losing it daily and crying. They are suppose to give you that even keel, give you a little energy. I have yet to seen the energy component come into play yet, but that is being addressed with treatments for severe anemia and bad CBC/hemoglobin counts. I am hoping within the next few weeks this part will be fixed too. I am trying...little steps.

I use to say when people we depressed "Snap outta it". Well its not that easy, I wish it were. I use to say "It could be worse, you're not as bad off as most people". Well to a person who is depressed let me tell you first hand - those comments don't help! When you feel like there is a problem with every aspect of your life and its an endless loop - one thing affects the other thing so your head is spilling and you have no idea where to start...really, it doesn't help. The comments or the feeling that "oh crap I've now disappointed that person and they are thinking I'm no good" feeling gets added to the list.

Nobody else can make things better, you have to want to do it yourself. You have to want to pull yourself out of the bottom of the well. Sometimes you just need something/someone to grab onto to pull you out. Sometimes you just need help making one little change and things will fall into place. Sometimes all we need is one little success to feel better.

WHY am I posting this you think? Well a few reasons - 1) I'm tired of faking it. :) I'm not happy with everything, I'm not a superhero mom 2) Daniel is NOT the only person in this family with a "handicap" his just happens to be more visible than mine. And sometimes families have more than that is on the surface to deal with. 3) This blog is about a family dealing with a child with special needs and I have been very bad at updating it with what is going on lately. When mom gets out of whack and she is your main caregiver during the day that means Daniel gets out of whack too.

So we are DE-whack-ifying starting today and we're getting everything out on the table and off our chest. Because sometimes we are not as our title reads : "better than normal". Sometimes we are "$hitter than normal" and that is ok too! (just not for long periods of time!)

Maybe its because I have been looking at the negatives in life instead of the positives...

yes, I think that is probably part of it.

Maybe its because I have been thinking I don't have choices and I am stuck.

well, I am not stuck. I am not the only person who has ever felt depressed and I shouldn't be ashamed of it. Sometimes people need help from other people, and its ok to ask. Sometimes life is overwhelming and we all have different levels of what we can handle. I am not a failure because I am having a difficult time. I am not a failure or love my child any less because I wish things were different. I could not love my child more - but there are things I wish were different.

And to anyone else out there feeling that if they voice that they wish things were different for their child, that their child was "fixed". You are not a bad parent for voicing it and I for one am sure you love your child.

Anyways - its out of the table...I'm depressed and everything isn't sunshine and happiness.

(see my head poking out of the hole? I haven't drowned yet!)

Wednesday, February 10, 2010

Be Aware of The Little Guy...

Daniel LOVES people, he likes to gibber jabber with them. I love it because he is learning to say "hi" to people at the appropriate times. It is difficult for him for a few reasons; the processing time of the brain, he needs to remember how to form his mouth, and then the amount of air that is needed to push out the word "hi". It is a lot for a child with CP let alone paralysis of his mouth/jaw and throat. So when it does come out its a little bit louder than a whisper. If he's really excited it sometimes gets louder but then the tone in his jaw kicks in and it doesn't come out sounding like "hi". But he tries really hard.

That being said, when we are sitting in the waiting room for our turn at the appointment and you see a cute little guy staring at you with a grin ear to just might be Daniel and he is waiting for you to acknowledge that you see him and that you heard his whisper of a greeting.

Do me a favor, smile at him and say hello!

Otherwise he is going to try to jump off my lap and want to walk over to you which will consist of me in a crouched over position helping him move his cast deadened legs until he gets to you. At which point you will finally look over at him and he will again whisper "hi" and I will fall over dead with a broken back! Then where does that leave us???

Thank you, and good day! :)

Tuesday, February 9, 2010

Casts, Casts and More Casts

We are in week 4 of the serial casting.
Its a love/hate relationship.
I love that it is working and doing the stretching (we are currently at 14- "normal" is 15- we started at 0).
I hate that they are heavy, bulky and get in MY way. Daniel doesn't seem to mind. He's easy going like that. He just goes with the flow, I love it.

We have until the 22nd and then he will be done. He will start wearing night splints, but I think we can live with that. He got casted for those last week and picked out some pretty outlandish color combinations. But hey, they are only for night time, so might as well have fun with them!

We have been doing the home-schooling but I'm not as strict as I would/should be with it. Thank goodness that the school district is still coming to the home twice a week with a teacher/speech/PT & OT!! They are a great group of woman that come out and he really enjoys it.

On another note- we got the results back for Daniel's VEP & ERG tests.
I am very happy to say that the last line reads: This was a normal visual evoked potential as well as ERG study. That is a nice thing to see!!

Well I'll leave you at that and not overwhelm (or bore you) with the updates. Hopefully I'll start to get back into the groove of updating more frequently.