A Secret and a Wish

Before I get to the heart of this post, I want to share a little story with you…..

Once upon a time in a land called Mississippi lived a little girl named Nicole. This little girl adored Minnie Mouse. She had amazing parents who worked hard to take her family on summer vacations. One year, Nicole was so excited to go with her family to Disney World and meet Minnie Mouse. All she wanted to do was give Minnie a big hug. But her parents had other ideas. Her parents wanted her to go on this big silly boat for breakfast. Nicole was very upset and loudly protested. She just wanted to go to the Magic Kingdom and meet Minnie Mouse! She didn’t want to go eat breakfast on a big boring boat.

As she stood in line with her family waiting to board the boat, she began to notice there were an awful lot of children in line. Then, as they got closer, she noticed balloons tied to the boat. “Hmmmmm” she thought, “something is up. Maybe this isn’t so bad after all.” She boarded the boat and sat down at the table with her family. A few minutes later, out of the corner of her eye she saw the red and white polka dots for which Minnie Mouse is famous for. She looked up and was SO surprised to see Minnie Mouse rounding the corner and then making her way to each and every table spending a little time with each child. Her sneaky parents had kept a BIG surprise and that made the experience all the better…….

I remember as a child wondering why would my parents want to surprise me like that. Why wouldn’t they have just told me we were going to a character breakfast. Now that I’m a Mom myself, I totally get it. Sometimes the surprise factor makes the experience that much better. I have a secret and a surprise in the making. Today, I’m going to share my not-so-little secret with you.

In the summer of 2014 my sweet cousin, Shelby, was interning at Make a Wish in Mississippi. She asked her Mom to message me and asked me if Noah had ever received a wish through Make a Wish. I responded with a no and that I didn’t think he was eligible. I thought wishes were only for children with terminal illnesses but my Aunt explained that the requirements were a little different now and that Noah would most likely be eligible. Due to his special needs, Noah misses out on a lot of the opportunities that are afforded to his same aged peers have, so I thought I should contact our local Make a Wish chapter and see if he was eligible. After a mountain of paperwork, we got a letter confirming Noah was indeed eligible for a wish.

Two wish volunteers came out to our house to meet with Noah over Christmas break in 2014.They asked Noah about his wish. After much consideration and deliberation, Noah decided he wanted to meet Darth Vader, see and possibly pet a dolphin, and ride roller coasters. Because Make a Wish only grants one wish, his official wish is to meet Darth Vader. Since Darth Vader “lives” at Disney World, Noah will meet him there also allowing him to ride roller coasters and go to Sea World to see a dolphin. All of that happened so long ago that he has probably forgotten about it and he for certain doesn’t know this is going to happen in TWO days! 

Noah would be SO anxious if he knew about this trip, so we don’t intend to tell him until we are on our way and even then it will just be a “surprise” location for a bit. It may seem odd to some not to tell him but as his Mom, I know him best and I believe this will help with the stress and anxiety a trip of this magnitude would induce for him. I have some tricks up my sleeve to make this trip easier on him and I’ll probably share some of those as we go.

Since we don’t have another child at home, Noah has the opportunity to bring along a “friend.”  Without a shadow of a doubt, I knew if given the opportunity to choose himself, he’d bring the person he refers to as his best friend; my Dad. And where ever Granddad goes, Nana goes so my Mom is going to come along too. We’re thrilled to have them both join us for this special adventure. 

It’s going to be an amazing trip! Make a Wish thinks of everything and works really hard to make this an extra special trip full of perks and fun! To be completely honest, it feels really surreal still. I doubt it will feel like a reality until we are actually on the way.

It seems kind of silly to ask for prayers about this trip, but this is a big trip for Noah. For my prayer warrior friends, please pray that Noah isn’t too anxious, that he embraces this vacation, that he doesn’t have seizures, that he has a great time, and is at peace. Please pray that he does OK with the noise we’ll encounter at the parks, in restaurants, and what not. Please pray for safe travels for all of us and that we all have patience and endurance to keep up with this fearless, roller-coaster-riding dare devil of mine.

And don’t worry, I’ll be sharing photos and updates on social media as time allows so be sure to follow along if you aren’t already!

PS. Remember this is a secret, so zip your lips! ;) 

Christmas and a Special Needs Child

The other day about I wrote about seeing the magic of Christmas through Noah’s eyes. But I wouldn’t be painting a complete picture of the Christmas season if I didn’t mention the hard parts too.

Even with all of Noah’s excitement about the Christmas season, it can still be very difficult for Noah and children like him. Christmas Day is extremely out of routine, there is no schedule. We usually travel to my parents’ house which he looks forward to but it’s just not the normalcy he is used to. It feels like a weekend (which to Noah means hash browns from McDonalds or Hardees) but it isn’t always on a weekend.

I thought I’d share a few of the things we usually do to try and help Noah have the merriest of Christmases possible and perhaps if you are the parent of a child with special needs who gets overwhelmed during the holidays, some of these ideas will help you.

1. Traditions are important. Just like routine, traditions become a part of the Christmas “routine.” Even though it’s only once a year, Noah remembers the things we do each year. For example, we have a very small Christmas Eve “party” (it’s just our little family but Noah likes to call it a party) after the candlelight church service. Part of Noah’s Christmas routine is the church service and then the Christmas Eve party. He knows those things will happen each year.

2. Quiet time is important. If Noah seems overwhelmed, we’ll take him into the bedroom and lay on the bed with him to help him calm down.
3. We don’t force anything. If Noah’s not in the mood to open presents, then we don’t force him to. We’ll either go ahead and open our own presents, open his presents for him and show him what he received, or just wait and try again in a little bit.
4. Even though we don’t force him to do anything, we also try to include him in everything. If he isn’t up for it, that’s OK but we always want him to feel included no matter what.

5. One more thing about presents – sometimes Noah gets overwhelmed with too many to open and his fine motor skills aren’t the greatest so Santa doesn’t wrap Noah’s gifts. They are unwrapped, out of boxes, etc. and displayed nicely and neatly ready for him to look at and play. What presents are wrapped; my family usually wraps in a way that is easy for Noah to open such as gift bags.

6. The past couple of years, Noah is becoming less picky about what he eats but he used to be super careful so my Mom and I would make sure that we had some of Noah’s staple food items to mix in with the other holiday foods we don’t have too often that way he has familiar things to eat.

7. I’ve let go of the idea of the “perfect” holiday. Our Christmas will never look like a Rockwell painting. I realized a long time ago to celebrate the good and the bad. It’s just a part of life and perfect holidays are unrealistic for any family.

If you’re juggling Christmas and a special needs kiddo, my heart goes out to ya! Merry Christmas! 

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.

17 Years

Seventeen years ago today at 2:12 AM this precious little peanut impatiently made an early entrance into the world. I was overwhelmed by the love I immediately felt for him just seconds after his birth. 

And over the years that has not changed. He has taught me some of the most important lessons of my life about love and motherhood. He has pushed me out of my comfort zone and stretched me beyond my limits. I've done things I didn't even know I had the strength to do because of this boy.

Sometimes, I look at him and am just overwhelmed. He is so amazing. I am simply in awe of the amazing young man he is becoming. Life isn't always easy for him but he has an innocence, love for people, and sweet spirit that inspires me. 

Happy birthday my sweet boy! I am so lucky and blessed that I was made for this and God gave me you! 

School's Out for Summer

Last Friday was the last day of school for Noah. 

I always dread summer. Noah's behavior always takes a turn for the worst during the summer because of the interruption in his normal routine. We are only on day 2 of summer vacation and it's been rough! He will be going to the summer program for a couple of weeks starting Monday so that should help! 

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)

Noah during the National Anthem

As a team Mom for Noah's Miracle League baseball team, I have been able to be on the field with him while the National Anthem is being sung. Until last week, I was usually far away and quite honestly not paying much attention to what he was doing during the song.

Last week, I noticed that towards the last line of the song, he begins to get SO excited by kicking his legs and bouncing because he knows the song is almost over and he gets to play baseball.

So this week, I decided to try and video it hoping he wouldn't be distracted by me standing there with the camera. And he didn't disappoint! I love his excitement. It makes my heart smile.

JOY Prom and Special O.

Last week was a big week for Noah as he had both Special Olympics and JOY Prom. 

At Special Olympics, Noah competed in two different wheelchair races. He goes soooo slow but has a huge smile on his face the entire time and thoroughly seems to enjoy himself and that's what it is all about! As soon as he stopped racing each time, he would sign "more race." 

Two days after the Special Olympics, Noah attended JOY Prom.  JOY Prom is a prom for special needs teens. Noah went for the first time last year. To be completely honest, I didn't plan for him to attend this year as it seems to me that prom would lose it's specialness if he goes each year but he already knew about it and really wanted to go. So, he went! He chose the orange accents of his suit himself! So handsome!

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!

Our Version of the Fish Bowl Valentine

I have seen the "fish bowl Valentine" pinned many times this year. You can find printable versions at The Cards We Drew and I Heart Naptime but Noah and I decided to make our own version...... 

Cute, isn't it?

Because goldfish crackers have been a long time favorite of Noah's we opted to use those inside instead of gummy fish. And he insisted on orange hearts instead of red. Very un-traditional and very Noah at the same time.

I left the insides of them blank and let Noah paint them in blue with his beloved dot markers. 

I think when we do the rest, I might use a little less goldfish crackers so you can see his beautiful dots better. Either way, he's proud of them! 

He Loves his Pictures

Noah loves pictures and recently I was looking around his room and noticed there weren't enough pictures around. The crafty girl in me wanted to make him some picture frames but he's been known to take them off shelves or where ever they are and hold them so I didn't want to use glass frames. I opted to just use plain old plastic frames and just let the pictures speak from themselves. 

So I gathered up some pictures and framed them while he was at school. When he came home they were in various different spots of his room; a couple spaced out on the bookshelves, two on the dresser, and one on the bed side table. My the time he went to bed, I walked in his room and found this........

Yep, he moved all the pictures in a little pile on his bedside table so he could see them better! 

(PS. I moved them back the next day and he did it again. Too cute!) 

A New Type of Seizures?

It seems Noah may be having more seizures......

They started about two weeks ago and are a different type of seizure from what he usually has (he usually has myclonic seizures). The newer episodes are like those of a temporal seizure - he stares off into space. When his name is called he doesn't move. If a hand is run in front of his face, he doesn't blink.

We took him to the neurologist just a few days after they started. The neurologist confirmed that they may indeed be temporal seizures and ordered an EEG. The EEG is scheduled for the end of January. 

Since previous EEGs they have found that sedating children alters the brain waves, so Noah will not be sedated when he has the EEG. This is going to be an adventure, folks. I'm skeptical that he will even go to sleep at all during the EEG but trying to not be a negative Nelly about the whole thing so I'd appreciate prayers and positive thoughts.

I'll keep y'all posted! 

This Boy

This boy amazes me. 

This boy also aggravates me at times.

This boy has forced me to have patience

But like me at that age, this boy has no patience.

This boy has been through so much in his life. 

This boy also still has a lot to go through in his life. 

This boy may not talk with words

But this boy has so much to say. 

This boy is loved by many beyond words. 

This boy also loves many beyond words. 

I'm so blessed and lucky that God made this boy 

MY boy. 

Noah's Orange Tree

If you've been reading this blog for long, you know that my Noah loves Clemson and has a cute little orange tree that we put up every Christmas. Our family rule is no Christmas decorations are allowed to go up until Thanksgiving night. We got Noah's tree and ornaments down from the attic on Thanksgiving night but didn't actually get his tree up until the day after. 

This year, I decided to put the tree ON his bedside table. He enjoys sitting/laying on his bed watching movies after his bath so I thought he could see the tree better if it was on the table instead of on the floor beside the table. I think this was a good move. 

He's really enjoyed his orange tree this year! 

Noah's PCA

One thing I am very grateful during this time of Thanksgiving is Noah's PCA (Personal Care Aide). If you follow me on Facebook, you may remember my frustrations with PCA's. We had aides who wouldn't show (and didn't call), aides that would come very late, aides that used offensive language  aides that were lazy and didn't do what they were supposed to, and much more! I was beyond frustrated and had almost gotten to the point where I was ready to just not have an aide anymore because it had just become more hassle than it was worth.

Ultimately, I decided to switch to a different provider. When I chose our first provider, I had no clue what I was doing. I looked online for advice but didn't find anything helpful. I blindly chose my top 5 choices as instructed by Noah's service coordinator from a list of about 100 providers. When I decided to change to a different provider, I knew I would go about it differently this time. I had learned a lot and made up a list of 10 questions. I narrowed down the list of 100 providers to only those in my city and then I called all of those providers and asked my questions. There was one provider that I really liked after my phone interview with them. They were top choice and I prayed they'd have an opening for Noah. And they did!

Working with this provider has been as different as night and day compared to the first provider. In June, they called and said they had an aide they thought would be perfect for Noah named A. They told me a little bit about A including her age, which was 18. I was hesitant at first because that age is so close to Noah's but a friend who used to work with special needs young adults encouraged me to give it a try and so I did.

I am SO glad I did! A is absolutely wonderful with Noah. She's kind, loving, and patient yet firm and stern when he needs that. She goes to school for nursing during the day so our evening hours are perfect for her. The best part? Noah ADORES her! He thinks she is his girlfriend!

One thing this provider does is they do not let their aides work every weekend. So we have a second aide (who's name also starts with an A) who comes every other Saturday and then is our "fill in" aide should should A need to miss a day for some reason.

It's so nice to finally have PCAs in our home who seem to love what they do.

Winter Hats

I love Noah in all his cute little winter hats. So many of his shirts came with little hats so he has LOTS. 

Linked to Special Exposure Wednesday at  5 Minutes for Special Needs

 and

 Wordless Wednesday at 5 Minutes for Moms

God Chose Me for Him

A friend had the below poem on her Facebook page. As I read it, I got misty eyed. It reminds me of my mantra, "I was made for this." I know in my heart that God made me for this and chose me for Noah. 


If before you were born,
I could have gone to Heaven and saw all the beautiful souls, 
I still would have chosen you... 

If God had told me, 
"This soul would one day need extra care and needs", 
I still would have chosen you. 

If God had told me,
"This soul may make your heart bleed", 
I still would have chosen you. 

If God had told me, 
"This soul would make you question the depth of your faith", 
I still would have chosen you. 

If God had told me, 
"This soul would make tears flow from your eyes that could fill a river", 
I still would have chosen you. 

If God had told me, 
"This soul may one day make you witness overbearing suffering", 
I still would have chosen you. 

If God had told me, 
"All that you know to be normal would drastically change", 
I still would have chosen you. 

Of course, even though I would have chosen you, 
I know it was God who chose me for you.

Wordless Wednesday: All Bundled Up

Taken at Miracle League on the day before Hurricane Sandy hit when it was SUPER windy!

Linked to Special Exposure Wednesday at  5 Minutes for Special Needs

 and

 Wordless Wednesday at 5 Minutes for Moms

Sixteen Candles

Over the weekend, we celebrated Noah's 16th birthday with a very small gathering of family at Noah's restaurant of choice. 

Then we headed back to our house where he first opened presents. 

He was totally spoiled with lots of clothes and art supplies! 

Then we moved on to cake. Noah's awesome Clemson cake was made by our friend Deborah. 

As you can tell by the look on his face, he LOVED it!

And....... for the FIRST TIME in 16 years, HE ATE CAKE! 

It was a good birthday! 

Mr. Kangaroo

I have been really sick the past few days - like stomach flu sick that required a minor care ER trip. So sick I have been staying in bed sipping on ginger ale since Monday. When Noah left for school on Monday, he knew I was feeling bad and would be going to the doctor. On Monday afternoon when he got home from school, he had a tiny kangaroo in his back pack (from the school store) and J asked him who it was for and he said Momma. So, they brought the little plastic kangaroo, who in my state of sickness I un-originally named Mr. Kangaroo into my room and promptly set him on my bedside table right next to the tissues and there Mr. Kangaroo has sat and watched over me the past few days while Noahie has been at school. He is such a sweet boy.