Christmas Magic

Our nickname for Noah at this time of year is “Mr. Christmas.” He really seems to embrace the season as much as possible and loves all things Christmas. It wasn’t always like this though. There were so many Christmases that he just didn’t really pay attention or it just overwhelmed him.

But now, he gets so excited for the Christmas season. The excitement usually starts right after his birthday in October. That’s when we started counting down the days till he could up his little tree in his room, which in our home is either Thanksgiving night (depending on how tired we are from Thanksgiving) or sometime during the weekend directly after Thanksgiving. Noah’s little tree always goes up first and he is always so excited for it. 

Each afternoon when he gets home from school, we turn the lights on his little purple and orange tree. He gets so excited each time I turn them on even though they were just twinkling for him the day before. He goes to bed with the lights twinkling. I’ll peek in on him and see him just lying in his bed staring at the little tree. After a while, he’ll roll over into his little spot close to the bedrail and drift off to sleep with visions of Christmas magic dancing through his head. And before I go to bed, I tiptoe into his room and turn the lights out.

I love his innocence. I love the magic of the season. I love seeing Christmas year after year through my boy’s eyes.

The Real Noah

He may just look like a boy in a wheelchair to you but to those who have the privilege of knowing and loving him, Noah is so much more. 

He's a boy with a big heart, soul, thoughts, and fears.
He's a joy, a blessing, and an absolute handful! 

(click to see larger)

End the R Word Pledge

Today is the national day of awareness to Spread the Word to End the R Word.

I know so many people think the "r" word is NO BIG DEAL. It's just a word, right? But when you and your baby have cried tears because because of that word, it's more than just a word. Words hurt. 

And I know, you are probably going to tell me that you are just calling your friend the "r" word instead of calling them dumb or stupid or something else equally insulting. So aren't you in essence then calling my precious boy and others like him dumb and stupid? 

There's a gazillion other words out there - choose another one!

I encourage you to sign the pledge in honor of Noah. And let us know you did!

Noah's New Wheels

After nearly a year of paperwork, appeals, patience, and prayers Noah finally has new wheels! The process of getting a new wheelchair is typically a slow one but this one set a record for Noah. We began the process in August of 2011! We all (including his physical therapy team) were shocked to see the chair when it arrived!

I call Noah’s new wheels the Cadillac of wheelchairs because it’s so big and fancy. Check out that seat! 

Even with the success of the Scoliosis surgery, Noah continues to lean to one side and this seat is a contour seat. They sat him into something that sort of resembles a bean bag and molded it around him and use that to create the seat so it gives Noah more support where he specifically needs it.

It’s hard to tell but the metal base of the wheelchair is actually a very dark purple. He chose that himself. 

He is having a smidge of trouble getting used to using the chair in the house. Since it is bigger than the old chair, he has trouble making some of the turns. He can't make them as wide as he used to but is trying very hard and seems very determined to learn how to maneuver his new chair on his own. 

There is one big change for all of us with the new chair. Since it is much bigger and heavier than the old chair, it is difficult for J to put it in the back of our SUV and it doesn't fit in the back unless the wheels are down, so we have had to add the wheelchair carrier to the back of the truck which we have currently only used for long car trips. 

Overall, we are so happy and thankful to have Noah's new wheels! 

Linked to Special Exposure Wednesday at 5 Minutes for Special Needs

Setting the Table becomes a Moment to Remember

As a society we often get so caught up in the hustle and bustle of everyday life that we forget to take time to stop and notice the little things in life. Since January, I’ve been making an effort to notice the small moments, enjoy them, and live in the moment. 


Sunday night, as we were getting ready to sit down for dinner, I got out plates and silverware and set them on the table. I walked back to the counter for something else and when I turned around I noticed Noah at the table. He was setting the table! 


I was so proud to see him doing that on his own for the very first time. It was a moment. My heart smiled as I watched my little boy in his wheelchair, setting the table. I breathed in the moment and etched it into my memory. I never want to take these moments for granted. Because of  his special needs, because of cerebral palsy and autism, I’m aware – so very aware – of these little moments and for my boy they are actually big moments. 


(This post is a part of the CP Connection. Click links below for more info.) 

My Special Olympian: The Video

Yesterday I shared still photos from the Special Olympics and today I am sharing a short video of Noah competing!

 

My Special Olympian

Last week Noah participated in the local Special Olympics. He competed in two wheelchair races. This year, he had moved up an age group and was racing with older kids. He was the slowest one in both of his heats - but he didn't care. I don't think he even noticed! He really is an example to us all - he was just happy and determined. Happy to just be there and determined to just finish! He makes us so proud! 

And now what you probably really want to see - pictures!
Warning: I got picture happy so there are a lot of pictures in this post! 

Is he not adorable in that hat?

I forgot and left it on his wheelchair that morning when he left for school and I guess his teachers thought I sent it for him to wear outside so they put it on him and he kept it on the entire time!

At the starting line

Do you spot Noah? He's the third one. 

And they're off!

Slowly but surely he's making his way towards the finish line. 

Those little hands are working hard. 

So determined!

Look at that smile! He is just happy to be there. 

He just spotted Granddaddy at the finish line!

Almost there buddy!

Getting his ribbon

Linked to Special Exposure Wednesday at 5 Minutes for Special Needs

Running and the Wind in your Hair

I must share this video entitled Dayton's Legs. 

It reminds me of Noah, especially the part about how Dayton loves to feel the wind in his hair and on his face. I have seen that look on Noah's face when my Dad is running so fast with him at Miracle League. 

I'm glad that although his legs don't work, Noah has the opportunity to experience the joy of the wind on your face and blowing your hair while running via my Dad. Every child should know that joy. 

Down Syndrome Awareness Day

Today is World Down Syndrome Awareness Day. You may be wondering why I am posting about Down Syndrome (DS) when Noah has CP and not DS but I think we need to bring awarness to ALL disabilities.

DS has always held a special spot in my heart since seeing a child with DS when I was a child myself is the first time I can remember learning about disabilities. My Mom went to college and got her degree in special education although she never actually taught because she was a stay at home Mom but she did educate us on disabilities at appropriate times.

I can remember being young and seeing someone in the store with DS and asking my Mom about them. She explained that they had DS and that they shouldn't be treated any differently just because they had DS. She  even told me words I might hear people call them and that they were not the proper words to use when describing someone with DS and that I was not to use those words. (See, I really was made for this!)

The video below was made by the International Down Syndrome Coalition. They asked different parents of children with DS if they could go back in time to right before they had their child with DS what would they tell themselves. While the answers are specifically given by parents of children with DS, they apply to me and just about any parent of a special needs kiddos. I love the answers given!

So, the video had me thinking. What would I go back and tell myself? I think I'd say, "It is going to be a bumpy ride, but you can do it. You were made for this, girl!"

Goodbye Corner Chair

Years ago when Noah was about 2, his physical and occupational therapists decided he needed a corner chair. I’d never heard of a corner chair before but his therapists explained that it would give him maximum support while sitting and that it would also help him with head control and the goal was that through sitting in the corner chair, eventually he’d be able to sit independently without the corner chair.

They brought me a medical equipment catalog to show me pictures of corner chairs. This was our very first experience with ordering medical equipment and I remember feeling so emotionally unprepared. I got teary eyed as I looked at the corner chairs. They were so sterile and clinical looking. The therapist consoled me by saying we could paint it, decorate it, and make it cheerier and less clinical.

When it arrived, there were a few more tears as it looked just as bad in person as it did in that catalog. Some may think this is vain or something silly to shed a couple of tears over but when you are thinking of your child’s life and the things you’ll buy for him turn you are not expecting to pick out things from a medical catalog and you realize that your child's life is turning out to be completely different than you imagined then sometimes you just have to take a minute and acknowledge that, grieve it, and then move forward.

My Mom and I painted the corner chair a bright royal blue. Then my Mom painted different Sesame Street characters in automobiles on the tray (which matched the wall paper border in Noah’s room at the time). It turned out really cute.

Recently, J picked up some of Noah’s old medical equipment that he had outgrown that was stored at my parents’ house. We gave them to the physical therapy department at Noah’s school so that other children can benefit from them. That corner chair was one of the things we gave to them and I found myself a little sad to say goodbye to it. Ironic isn't it? Something I loathed at first turned into a sweet memory for me.

But I know another special boy or girl will use that corner chair and smile at Big Bird, Bert, Ernie, Elmo, and Cookie.

I apologize for the terrible cell phone pic but check out the amazing job my Mom did on the tray!

Song for a Child with Cerebral Palsy

March is National Cerebral Palsy Awareness Month so I'll be sharing some things related to Cerebral Palsy through out the month.

I recently came across That Smile, a precious song written by 8 year old Cassidy Matthews for her sister Elise who has Cerebral Palsy. Such sweet lyrics for an 8 year old!

Lyrics:

1st verse:
What would you do
If you weren't like anyone else?
If the easy things
Weren't so easy?
What if it took you longer to do it?
You might feel sad and lonely.
You may just want to sit and cry.
How do you move above all that? 

chorus:
What do you do?
What could you do?
You smile that smile
That perfect smile.
You show them all
That lifes worth living
And not to feel so sorry.
You smile that smile,
That perfect smile.
The one that melts us as your giving.
And leaves the heart
Filled with joy,
Why can't we all live that way? 

2nd verse:
What if the sounds from your mouth came out different?
What if they couldn't
Understand you?
What if they treated you
Not like the others?
You might feel down
And not so special.
You may want to fight
Or get frustrated,
But what would that do?
What would that fix? 

chorus again 

last verse:
What if each small step
Was celebrated?
If your world was at you fingertips/
What if your beautiful
Face could change us?
You might just feel happy and proud.
You may want to show your
Light to the people.
That's what we need
In a world llike this! 

Chorus again 

Oh let us all, be that way-ay!

JOY Prom

Last week Noah attended the JOY Prom. You may not have heard of JOY Prom so let me tell you a little more about it.....

JOY proms are for special needs high school students and young adults.  It is a movement that originally began in churches as a way to integrate the special needs population into churches and it has spread like wildfire and now other community organizations are picking up on it and organizing JOY proms in their communities. Proms are something most high school students are able to experience, it’s almost a rite of passage but it’s not something that all special needs people are able to experience and JOY proms are giving them this experience.

Special needs people in attendance are each paired with a volunteer “date” who helps them have an awesome time on their prom night. Upon arriving, the girls are whisked away for makeup and tiaras the boys get their shoes shined and boutonnieres. Then they walk down a red carpet where there is lots of cheering and applause. I think this was one of Noah’s favorite parts of the night!

Noah’s date was a sweet college student named Sam. There was a meet and greet the week before the prom in which the kids met their dates so that they would be a little familiar with them before the prom so Noah recognized Sam when she greeted him.  Sam and Noah danced the night away stopping for breaks to enjoy chicken nuggets and crackers.

The place where the JOY Prom was held was two stories so parents could go to the balcony and watch their children have fun from above while giving the kids space to enjoy the prom. Thirty minutes or so before the prom ended, parents were invited to come down and dance with their kids.

And now what you have probably been waiting for…. Pictures! I tried and tried and tried some more to get a picture of Noah smiling but he would not smile for the camera. He was a little overwhelmed with everything at first but all in all, he had a good time and was exhausted by the time we got him home!

Handsome in his suit

Yes, that's the "Angel Choir Boy" Pose in his suit!

Noah and Sam

Getting his boutonniere pinned on

Excited to be on the red carpet

Dancing the night away

Noah and Sam taking a break. 

Me and my handsome boy

All tuckered out at home after the prom! 

Linked to 5 Minutes for Special Needs

Spread the Word to End the R Word

It's not acceptable to use the "R" word nowadays. I know people still do it, though, but it's demeaning. Tomorrow (3/7/12) is the official day of awareness to Spread the Word to End the R Word. Can you commit to not use the R word anymore? If so, take a minute to sign the pledge and then spread the word and ask others to do the same.

Noah and I thank you! Let us know if you sign the pledge!

Special Testimony

I think that sometimes society over looks special needs children and adults and forgets that they have things to contribute, talents to share, and stories to tell.  

But God doesn't! God sees their talents and puts them to use.

The video below is the perfect example of that. God used this young man to give hope to others. 

Beautiful.

Eating Out with Noah

Around the time that Noah was about 7 years old we stopped eating out at restaurants. I hated that we had to do that because we had been having lunch or dinner on Sundays out with my parents but it had just become too overwhelming for Noah and he’d have meltdowns and you could tell he was just miserable. Plus that made it un-enjoyable for all of us. So we stopped.

In the past year, Noah has grown up so much. He wants to do things or is able to do things that I never thought he’d want to do, like art projects and painting or attending the Christmas Eve Candlelight Church Service so recently J and I decided to give eating out a try. Over Christmas break at my parents, Noah had eaten chips and cheese dip that had been brought home from the Mexican restaurant and really enjoyed them so we chose a small Mexican restaurant. We sat at a booth and Noah sat in his wheelchair at the end of the table and did so well. His behavior was awesome. He didn’t get loud or upset and he just loved the chips and cheese dip and made a mess (he even had cheese dip in his hair!) but we didn’t care; we were just happy he was being so well behaved!

The next Saturday night, we found ourselves without a PCA and on that side of town again. Noah pointed in the direction of the Mexican restaurant and signed please so we tried it again. I kind of wanted to see if the first time had been some sort of fluke or something but nope, it wasn’t a fluke. He did awesome again!

J and I decided to get really brave and this past Saturday asked my parents if they wanted to have dinner with us – and Noah! – in honor of J’s birthday. I was nervous about the aspect of bringing them along (at times in the past Noah has become more overwhelmed when it’s all of us) but wanted to give it a try.

I’m happy to report, that once again, Noah was AWESOME! He behaved so well and happily sat next to his Granddad. He ate well, chatted a little bit, and even though it was really loud (and there was even a baby crying nearby at one point which usually upsets him) he never got upset or acted out at all.

It seems so normal doesn’t it, to have dinner at a restaurant with your family? The second Saturday, I remember looking across the booth at J, smiling, and saying, "This feels so normal." But it’s something that many of us probably take for granted. I know I did before and I’m just thankful that for now, we are able to enjoy an occasional dinner out as a family.

Linked to 5 Minutes for Special Needs

Noah's New AFOs

Back before Christmas, Noah was fitted for new AFOs. (AFO stands for ankle foot orthosis and is basically a brace that goes on over the socks and supports the ankle and foot.) Children can get decorative AFOs that have a pattern (clouds with butterflies, camouflage, etc) on them or you can get AFOs with "tattoos" that have an image on the back of the AFO. 

Noah got to choose the design for his AFOs and of course his eyes went straight to the Clemson designs. He couldn't choose between the orange tiger paw or the tiger so he ended up with this........

One of each! 

Linked to 5 Minutes for Special Needs

 and

5 Minutes for Moms

It's a Hard Life

The first time I heard the song Hard Life by Brad Paisley tears welled up in my eyes. It felt like the song was written for my Noahie. I made J listen to it the next day and he immediately felt it too.



The chorus says:
"Yeah, it's a hard life
But I'm okay
If I didn't have this, I wouldn't be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody does" 

The part about having lots of friends and love just about makes me do the ugly cry Oprah loathes. J and I have always said that although Noah may not be able to run a marathon or be the CEO of a huge corporation, he has already in his short life touched many people lives and he has SO many people that love him. Every time something big happens in our lives, like Noah's Scoliosis surgery last year or the recent grand mal seizure emergency J and I are always humbled at the amount of prayers, thoughts, and love shown to Noah and our family. People who have never even met me or my child in person have shown him tremendous love.

Not every person is lucky enough to receive the amount of love that Noah has in his life and I think love and kindness from others can make living a hard life just a little bit easier.

The Best Christmas Present Ever

We just left the Christmas Eve candlelight service at church and my heart is so full I think it might burst! 

For the past ten years that we have attended Christmas Eve church services I have wanted to attend with my whole family. But sometimes with special needs children things like super crowded Christmas Eve services just aren't possible. The holidays already make many special needs children anxious and overwhelmed and add a crowded special church service into the mix and you are cruising for disaster.

In order for Noah not to attend, we’d attend in shifts going to different service times so that someone was always able to be at home with Noah where it was quiet and calm.  Each year, I would wistfully watch other extended families of parents, children, grandparents, aunts and uncles attending together wishing it was my own.

In light of some of Noah’s recent behavior changes and the fact that he can sit and eat in a restaurant now (which is something he couldn’t have done a couple of years ago) we decided to attempt bringing him to the Christmas Eve service with all of us.

We prepped him. We made sure he had a nap and we even had a contingency plan should Noah  have become overwhelmed and fussy.  As I walked into church with my family pushing Noah’s wheelchair, I held my breath and silently prayed....

Yes he talked during the service. He said our names making sure we were all on the row with him. He needed my Dad to sit next to him and have his arm around him for most of the service. But he watched in awe at the music, the lights, the sounds; he experienced the beauty that is a candlelight Christmas Eve service. He worshiped with his family and was just generally pleased to be there.

I cried happy tears. This is something my heart wanted for so long. So, it’s not even Christmas day yet and I have already received the best Christmas present ever! While it's not wrapped up and under the tree, it will live in my heart forever.

And you may recall that I received the best birthday present ever back in September. What a lucky and blessed Momma I have been this year!

Merry Christmas friends!

Five Minute Friday: Older

It’s Friday – the day where I join other bloggers and take five short minutes to just write from the heart. Five Minute Friday is hosted by Gypsy Mama and this week’s prompt is older. 


My birthday is less than a month away and I will be growing another year older. So far, growing older hasn't bothered me that much. I mean, it's just a natural part of life and not much I can do about it so I try not to grumble about it too much. Besides, as I grow older I feel like I just grow into "me" more.

But with Noah, it's different. My big fear is him growing older. It's scary and it's unknown territory, uncharted waters. I am sure some of it is the normal feelings that every Mother has when their baby is growing up. They fondly remember the days when their "baby" was actually a baby and may long for them again. But for the most part, for me, I don't think it's that.

Asa my friend's children get older, they will worry about college, their children moving out, career paths, their child getting married and eventually they will celebrate becoming grandparents. My worries won't be exactly the same. As Noah gets older, he gets heavier. There is going to come a time in which I can no longer lift him, what then? He won't go to college, instead we are already discussing vocational centers for disabled adults. He will go to one on those. And he'll always remain with us.

On the bright side, I won't have some of the same headaches that some of my friends will as their children grow older. I won't have to worry about how to pay for college or if he is behaving in his first apartment. My worries will be different.

But for now, I will continue to try not to worry too much about the future because I want to cherish today.

Photo: One of my favorite pictures from Noah's birthday last year.

Cute Feet that Don't Work

The conversation I'm about to relay is a conversation between Noah and I last week. This conversation absolutely broke my heart. And in all honesty, this post is probably much more for me than for you. (But that's the beauty of blogging - a journal others get the pleasure of reading.)


First though, let me say that conversations between Noah and I involve signing, a lot of me guessing, asking questions, receiving answers, and sometimes involve gesturing. I'm just relaying what was said after all that was done. 


Me (while I was putting on Noah's summer sandals): "Noah, you have the cutest feet. I love your little feet."
Noah: "I do not love my feet. My feet don't work."
Me: "Oh buddy. They don't work like everyone else's feet, that's true. God made your feet special and different. And because your feet don't work you get to have WHEELS."
Noah: "I do not like my feet. I like Granddad's feet because they run at baseball. I want my feet to run." 
Me: "I know, baby. It's hard to be you sometimes, isn't it? It is hard to be different and not be like everyone else sometimes. But I love you just the way you are. Your Daddy, your grandparents, your family, your friends - we all just love you just the way God made you." 


At that point, he was done with that line of conversation but brought it up multiple times over the next few days with my parents, with J, or with me again. It's clearly on his mind a lot at the moment. He's growing up and realizing that he is different, that he isn't like everyone else, and that his body doesn't work like everyone else's. And I know that this is something all children go through - they all have something that makes them different in some way, shape, or form - his just feels bigger. 


I have replayed that conversation in my head 199 times since it actually happened. Sometimes, I feel like I said all the right things and other times I feel like I glossed over the issue. I really don't know what else to do or say to him other than reassure him that he is loved, accepted, and that it is OK to be sad, upset, or whatever feeling he may be experiencing at that moment about how he is different. 


And no matter what he says about his feet, as his Mother I still think they are adorable.