Awesome Birthday at Aurora Fire Department

Last Saturday the firefighters and paramedics at Aurora Fire Department Station Number 10 helped make one special birthday celebration for Nicolas Noblitt. Some months back, Nic’s mom and dad bid on the fire station birthday party at a charity auction and won. According to the firemen (I can safely say that since this station does not have women among the crew), they don’t do parties. Someone with connections made the event happen and Nic was the happy recipient.

The firemen had set up the long tables right next to the trucks. Nic wheeled around and inspected the trucks as his guests arrived. Then Lt. Matson gave everyone a tour of the station and let the kids climb up into the fire truck and sit behind the big wheel. After pizza (interrupted by a paramedics call) and birthday cake, a couple of the other firemen showed just what it takes to get dressed for a call.

What a great day! I think the grownups enjoyed the party as much as the kids. Many thanks to the Aurora Fire Department!

Shame on St. Louis Cardinals

I just read my daughter-in-law's Facebook post about the difficulty she encountered with getting tickets to a St. Louis Cardinal baseball game in September and I'm mad.

She wrote,

Just bought tickets to a St. Louis Cardinals game in Sept. I am sad to report that even though they built that nice new stadium, there is not handicap accessible seating in the affordable seats. They wanted to charge $77 a person per ticket to be in handicap seating rather than the $24 a person for tix in the upper deck.

She commented further:  Thanks for the support. My thought way, do they charge disabled veterans this price?!! This may be one of my new missions. The Chicago White Sox had great accessible seating in the upper deck yesterday for $22 a person.

Dad & Nic at Sunday's White Sox game in affordable seats.

More:  Well, Cardinals, someone from that number you gave me just called me back and the final verdict is that NO, there are NOT accessible seats on every level. They were not built into the upper levels of the new park. And, all the $77 accessible seats are full so we would have to pay even more than that per person. Guess I've found a new mission to help kids with disabilities get affordable seats in the MLB.

Natalie has 1247 Facebook friends and is a social media marketing professional. If anyone could stand up for kids who can't stand up themselves, she's the one. I hope she has the time to pursue this mission in between taking care of little Nic and managing her business. 

So, I say shame on the St. Louis Cardinals! Sad that you have forgotten the days when a family could afford to go to a baseball game--even a family with a child in a wheelchair.

Nicolas Turns Three

Yesterday, Nicolas (my grandson, for anyone new) turned three. It was a pretty big transition.

Those who know Nic's history (born at 26 weeks, weighed 1 lb. 12 oz, 101 days in the neonatal intensive care unit, heart surgery, brain bleeds, cerebral palsy, etc.) might like to know that this little miracle guy is still thriving and inspiring.

Seems Nic's excitement at the Fox Valley Park District caught the PR manager's eye, prompting a recent feature about Nic in the Aurora Beacon-News.

And now, with that third birthday rolling around, Nic graduates from early intervention to school. Yes, every day, big boy school with new challenges, a new team of teachers and therapists, experts and evaluations, an IEP, wheelchair, walker and Nic.

This grandma has no doubts. Nic will move forward, adapting and compensating while continuing to inspire. Way to go Nic!

What Lies Within

 "Go as far as you can see; when you get there, you'll be able to see further." Thomas Carlyle

"What lies behind us & what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson

Nic is making great strides these days. With the help of adaptive pedals, he can ride a trike. Soon, he’ll be getting his own wheelchair. However, unless you or someone you know has a child with the sort of special needs that require wheelchairs, adaptive toys like a trike or bike, walkers, special bath equipment, braces, immobilizers, and a lot of other products, I don’t suppose you can possibly imagine how this complicates child rearing.

Not that they have time to read this, but I just want to acknowledge Nic’s parents who coordinate weekly sessions with physical therapists, meet with social workers, visit specialists, drive to aqua-therapy, travel to doctors at the Mayo Clinic for botox injections, arrange occupational and speech therapy, and call about insurance coverage, all while just trying to be a mom and dad who provide for their family.

On top of all of the above, throw in learning about Nic’s rights under the Individuals with Disabilities Education Act (IDEA). As he approaches his third birthday, the Individualized Education Program, commonly referred to as an IEP, will become important as the blueprint for crafting educational experiences for him. And Nic’s parents will now really hone their advocacy skills.

I wish Nic’s parents and all of those other parents who perform heroically on a daily basis didn’t have to fight so hard for their children. I wish America would move closer to the spirit of these laws. But most of all I wish for Nic a life without limits.
 

Links I like:

National Dissemination Center for Children with Disabilities

United Cerebral Palsy: Life without limits for people with disabilities 
where there is located a link to: The State of Disability in America: An Evaluation of the Disability Experience

Lekotek: The country's central source on toys and play for children with special needs.
 
Toys R Us Toy Guide for Differently-Abled Kids

Publish Post

Who You Gonna Believe

Running in to the Jewel for a few random items like whole milk for Nicolas (he’s visiting later today while his mom and dad attend a wedding in Chicago), I took a few moments to glance at the tabloids lining the checkout lane. Wow, I am worried. According to the Globe, President Obama has lung cancer. Republican right-winger Sarah Palin might ought to stay closer to home, because one tab reports her husband is cheating on her. Or did I get that wrong, and she cheated on him?

Ever since the National Enquirer got it right when it broke news of John Edwards’ affair, I look at these salacious pubs with a different eye. Could they be right? Anyway, they make fodder for speculation and help pass the time in line. Happy Saturday!

Including Samuel (and Nicolas)

Including Samuel, a documentary by Dan Habib that is airing on television stations in the U.S, chronicles a family’s journey to include their disabled son in all that life has to offer. Samuel has cerebral palsy. My long-time readers may recall that my little (born Feb. 23, 2008 at 26 weeks—1 lb. 12 oz.—101 days in the NICU) grandson Nicolas has been diagnosed with cerebral palsy.

So, this film hits home. I’ve just seen the 12-minute trailer. I hope you will watch this film if you have the chance. I know I will. At least click on the link and watch the trailer.

Closer to home though, as I watch little Nic crawl around army-style on the floor, I hope for the best. Hope the therapists who say they think he will walk by “three or four” are in one sense, right—that Nicolas will walk—or wrong in that Nicolas will walk sooner. Mostly, I try not to think too much about what ifs. I know that human spirit can overcome some labels and that much is left up to Nic’s spirit and determination. He has been given a tough hand to play. Many are helping him but no one can really predict. Labels are hurtful, limiting, unfair.

And that’s why inclusion is important. Not just because to me this is personal. But because all of us need to know that we have a chance to overcome, excel, fly—to soar wherever our talents may allow us to go. To walk, run, swim, create, speak, heal, cure, invent, teach, and to participate in all the other possibilities of life.

Don’t Let the Bedbugs Bite

No “Good night, John Boy,” at my childhood home. It was always Mom saying, “Night, night, don’t let the bedbugs bite.

I just thought it was a sweet way to close the day. Later, I realized bedbugs are real. And maybe you have had an up close and personal encounter.
But Fort Collins, Colorado, apparently does not plan to become a bedbugs mega center.
Colorado State University’s annual Great Sofa Roundup was canceled after organizers worried they might be recycling the little critters as residents hauled used sofas to a CSU parking lot instead of dumping them in alleys at the end of summer leases.

However, when I came across a toy with a bedbugs theme, I had to get it for Nicolas as I gradually build up a Gramma stash of little guy accoutrements.

Defining Moments

I hate labels. No, not the kind on food or medicine, which are practical and helpful except when they are deceptive.

The labels I hate are the kind applied to people. Mostly, I hate them because they do not define a person, only a condition, or at least what some expert seems to think is the condition. So what.

Somewhere along the line someone said I was shy. Is that bad? We introverts are supposed to extroverts. That is the norm. It took me some time to say, “You’re OK. I’m OK.”

As is the case often these days, my fractured mind took me off course. The excerpt below is what got me to thinking about labels. Dear Gentle Readers of some standing may remember my grandson Nic’s extremely early arrival into this world at 26 weeks, 1 pound and 12 ounces in February 2008. Then as now, we worried how these circumstances might impact his life.

While Nic has already overcome many hurdles, he has his work cut out for him. Of course, he is not alone in his journey. In addition to family, Nic has an army of specialists and experts on Team Nic. Here’s what Nic’s mom had to say recently,

We have been worried with the continued stiffness that Nic has in his legs, feet and pelvis. Upon several expert suggestions, we decided to take Nic to Children's Memorial Hospital in Chicago to see a pediatric physiatrist, who specializes in whole body movement. Nic hasn't been able to sit up on the floor by himself because the tightness makes him fall to one side or throw himself backward. It also can make him “slouch” when sitting in a highchair. The physiatrist confirmed what we thought, which is that Nicolas has Cerebral Palsy in the form of spastic diplegia. This means that the legs are primarily affected, and also minimal tightness in the arms. This type of CP does not usually affect the cognitive or social abilities of the kids who have it, and does not get worse. CP is a condition that you are born with and that does not progress. Right now we know that the brain trauma he suffered after premature birth is causing his brain to send chemicals to his legs to make them stiff. Although it is hard to have your child labeled like this when he is so perfect in your eyes, we know that CP has a wide range of effects, from very mild to severe. Right now the doctor classifies his as mild.

We are going to have to help Nic continue to work hard to stretch and loosen these muscles in order for him to be able to sit up and eventually walk. That is a scary proposition for any parent to be told that your child may not walk. But, we have great faith in Nic’s abilities and are so proud of his determination so far. He already is exercising and stretching himself and helping himself make progress. I already can’t help but think of him as a tough guy and look at other kids differently because they don’t work as hard as he does. I’m sure that will always be the case.

Other things that we will be doing to try to help him progress is adding PT for a second time a week, starting Occupational Therapy, and also adding Aquatic Therapy once a week. Yes, Nic is going to get more pool time! He loved his first swimming class with Jeff at the Rush-Copley Healthplex, but now he will be trying therapy in the water one-on-one with a PT. I think he will really like this and we will continue to feed his love for the water. This weekend he used his baby pool on the deck for the first time. We will also be using the braces for his feet and knee immobilizers to help him stretch and keep his feet in the correct position. There may be other orthopedic devices that we employ here in the near future.

Down the road Nic may also need surgery, Botox injections, serial casting or oral medications to loosen the muscles as his bones grow longer. The Physiatrist specializes in kids with CP and is going to help us coordinate all his care so we don’t get lost in a sea of opinions.

It is what it is. It is not what it will be.


NOTE: Lisa Belkin has a parenting blog over at the New York Times called Motherlode. She recently posted a wonderful piece of writing by David Sexton titled “Out a Breath,” which was about having a child with Cerebral Palsy.

Bama Quilt Gets a Tryout

I finally finished the quilt for Nicolas. Here he is lounging around on it at a wedding shower last weekend at a wedding shower in his mom’s hometown of St. Joseph, Missouri. Nic was the only guy there. His dad was at Grandpa and Grandma Hammer’s house watching Alabama’s A-Day football game on ESPN. Unlike urban protocol, Mid-America small-town protocol still allows that men don’t much care for attending wedding showers. Personally, I agree, but Nic did not seem to mind one bit I am told.

A Cause for the Little Ones

February 23, 2008, doctors at Rush Copley Hospital in Aurora, Illinois, delivered Nicolas Bryant Noblitt at 26 weeks gestation. In case you “don’t know nothing about birthin’ babies,” that’s way too early.

Baby Nico spent 101 days in the neonatal intensive care unit, best called NICU by those families all too familiar with NICU alarms, monitors, endless tests, teams of medical professionals, and constant worry about what comes next.

On the cusp of summer, Nic came home that sunny June day with machines, monitors, and tubes and wires. Not exactly the vision most new parents have for their baby’s homecoming. Books like “What to Expect When You Are Expecting” and its cousins can hardly prepare new moms and dads for the exhausting and anxious ride they are in for when their baby is born prematurely.

So worried and hungry for more information shortly after Nic’s birth, I turned to the March of Dimes Web site to learn more about what this little guy could face. It delivered (pardon the pun).


The March of Dimes is a charitable organization I supported long before baby Nic came into this world. As a schoolgirl in the late 50s and early 60s, I remember the March of Dimes coin cards handed out to raise money. Think about it, this campaign worked! When President FDR founded the National Foundation for Infantile Paralysis, that was the goal—find a cure. Dr. Jonas Salk’s vaccine against polio did just that. Dr. Albert Sabin’s oral vaccine brought even easier access to protection. Little pink sugar cubes dosed the vaccine to millions worldwide.

With the success of the vaccine for polio behind it, the March of Dimes shifted its focus to preventing premature births and fostering research into helping those little ones born too soon have a shot at a good life. And today, they fund research that gave Nic and his NICU buddies a chance. Yes, I know the organization needs to work on fiscal responsibility, and since I work for a 4-Star Charity Navigator nonprofit, the fact that March of Dimes is not there yet bothers me a bit. However, they have my support.

If you happen to be in northern Illinois on Sunday, April 26 at 8:00 a.m., join Team Nic at Pottawatomie Park, 8 North Avenue in Saint Charles. And if you can’t make it, follow the link and help Natalie reach her goal.

And visit Nic on ciao-nico. He is surely one cute guy.

Sewing Up Some Football

Months ago I wrote about my adventures in learning how to quilt. Maybe I should say my misadventures. I have ripped out more than I have sewn it seems (did that pun escape you?).

However, Nic’s quilt for Christmas, which I hoped to have finished by the Alabama-Auburn Iron Bowl game—it’s today dear gentle non-football-fan readers, is coming along.
I have discovered that this project, launched with nary a pattern to guide me, has been immensely fun as well as immensely time consuming. My day job is interfering in the progress of this seat-of-my-pants project.

I am not your grandma’s quilter, content to choose a pattern someone else designed. I have chosen to design my own. Yet, what you see here is not what I set out to create. It was much more ambitious.

There is much left to do but I have finished the quilt top. Next, I will attach the back and inner batting to the top and then “quilt” the whole thing by hand. Thank God it is only a crib-size quilt. And thank God for the little Project Runway Brother sewing machine I recently bought. I used it to appliqué the letters and footballs.

I will let you know how it turns out, but I have a football game to get ready for. ROOOLL TIDE!

NOTE: I like the new sewing machine from Brother but do not expect to see me trying out for Project Runway. Now if they had a show about designing quilts and such, I might give that a shot.

The Littlest White Sox Fan

Baby Nic is probably the littlest Chicago White Sox fan, and today he and his mom and dad will be at the game when the Sox play the Kansas City Royals. Nic is a lot like the White Sox team. He hasn’t given up when down and he has spunk and spirit unmatched.

Back in February when Nic entered this world months earlier than expected, all who have come to love him hoped for the day when his day-to-day world would not revolve around doctors, tubes and machines.

Finally, after heart surgery, EEGs, EKGs, feeding tubes, respirators, heart and breathing monitors and other invasive procedures, little Nic will be a boy attending his first baseball game with his mom and dad. It doesn't get much better than this.

Little Pleasures

New grandmas are apt to go overboard. How can you walk into a department store without seeing something just too cute to pass up? I steadfastly assert that I am not yet one of THOSE new grandmas.

My latest purchase was only $5 and it was for a good cause too. The other day while paying for some socks, I noticed the Kohl’s Cares for Kids books and plush animals near the checkout registers. Kohl’s says it donates all of the net profits to organizations working with health and education programs for children. Eric Carle’s “Polar Bear, Polar Bear, What Do You Hear?” caught my eye. Carle, illustrator of the classic, “The Very Hungry Caterpillar,” creates wonderfully bright and charming tissue paper collages.

Depending on your age, you probably grew up with Carle’s books or bought them for your children or grandchildren or as baby gifts. My son still has his tattered copy, which has now been passed along to the newest family member, Nicolas.

So, this little hardback became the latest addition to Nic’s blossoming library. You would imagine a family of writers would love books, wouldn’t you? I don’t know if Nicolas will be a writer or set out on his own course, but so far, this little guy has had one incredible journey. For now, his parents are telling his story on their new blog, Illinois Preemie. Later, Nic, Grandma Sheila expects to hear from you.