LJ’s Helping Hand

We’ve been working a lot on the foundation.  Although we haven’t even done our first event yet, I feel a sense of accomplishment.  

Ever since LJ “graduated” from Early Intervention, I’v’e been wanting to help others.  The therapists we had helped us through everything.  The blogs I read gave me a sense of community.   My readers gave us support.

It’s amazing how many children out there have special needs.  We’ve only just started this foundation and I’ve already received a few emails.  Mothers who feel so alone and isolated.  Thrown into this “special” world where only those of us who are already there, understand.  

In the beginning, I wanted to help get equipment or therapy insurance wouldn’t cover for families.  But after thinking about it, I realized I wanted to do more.  I wanted to lend an ear.  Some encouraging words.  I wanted to let other “special” parents know that they are not alone in their struggles to do whats best for their child.  That their thankless sacrifices aren’t unnoticed.  That someone knows how hard their battles can be.

Another goal of mine is to educate those who care about these special families.  Whether they are friends or other family members.  People are so uncomfortable with those who are different.  They’re afraid to say the wrong thing or just don’t know what to say.  They don’t know how they can be supportive.  They end up just avoiding the subject all together.  To me, that’s the worst thing you could do.  It’s like you’re pretending we don’t exist.  I’d rather you say the “wrong” thing and know that you cared, then nothing at all.

I have to remind myself that I was once like them.  I didn’t know there was another “world” out there.  LJ opened my eyes.  I wouldn’t have know what to say if the roles were reversed and it was my best friend who had a child with special needs.  I wouldn’t have know that saying nothing was hurting and isolating them. 

My goals for the foundation may be a little broad but the response to our Facebook page alone is proof enough that we’re on the right track.  That there are a vast number of families out there feeling lost.

And, I’m happy to say, there are also an equal amount of other families wanting to learn how they can help.Image

I’m back!

I never intended to leave for this long.  Looks like life had a different plan for me.

I’m now happily married to my soul mate, Bryce.

I had a beautiful baby girl in November.

Sofia

I have a first grader…

LJ’s first day of first grade

And a preschooler…

Noah’s first day of preschool

I’m glad to be back in the blogging world.  There are so many families I miss keeping up on.  Please be sure to check out LJ’s Helping Hand Foundation.  We’ve just started and can use as much support as we can get!  Be sure to “Like” us on Facebook.

Happy New Year!

We survived the holidays.  This time of year is the worst for me.  I can’t help but think about Grandma and Grandpa and the many family holidays we spent together.  I often wonder what they’d say if they could see me now.

To add to the stress of the holidays, Louie and I broke up.  It’s not something I’d really like to get into.  It was my decision, albeit not an easy one.  It’s been an adjustment.  And despite what other people see, it hurts me too.  I just need to be strong for my boys and me.

It’s been a lot to deal with.  The boys were sick for 2 weeks with that stomach bug that was going around.  24 hours of vomiting and 14 days of diarrhea.  I didn’t get sick, thank goodness, but I was so exhausted.  I’ve never done so much laundry in my life.

I never imagined my life here at 25, unmarried, with 2 boys, 1 with special needs.  I’m so thankful though.  My boys are the light of my life.  They make me strive to be a better person.  They saved my life in so many ways.

Next week, I start school.  I have a few hurdles to get through in the next couple weeks but I know I can get through it.  

Have a safe and happy new years.  I’ll be glad when 2010 is officially over.

Updates

I don’t even know where to start.   Life has been… hard, different, sad, busy.  It’s been a couple months so here are some things that have been going on.

  • LJ got his Botox in October.  They raised the dose since he’s gained almost 9 lbs since his surgery!  Every time we go into this appointment I worry about it’s effectiveness (it decreases after each use).  But it’s still working very well! 
  • A few weeks ago I get a call from the hospital’s financial department (never good).  Turns out they were letting me know that our state Medicaid will no longer be covering Botox in the lower extremeties.  Honestly, WTH?  What could possibly be the reason to justify this BUDGET cut.  It’s so clearly has to do with money since the rest of our family has been waiting to to get Medicaid to for 5 months.  I think they’re waiting till the beginning of the year.  Luckily, I know we qualify for financial assistance so this shouldn’t be too much of a problem.  But I did cry after I got off the phone with her.  Not for us, because we’ll figure it out, but for other families.  The financial lady told me that a lot of families were very upset. 
  • The morning of October 31, two of my friends died in a car accident.  I won’t go into much detail but it was like a slap in the face.  I dated one of them in high school and although we didn’t see each other much, we were still friends.  It’s heartbreaking that they were both such young, fun-loving people.
  • Another issue that I won’t talk about yet has to do with our family.  I’m just not ready to go there yet.  But it’s heartbreaking.
  • On a good note, I was published!  Remember the launch event I went to where I met the editor?  It was a lot of fun to write the article and hopefully they’ll have it on their website soon.  I look forward to staying involved with the magazine. 
  • I’m starting school in January.  When our friends passed, I started seeing things differently.  I was just making it through life.  I’ve always talked about going back to school but I was tired of talking about it.  I’m so excited that I finally made a decision on what I want to do.
  • Louie went with his dad and got a hospital bed from a very generous family up in WI.  It’s awesome!  What’s even better is that Noah now has a crib.  I moved him into LJ’s room last week.  LJ fussed till 10:30 before Noah finally woke up and cried with him till 11:00.  I’m sure it will be an adjustment for them but I think they both love their new beds.
  • LJ had his orthopedic follow up appointment last week.  I thought for sure she’d say surgery this time.  Instead, she said his hips actually looked BETTER and to keep doing whatever it is we’re doing!  Completely different attitude then the first time we saw her.   Gotta love doctors.

I’m sure there’s more.  My brain has been on overload but I’m hoping by this weekend I’ll be able to relax.  Probably not, though, since Christmas is just around the corner!

Field trip to a pumpkin patch

We had lots of Halloween events, not just for the boys, but for us too!  Lots of recaps this week because I just didn’t have time to blog these past couple of weeks.

LJ went on his first field trip two weeks ago and I had to go with!  I loved it when mom came on my field trips.  We went to a Pumpkin Patch, which was actually kind of exciting for me since I’ve never been to one.

I was nervous for two reasons.  First, I wasn’t sure how LJ’s wheelchair would handle the terrain.  His chair is ok.  It does its job and positions him well… but it doesn’t have any shocks and it’s durability is terrible.  I was worried he’d be jostled everywhere they went and wouldn’t have enough head control to keep his head up and look around.

The second reason for my nerves was me.  Let me just say that I’ve always had a bit of a social anxiety.  I was worried that other parents wouldn’t talk to me.  I know it’s silly but sometimes being a young mom makes me feel out-of-place. 

Luckily, I hit it off with quite a few moms.

First, the kids went into a corn silo (a silo filled with, you guessed it, corn!)  I eyed it a bit timidly till one mom said, You want me to get in there with him?!  So I climbed in there and she passed him to me.  I think I’m still shaking out corn from my pants, weeks later.

Then we went on a hay ride!  This was awkward only because I can’t hold LJ and lift a wheelchair up onto the back of the bed.  A dad (or possibly a granddad, I couldn’t figure it out) was a huge help.  We stopped by to pick a pumpkin and then went to the corn maze.  I made it about a quarter way through in LJ’s chair when I turned back around.  By that time the kids had made it around the maze twice. 

We stopped by and checked out a few animals and then headed to a big hay stack.  I think the kids enjoyed this the most.  I laid LJ in the hay and climbed up there with him.  Some of the kids buried his legs in the hay.  It was adorable.

I’m so glad I went.  Sometimes I have such a hard time seeing LJ in a classroom setting that I just assumed these feelings would carry over to our field trip.  They didn’t.  In fact, I think I cried with joy afterwards.  The kids are so sweet to LJ.  And there are these two girls in his class that adore him.  At the end, we took pictures of all the kids together on the hay stack.  The teacher positioned LJ in between these two girls and instructed them to hold them up.  This made me nervous so I climbed up there and hid behind them but they were so good with him.  I guess I never really thought about how being a peer model could be beneficial for them too.

I cant’ wait for our next field trip!

On Bullying

I meant to do a post about this last week, on National Anti Bullying Day.  I didn’t have time but I didn’t want this to pass by without commenting on it.

Surprisingly, there is a bit of controversy over this.  Some people say that people have become too easily offended by words.  Some say that it’s a part of growing up.  Some say that our society has brought it upon ourselves due to the violent nature of television and video games.

To me, the first issue about being to sensitive over just words may be a little true.  They are, in fact, just words.  It’s their context to hurt others that’s the problem.  “Sticks and stones may break my bones but words will never hurt me.”

I find this statement false.  I was bullied.  I was pushed around because I’m short.  I was constantly the subject of ridicule because I’m half asian.  I was even teased by a coach because of my last name (he thought it was a clever play on words, I found it to be humiliating and isolating).  I didn’t have it as bad as others did, but I still remember.  I remember the shame, that pain… and to a child that’s learning to handle their emotions and who is learning about themselves, bullying can be the trigger that makes things seem like they’re spiraling out of control.

It’s not part of growing up when it results in someone taking their own life. 

It doesn’t just stop at words though.  I’ve read countless articles on students physically harassing other students because they seem different. 

It scares me.  It makes me angry. 

LJ has special needs.  He will always look different from the norm.  He might not ever be able to defend himself.  He might not ever be able to tell me that something happened.  This is one of my biggest fears.  I don’t know what I’d do if I ever found out he was being bullied.

Talk to your kids.  Role play if you have to.  Talk to them about what to do on either side, whether they’re the bully or being bullied.  Talk to them about what to do if they are a witness of bullying.  I’ve read plenty of articles where the bullying was witnessed but no one came forward.  Sometimes the victims of bullying (because they ARE victims) are too ashamed to come forward themselves. 

Let’s start instilling compassion and acceptance in our children.  The world will be a better place because of it.

Special Needs Link Love

Welcome to the third edition of Special Needs Link Love! 

Life in Holland- Go read Jamie’s blog description.  I’ll wait.  When I first read it, I thought, “That’s it, exactly!”  I love her honesty and I value her opinion a lot, not just because she’s a nurse, but a very thorough mom like myself!  Her girls are so adorable and I love reading about Anna’s, her daughter with CP, accomplishments.

Pray for Nathan- I haven’t been following this blog too long but I’m already in love with Nathan and his mom., Marcela  She’s so honest!  I take comfort in her researching tendencies as I tend to do the same thing, just not as diligently and not as much as she does!  I love that she so often shares her findings with her readers.  This is a great informative, personal blog

Oley Foundation- This link was left by a staff member of the Oley Foundation.  While the format of the site might be a little overwhelming at first, take the time to check it out if you or someone you know is tube or IV fed.  I’ve only just touched on their resources but I can already tell it’s going to be useful.  There are printouts and lots and lots of tips that I think could be very helpful, especially if you’re trying to bring in another caregiver, even if only temporary.

5 Minutes For Special Needs- Another great site with a collection of great writers.  Some of my favorite special mama bloggers contribute to this site.  Be sure to check out their blogroll!

I’m a little short on links this week.  I haven’t had a chance to review too many since everyone around here has been sick, including myself.  I should be able to catch up this weekend.  Please send me your links to OurYellowBrickRd@gmail.com!

Follow

Get every new post delivered to your Inbox.

Join 36 other followers

%d bloggers like this: