A parents internal vision for their children lies deep within them. They cradle this vision, keep it safe, keep it thriving, keep it “normal”…

We all have dreams for our children to grow up, be independent, successful and have purpose with passion. In fact as our little ones grow in our belly’s we are already planning out their life’s. He’s going to be a football player, have tons of friends, go off to college, get married and have kids. Ask yourself, didn’t you do that? Most of us parents have. I am guilty of doing the same with my first born. This reminds me of the story I was introduced to when he was first diagnosed with Cerebral Palsy at 10 months old. I was in a workshop with Parent to Parent and the speaker could see the fear, hopelessness, struggle and lost feeling in my face. There was no hiding it. She handed me this piece of paper, hugged me and smiled deeply as if talking to me without words. As soon as she was out of sight I turned the paper over and there…Welcome to Holland by Emily Perl Kingsley. It was exactly what I needed at that very moment. As I read I walked with tears pouring out of my eyes. I couldn’t stop reading it, over and over again. It spoke to me with intense emotion with that vision I had changing right in front of me. For years after that first diagnosis I lived in a world of not myself. I had a wall up. I never let others in. I started having full panic attacks. I was crumbling, living in survival mode.

I say all this because I feel I’m having that same crumbling moment now. I have grown so much in these 8 years with Linden. I can handle things a little bit calmer however this one was a stab straight through the heart. A pain that I don’t foresee giving me any relief soon. You see we were all set up to go to Italy but instead landed in Holland. We love Holland! It’s not been easy to say the least but Holland is exactly where we are supposed to be. I as a mother, teacher, person that has come full circle to be in love with my life. I’m Linden’s biggest advocate. I’m his voice when he can’t find his. I’m his teacher helping him grow and thrive. I’m his mother…I’m the lucky one!

Diagnoses: Let’s recap over the 8 years what he as been diagnosed with, shall we? Join me on this journey of remembering the pain that came with each new one…

MRI discovered Stroke in Utero-10 months old

Hypotonia-diagnosed 10 months old

Ataxia-10 months old

Esotropia-10 months old

Cerebral Palsy-16 months old

Speech Delay-2 years old

Factor V Leiden Blood Clot Disorder-3 years old

ADHD/Anxiety-5 years old

As if these weren’t enough we were in for it with Linden’s up coming psychiatrist appointment. You see for the last 3 years we have been in a never ending battle of uncontrollable behavior, rage if you will. We have been trying to mange it with medication but it seemed ever few months (sometimes weeks) the medication had been outgrown and we were back in the middle of these meltdowns…severe meltdowns. Linden struggles with managing his emotions and recognizing them. With that, once he hits the “lost” point there is no recovery except time…sometimes 6 hours with a hospital stay. We’ve been bitten, hit, kicked, things thrown at us; leaving us with blood and bruises. Our hurt for our little boy was immense. We have been playing the medication game for 3 years, THREE YEARS! We were done! DONE! I have called and applied for any and all services but with always a denial response. You will never understand true defeat until you’re on your knees crying over your little boy, who for a moment has found a second to breath and rock himself, begging for his relief and help all the while knowing you have exhausted ever bit of research, non-profits and foundations leaving you empty and broke.

We discussed all sorts of causes; Oppositional Defiant Disorder, Bipolar, and Autism. With help from Linden’s doctor she was able to get us in to see a highly regarded psychiatrist here in Austin. Upon arrival they informed me that they had received all paperwork I had filled out prior to arriving and will be using it to see if their results align. We are escorted to our room. It was eerie to say the least. On one wall had a two way mirror which thankful Linden had no clue. There were very few kid items out and a hidden baby monitor on the counter. We sat there for about 20 minutes waiting for the doctors knowing they were watching and listening to everything. The door opens and three women enter one by one introducing themselves; psychiatrist, psychologist and nurse practitioner. We were all a little overwhelmed. Linden was timid at first but after 10 minutes he came around and worked with them.

So many questions…so much information…2 hours later we were sitting there in front of the doctors anticipating an Autism diagnosis.

Intellectual disability…………………sensory integration disorder………………….

(Silence)

We knew this was going to come but we didn’t know when and we certainly didn’t think it was that day. We were in shock and our minds racing. These doctors were awesome how they told us. They were kind and understanding. They made sure to include positives about him. They had great advice with warm voices. I felt safe and scared at the same time. For goodness sakes! We loved Holland! Now we’ve landed in a whole new place that I know nothing about. This isn’t just Cerebral Palsy anymore, it’s bigger!

When we left William was speechless and unable to get thoughts out. He was in such pain as I watched him from the passenger seat. I wish I could help him. I knew that pain all too well because that was me 8 years ago. It’s not a safe place. That ride home was quiet and somber. My mind racing on all my new to-do’s and research. Contact our social worker, get his doctor to call in blood work, change in current medications, create picture communication cards for routines, fill out the medicaid buy-in application, contact current neurologist for bathroom help, schedule a new appointment with a specialist in Cerebral Palsy, get an ARD scheduled before school starts, contact after school care and work out a plan for him, and get in touch with my local MHMR. Just the thought of what we have in store is exhausting.

So we at first thought Italy but then landed in Holland. We love Holland for these last 8 years but now our plane has landed in a totally different place. It too we will love. Our journey is far from over and while this diagnosis is the worst any parent wants to hear, I did find peace. The peace I needed to understand what was really going on with my baby. My husband and I are fighters. We have been for the last 8 years and we’re not giving up now.

“We are the champions, my friends

And we’ll keep on fighting ’til the end

We are the champions

We are the champions

No time for losers

‘Cause we are the champions of the world”

-QUEEN-

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We took Linden to Kerrville on this past Sunday knowing we would leave him for an entire week. There was no way I could leave him. I know he would have fun but wouldn’t he miss me? Wouldn’t he wonder when we were coming back?

To say the emotional separation was difficult is undeniably hard. Leaving my child for one week without me is one of the most difficult things I have ever done.

When we left him he was ready to engage in peer activity. He was ready to let go of Mom and Dad and just have a great time. I knew that by day 2 he would wonder “why am I still here?”. I myself wondered if I should call him to check on him. It took great strength to just let him be.

When we went and picked him up for the Awards Ceremony it was not what I expected. They had the parents come in and sit behind a railing while the campers came in after completely separated from us. All I wanted to do was hold my little man and tell him how much I missed him but I had to wait an hour and a half, torture! I just wanted to wrap my arms around him and tell him how much I missed him. The wait was antagonizing!

Finally the evening ceremony was over and I could hug the arms of my child. He was over stimulated and over tired (not surprised). He was ready to come home. We loaded up and I spend the next hour drilling him of camp questions. I couldn’t wait to hear of his adventures. Of course he was exhausted but that didn’t stop me.

He crafted, swam, rode horses, had dance parties, did arts and crafts, archery, and many more things. He had an phenomenal time and says he wants to go back next year.

I am so proud of him for taking a leap and being independent with a new experience. He made so many new friends and looks forward to next year.

Do you consider yourself pretty accessibly minded? Are you conscience of those in your group and how they can access things? Are you constantly thinking of how your child will get around or perhaps “function” in out of the home environments?

For those of us with special need kiddos, these are our constant worries. We want our children to be able to be among their peers and have the same accessible opportunities. But let’s be honest, that’s a fight in of itself. While us parents can only light so many fires to get access, there are times when we come up empty handed. Those are the times we feel defeated.

THEN there are those moments when all hope is restored and people go out of their way to make it accessible friendly for all. Those are the ones that you hang on tight to and acknowledge our gratefulness for their accessible mindset.

Linden was invited to a classmates birthday party this past week. These two were in the same class last year so they are continuing to build on their friendship. This little girls older sister, Reese, took Linden under her wing last year as his 5th grade mentor. She was always by his side; helping him get around and exuding her carefree humble spirit for all to see. She was and continues to be a blessing in his life.

About two to three weeks prior their mom texts me to see if we thought Linden could do a cave tour if we had as many adults on deck to help with mobility. The last time we went was when he was 2 and much lighter. She explained that if it was too tough of an option for him then she was going to come up with another party plan. Can you believe that?! She was taking into account my son’s needs before making a definitive plan. I can’t even begin to tell you how emotionally struck I was.

My husband was off that day so we were able to make the party work. We were all looking forward to it. Linden was going to get to see his classmate and Reese. Him and Reese are joined at the hip when together. It’s the most precious thing to watch. Linden smiling, no care in the world, being a kid and enjoying every second of it.

The cave tour was tricky but with all the pre-planned support it went without a hitch. All the kids had a blast! Now as for my leg muscles, whoa! Up down up down up down so many stairs. Honestly it was a good sore. I had a wonderful time with wonderful people but most of all because the humbleness of this family to ensure the inclusion of my son warmed my heart.

From the bottom of my family’s heart..thank you Watson family for restoring our faith, giving us the opportunity to make memories with you all, and having an accessible mindset.

 

These questions were posed to me here recently and to be honest I’ve never received them before. I was caught a bit off guard but still happy to answer.

I like to think I’m an open book when it comes to educating others on a variety of things from my family’s journey, Cerebral Palsy, living life with a unique child and even the exhaustion that comes with it all. I embrace peoples curiosity.

You see, as a special needs mom this question is undoubtedly always in the back of our minds. It is always lingering in each moment, of every minute of our lives. The wonder is real people. The how is even more real.

My husband and I plan for Linden’s future through tons of discussed scenarios. It’s hard to visualize where he will be once he is done with high school. It’s hard to see where he will be academically. Of course like every parent you see your child growing up, going to college, getting married, having children, and having a “normal” life. Well we have to be realistic here. Not everyone is on this “so called normal” path. Times have changed and so are the norms. Keeping that in the back of my mind I still have to be aware of a few possible paths Linden could go down.

My first response is…he will be with me forever! I know that can’t be possible. I also know that I prefer him to not be in a group home. I want him to be surrounded by those that love him and see that he is taken care of. Who can that be? The “burden” can’t be on his brother Sawyer. I can only imagine the amount of responsibility Sawyer will secretly carry on his shoulders once he is older anyways. Plus we as parents can’t put that on him either.

Our discussed current plan is that we will have land one day and he will have a fully accessible house on it along with our own home. We wouldn’t be too far from a city so he can have access to transportation and medical care. I want him to be independent and have a working trade. He loves music and movement. He has a very gentle side to him that can help him in a nurturing kind of field. I’m still not sure what career path he is destine for but I do know that my family and I will not stop continuing to teach him independence, life skills and his academics. Regardless of the struggles he has now and will have, he will have a Linden “normal” life and we can’t wait to help shape it with him as he grows older.

Now I know what you are thinking, “That’s not that much of a plan”. You are absolutely right. But honestly how in the world am I to know what his path and journey will look like for him as a 2nd grader. I can only speculate at this moment. I have to keep doing what I’m doing and hope for the best. That’s all I can do!

To end, I do want to say I appreciate this question. It put it out there and not only in my head. Talking about these things aside from my husband, makes it a little easier to digest. I encourage questions from everyone. I encourage you to think about those paths and journeys your little ones will possibility go on. Talk about it! Talk about it for real!

 

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!