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.

3rd time's the charm :)

We just got home from a short, 2 day visit to Augusta, GA for a follow-up assessment for the Stem Cell Study.  This was our 3rd visit out of 4.  Augusta is very cool, (not temp-wise) and the people are very friendly.  There is a lot of history in Augusta and that whole area of the US, which I love.  Check out the River Walk or any of the incredible restaurants downtown.  I HIGHLY recommend Nacho Mammas for Mexican and the Eros Bistro for the best Greek food you will find.  They also have Italian food-Drew scarfed the biggest plate of lasagna I have ever seen.  It was, seriously, roughly the size of the novel 'War and Peace'.  The boy loves to eat.

Drew received his stem cells (we believe) on May 24.  This is the first of two follow-up assessments to compare his ability at the last structured test to his ability this time.  Last time, it lasted roughly 20 minutes.  This time we were there for an hour and a half!  Improvements were noted and he improved in several areas.  Drew truly ROXX. :)

We flew out of Detroit on Sunday.  Drew has flown before, but I am always anxious since he doesn't think the rules apply to him and he crabs when he wants, as loud as he wants, for as long as he wants.  Bribing him is useless; he doesn't care about the latest video game or toy-store excursion. Mainly, after 12 years of making sure we ALWAYS have an escape plan (my SN Warrior moms know what I mean :)  ) the thought of being trapped on a plane with dozens of other crabby travelers while my son might melt down is enough to make me wish I had a script for Xanax.

He surprised me once again!  He is super smart.  The only time he crabbed was when he had to wait (patience is a virtue, but one that is lost on us) in line and when I had to turn his iPad off during take-off and landing.  He doesn't grasp the concept of 'because I said so.'  Once I enlisted the help of the nice gentleman next to us to reinforce that, even though Drew wants electronic devices to be okay during take-off and, and there is actually a scientific reason for electrical interference with the plane controls and what-not and rules are rules.  He is so stubborn, and I love that about him. ;)

He was a champ on the flights.  Take-off and landing are fun, the rest he viewed as a really boring amusement park ride.  He is fearless and  the faster, the better.  Thankfully, he understands what is going on and it was a plane, not the Himalaya we were on!  Thank God for Steve Jobs and everyone at Apple for inventing the iPad for entertaining our kids!

The assessment was my next stressor.  Drew has never tested well.  He is very intelligent, and very (ahem), lazy.  If we find the right motivator, he rocks!  If not, he pretends like he has NO idea what is expected of him and tunes out and entertains himself by laughing at our histrionics trying to entice him to do our bidding.  I wish I could blame the CP, but he comes by it honestly with my family :)

He improved in many areas: grasping at midline, rolling over, sitting unassisted, lifting his head to at least 45 degrees. The preceeding tasks were accomplished by bribing him with clips of shows he likes.  Whatever works.  I resigned myself long ago to the fact I would have to find success in the little things in life, and winning the war is much more important than winning any battle. 

We go back in 3 months for another assessment and are so hopeful that the progress multiplies and continues for Drew.  He is among a very elite group of incredibly brave, awe-inspiring, fierce, fearless, amazing kids that struggle every day just to exist and be comfortable.  He is my hero.  We learn from him every single day.  Blogger friends, when you are out in the world and see anyone with added challenges, please smile and be patient.  Everyone is fighting some kind of battle and we are all in this together. 

Here is a pic of my Boogie to brighten your day:

It's from last fall.  He so thug. 


Peace, FB friends!

Disgusted.

Hi Blog friends,

I want to spend a few minutes updating you on Drew's progress since the Stem Cell infusion on May 24.  Then I am going to rant about how the world is a crappy place sometimes.

Drew seems to be doing well--no big or even little gains made so far.  For a while, he slept better, and was less irritated by certain noises.  That didn't last long.  He is however, more 'alert', 'seems stronger' and 'more comfortable'.  Everyone has been telling me that they see those things, and I am so grateful.  I spend so much time with him, it's not always easy to see the little improvements.  I always felt he was very aware, but I do see that he is quicker to respond than he used to be.  I am excited for that! 
We continue to be hopeful and optimistic about what lies ahead, and will keep everyone posted :).

I woke up this morning to news that a mother and daughter, both mentally challenged, were stabbed and killed in their apartment.  The girl was 10 years old and went to Drew's school.  I didn't know her, but I am very protective of everyone at the school, and there is a place in my heart for anyone with challenges.  Everyone that knew them, loved them.  All of the staff at Peters are heartbroken.  One of her teachers told me that 'every morning she would tell me she loved me'. 

I can't understand how two innocent people encounter such violence and evil.  The highlight of their day was getting grape slurpees.  They had what they needed; didn't have anything that anyone else would have wanted.  They were harmless and loving and made an impact on everyone that knew them.  They had each other, their friends, and that was all they needed.

There is a special place in the depths of hell for the person that did this.  There is too much violence and hatred in this world.  We need to love and accept one another.  My heart is breaking for everyone that knew them.  My heart breaks too, that this is the world we live in.

The countdown begins.

So, we are within weeks of going back to Augusta, GA for the stem cell infusion.  If Drew didn't get his stem cells on Feb 15, then he is FOR SURE going to get them on May 24.  I am not nearly as excited as I should be. I had enough excitement and hope the first time.   Everyone is telling me they are 'sure' he got the placebo in February.  Not much has happened since then.  What if, what IF, he actually received his stem cells in Feb?  What IF he receives them on May 24 and we still don't see any changes?

Everyone is telling me not to think like that.  But I have to.  I have to prepare myself for the fact that maybe, despite all of our hopes, this treatment will not change Drew's life.  I stand by my belief that Drew is already perfect...we just want him to be comfortable.  So, it is what it is.  BUT, I see him struggle every single day against whatever restraints he is in--wheelchair, AFO's, Immobilizers, etc. There is no seating system I have seen that is comfortable to him.  Bean Bags, Couches, Me, pillows, air mattresses, what have you.  He just wants to MOVE.  Even the standers/walkers can't make him happy.  He struggles against everything. His body does the exact opposite of what it should to be comfortable.  It breaks my heart.

So, as I watch my son sleep on the couch next to me tonight, after being up most of last night, whining in pain, despite his meds, I pray from the bottom of my heart that there is something better on his horizon.  I am dedicated to his well-being and happiness--but he deserves so much more that what he has been dealt.  I just pray for his comfort and his body to do what he wants--even just a little bit.

Sorry for the honesty, thanks for reading, and pray for Drew for a brighter future.  He is the toughest kid I know and still manages to love life and smile every day.

I see you...

Blog post from Ellen Stumbo

Special needs parents, you are not invisible, I see you

Having a child with a disability can be difficult. There are moments you wonder if anyone will ever understand or get what it is like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.
But you are not. Today, I want to tell you that I see you.

I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.
I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.
I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.
I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.
I see you walking into the school for the third time this school year. A binder full of notes, lists, and goals. Your don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.
I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.
I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.
I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.
I see you at social gatherings where well meaning people ask ignorant questions about your child or her disability, they make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.
I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.
These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.