It has been over a year since I blogged.  This past year has been interesting.  Shortly after my last post, my beloved sister Kate took her life with a lot of RX drugs. We wanted to protect her and said her cause of death was Acute Respiratory Distress Syndrome.  It was.  But is was a direct result of her taking a ton of meds she was prescribed.  She suffered from chronic depression. She never knew how much love and happiness she brought to us and everyone that knew her.

This is important.  She struggled with depression and nothing anyone did would convince her she was loved and valued.  We have a loving, crazy, fun family and we do a great job of making sure our loved ones know they are loved.  She was included, valued, loved. She didn't see any of that.  The reason this is important is because there might be someone in your family that is like Kate. 

Someone who makes every experience fun and comfortable.  Someone you can confide in and talk to or listen to and laugh with and learn from.  Someone who rolls her eyes at you at every suggestion for shenanigans but goes along it with anyway.  Someone who loves your child with her whole heart and wants to do the best by him. Someone who, after they leave you and a family gathering feels empty.  Not a day goes by that we don't miss you, Kate. You live on in our hearts.

This is important.  I don't know how to change someone's mind.  I don't know how to convince someone that feels worthless and unlovable that they are, indeed, LOVED AND VALUED.  I wish the Mental Health System was better equipped to help people like Kate. Worksheets don't work. Telling someone to name things they love about themselves when they don't, doesn't work.  I know Kate was loved. I so wish she could have seen herself in our eyes.  From Drew's eyes.  He loved her and loved every minute he spent with her. 

We went to an Easter Egg hunt today.  It was wonderful.  My favorite part was when a woman we have never met asked 'what is wrong with him?' then immediately followed it up with 'I don't know the right way to ask that question' .  I told her the better phrase was 'what is his diagnosis'?  I was not offended; I was glad to educate her.  We had fun at the adapted Easter Egg hunt. Drew and Logan battled it out to see who got more eggs.  I am pretty sure Drew Roxx won.  ;}

Next we stopped at Kroger.  Drew is not a fan of grocery shopping.  But he did a great job.  Probably cuz I bribed him with Achatz Pie.  We were expeditiously shopping and there were a few Kroger employees in one of the aisles.  Drew and I were greeted with a 'hello' from the staff members.  Immediately after I heard one gentleman say under his breath 'Just when you think you have problems'...  I am sure he meant well, but I would like to clarify.

My son is not a 'problem'.  He is the biggest source of joy and love I have in my life.  I heard you.  He might have.  If he did, I hope he didn't understand.  He loves unconditionally; he would never see another person as a problem. He understands everything.  Except ignorance.  It is not in his make-up.

Everyone is fighting some sort of battle...be kinder than necessary.  Life is ridiculous...just go with it.  Spring is just around the corner. Embrace life, blog friends.  It passes too quickly.

Unwritten.

Hello, Blogger friends! I don't update you as much as I should, since Facebook provides immediate gratification and instant feedback.  But, Drew continues  to ROCK OUR WORLD and makes us happy every day.

There have been a lot of really positive things happening with Drew.  Mostly intangible things...things a mom and dad feel and see but can't really explain. I know you get it, Blogger friends.

We finally got his Mustang Walker, and he is building up his stamina and mad skills back up so he can walk unassisted for hundreds of feet, like he was able to in the Fall.  He is now trying and sometimes successfully opening his Left hand to assist us in feeding him! He is still a smart-ass and we love that about him.  Once Spring comes, watch out! We gon' TEAR IT UP in Shel Town.

I can go on an on about all we have planned...but I don't want to bore you!

 Today was one of my favorite days in a loooong time.  Drew had a great speech session, has been averaging 80pct on Comprehension for short stories, answering questions! He continues to amaze us every.single.day.  He is so fun, adventurous, sassy, funny, smart, cool, empathetic, silly, sweet, loving...I could go on.

But back to why today was one of my fave days.  He rocked in speech therapy.  Next was OT.  Drew has been attending Crawl, Walk, Jump, Run Therapy for 7 years. I will not bore you with all of the gains he has Mae or how much I love this clinic and every employee in the the building. I will save that for another post. Suffice it say, it is hands-down, absolutely the best and most effective therapy clinic Imhave ever seen. More to follow about that :)

Back to today:  Drew drank out a straw today!!!  He is 13. We have been working on this for years! He has Spastic Quad Cerebral Palsy, which means his brain and body do not communicate. He struggles or is unable to coordinate the tasks that most of take for granted. Everything he wants to do, his body seems to do the opposite. Pursing his lips, sucking and maintaining the suck while swallowing is practically an Olympic event for him.

Thank God that he is so stubborn and hard-headed that he did'nt give up!  Thank GOD for the skilled therapists at Crawl, Walk, Jump, Run Therapy Clinic that never give up on our kids.  They take time to know what every person needs, and takes time to enhance the strengths and challenge them to make progress.

Thank God for you, Crawl, Walk, Jump, Run staff for helping our kids and educating us how to carry over skills at home so real progress can be made.

I cannot wait til Breakfast! I pray Drew sucks down a huge glass of OJ, through a straw!!!!

Thanks, Blog friends! Peace and love...

So much cool stuff...

Drew continues to ROCK OUR WORLD.  We had a great time last night at the SuperheroTraining Academy event. This a very cool esteem-building, inclusive, fun, teachable-moment, inspiring, fun event.
They have super-villains that our Superhero kiddos can defeat by beating challenges. These challenges are customized for the population they are addressing.  Drew knocked over brick walls, flew through  an 'impossible ' banner, and wrestled an alligator so he could defeat the AlienNation Villain that didn't allow touch.

Some old pics.

Drew's Superhero name was Green Wolverine. He had a headband. And the belief that he had Superpowers. So cool and fun.

These people are mostly volunteers that dedicate their time to at-risk kiddos or those with less opportunities to excel at things. I love the 'dance-off', where the Villains are reduced to changing their ways, cuz the Good guys ALWAYS win in the end.
We are so blessed to have things in our lives that identify and embrace our kiddos. Drew truly ROXX and he is the coolest kid I know.

Progress...

Drew continues to rock like NONE other. Recently, he decided he could propel his walker by himself ,which is really exciting since we have been working on that skill for 11 years!  I believe the Stem Cell Infusion should be credited for all of the progress he has made in a short time, since we have been working so hard on so many things for so many years and in the last year or so things are really coming together.
Sitting up, answering quicker and more accurately (in his own way) and propelling his walker and his bike are the newest successes this bad-A can credit to his hard work, stubbornness, and determination. I ask him every day to not stop trying, keep working hard and he will be rewarded.  He wants to move independently soooooo badly. He has broken several wheelchair/strollers/bath chairs/orthotics.  Thank God for the patience of his DME professionals and therapists!
We had an awesome family trip in late August.  Drew played in the Challenger Little League Exhibition game in Williamsport, PA (it's on YouTube...check it out!), went to Hershey Park where 'No Fear Kijek' went on rides that scared the crap outta me, spent a few days taking in the magic/mayhem of New York( loved the subway and Times Square), and finished with our fabulous family in VA for Steve and Virginia's perfect wedding.  We are so blessed to have our family. Drew knows he is loved. They make sure of that :)
Drew's spirit keeps us going and his friends inspire us every day. Never give up, blog friends.  You never know what is possible if you just believe.

See, what had happened was...

It has been WAY TOO LONG since I posted in Drew Rocks!.  So much has happened in the past months. Forgotten passwords, Challenger Baseball, Last Comic Standing and American Ninja Warrior on TV, and  Facebook and Messenger making it so easy to instantly communicate with people, I have neglected my passion to blog about Drew.  The reason I started this blog was to let the world know how cool, fun, incredible, amazing, sassy, silly and kick-ass my son is.  Here is an update:

The stem cell trial went really well, and Drew is able to sit unassisted (with assistance getting into position), he can hold developmental positions he couldn't before (pre-cursors to natural movement patterns inherent to normally developing kiddos), is quicker to process things and respond and answer in his yes/no manner, and continues to rock our world. 

He still pretends that he has no idea what is expected of him if he isn't 'feeling' it, will crab till he gets his way, and won't eat unless what he wants to watch is on TV.  For example:  Recently, he was crabbing cuz he wanted to leave a place we were at.  I told him 'stop whining for 30 seconds and we will leave'.  Cuz I will be damned if I am gonna cave to my 13 yr old.  Okay, it happens a lot, but not that day. :)

So, I made him wait more than a minute (he has no concept of time) and every time he crabbed I made us start over.  He figured that out pretty quickly and was as quiet as a mouse after 2 times of starting over.  We left, and I felt victorious!  Even though, looking back, he really made out in the deal since I didn't want to leave in the first place.  Ah, well, we pick our battles.

We have been in a really good groove lately.  The Universe is cooperating and we are blessed to be surrounded by amazing family and friends.   Last Saturday was L.O. Palooza, a fundraiser to build a wheelchair accessible park that my friends Kristi and Maggie envisioned.  Our kids are all in chairs, and going to the park usually results in moms and these kids watching others' play on the play scape.  If we raise enough cash, kids like ours can swing on wheelchair platform swings so they can be safely swing with their peers.  Everyone deserves the chance to enjoy a playground.  I told Drew the morning of the Fundraiser ' I wish we had a playground like this for you years ago '. He just smiled his million dollar smile,  as if to say 'but now some kids will'. 

Our kids are so much greater than anyone knows.  Like my boy Logan who, upon seeing my brother extend his hand to shake his Dad's hand when he was introduced to him, put his own hand out there to shake.  Like Maddie, who, every time she sees me, points to Drew like 'there he is! He is yours'! (Drew and Maddie have an arranged marriage so I get her forever. )  Like Nick, who greets me every morning I get Drew on the bus with an exuberant "HI" . Not yesterday though...he dropped the F bomb, he must have been having a bad day.  Like Hailey, who typed out on her Augmentative Communication device ' He is cute' when she found out they were coming to visit.  Like Michael, with his billion megawatt smile that rocks my world.  Like Melissa, who giggles with excitement when she sees us at baseball. Like Addie, who we get to meet next month but feel like we already know her spirit.   Like all of Drew's friends that I am missing here and the pure joy and acceptance they exude all day.  They lighten my heart and give me hope that there is certainly good in the world.  So many of our friends are struggling with so much every day, things that would defeat those less hard-headed and stubborn than we are. We share our strength and thank God for the Warrior Moms and Dads, and Warrior kiddos that keep fighting, despite every.single. obstacle.  There is strength in numbers. Life is ridiculous...I would rather laugh than cry and you make it possible for me to do that.

 

Oh, Very Young.

This past week has been so bittersweet.  On Thursday, I found out that a classmate of Drew's,  Keith, passed away.  Keith was a cool little guy with a great smile and a loving family.  He was only 11.  For those of you who may not know, those of us with special kiddos don't have the luxury of trusting that our kids will make into old age.  Any little thing can become a huge, life-changing thing at any moment.  It is a unique position for us to be in; we don't have the comfort of trust or faith or confidence that our beloved babies will enjoy a long life.  We plan, direct, manage, over-obsess, micro-manage, hover and otherwise plan for every contingency but to no avail.  We cannot change God's plan.  There are no words to express what those families must be going through.  I can only offer my support and love and tell those families that their kids made an imprint on our hearts and will never be forgotten.  Keith Lewis, Jr.  you will not be forgotten.

I heard on Saturday that a dear friend of mine, Joe Grassi died suddenly of a heart attack.  We were very close in high school, he was a great guy and a he loved his family.  He was so proud of his children.  I love that I am still in contact with so many of the St. Anne crew--we were friends and connected in a special way before life unfolded its complicated and messy way.  We lost touch after St. Anne closed and we finished High School in different schools.  We reconnected through Facebook and I am so grateful we did.  Some of the best memories I have of High School include Joe and his best buddy Tony.  You will never be forgotten, Joe. 

The reason I started this blog was so all of you could know Drew and how cool and full of life he is.  How lucky I am (with his help) to LIVE, not just exist.  People say 'You only live once'...but the reality is you LIVE every day. Make the most of it. Every day.  Love each other.  Forgive each other.  Have fun. Experience things.  Make memories. Enjoy the ride.  Love you, Blog Friends.

Great things

Drew rocks like none other. He is able to sit with min or no physical assistance for minutes at a time. He can hold himself up in 4 point. He is learning to balance and starting to illicit the 'righting reflex' when he is falling instead of just giggling and toppling over.  AWESOME!  He is so fun and so smart and so so cool. He is sassy, crabby, stubborn, determined, hard-headed, fun, adventurous, and fearless.  He is my hero.  We were at the St. Lawrence festival and went on a few rides.  The scariest one was his fave...the Pirate Ship one that goes like hell from one end of the pendulum to the other. It was crazy for me and Aunt Kate...Drew was loving every second of the sensory, fast, backward g-force experience.  I needed time to recover, he didn't.
I wish there were more rides he could go on. I worry about the jerking motion on his neck (low trunk control) but there are a few rides we can do and he loves them.
He is getting so big.  I don't see it often, since we spend so much time together.  When I see how much of  his bed or the couch he occupies or how grown up he looks when I watch him in the rear view mirror, it takes my breath away. He has come so far in the past 12 years, but not far at all ( if that makes sense) in the conventional way. Every tiny step is a huge milestone for us. Thank God for the tiny steps...we are forever grateful.