Saturday, December 6, 2014

Love and Intuition - Jacob Style

I don't know what it is about my boys.  But I am truly blessed.  

My girls are pretty freakin' awesome too.  Elisha is uber talented in EVERYTHING she does.  It's kinda disgusting, actually.  And I'm her mother.  She plays Division 1 Track - 4 events, was offered college scholarships in music and volleyball as well, is a truly phenomenal artist, is beautiful, smart, funny, sweet, caring, and dynamic.

Her 5-year-old sister is her mini-me.  Her goal in life?  To rule the world by the time she's 10.  She may actually do it.

But with all the talents my girls have, my boys have in equal amounts of intuition and love.  I'm not saying that they're stupid or ugly.  Quite the opposite, in fact.  Nate has a near photographic memory. And you've seen the pictures in other posts.  My family was not hit with an ugly stick (thanks to their father's genetics). But the qualities I cherish most in my boys is their concern for others and their laid-back attitude.

My girls? Well you don't get to rule the rule by sitting back and doing nothing.  My girls are a bit high-strung  which is why they're over achievers.  It's go go go all the time.  Courtney never shuts up.  Ever.  It's question after question after question as her little mind absorbs as much information as is humanly possible for a 5-year old.  Elisha is working her butt off at college from 7 a.m. till 11pm most nights, and still finds time to come home on the weekend to be a big sister to the youngers (Jake and Courtney).

Nathan and Jake.  Well, they just know.  Nathan is a watcher.  He observes and absorbs.  Jacob explores and discovers.

Up until today, I just considered Jake inquisitive (that's a very nice word for 'the little boy gets into virtually everything in our house'. He takes it apart, tries to put it back together, gets frustrated, throws it on the floor and moves on to something new while I try to pick up after him - over and over and over again).

Today was not a good day for me.  I somehow pinched a nerve in my shoulder rendering one arm useless, then proceeded to get a nasty migraine that had me pretty much incapacitated for the entire day and well into the evening.  Throughout the day, as I was laying on the couch nursing the pain in my body, Jake would come hang out with me.  He'd bring his tablet and sit on me and quietly play.  If I managed to pull myself up to a sitting position, he'd sit on my lap.

By 6 pm I decided to try to sleep some of the headache away while the olders (Nate and KC) watched the youngers (Courtney and Jake).  I was in my pitch black room 5 minutes before Jake cracked open the door and snuck in, closing the door behind him.  He climbed up on my bed, laid down next to me, and cuddled quietly in the dark next to his sick mother, putting his hand on my face, then petting my hair, trying to comfort me.

It was the sweetest thing!  My adorable 4-year-old son was trying to take care of his sick mom.

He stayed in the pitch black room with me for another 20 or 30 minutes before he walked out, got my Iphone, came back in, and watched Madagascar next to me (still in the dark) and held my hand.  He stayed next to me until it was his bed time, which wound up being him cuddled up next to me until he fell asleep for the night.

After a night like tonight.  No one can tell me that having a child with Down syndrome is a trial.  No one.  Nuh uh.  Jacob is not lucky to have me as a mother.  I  am lucky to have Jacob as a son.

Friday, December 5, 2014

Savouring the Little Things

Yesterday my post was filled with negativity.  I am not a negative person.  I don't want negativity to eat up any more of my life than is absolutely necessary.

So, today, I choose to relish and share, but a mere moment of the blessing I call Jacob.

Two days ago it was spaghetti night.  Spaghetti is one of Jacob's favorite foods of all times.  Bar none.  It's always a treat to watch him eat spaghetti.  Not because he makes a ridiculous mess (because he does), or because he refuses to use a fork (which is also true), but by the sheer revelry he displays when savoring every last bite of his meal.

We're not talking a pile of spaghetti the size of an egg.  No way!  Jacob eats as much spaghetti as I, a full grown adult, eat.  I understand that lots of kids with Ds don't have an 'off' switch with food.  And we have yet to determine if Jake is that way yet - basically because all the rest of his siblings are athletes (and GIANT athletes at that - Elisha is 5'10" and Nathan is 6'2 - at age 15) and eat more than a football team combined when they're home.  So I have nothing to gauge his eating habits off of yet.

Anyway, I digress.  Back to Jake and his spaghetti fetish.

So we sat him down with his rather large serving of spaghetti.  As the rest of the family finished their meal, I looked over to watch Jake who had been unusually quiet.  He took one strand of spaghetti between his thumb and pointer finger (great fine motor skill practice, by the way!) and slowly pulled the noodle from the plate.  Pulling...pulling...pulling until the twelve inch string was lifted as high as his stubby little arm would go, dangling just above his mouth, enticing him to bite.

After a few seconds of watching the noodle wiggle in the air, he slowly lowered the very tip into his mouth and bit down with his lips - not his teeth.  Don't want to break the noodle, after all.  Then, he sucked, slowly drawing it into his mouth, until only a few inches remained.   As he sucked, his eyes rolled back into his skull in absolute bliss, then he closed his eyelids, half smiling at the taste of his favorite food. Then he pulled the noodle out again, sans the sauce.

Next, he repeated step 1, however, this time, he sucked harder, letting go of the noodle with his hand, and allowing the strand to flip and flop around his mouth as it got shorter and shorter, and disappeared.  Smack!  All gone.

He took a moment to chew the soft pasta and swallow, then looked at his plate and half smiled again before rooting around for another perfect noodle to repeat the process.

As I watched Jake eating his spaghetti, I was struck by how important the little things are - not only to him - but to all of us.  If we continue to get caught up in all the big stuff - then how can we appreciate the little things?

If I continue to worry about making sure all of the bills are paid on time, or keeping the house spotless (which it is NOT) how can I appreciate the fact that my husband works DANG HARD to make sure that I have the opportunity to stay at home with our little ones full time? I get to make sure they know their alphabet, hold them when they wake up from their nightmares crying, laugh with them when they run circles in the living room chasing one another, teach them to be kind to others and to take responsibility for their actions, and raise them to be productive parts of society.  This is especially true with Jake because he needs just a smidgen more time than his siblings.  And I'm blessed with the opportunity to be that kind of mom because my husband makes it so.

 I am blessed to be able to watch Jake savor his spaghetti, or run around pretending to be a robot from Megamind, or run in circles when the music comes on, or drive Courtney to school and pick her up, and volunteer at her school once a week.  I'm blessed to be there when Nathan gets home every day and to be able to ask him about his day, and tease him about girls.

Ah, what a tremendously blessed life I have.  Thank you, Jacob.  For showing me it's the little things in life worth enjoying.  All those little things begin to add up into one great big - giant even - epiphany of happiness.   Life is good.

Thursday, December 4, 2014

Discrimination At Its Finest

NOTE TO READERS:  This experience happened about 3 weeks ago.  I was so worked up over the incident, I decided to table this entry until I could be more objective about the experience when writing. I believe taking a moment to step back and let things 'settle' was a good choice - if for no other reason than avoiding a blog riddled with curses and spewing with venom.  So, please realize that this post is severely subdued compared to the 'day after' emotions I was having. Do not think I don't take this sort of thing lightly.  I do.  However, I refuse to let the indignity of such behavior taint who I am as a person and how I allow my children to see me react to such situations.


 I consider myself extremely lucky when I say that in the four years that Jacob has been a part of our family, I have never once felt as if he was discriminated against or treated poorly.

We have been truly blessed with the people we've come in contact with from the moment I discovered he had Trisomy 21 before he was born up until this afternoon.

I'm ashamed to say that when I perused the Down syndrome message boards and listened to parents vent and scream about how cruel other people were to their children, I thought they were merely thin-skinned and needed to toughen up a little.  People aren't actually out to discriminate us, they're just ignorant, right?

After today, I must take pause and wonder.

In just a few short weeks, my 15-year-old boy begins basketball.  A prerequisite, as I'm sure is required in every school across the country, is a sports physical to ensure that he is physically fit enough to participate in the strenuous activities associatated with high school sport.

A couple years ago, my family physician's office was bought out by a major corporation.  In fact, so was my pediatrician's office, our urgent care office, and nearly every other medical facility in our city.  About 90% of every medical facility (hospitals included) are owned by one of two major Corporations.  Seeing as how I'm about to rant, I will not name names so as not to be slapped with a stupid defamation lawsuit. Grrr.

From the moment the physicians were bought out, we were no longer able to make an appointment with our doctors and get in to see them same day...or within the week...or even within the next two weeks.  On average, we must wait 3-6 weeks before we can see our physicians.  I made an appointment to have Jake's eyes checked today (December 4th) and they will not be able to get him in before February 24th.  See what I mean?

That's fine. Whatever.  We'll go to urgent care when the kids are sick then, right?  You'd think so.

I found out about my older son's need for a physical 2 days before it was due.  Great.  Urgent care, here we come.  We show up 2 hours before they close, and are immediately given crap.  No.  They won't accept insurance.  We  must pay cash for a sports physical - even though the sign next to the receptionist clearly says that co-pays are expected.  Oh, wait.  It's 5:45 pm, I'm not sure the doctor will even see you because they stop doing sports physicals after 6:00.  Um. it's not 6:00.  And where did you post the allotted times for sports physicals?  I was on your website.  I'm in your lobby.  Nothing.  I'm not a mind reader. Work with me here.  Plus, it's a SPORTS PHYSICAL.  Listen to his heart, weigh him, check his blood pressure.  Sign the piece of paper. We're on our way in less than 5 minutes.  It's the easiest $50 this doctor is gonna make tonight.

The receptionist takes our paperwork - already filled out and waiting to be signed by the doctor.  We wait in the lobby for 35 minutes to find out if they will even TAKE us.  The nurse opens the door and motions to my son and I to come.  We step behind the door, she closes it, and then proceeds to tell us that they will not see my son.


Because we checked a little box that said our family had a history of heart problems.

I proceeded to tell her that the "history" was Jake.  Our 4 year-old with Down syndrome. Those heart issues were directly related to his disability and did not increase Nathan's chances at having heart issues.  It had everything to do with Jacobs extra chromosome - which Nathan obviosly does NOT have.

I kid you not, when she heard that Jake had Ds, she sneered.  I was pissed.  She then told us it was policy not to do sports physicals when the family has a history of heart issues.  I again repeated to her that Jacob's heart defects did not increase Nathan's chances of heart issues. I asked her very nicely to relay the information to the doctor and ask that the doctor make an exception.

She made another face, and said she would, then ushered us back to the waiting room to wait another 15 minutes.

A new nurse called us back.  She again told us that they do not do sports physicals for people whose families have a history of heart issues.  I relayed the same thing to her about Jake and it not increasing Nathan's chances of having issues.  This lady made an even nastier face than the first nurse and repeated the policy.  I asked her if she spoke to the doctor.  She repeated the policy again and told us that they are an Urgent Care facility and that this was not an urgent care issue - we needed to go see our family practitioner for such matters - someone who knows our family's medical history.  Then she told us that they will not serve patients who have a family history of heart issues.

At. All.

She opened the door, and essentially kicked out out of the building, refusing to see us.  Why? Because Jacob has Down syndrome.  My 15-year-old son who has NEVER been seriously sick in his life.  EVER. was denied medical treatment because his little brother had Down syndrome.  Our entire FAMILY will be denied medical treatment from that Urgent care facility - and every other facility holding that company's name (remember, they own nearly half of all medical facilities in our town now) because Jacob has Down syndrome.

Discrimination at its finest, people.

You wanna know what the funny thing is though?

This urgent care facility has essentially been our primary care provider for the past 4 years.  They've been seeing our entire family - including Jake (who, by the way has a giant scar down the front of his chest from heart surgery, so there was no hiding his heart history) - whenever we were sick. They KNOW our family history.  But because we checked one tiny little box, information WE VOLUNTEERED, we now had the plague.  No touchy.

I went home livid, to say the least.  I ranted to my husband.  I called one of my dear friends who also has a child with Ds.  I stewed.  I got madder.

I have decided that this is not over.  I am a mother of a child with Trisomy 21.  If I do not stand up for him and my children, I'm allowing this behavior to perpetuate.  I'm allowing this company to continue to discriminate.

This week, I will be writing a letter to the company's corporate office.  And I will be writing a letter to the urgent care facility, and I will be contacting our local, regional, and national Down syndrome coalitions.  And then I will be contacting an attorney.

Do I want money?  No.  Do I want retribution? No.  Do I want an apology?  Not really.  I want the policy to CHANGE.  I want people with disabilities - AND THEIR FAMILIES - to be treated just like everyone else.  Isn't that what the American Disabilities Act is all about?  Equal rights?

Quit punishing us for having, and loving, a child with disabilities.  Let us make our own choices - quit making choices for us.  Quit trying to treat us like degenerates or second-class citizens.  Because we AREN'T.

If anything, children like Jacob make us better people.  Jacob is a blessing.  Nothing less.  And I will not allow anyone else to treat him otherwise. my soapbox.  I have some work to do. :)