Special Family

God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome doesn't TAKE a special family, it MAKES a special family.

 {Stolen from numerous Facebook statuses, HA.}

Lost Generation

My sister posted this on her Facebook and I just, finally, got around to being able to watch it.  It's a pretty awesome message.  Enjoy.

Good news, bad news

I let Mary take my camera back to Africa a few weeks ago.  The only memory card that Wal-Mart had was an 8GB card and I thought that would be great so she could take many, many pictures and also get video of the kids at Challenge Farm for me.  I had no idea that this nice new card would be causing issues for me today.

Yesterday, after school, Ethan did something so wonderful that I ran over and got my camera off of Mary's desk.  I was hoping and praying for a repeat of what he did. 

Good News:  He did it again and I got it on video!
Bad News:  The video card is not compatible with my computer because it is a new high capacity card!  :(

So, I will have to get a USB thingamabob in order to get the video off of my camera!

Ok, so Ethan climbed out of a mini-cage I had him in at school.  It is typically the perimeter to the ball pit and I put him in there to keep from throwing the balls everywhere while Mary and I had a meeting about re-eval and he had his game plan and climbed out!  This may not seem like a big deal to many, but I cried.  Seriously, whenever he does new things, I cry- ESPECIALLY when I can see his wheels turning on HOW to do something.  When I can see his thought process work, it's amazing!

I also got video of him laughing up a storm while playing with feet totally creepy, I know, but that is going to also have to wait, too.  Man, I am so disappointed!

This Mama is so proud of her boy!

Reposting: A plea for Haiti. And my pact.

Bethany is at it again...finding a way to help out others.  Leave a comment on her blog here and she will donate back to Haiti.  You must leave the comment on Bethany's blog in order for her to send the $$$.

The devastation from the earthquake in Haiti is extreme.

140,000 people were killed.

1,000,000 people are homeless.

I have been reading the blog of a doctor from Minnesota that is in Haiti providing medical care for the injured. She and her medical team are in immediate need of the following:

Emergency medicine/trauma surgery PA (or similar skill set)
Orthopedic PA (or similar skill set)
Physical Therapist

If you know someone that may be qualified, please pass this information on to them immediately. They are looking to have these people flown into Haiti in two days from now.
Click here or here or here to read about their relief efforts.

I promise you will be inspired.

Or click here to see pictures taken by a Minnesota family that is currently living and serving in Haiti.

Amazing.

Or click here to read about the efforts of New Kids on the Block, the Wheelchair Foundation and others to send a plane to Haiti. Yes ... I ♥ NKOTB.

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I have seen a few bloggers make a pact with their readers to donate a certain amount of money for every comment left on their blogs. Wow ... I'm inspired.

I want to do it. It seems so much bigger than little, old me ... but whatever, even a handful of comments are better than nothing.

Right?

My pact --->

I will donate 25 cents for every comment left on this post between now and Friday, January 29, 2010, at 12:00 noon EST.

*ahem* Lurkers -- show your face please! *muah*

Spread the word ... Haiti needs our help!

Spread the Word to END the Word!

 I challenge you to take the pledge- pledge to eliminate retard(ed) from your vocabulary. It is a very hurtful word used by society and, most importantly, it is hurtful towards my son and so many other persons with intellectual disabilities around the world. Eliminating the word and ENDING its use is the right thing to do and it is the respectful thing to do.

Mary's Return

Two weeks ago, tomorrow, Ethan's favorite teacher and my dear friend embarked on her 11-day journey to Kitale, Kenya, Africa.  Yes, Mary went to Challenge Farm without me, but I am so NOT bitter...nope, not at all!.  We were all so excited for her adventure and for what God had in store for her, but eleven days is a long time for Bubs to be away from Mary.  So, we made it a point to go to the airport to greet her back HOME!  Ethan got Mary some "Welcome Back" balloons and waited patiently for her flight to come in.   

*Special Thanks to Evan for not showing up to work for his scheduled flight attendant duties for the final flight from DC to Greensboro.  You're awesome because we LOVE waiting another hour and a half to see our loved one after they have been to the other side of the world!  Anywho...*

Ethan playing with his Daddy's Mtn. Dew.  Good thing, he likes them flat.

Waiting patiently

REUNITED, and it feels so good! 

We literally had to hold Ethan back or else he would have been apprehended by TSA!  Hahaha.  It really was a sweet reunion. 

 

Ok, ignore the fact that Mary's eyes are closed.  It's a really precious shot of how happy Ethan was that she was home!  Wait...who is that crazy looking dude behind them and why in the heck does his head look like an ice cream cone?!?!?!?!?

WELCOME HOME MARY!  WE MISSED YOU! 

Thank You Card Etiquette

I recently sent off a bunch of pre-printed thank you cards that I had printed from Shutterfly.  It came to me today that some people may think that the thank you was impersonal because it was pre-printed.  Since I have lived in the South, I have noticed that people around here take their thank you card's seriously!  If you went to a wedding and brought a gift, you better be seeing that thank you card in the mail the week after the honeymoon, or else you are an ungrateful receiver!  I have always had good intentions about sending thank you card's, but they usually end up on the dining table- some even addressed and only needing a stamp!

I was NOT going to let everyone who contributed to our Christmas go without a thank you of some kind.  I put pictures of Ethan on Christmas Day on the front and inside, along with a personal note.  The personal note is what was printed from the company.  This is what I fear people will feel is impersonal because it wasn't handwritten.  I hope this isn't the case, but it was on my mind because I don't talk about my RA {rheumatoid arthritis} much.  Anywho, I cannot handwrite anything- without pain- beyond a post-it note.  I wish that I could personally write out every note, but my hands simply won't let me.  And, that's why I have to count on the wonderful new technology of pre-printed thank you notes.

C25K...W3D1

I almost psyched myself out to do this run tonight.  I, typically, run in the morning after I take Ethan to school, but I just couldn't get my act together today to do it.  Sooo, I came *this close* to calling it a day.  I really want to stick with my Monday, Wednesday, Friday routine- it's easy for me, it gives me my weekends, and it works with my schedule.  If I didn't run today, I was messing up my whole routine.  So, a little after 9pm tonight, I set out to complete Week 3 Day 1 with my trusty new iPod Shuffle and downloaded Hip Hop Podcast hooked to my ears.

This week's run consists of a 5 minute walk warm-up, 90 second run, 90 second walk, 3 minute run, 3 minute walk, REPEAT, and 5 minute cool down.  The whole idea of running for double what I had been had me a LOT anxious, but I did it!  I ran in my neighborhood and did so much better than I ever thought that I could!  My mileage was a little over a mile and a half, which is less than the previous two weeks.  I haven't figured out why that is- maybe because the time was less?  Too tired to figure it out right now.  LOL.

Pat me on the back because this is something that I never thought I would do or could do for that matter, and I am doing it!  Thanks to everyone for the encouragement!  *muah*

Poor Eating...again

Ethan's eating sucks lately.  We don't know if it's because Mary's been gone or what, but Ethan does not want to eat anything at home unless it is oatmeal or applesauce.  We always puree him food that we are eating and he loves it.  One of his favorite meals is Mexican, but refused he that too.  I tell you, if it were not for the fact that he drinks 3-4 Nutren Junior's a day, he would become frail again...FAST. 

What is so confusing is that school tells us that he eats great at school!  What the French is that about?  This is when having a child who is non-verbal really blows.

Wanting Comfort

As a Mommy, what is your first reaction when your child hurts themselves and gets an owie?  Mine is to try and comfort/kiss the owie and make it better...you know, the whole "Let Mommy kiss it and make it better" approach?  Yeah, well- I try that and Ethan rejects it.  What gives?  He looks at me like he wants me to make it better but then he won't let me touch or see the boo boo.  It's kind of heartbreaking.  I always jump to his aid when he slips and I can tell that something hurts, but he always pushes me away.  Is it so much to ask for a Mama to be able to make her baby feel better?  I just know that when Ethan shows pain, it REALLY hurts because his pain tolerance is so high.  I hate to not try and comfort him since he just rejects it, but sometimes this Mama is a little sensitive and would just really love it if she felt needed.

Farmville Rap

I get FarmVille app requests on Facebook all the time and every single request gets ignored {nuttin' personal}.  I guess virtual farming brings much joy to many people, including my Mom, but I simply don't have the time to get involved with it, and I am certainly not going to be updating my status to have someone else water my crops.  It's just not for me.  This morning, I heard a Farmville rap and laughed so hard.  I found the video on YouTube for everyone's mutual enjoyment.  :)

The Search for Significance

I am going to plagiarize Rebecca W. Johnston, who plagiarized and paraphrased from Robert S. McGee for the benefit of our local M.O.M.S. group that meets on Thursday mornings.  I have actually been thinking about how to write about this topic since leaving church on Thursday.  It is probably simply for my benefit, but if you can make it through, you will probably not be sorry.

The three purposes of the study are:

1. Identify and understand the nature of man's search for significance
2. Recognize and challenge inadequate answers
3. Apply God's solutions to your search for significance

From life's outset, we find ourselves on the prowl, searching to satisfy some inner, unexplained yearning.  Our hunger causes us to search for people who will love us.  Our desire for acceptance pressures us to perform to gain praise from others.  We strive for success, driving our minds and bodies harder and further, hoping that because of our sweat and sacrifice others will appreciate us more.  ...  Despite our efforts, we will never find lasting and fulfilling peace if we must continually prove ourselves to others.

Unfortunately, many of us have been exposed to inadequate teaching from both religious and secular sources concerning our self-worth.

Whether labeled self-esteem or self-worth, the feeling of significance is crucial to man's emotional, spiritual, and social stability and is the driving element within the human spirit.

People want to know and be known, love and be loved, celebrate and be celebrated, serve and be served.

Since the Fall, man has often failed to turn to God for the truth about himself.  Instead, he hs looked to others to meet his enescapable need for self-worth.  I am what others say I am...  I will find value in their opinions of me.  Isn't it amazing that we turn to others who have a perspective as limited and darkened as our own to discover our worth!  Rather than relying on God's steady, uplifting reassurance of who we are, we depend on others who base our worth on our ability to meet their standards.  ...  Our true value is based not on our behavior or the approval of others but on what God's word says is true about us.

Self-worth =  Performance + other's opinions  (Satan's Lie!)

Self-worth =  God's TRUTH about you!

Understand that our worth has freely and conclusively been given to us by God.  Failure and/or the disapproval of others cannot take that away!

*****     *****     *****     *****     *****     *****

I think that the majority of people have some sort of "baggage" from childhood.  Some baggage may seem insignificant to others and some may seem more obvious.  This last week's topic really got me thinking about how far back my search for significance goes.  And, it goes back to my childhood.  Let me disclaim that I know that my parents love me and I love them more than I can tell them, but I know my search for significance runs deep.  I think I will try to bullet a summary otherwise we would be here all day and I know that Linda doesn't like that. ;)

• My older sister, Kim, was always the "pretty" one.  She was the small town kids pageant runner-up.  Me?  I was anti-social on stage- or so they tell me.  {I did have a very pretty dress though} 
• Mine and Kim's biological father was killed when Kim was 8, I was 3.  My dad, Jeff, came into our lives when I was 4.  He has raised me ever since.  Kim remembered our father, whereas I have maybe three memories and I don't even know if those are real.  I called Jeff "Daddy" one night before bed and Kim grabbed my arm and proceeded to tell me that I was NOT to call him Daddy because he was NOT our Daddy.  I have called Jeff, Jeff ever since.  Kim had the "Daddy's Girl" experience, I did not.
• I used to be told that I had fat legs by a close family member.  I am not sure if that was to try and encourage me to go ride my bike or what, but it stuck with me forever.  What I would give to have those "fat" legs again!
• My mom used to tell me that I didn't have any true friends as a child, that they were using me or that I always had to go to them.  I think this is one of the most significant for me today.  I am very loyal to my friends, but my challenge is to reach out to others now within church or beyond.  I want, even need, for new friends to come to me.  I need to feel wanted.  I need to feel like my friendship is wanted on the other side and that I am important enough to seek out friendship with.  I don't ever want to be that child again following like a puppy who just wants to play. 

So, we have insecurity from looks, love, and acceptance.  My love language is Words of Affirmation because I need to be given a compliment in order to feel loved and pretty. I had a friend ask me once if I loved myself because they noticed that I put myself down a lot. I do it without even knowing it, but I think it started when I was younger in order to hear a compliment in return. I know that I am a good person, I know that I am a good friend, I know that I am a good Mother, and I know that God loves me, but those some of my "demons". I will work on concentrating more on God's promises for me, versus my search for significance with others. 

C25K Update

I caught up on my Week One training and started with Week Two today.  All of last week, my training was done in the house or on a treadmill.  The house training was interesting since I really just ran around my house, which was silly and probably not doing me any good, but I was just trying to keep going.  I did Wii Fit Plus training on most days, which is a lot of fun.  It brings out the competitor in all of us.  When I was on the treadmill, I ran between 4.7 and 5.0 without an incline and walked at 3.0.  I think the average distance was close to a mile and a half.

Today, I went to a link that Bethany had provided- Map My Run, and discovered that a local park right near my house has the perfect path set up for 5k training!  So, while I was nervous to be running outside, I am so glad that I did it!  The scenery is much prettier, and I found that I could eye a landmark for each segment of training.  When I was on the treadmill, I found myself watching the clock tick by and it seemed to go by so sllooooow.  The path I was on at the park circled this tiny little pond.  There are a couple of little hills, but nothing major.  I monitored my intervals with the stopwatch option on my phone and just hit "lap" for each segment that way I had a running tally of time for the total 20 minutes.  I also used my phone for music, but don't have headphones, so I am really looking forward to having the iPod Shuffle!  I think that I made it around the pond about seven times, and there were not any other people there really.  That's good for me since I am sure that I look like a fool.  Maybe I should just run like Phoebe...

NOT MRSA! :)

Scott took Ethan in for his second follow-up for the infection in E's thumb and the infection was not MRSA!  YAY!  It tested positive for strep.  I don't know the specifics, just that it was strep and not MRSA.  :)  The thumb looks SO much better and we took off the bandaging last night, so Ethan is much happier to have the use of both of his hands again.  The doctor is switching the antibiotic over to amoxicillan, which Ethan loves so we shouldn't have such a hard time getting the meds in him anymore. 

Thanks to all who prayed for Bubs.

National Delurker Day!

So apparently January 10th was Delurker Day.  I missed it, but I am back posting to act like I didn't miss it.  Got it?  :)

I actually had been thinking about posting something like this anyway because I can see that people are visiting my blog, but I don't know who most of you are because you don't leave comments.  I know that I read lots of blogs and don't have time to comment on all of them, so I understand.  But, today I am asking you to take a little time to introduce yourself if you never have before. 

Playdates...Typical or No?

I will disclaim that this post will talk about bodily function, so if that grosses you out- put on your big girl panties or big boy chonies and suck it up...this is an important topic...for me anyway.

I know that I have written about playdates before.  My previous posts may have seemed to be more of a pity party, and maybe they were, but this is not a pity party post.  I'm actually quite upset about this.  I am upset for my friend and I am upset for her child.  Let me essplain...no, I'll sum up.

Friend {Betty} and child with Down syndrome {Jay} go to supposed Friend's house for playdate.  Betty's friend's daughter does not have Ds.  Jay is not potty trained.  Jay has a poop accident and a piece of Friend's furniture is hit.  Friend proceeds to gross out and practically cry, all while making Betty feel like her child is gross.  Betty apologizes profusely.  Instead of giving Betty a towel to lay Jay on to change his diaper and clothes, Friend provided a plastic bag. 

Ok, first off, the plastic bag thing is offensive to me.  To give your friend a plastic bag to lay her child on?!!?  Really?  Second, whether you have a child with special needs or not, did your kid NEVER have an accident?  Are you psychic and know when your kid is going to have a poop that overflows the diaper?  Do you walk around with a barf bucket for that chance that your kids might projectile vomit?  Are you always there at that exact moment your kid sneezes and shoots snot across the room?  No?  I didn't think so.  Are these things gross?  Sure.  Is the child gross because those things happen?  NO!  Is the parent irresponsible because they didn't know those things would happen?  NO!  Listen Friend, this is part of having kids.  If you can't handle bodily function from other kids, then do not invite them over for playdates and proceed to make your guests feel awful.  And, by the way Friend...Jay is not stupid.  You think that he didn't understand your insinuations that he is gross?!?!  Shame on you.  And one more thing, Friend... Betty will not be coming over anymore- you have insulted her and Jay for the last time.

Phew, ok.  Now this leads into something that I struggle with.  I am proud of Betty for having a playdate outside of the special needs circle!  That's awesome and I think it is something that we all want for our angels.  But, when things like this happen, do we retreat back into a comfort zone of only being around playdates where someone "gets it"?  Then, for those of us with kids with complex needs- even beyond the typical child with Ds, what do we do? 

Ideas?  Suggestions?

Feeling Lucky

Remember Bethany's motivating post regarding C25K with said motivation being a $100 for new running shoes and an iPod Shuffle???  Well, her daughter Payton {AKA:  Chicky} drew the winner! Take a look!  I was crying watching her because I am just so proud of her!  Watch her as she pulls the paper and so beautifully opens it to display the name back to her Mama holding the camera.  Great job, Chicky!



THANK YOU, CHICKY!!!  :)

Now, you have to watch the next video too!  Winner, take two!  This time, Addison {AKA:  Nika} did the honors.



This sleep deprived Mama is very happy today!  :)  Thanks Bethany!

Poor Bubs

On Wednesday, Scott noticed a very small blister on Ethan's left thumb.  We couldn't really figure out where it would have come from.  Did he burn it somehow?  Was he bitten by an insect/spider?  He didn't cry during the night, so it is still a mystery when this happened.  By yesterday morning, the blister had grown to cover most of his little thumb and the fluid inside had a yellowish tint.  I called the doctor and they agreed that he needed to be seen. 

When I got to school to pick Ethan up, his thumb was so red and swollen and the blister was even bigger and nastier looking.  We got to the doctor and he wanted to aspirate some of the fluid out and have it cultured.  MRSA was mentioned...again. {I am really tired of hearing that term!}  After the aspiration, his hand was completely bandaged to keep him from putting the hand in his mouth and to, hopefully, give him some time to heal.  He hated having the dressing put on, but otherwise didn't seem to be bothered by it.  We were given a prescription and told to come back today so they could check it.  {Apparently, if it is MRSA, it has a higher likelihood of spreading to the bone when it is on a finger so they wanted to see if the anitibiotics were working}

Last night. Oy vey.  Ugh.  NO sleep.  Ethan was miserable.  I gave him Tylenol to help, but it didn't seem to because this sweet boy of mine was up ALL NIGHT LONG!  Most of it crying, too.  Poor Bubs.  We couldn't comfort him for anything.  Usually, if we put him in our bed, he will go right to sleep.  Well, he wanted to, but just couldn't.  It was so pitiful.  Then, he started getting mean.  By 3am, Scott went and slept with him in Ethan's room.  So, we all got a couple hours of sleep...maybe.

Today at the checkup, the dressing was removed and the blister had refilled with fluid.  It also spread slightly, but the swelling and redness was slightly better so they decided to not redrain it.  We did a Hibicleanse soak and re-dressed it.  I did notice more blisters on his fingers, but as of right now the doctor thinks they are from friction of Ethan moving his fingers under the dressing.  When we re-dressed it, we put barriers in between each finger to help with that. 

The new dressing has a beige color to it and when he had his jacket on, it looked like he didn't have a hand!  :(  He is adjusting to only being able to use one hand though.  Smart kid. 

I have to change the dressing over the weekend and look for any changes.  The culture won't be back until this weekend and we have to go back again on Monday for another recheck.  Oh, and the doctor thinks that this came from a bite of some sort.  Fun times.

C25K, W1D2...on hold

I am so upset.  I caught a cold and it has gone bad FAST.  Can't breathe, coughing, sore throat, earache = no day 2 of C25K.  :(  I opted to do some Wii Fit Plus activities that worked my calf muscles, so I was still doing something besides sitting on the couch.  Haha.  I am still committed, though.  Don't count me out! 

C25K, W1D1

I did it.  I completed Day One of Week One.  I was completely anxious about running in the cold and then Mary told me that her apartment complex has a workout room with a treadmill.  SCORE!  I was lucky to be the only one in the room at the time.  It wasn't bad at all.  I made sure to walk for about five minutes, stop and stretch, and then get into the program.  After it was over, I spent a fair amount of time stretching some more.  I am so afraid of re-injuring my calves....