National Cerebral Palsy Awareness Day - March 25, 2014

It was 7 years ago this month that I heard the words "Cerebral Palsy" in regards to my own child. Talk about feeling like I had just been punched in the gut, only to leave me without breath. (I think it was about a year and half before I was able to breathe deep again. And as I sit here and type about it I find myself tearing up and gasping for air.)

It had been a long road to answers with much criticism and skepticism (on the part of many, including myself as I questioned my own insanity) along the way. But, then in March 2007, I sat, just me and my precious, soon-to-be, 19-month-old, little blonde-haired, blue-eyed, cherub-esse, boy with the very first pediatric neurologist we saw – only there “to rule anything out".

Well, at that visit absolutely NOTHING was ruled out; only to be replaced with a whole new set of questions, concerns, and fears. A new journey was just beginning!

At the time I thought our world was ending – so ridiculous of me. As I write this, I remember the beautiful poem “Welcome to Holland” (if you haven’t read it I HIGHLY advise you google the title and sit back and read these poignant words) that many of us who learn our child has special needs tend to stumble across and find ourselves sitting, with tears streaming down our faces, totally realizing how much in love we are with our child because the diagnosis doesn’t define him, but only strengthens our awareness of how amazing he truly is. My son is my greatest teacher, and along this journey I have been so inspired, my heart has been completely opened to so much more then it was before his incredible debut. Then I learned that he was such a fighter, so resilient, even before he was born, making me all the more enlightened and inspired.

I share this little blip in the journey with you today because of what today is recognized as: National Cerebral Palsy Awareness Day. I am always raising awareness for Childhood Stroke and will continue to do so daily.  Cerebral Palsy is one of the many diagnoses that Brendon received as a result of the perinatal stroke.

Cerebral Palsy was the very first diagnosis we received which led us to seek further answers which followed over the next few weeks, months, and years.

Today I ask of you to look at the picture of my child 8-year-old child, who loves animals, writing stories, imagining he is a Viking, playing basketball, loves to read, loves to sneak cookies when I am not looking, who has a great sense of humor, who worries about everyone he loves, who is a leader, who is more forgiving than anyone I have every met, and gives the best hugs of love and comfort, EVER. He is one of the millions of faces of Cerebral Palsy.

The more you are aware the more you will open your heart to the gift of WONDERFUL PEOPLE!

The Hardest Job I Have Ever Loved!

I have said this many times but I mean it with the deepest sincerity:  The hardest job I have ever had is being a parent!

With that being said, it is a job I wouldn’t trade for the world.  It is also the job I love the most!

For those who don’t know me, I have had many jobs over my 41 years.  They have ranged from picking up trash in parking lots and painting fences to working for the Division of Family Services to working as a Social Worker in Nursing Homes to, finally, a police officer for seven years prior to Brendon’s debut.

With this incredible job of parenting Brendon and Adelyn have come the biggest heartaches I have ever felt.   For some reason no pain hurts more than when it happens to my own child.  I have had broken bones, torn ligaments, hurt feelings, multiple surgeries (including two c-sections), I have been lied to, made fun of, called a ‘bastard’ because of being born out of wedlock (I’m adopted), been ignored, called ‘fat’,  told I read too slow, called a ‘baby’ by my fourth grade teacher who was too arrogant to understand the reason for my distress, told I would never amount to much by my high school counselor and that I wasn’t smart enough to attend a four –year college (proved her wrong!), and have experienced a broken heart, that has taken years to move on from, friendships ended… nothing compares to when my child, my son in this case, is in pain or is suffering.

Brendon’s speech issues are severe; often times a barrier for him from the outside world.  His words get trapped inside his head and people walk away.  Today we spoke in detail in the car on our way to his first therapeutic horseback ride of 2014 (kicking of the Spring Session) about how he feels when those words are stuck and I am not there to witness or assist. 

Brendon described what he feels like during interactions with his peers as this, “Mom, they ignore me.  It feels like I don’t matter; like I’m not important.” 

I am at the point of desperation with the issues he faces every single day with his speech.  When I sit and think about it I am moved to tears.  Stephen and I discuss it on a regular basis and he is often moved to tears knowing what our son endures with this deficit.

 

Today, while speaking with one of his two Speech/Language Pathologists, I said to her that I just wished she had the magic pill to make this all better for him.  I don’t think I have ever felt so helpless than when it comes to this matter.

I do a lot of research and try to come up with the solution and there is none.  All we can do is give him the tools to work his way out of the blocks and pray that someday it will all come together.  But, I will continue to research and try to find ways to help Brendon. 

So, as with every day we (Stephen and I) just try to make the best of it and reassure our precious children that they are most worthy of love and respect.  We spent the evening as a typical one in our home laughing, telling stories, reading, praying, and snuggling.

I am blessed!

What a Whirlwind of the Past Week and a Half…

Nothing like being on crutches longer than anticipated during a most crazy winter where we there is no lack for snow and ice.  When I scheduled surgery on my right foot I had in the back of my mind, No problem; this one is going to be much easier than the last one. (In full disclosure, the last one, in November on my left foot, went very smoothly and I was doing planks, pushups, and jogging after two months.  I had two corrections on that foot.)  

Well I was W-R-O-N-G!

 

Surgery was scheduled on the 5^th of February.  A brief trip down to Fairfield, Texas was scheduled at the end of the month, February 28^th.  That should leave PLENTY of time in between do everything necessary to keep up with the duties of maintaining a household, a family, a foundation and pack up for the trip.  Oh, and throw in the fact that my husband, Stephen, started a new business which requires being away from the family at times when he is usually home.  All of these wonderful and important happenings occurring; however, none of them have been easy.

 

Just to make it all a little more interesting my body reacts to the stress of it all by having nasty migraines that, basically, force me into a complete halt for at least 8 hours and leaving me completely depleted of energy and brain functioning for days – in this case weeks with back-to-back migraines.  (I literally forgot the name of a friend of mine one day - what the heck?!)

So a week ago Thursday (February 27^th), the Spear family rented a vehicle and packed up, grabbed a set of grandparents and headed south for the weekend. 

I hadn’t yet mentioned the reason for heading to a small town south east of Dallas-Fort Worth Texas.  Why else would the Spear family do such a thing?  For those who are familiar with me would immediately assume it has something to do with Pediatric Stroke Awareness.  That assumption is full-on accurate!  We made the trek and turned it into an adventure!   We went to show support for the Ward family.  They have been deeply impacted by stroke in a child.   Alex Ward, the youngest child of the family, endured a stroke around the time of his birth.  He is turning 7 next week.

Alex’s Mom, Jennifer, and I have become friends over the years.  We would have never crossed paths if it weren’t for the fact that we have both been impacted by pediatric stroke.  Jenn was one of the moms who became my lifeline during a time when I was trying to figure out how to help my child.  She and some of the other moms, I happened to meet via Caringbridge, were a godsend in a time where no one else understood.

For the past six Brendon’s Smile Rally/Walks to Raise Awareness for Childhood Stroke events, the Wards and/or their extended family have come up to St. Louis to show support.  With that being said, where else would the Spear family be on March 1, 2014 for the 1^st Annual Righty Run to benefit Alex Ward, along with a portion of the proceeds going to Brendon’s Smile and ANE Foundation.

 

We made it there and had a WONDERFUL time in Texas with our friends.  Also, it was awesome to spend time with my brother, Mike, and his oldest daughter (my niece) who were able to travel up from San Antonio, Texas – where they currently reside.  (My sister-in-law and youngest niece weren’t able to make it although they had intended on doing so.  The flu kept them from making the trip.)

After a very busy weekend we said our goodbyes and set out to make our trek back home for a busy week involving our work with Pediatric Stroke - the center of our focus - in St. Louis.  It was Sunday morning and a winter storm named “Titan” (how apropos!) was about to rip through our entire path home.   We made it about 3 hours north of Fairfield, just on the Texas side of the border into Oklahoma.   Yeah, I pretty much will admit that I was terrified about our safety and worried as to whether we would make it off of the highway.   God (yes, I went there) guided us safely off the ice-filled highway to a nice place to hang out until we could get back safely on our way. (And, I have to give a shout-out to Stephen’s expert driving skills!)  We were able to leave Monday morning and made it home around 7:30 that evening. 

Adelyn, by now, has had enough of being schlepped (another word so apropos – love my Jewish friends!) around for the past six months and is quite ready for a routine.  Brendon went to school on Tuesday.  Addie and I worked on trying to get our home back to normal after I had been out of commission for the previous four weeks.  We made some headway.  Oh, and we got our dog back from his resort where he, too, had an unexpected extended stay.

 

Wednesday brought us to the long awaited meeting with Dr. Heather Fullerton.  Every year the Spear family gathers with the guest lecturer for Annual Brendon’s Smile Lecture at the Washington University School of Medicine.  We meet at a dinner reception to welcome the lecturer and speak with other guests who happen to be amazing physicians from the departments that are all impacted by strokes in children at the St. Louis Children’s Hospital.

Dr. Fullerton spent three days at the Washington University School of Medicine and the St. Louis Children’s Hospital where she consulted physicians in regards to her expert knowledge about strokes in children.

Friday morning was the 5^th Annual Brendon’s Smile Lecture which I always attend.  It was a “packed house”.   Basically, 250 brilliant minds that specialize in pediatrics, neurology, hematology… were gathered for the lecture.  After the lecture I met with several people to discuss the impact this lectureship has on pediatric stroke.  It was noon by the time Adelyn (who was awesome throughout the entire lecture) and I returned home where I had a HUGE adrenaline dump!

The feeling of empowerment is incredible.  To go from completely powerless to totally empowered is incredible.  Brendon has inspired such a powerful movement to help the masses and encourage learning to help other children like him!

 

I am blessed!

Going back to Monday, February 24^th, in regards to my healing foot, I was given the permission to start weaning off of the crutches over the next few weeks.  After a conversation that about drove my doctor nuts because he was dealing with me – the “I can’t sit still, how long is this going to keep me down?” person that I am – I learned that I should take it slow, wean off the crutches, yet the weight bearing wouldn’t cause me harm as long as I took it slow.  My doctor tends to look at me and shake his head a lot.  Sometimes there is an eye roll.  So by Tuesday morning I had thanked the crutches for their service and bid them farewell!

I am still wearing a LARGE boot that is rather Herman Munster-esse (as in Frankenstein – if you don’t get it then google it!).   It is my dream that I can retire this boot that has carried me through two surgeries and over ten weeks of service on Tuesday for my follow-up appointment.  I want to wear a tennis shoe so I can move easier!

The picture is of me with Dr. Heather Fullerton after the lecture.

And there it is – a Whirlwind of a Past Week and a Half!  ;)

March is Cerebral Palsy Awareness Month

Often times people get confused, as did I in the beginning...

My son has several diagnoses as a result of the perinatal stroke he endured before he was EVEN born. One diagnosis is Cerebral Palsy, specifically right-sided motor disruption. This means that Brendon's right side is impaired and not equal to the left side of his body. He may not run as fast as most kids, he may not be able to pick up his right toe when he runs, he may need assistive devices to keep from falling when he runs, he may need injections to loosen the tightened tendons and ligaments that refuse to stretch with his body when he grows, he made need hours of therapy each week to help him move better and speak better, his right hand is weaker and often times he tucks his thumb into his palm, along with his entire right arm, he may look different sometimes in comparison to other kids his age when he runs, jumps, cuts his food on his plate, writes, he may take longer to speak than most his age because his speech was severely affected..

Yet, he has the most handsome face you would ever lay your eyes on, he is extremely compassionate and understanding of other people, he is highly intelligent, he is very protective of his sister and the ones he loves, he may have to work harder than most to dribble a basketball down a court and shoot a basket but he can do it, he has an awesome sense of humor, he can read at a 4th grade level even though he is only in second grade, he would never even think of getting anything less than 100% on a spelling test, he loves to make up stories about warriors, knights, and vikings, he loves to learn about animals, every day he imagines he has won the BIGGEST lottery so he can own a farm or a zoo, he gives the most amazing hugs and kisses and loves to do so, he tells his family he loves them at least 10 times per day, and this past weekend at a 1 mile race at the 1st Annual Righty Run he ran a 4 minute and 56 second mile placing 4th, he is extremely competitive (taking after a parent of his), every opportunity he gets he raises awareness about his differences so other kids can be aware...

Basically, make it a point to smile at someone who you may look away from because you are uncomfortable about his/her differences but know that if you take just a second to be aware that even though that person may look different on the outside he/she is more like you on the inside and might quite possibly win your heart and change your perspective, even inspire you to become the best person you can be! I opened my heart and have been inspired by some of the most amazing people, my son included!

March is National Cerebral Palsy Awareness Month and KNOWLEDGE IS POWER!

PS: Babies, even unborn, and children have strokes, too!