Another year has passed…

Why is there still not a cure? Why hasn’t the government put more emphasizes on research for Cerebral Palsy. Why are opportunities limited? Why are we suppressing and shutting down individuals? Why are we ostracizing them? For such an overwhelmingly common disorder, you would think that those living with CP would be able to have the same healthy lives of those of the rest of their community.

Honestly, I’m not bitter that we are so behind in mending the damage done to ones brain and having more open doors. I’m frustrated that it takes awareness days to remind everyone the significance of such a challenging disorder. But as long as I’m living I will stand for CP and spread awareness to all.

Linden reminds me everyday of the jumped hurdles he must go through to find peace and independence. His own frustration with not being heard, understood or taken seriously is showing signs of emotional breaking. As he gets older he is realizing his differences among his peers. Furthermore, his new baby brother will show him of the things he “can’t” do. While I am not one to say my son “can’t” do things but being realistic, there will be things that won’t be the same. Over spring break I was playing on the playground with Linden and a family member was with me. Linden was so excited to be playing and being among other children. He was bouncing all over the place (with support). He wanted to climb the rock wall, monkey bars and stepping bridge. All these things he pointed at, my family said he can’t do that. Notice I didn’t use the quotations. The word can’t was used in a perspective of his independence. Sure he can’t do it alone, he will need help but to say he “can’t” do it would mean there would be no way in the world possible. I challenge that word! CAN’T…think about it…I made sure he did it all. He CAN do the rock wall! He CAN do the monkey bars! He CAN do the stepping bridge.

I tell this story to give different view points on word choices. Some of my favorites are disability versus ability and disability versus eligibility. I’ll hold on those for now (another day, another post). I speak, stand and fight for Cerebral Palsy awareness not only for a cure but for opportunities. Why have limits on things? Why use words that actually have no bearing on ones ability? Why have stipulations on eligibility?

I ask all those reading today to stop and think about those with CP. They are a part of us. They make up our future. They inspire our every being. They teach us…

Cerebral Palsy Awareness Day is Sunday, March 25th. Spread awareness by wearing green!

P.S. Sorry for the long time between posts. Life has been pretty crazy for my family since the summer but we’re back! Stay tuned for the latest on Linden and his new baby brother.

Today is World Cerebral Palsy Day! Today we celebrate the accomplishments of those living with Cerebral Palsy and the medical advances made to treat them. This day is to also bring awareness to the world on Cerebral Palsy.

My family values this day for Linden but also for all those we have met along the way. I encourage all of you to take time today to educate yourself on the causes, challenges, treatments and accomplishments of Cerebral Palsy.

This month holds a memory for me and my family. This month 6 years ago my son was diagnosed with Cerebral Palsy. He was 10-11 months old when we found out the devasting news of our son’s utero stroke that caused brain damage resulting in Cerebral Palsy. For these last 6 years we have been on our “colorful” journey to get answers, find appropriate treatments and equipment and help others with their journey. This road has not be easy but rather long, emotional and down right tough at times. None of this has or will stop us as we continue to fight and support our Champion on his adventures.

Please feel free to share a story you have about yourself, someone you love living with Cerebral Palsy or your experience with it as a medical professional.

Spread the word…World Cerebral Palsy Day today!

Wow these last four weeks have been a whirlwind. Our family had quite the busy summer which is why my blog posts have been MIA. We sold our old house, bought our new one, I went to school at nights and weekends, Linden had camp and we’re expecting a baby brother. As for these last four weeks, I started a whole new career and Linden started school. I am now a proud special education teacher. While it’s extremely rewarding it is quite stressful and Linden has definitely been feeling the effects of mommy being so busy. He’s had some big transitions and his patience and flexibility have shined.

School started a day later for Linden this year as Texas was hit by Hurricane Harvey. The damage and devastation our fellow Texans have endured and continue to leaves our family speechless. We were spared and are extremely grateful. Due to flooding in our area Linden’s school district canceled the first day of school. I teach in a neighboring district and they too canceled school as well as had a delay the next day. This gave me the opportunity to take him to school on his first day.

New friends, new educational team, new school! Whoa! This momma was not prepared for the on slay of emotions when taking him to school. As you know, my husband and I are extreme advocates for Linden. We made sure everything was in place and ready for him to transition to the N-E-W. While we were nervous, he was completely fine. He acclimated extremely well to his new “everything”. In fact, I hear he’s quite the social butterfly. He’s getting to know everyone on campus and has quite the following. What do you expect? He’s a cute kid with an infectious smile that you can’t resist.

His teacher doesn’t have experience with kids like Linden so we are using this as an opportunity to educate her (and others) on what he’s all about, our expectations and his educational legal rights. This is never a smooth process as some can take it as we’re being high maintenance however we are gentle and are making a point to have them understand that we are partners. We need to work together to ensure Linden’s success. So far his teacher is great! She has quite high expectations for him too in some area which has impressed both my husband and I. Check out the cutest kid in 1st grade.

Since school has started, his normal activities have also started back. Besides his million of therapies a week, he’s back on the saddle and in the pool. He’s riding again at A.W.A.R.E. with the wonderful Tracy. He’s been there since he was 18 months old. We’ve been fortunate to continue this each year with financial support from some great organizations. He’s also back at swim lessons. He’s definitely giving his instructor a hard time. He just can’t close his mouth in the pool. This momma on the side lines is losing her mind fearing secondary drowning while he’s having a blast. You see, he can’t stop smiling. I kid you not! He smiles all the time that sometimes it gets him into trouble. This smiling is causing him to forget to close his mouth while in the pool. This is going to be a continued skill we will have to work on.

As Linden gets into the groove of his new routine, he continues to show off his improved and mastery of skills. I’ve included an amazing picture of him STANDING INDEPENDENTLY. Yes I said standing independently. He’s been working on this with Mrs. Emylie for quite some time and he showed us that no matter the surface, he can do it! Check out his face. He’s so proud!

For all those momma’s, daddy’s and caregivers out there, give yourself a pat on the back. Our kids made it through the summer to start school off with a bang. Each year reminds us of how special our little specials are and how grateful we are to have them. They constantly teach us to have a life of patience, kindness, open-mindedness and HOPE.

 

 

 

The weather was great. The kids were energized, and the activities were planned. It was time for Camp CPals.

“Camp  CPals  at  Camp  For  All  is  an  overnight  weekend camp  where   campers  of  all  ages and  abilities  gain  self-confidence,  independence,  learn   new  skills  and  build relationships  with  others who  share  their  challenges in a safe and  fun environment.  Individuals  learn  what  they  CAN do  – not what  they   cannot.”

This year was the 2nd annual event that included about 16 families. If you’re not familiar with CPATH; it’s a non-profit organization that helps families and individuals with Cerebral Palsy access resources, support and financial assistance. They have made sure Camp CPals has no limitations and that all are included. With that said, each family has a member living with Cerebral Palsy. It was an emotional weekend to say the least. Challenges were faced head on and each child overcame fears that they never thought they could.

Day One:

We arrived at Camp for All on Friday, May 12, ready to have a weekend with zero judgement and barriers. We were assigned to a great cabin with two bedrooms and our own bath. It was way more space than we needed but we were very grateful. After we got everything unpacked we headed to the the pickup spot for horseback riding. It was just a short ride to the barn where the therapeutic horses were waiting. In our group were 4 other families. Most of the kiddos were around Linden’s age which was perfect. After all the kids were saddled up they were off on the trail ride. I loved watching Linden show his skills. He’s been riding since he was 18 months old so he’s pretty comfortable on horses. His guide led them through a winding trail in the near by field then it was back to the stables for their petting zoo. They had all sorts of animals; llama, goat, sheet, miniature horse, donkey, pig and a cow. One by one they came out to greet us and let us pet them. It was a treat to have such a small group have special time with these animals we wouldn’t of otherwise of gotten.

After, we were on our way to meet up with the rest of Camp CPals group for a quick meet and greet and “energizers” (camp staff led songs and dancing). Linden was all about the energizer. He loves to dance so this was right up his alley. Once we got our wiggles out and felt more comfortable with everyone, it was time for dinner. It was your typical camp food. I will say Linden did eat so I was pretty proud of him. Take note that as that was probably the only full meal he even ate the entire weekend. We had a chance to talk to other parents during dinner which was nice. We all had a common topic, our CP kids. We don’t get to just relax and relate like that everyday so it was extremely nice to meet them all. Once our tummies were full we headed to the campfire and s’mores. More dancing took place and Linden found his crush, Hallie. She is a little older than him and the perfect friend to all children of abilities. It warmed my heart to see her interact with Linden.

After all the afternoon and evening activities, it was time for bed. We headed back to our cabin for showers. The beds are your traditional camp layout. There were twin beds in singles or bunk beds. I opted for the single bed and daddy and Linden shared a bunk bed. It took a bit for us to settle in but as soon as our heads hit those pillows, we were out!

Day Two:

We woke early on Saturday, ready to see what the day had in store for us. Linden was so excited he was trying to head out the door before we had our day bag packed. We ate breakfast and had our camp hosted energizers then we were headed with our group to the “Giant Swing”. I couldn’t wait to see what this was all about. Linden wasn’t as thrilled. Kids were put in harnesses from top to bottom. They were then buckled in to a harness line that dangled 10 feet above the ground. From there the line went as high as 75 feet. Linden refused to go. After all the kids went up and were swung back and forth he built up the courage to go for it. I was a nervous momma but the staff were very qualified and ensured every child’s safety. Linden went up and was unsure at first but as soon as they let him go he was OFF….he loved it! Video included, click here. He was smiling from ear to ear and laughing. He loved it so much he went 4 more times. I was so proud of him for conquering his fears.

After all the excitement it was time for archery and small animals. Linden was not in the mood for the animals so we skipped over to the archery range. It was a bit tricky for our kiddos but with some adapted bows and extra equipment our kids became pros in no time. Linden didn’t hit the target but that’s okay because he tried something new and I couldn’t be more proud of him. Once our group got their fill of bow and arrows we were off to lunch. The kids were tired and the sun was starting to wind them down. This meal was yet another one that Linden ate very little of. He was cranky and needed some down time. We headed to the cabin to get in our swim suits but found ourselves laying down for 30 minutes. I think it helped Linden. Once we gained our energy we were off to the swimming pool. It was a great accessible pool. It had several swallow areas and a gradual slope that made easing in tolerable for some. Once daddy and Linden were set in the pool, I was swished off to my mommy massage. I was given a fantastic 15 minute massage with no interruptions, no one screaming that they needed anything and no one in my face. To say it was nice would be a understatement. It was AMAZING!

After pool time were the children activities and respite for the adults. It was awesome! Linden was paired up with a fantastic gentleman that took to him so easily. It really put us at ease. Linden and his buddy were off on a scavenger hunt and a superhero party. Us adults were kind of beside ourselves. We were given 3 hours of “us” time. It was so nice. The camp staff hosted a indoor ropes course and zip lining activity. We had no one to look after and it was amazing! Before the ropes course we played a game called Cookie Face. It’s like minute to win it and William volunteered. It was hilarious. Click here to see the video. I couldn’t help myself. I also included a video of William zip lining, click here. He had a blast.

After our adult time, we went to pick up our kiddos. You could see the exhaustion on their faces. They were spent! Linden was dressed as a super cute superhero and was holding a new souvenir, a pet rock. I’m assuming he found it along his way during the scavenger hunt. Either way it was his and he was keeping it. Dinner was served which was again okay but we gobbled it up. Being active and in the sun all day made us have enormous appetites. Our energy levels were drained but the camp staff had one more activity planned. They set up carnival games in which the kids won tickets for prizes. Linden did really well and had a blast but our fun was short lived as he was beyond tired and done for the day. We got him a snow cone before heading back to our cabin for the night.

Day Three:

We slept hard, especially Linden. He woke up with crazy hair but with a giant smile. This was our last day. We packed up our stuff and headed to breakfast. Our group seemed to of grown smaller overnight. Families left the night before due to Mother’s day. Oh I forgot to mention that Linden made me a card with all his favorite things listed about me. It was the sweetest thing ever and was the perfect start to my Mother’s day. After breakfast was the biggest activity of them all. It was the giant rock climbing wall and zip lining activity. I was nervous as the wall looked way to much for Linden. I just knew his little muscles would tire fast. I knew fear would set in and he would most likely avoid this entire activity. We decided to jump real fast with Linden and get him harnessed up before he had time to really think about it. We found a fantastic staff person that took his mind off of his fears. Before we knew it Linden was climbing the wall. Click here to see the first part. He was doing wonderfully. He got over half way up and fear started to set in. I think him looking down didn’t help. Our group were fantastic cheerleaders and we got him to the top. I couldn’t be more proud of my baby. He defied all stereotypes and challenged himself with things he didn’t think he could do. Seeing all these kids with Cerebral Palsy was a sight to see and beyond emotional. I’ve included a second video for everyone to experience. Once Linden was up the wall it was in line for the zip line. I set myself up on the other side so I could get the best view of him zipping down. I swallowed the lump in my throat, wiped the tears from my face and prepared for my baby to show the world he’s awesome. Down he came with a infectious smile and he was having a blast. The cheers came from every direction and I could see tears being wiped away among members. It was amazing and I’m blessed he got to do it. Video here

All in all this was a weekend of pure emotions. He overcame more in these three days than most kids do in a year or even lifetime. I am so proud of my kiddo for stepping out and braving the challenges put in front of him. I’m also proud to call these families our new friends. Camp CPals was amazing and CPATH is even more amazing for making this possible for my son. Thank you to CPATH, Camp for All and all the wonderful volunteers.

 

It was hot and no shade…the kids were energized and excited to be out of their daily routine. It was the schools annual Boosterthon Fun Run! Each year Linden’s school hosts a fun run to raise money for teacher grants. Linden raised over $300 in donations and pledges this year and we couldn’t be more proud. Really it started with me reaching out to family and friends that we knew asking for donations. For each donation and pledge made in Linden’s name, it pushed him to do more laps. I had anticipated him completing 30 but he out did my expectation and did 35!

He had a fan club come and cheer him on; Maw Maw and Paw Paw. His grandparents drove up from Dallas to see him complete his laps. Of course his favorite fans were there too, Mommy and Daddy.

At first when the Fun Run came about in emails and newsletters at school, I waited to see if there would be an email asking me how I would like Linden to participate. After no email in sight, I decided to reach out and address the elephant in the room. His kinder teacher and special ed teacher were on board and were excited that I had pushed for his participation. The original plan was for him to complete his laps in his wheelchair per his teachers however I just couldn’t accept that. I pushed for him to do them in both his wheelchair and walker. He completed the first 33 laps in his chair and the final two in his walker. He did wonderfully. The smile on his face and the high-fives given around each lap showed that him and his classmates were loving the run. They had water stations set up for the kiddos however they were troupers and kept truckin’ along the track with very little stops. I was so proud of all of them!

After it was all said and done, he completed 35 laps and raised over $300 for his schools teachers. I am thrilled with the amount of money donated by family and friends. It shows that people are present and rooting for Linden’s success. The money was more than just teacher grants. It was to prove Linden can do it! He can do it all and will continue to become stronger and successful. It proved that people have full faith and heart in his abilities to thrive. Thank you everyone for your continued support of our Little Warrior.

 

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