We have an OFFICIAL logo!

Look at it.  Isn't it pretty?  My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo.  It's been four years in the making.  We've talked about DRL, and we've promised that it will actually come to fruition.  But today we scream from the rooftops: "We are alive!!"  Ok, maybe this is all a bit extreme to some.  But for me, it's a pretty big deal.  

I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so.  Yeah, part of it is because Jake has had a few issues. Then Elisha and her  heart issues.  But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen.  I even have a business/marketing plan (gasp!)  I know, right?

Be afraid...be very afraid. 

Until then, if you'd like to help us reach our goal, we have a couple options for you.  

1) Donate outright through GoFund Me.  Donate to Down Right Living. Help us become a non-profit!

2)  Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us.  You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes

Every little bit would be appreciated.  None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome. 

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.

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.

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 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.

Why?

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.

Now...off my soapbox.  I have some work to do. :)

Potty Training: Jacob Style

Once again, Jacob has defied my expectations :)

Yesterday, I was going about my business and he came up to me, grunted, and pointed to his pull-ups.

I asked him if he wanted to go to the bathroom, and he nodded. Then he took my hand, and pulled me into the bathroom where we have the potty training toilet.

Now, mind you, I haven't pushed potty training on Jake for the last couple of months because of the chaos of school. I wanted things to settle down before I pushed it on him again.

But once we got into the bathroom, he had me help him take his pants and pull-ups off, and POOPED right in the toilet. 

For any of you that have potty trained before, the potty always come first, and then months down the road, they get the hang of pooping. 

Nope.  Not Jake.  He wants to cut to the chase and master pooping first.  

Needless to say, the next couple of minutes were filled with high-fives, laughs, giggles, and squeals from his mother.  I guess we'll be doing some serious potty training these next couple weeks.  Jacob insists on it!  

Boo Boos and Buses

Today is a short entry...thank goodness.  

It's not my favorite, but it's part of life. 

Yesterday was picture day at the school.  Wahoo!  It's always fun to see how much Jake has changed from year to year.  

He chose out his own shirt, we put mousse in his hair to keep the cowlicks at bay, and he was stylin' by the time we were outside waiting for the bus.  

Three minutes before the bus was to arrive, as luck would have it, he was running up the driveway and tripped.  This isn't one of those oops-I-tripped-now-I'm-going-to-get-back-up kind of trips.  Oh no.  Not my Jake.  It was more like a trip over your own feet, skid for 3 feet, and check to see if any teeth are missing kind of trips.  

When the bus arrived, I had a white washcloth that had blood all over it, my T-shirt was bloody, and I was still picking debris out of his mouth from the roadway.  Plus, he had a road rash the size of a silver dollar on the bottom of his chin.  Yeah, school pictures are gonna be fantastic this year.  Not. :|

On the upside, Jake is beginning to really start babbling.  I'm hearing tons more consonants coming out of his mouth, and he's trying to say entire phrases (yes!!!!!).  This morning it was "I did it!" and this afternoon, he said "buh..." as a school bus drove by.  I squealed.  It's the little things when it comes to speech for him.  And progress is still progress.  It's great to finally see some coming out of his mouth!

But, of course, we couldn't leave this little entry on a good note.  Because it's important to see that Jake is multifaceted.  He's smart, he's feisty, he's funny, he's clumsy, and...he's a runner.  

Today when the bus came (and I silently celebrated a no-trip day), I walked four steps to get his back pack.  I kid you not.  FOUR steps. In those four steps, he decided that standing still was not enough.  After all, he saw the bus and he wanted to get on!  So when I turned my back, he put on the gas, and ran out into the middle of the street to great the bus.  GAH!!!!  I don't think I've ever ran so fast as I did trying to drag him from the middle of the road.  Luckily, the bus was still 1/2 a block away and she slowed the second she saw him step foot on the street.  But it's scary nonetheless.  And the driver and her aid had a good laugh about the situation - thank goodness!

Summertime & Growing Up

Summertime is a bittersweet time around our house. On the first hand, I get to spend more time with my kiddos playing, laughing, having fun, and doing all the things we didn't have time to do during the school year.

 On the other hand, I am spending nearly every waking minute with my kids.  I'm not going to sugar coat it.  I, a say-at-home mother with 4 pretty fantastic children, am NOT, by any stretch of the imagination, maternal.

I don't spend hours on the Internet searching for fun activities to do with my kids during their sunny days and snuggling them every chance I get.  OK, I do snuggle a little bit.  Can you blame me?  Look at that face of his!  He's adorable! :)  What make motherhood rewarding for me is the knowledge that I am doing something truly important: Teaching my children to be happy, healthy, productive parts of society who will give of themselves to make the world a better place.

 What I enjoy about summer break is that time the older kids get to spend with the younger kids.  We have a pretty wide age spread between the olders and the youngers.  Essentially, we have 2 families of children.  The now-college freshman and her brother, the high school freshman, and then we have the kindergartner and the pre-schooler.  The funny thing is, though, that their personalities are so similar, it's like I'm raising my older kids all over again! Except this time I can fix some of those pesky mistakes I made the first time - or make my older kids experience the frustration I had with them when they were younger. Oh the poetic justice!!

 In the meantime, we will spend our summer playing games with one another, cleaning up the perpetual mess in our home, sunning ourselves alongside the kiddie pool, going to track meets for the olders, and recouping from an exhausting school year.

 There are no big vacations planned for the first time in years.  No going to Nationals for Track, or Family reunions requiring 12 hour drives in the Suburban.

 I think our biggest adventure will be a camping trip in July an hour away.  And maybe a couple family hikes.

 Jake spends his time constantly exploring and learning, although few words, if any come out of his mouth.  So I'm concentrating on reading him lots of sound books that require him to make sounds to mimic the animals.

 He's discovered art, and movies, and playing in the kiddie pool.  We'll make a major attempt at potty training this month, along with swimming lessons.

But for the rest of the summer, it is about living life simply and taking the time to enjoy the little moments with the ones who mean the most in our lives.  Because before we know it, they're all grown up and leaving the nest.

Happy Graduation, Elisha!  We love you!

~Mom & Dad

A Moment of Inspiration

To say that life has been crazy around our household for the last several years would be an understatement. 

Since Jacob's birth, we have struggled with his heart surgery, immediately followed by 3 broken legs - each leg occurring on a different family member, and all seeming to break within a week of the last person's being healed.  Then there was the loss of my mother a year ago to cancer and my father 11 months later to complications from diabetes.  In the past 3 years, we have never had more than 7 days of peace before the storms of chaos kicked back up again and we found ourselves struggling to keep our heads afloat and care for our family as best as we can. 

After my father's passing, the waters calmed, and we've had more than a month of blissful peace.  As I've stepped back and begun picking up the pieces of our fragmented lives, I've had a chance to see where the chaos has affected us most.

Although children are resilient, I've seen the affects most noticeably in my little ones.  Rather than rushing to my father's side the moment K.C. came home from work, I've been blessed with quality time with my children (and cleaning my home! - thank goodness for small miracles!).

It quickly became apparent that I get out of them as much as I put in.  And recent months have been a dry spell for poor Jacob.   I've seen Jacob make more progress in the last month verbally than I've seen in nearly a year.  He went from being able to do 12 signs in February and virtually no sound coming from his mouth, to now being able to sign nearly twice that much, babbling all day long, and occasionally trying his hand at a few small words like 'mom', 'dad', 'yay', and 'ball'.  Yesterday he even tried to say 'yes'. 

The last several weeks he's been exhibiting signs that he's interested in potty training, which was something I didn't think I'd need to address till he was four.  I talked to his Pediatrician and she reminded me that even though Jacob has Downs syndrome, we should not limit him.  Instead, give him opportunities to succeed. 

Sufficiently humbled, I've committed to beginning potty training as soon as the older kids get out of school in June.  (Wish me luck!)

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And on that leap of faith,  I wanted to share an article to the most amazing man who, by any standards, would be considered remarkable.  What  makes this individual awe-inspiring is that he, too, has Downs syndrome.  Here's a teaser about my newest inspiration:



"Award winner and world traveler, Sujeet Desai is an accomplished musician and a motivational speaker who was born with Down syndrome. He plays seven musical instruments and has performed with world-class artists like Kenny G, Candy Kane, Joe Whiting and Quincy Jones, graduated from high School with honors before he finished his post secondary study at the Berkshire Hills Music Academy in Massachusetts. Since the early 2000’s, he has performed in over 40 states in the United States and in 14 countries around the globe. He is a recipient of numerous national and international awards including “The Presidential Award”(Singapore), “The Quincy Jones Exceptional Self Advocacy” award and “The World Down syndrome Day” award(Cape town , Africa).  "


Sujeet Desai was asked to share a few travel stories with us. He willingly shared these.

“I have been travelling worldwide for over 15 years performing and speaking. Each trip I have many funny stories happen. Below are 3 stories, “Said Desai. “Years ago, I received award from the President of Singapore. I was supposed to play for three minutes before receiving the award. For that performance, I got dressed up in a Tuxedo with a special new tux jacket that my mom ordered custom made from India. There were over a thousand people waiting for arrival of the president and security was very tight. Security guards were carrying guns all around us. I was waiting with an escort to welcome the president and walk with him down the aisle to the stage to perform my piece and receive the award. I was very nervous with guards holding guns behind me. Just minutes before the president arrived, a guard asked me to take off my jacket. I did not want to do that but he did it anyway as that was there was rule that no one would wear jacket. They wanted to avoid anyone carrying suspect weapons in their jackets and also the president had decided not to wear a jacket that event so it could be casual. I did not understand everything at the time. I got very upset that they took my jacket away and I knew my shirt was not nicely tucked around my Cummerbund. There was no time to fix it and my mom wasn’t allowed in our secured area. I got very nervous and did not want to perform. The big moment came when the President arrived, now with even more guards surrounding him with rifles. He shook hands with me. Put his arm around my shoulder and smiled. Suddenly I stop shaking, I felt very comfortable because the President looked like any other person and I was not scared of him anymore .I played the theme song for 'Mission Impossible.' Every time I see the pictures my shirt sticking out, I think of all that happened at such an important moment of my life. (Another time) When I perform international I have pack all my performance items very carefully; still weird things happen like recently when I visited Romania. I packed my tuxedo shoes. But one was my shoe and the other was my brother’s shoe, two sizes bigger than mine. We had only hours left before I would need to go on stage and we did not know of any store selling these shoes and we did not speak the language either .We were already tired after my rehearsal and had my three instruments and luggage to drag along. A kind man took us from store to store translating to the store staff what we were looking for, dragging our luggage while walking on the road, and at times in a taxi and also on the subway train for more than six hours to finally find a replacement pair of tux shoes. Every time I wear those shoes, I remember the history behind them.”

Currently, he performs regularly in community churches, nursing homes, senior centers, hospitals to help bring joy to those who live away from home and family. This 30 year old ‘uniquely abled’ man enjoys independent living in his own home in upstate New York although he spends plenty of his time outside his home; traveling worldwide to do inspirational solo music performances and self-advocacy workshops.

Besides his love of music, Desai enjoys martial arts and has a 2nd degree black belt in Tae Kwon Do. But his accomplishments don’t stop there. He has won a gold and silver medal in the Special Olympics World Games '99 in Swimming, Alpine skiing, Cross-country running and Bowling. It is no wonder why he is a media darling and his life has been chronicled in two documentaries as well as several dozen TV and newspaper interviews including being featured by The Wall Street Journal, New York Times, “The View”, “20/20”, “Oprah Winfrey”, and WCNY. Recently, Desai was honored by NDSS as National spokesperson for Down syndrome which was published in 40 magazines nationwide as “THE TRAVELER” as part of a Down syndrome awareness campaign. In 2010, this talented young musician was selected as an Ambassador by Down syndrome International (London HQ). Sujeet Desai explained that he is most proud of his 14 international awards for self advocacy and how he has become a role model for others. But he is equally as proud ofhis athletic accomplishments including the medals at the Special Olympics and Belt Belt designation.


His travels has given him the opportunity to meet and perform for some notable celebrities including Eunice Kennedy Shriver, Anthony and Timothy Shriver, John McGinley, Kristi Yamguchhi, Nadia Kamunich, Bart Connors, Scott Hamilton, and Jim Kelly to name a few.

“My mom and my dad both trusted in my abilities and offered me every opportunity to learn new skills and most of all loved me no matter whether I learned or did not learn. That increased my self esteem and confidence to believe I can do anything if I put my mind to it. Just like anyone else. People usually do not believe in that a person born with Down syndrome can live a good life. They do not respect them for who they are. However, my parents never did that. They did not treat me differently and gave me every chance to learn just like they did for my older brother,” stated Sujeet Desai.

Desai has become a role model and has brought inspiration and hope to individuals born with disability, their parents, educators, and the services providers. Sujeet’s motivational workshop “My Story: How to improvise life with multiple intelligences” sends many messages across the world that given opportunities for their abilities individual with disabilities can “Make It Happen!” And his music is more than just an entertainment; it’s educational, inspirational and focused to make everyone’s personal mission possible. To learn more about Sujeet Desai and hear his music, please visit his web page www.sujeet.com or on Facebook at http://www.facebook.com/sujeetmusic.

By Diana Rohini LaVigne

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Once again, I am humbled by the strength and tenacity of the human spirit.  I hope you find his story equally has inspiring. 



Susan

 

So Many Things To Be Thankful For

NOTE:  This original post was written right around Thanksgiving, but I forgot to post it!  I hope you enjoy it anyway :)

I'm sitting here in another hospital room as my mother sleeps with nothing better to do than take stock of the past year.  From the outside looking in, a person could be horrified by all that we've been through.  Since that fateful day in April 2010 when we found out that our unborn child would have a heart defect and be born with Down syndrome, we've been slammed.  First Jacob, his birth, 3 weeks in the hospital for sepsis and meningitis, then time for his heart surgery, next time in the hospital for failure to thrive, and recovery.

The same week Jacob was finally given a clean bill of health, KC broke his leg in what is apparently the worst possible way you can break an ankle, including both bones, and all the tendons and cartilage in between them.  Now, 9 months later, he has FINALLY given a clean bill of health by HIS doctor.

 In June, the same week KC was allowed to begin working light duty, Nathan had surgery on HIS leg - lengthening his Achilles, and grafting bone to two places on his foot.  The SAME DAY that Nathan got a clean bill of health from his doctor, Elisha broke HER foot in a volleyball game and was out for 6-10 weeks.  Because we apparently didn't have enough to worry about,  there was Courtney's visit to the emergency room because she'd gotten into a bottle of Excedrin PM (luckily we discovered that I'd found her before she ingested any).

Within a week of Elisha's clean bill of health, we found out that Jacob has progressive hearing loss (we're not sure if it's temporary or permanent yet).  A week after that, his blood work came back hinky, and we had to re-test to rule out cancer.  And 3 days after that phone call, we found out that my mother has cancer (ultimately we found out that it is inoperable Stage 4 Pancreatic Cancer). In the last 18 months, we have had no more than 3 DAYS that have not been mired by illness or injury and I do not see and end in sight for a while.

With all that has gone on in the last 18 months, how can I POSSIBLY find anything good in it?  Well, I must admit that I have shed my share of tears, especially as of late with the knowledge of my mother's cancer.  But how can I not see the good in all of this? Dwelling on the bad would literally drive me crazy anyway - as if I need any help!!!

 First off, I have often said that kicking and screaming will do me no good.  It only wastes precious energy that must be used for more important things like caring for my family both physically and emotionally,  and making sure that they know that I love them.

I've been blessed with the opportunity to realize how important each and every one of my family is to me. And because of this, I am so much less likely to take them for granted. Especially with Jacob.  I know that I'll most likely regret it as he gets older, but I spend every chance I get just gazing into his beautiful blue/brown eyes marveling at his perpetual happiness, and resilience. I marvel at his strength of character and of body. I can't help but squeeze him tight whenever I pick him up, and often find myself breaking out into random grins as I watch him grow and progress.  At 13 months old, he is already standing on his own, and has even taken a step or two.  This is HUGE for a child with Downs.  They're supposed to be delayed. They are not supposed keeping up with the other kids their age.

With my mother's new diagnosis, I have the opportunity to tell her how much I love her, what an impact she has made on me in my life, and how she has made an impact on the lives of my children.  Cancer is a horrible thing. But it also enables our family to mend broken relationships, and become closer to one another  - something that would not have happened without such a life-altering event. And its something that my mother has always wanted in our family. I just happen to think this is an awfully extreme way of doing it, mom! :\

I have been blessed with patience.  There, I SAID IT.  I've acquired patience!!! (family joke - NEVER EVER pray for patience!  Things like the last year happen when you pray for patience!).  I've found that the little things don't bug me nearly as much as they used to.  I've learned not to sweat the things that I cannot control.  I can't control injuries or sickness.  I cannot control whether or not Jacob will be able to hear, or if he needs hearing aids in the future.  Therefore, I often find myself saying, "Whatever".  I take what I'm given and I deal with it.  I don't stress over what may or may not happen (OK, I did with Jacob's cancer scare - his blood work came back clean, by the way).  I just roll up my shirtsleeves and and get to work.

I am thankful for less grudges.  I have noticed as of late that those things that would have once hurt me or would have festered into resentment or hatred in the past, now roll off like water on a duck's back.  I don't have the time or energy to hold a grudge.  I say my piece and get on with it.  It's enabled me to hold onto relationships that, in the past, would have been discarded over petty disagreements, or being unintentionally offended. And it has enriched my life with people who touch it in so many good ways.

I look around my house and I see dirty dishes, toys on the floor, unfolded laundry, and a messy desk.  Yes, my house is messy. Every day.  Regardless of how hard, or how often I clean it.  It comes with the territory of  a family of 6.  4 children (1 of which is a human tornado), 2-3 therapy appts per week, doctor's appts, sports for the older kids, driving them to and from school, groceries, church, and working nights till 2 a.m. to name a few.  I could sit in a corner crying because my house is dirty, but why?  A little dirt never hurt anybody.  And I've got bigger battles to fight.  When I look at my dirty home, I know that my time was spent doing more important things: being a mom for my children and a wife for my husband.  We have food on the table, happy, relatively well-adjusted children, a roof over our heads, a job that KC LOVES to go to every day, friends & family who love us even more, and so much more.

Yes, I have so much to be thankful for.

I used to think that your health was the the ultimate.  It didn't matter what you went through so long as you have your health.  But it isn't until you no longer have health that you realize that this mentality is sooooo not true!  What matters most is that you have love, and laughter, an eternal perspective, and friendship.  What matters is that you keep plugging away at whatever life and God gives you, making the most out of every moment, because those moments, however many or few, are what matters - and what you do with them.

Never ever give up.  Ever. Never let life get you down.  Ever. We have been given these trials in our lives for a reason.  I'd surely like to find out what those reasons are so that I can learn from them and move on! But until then, I continue to be thankful.  For life, love, happiness, family, friends, my testimony of Jesus Christ and the life hereafter, forever families, and everything that has gone RIGHT in my life.

Thank you for letting me get up on my soap box.  I think I shall get off now....and get back to work! :)

Leaps and Bounds

People often ask me if I ever sleep.  And, quite frankly, I don't much.  Partly out of habit from the 10+ years I used to work nights running my online business. And partly because I've found that I can get so much more accomplished when the rest of the world is asleep and not distracting me from my long list of things to do. 

As the world quietly sleeps, I've been able to revel in the blessed silence of my home and reflect upon the many things that has occurred in it since my last post in July. Wow! What a busy life we've led!

In July, at 8 1/2 months, Jacob was rolling.  Soon afterward, his physical therapist told us we needed to buy him a toy that he could play with sitting up, so we chose the toy shown below: 

Little did we know what an impact this toy, and it's annoying little dancing teddy bear on top would have on Jacob's development. He fell in LOVE with his toy.  All of the sudden, we began to see progress in Jake so substantial, that the physical therapist would be taken aback.  One week he was rolling around, the next week he was frog-hopping, and doing one or two army crawls on his belly.

Soon, he was up on all-fours grabbing for that dumb dancing teddy bear.  Then, he'd crawl 1 or 2 steps to get better positioning, and before we knew it, he was sitting upright for minutes at a time...

crawling from object to object exploring every square inch of our home and everything in it.  Then he toyed with the idea of bear crawling - on his hands and feet, and was crawling the entire length of the house...FAST!!

Out came the high chairs because his back was finally strong enough for him to sit upright for several minutes at a time.  Out came the stair gates because he discovered the stairs...a couple of times.  Up went anything and everything that could possibly be thought of as small enough to fit in his mouth, etc.  Because if he could grab it, it was going in his mouth!

In spite of the fact that he still had no teeth, we began feeding him solids - and he LOVED it!!!  He'd just gnaw to his heart's contents on anything he could get his hands on. 

Jacob discovered that he needn't just let life pass him by.  He decided that he was going to grab that bull by its horns and ride it into submission!!!  He literally wakes up around 6:30 in the morning and go go go's constantly all day long, stopping just long enough for one or two 20 minute power-naps along the way.  Every other minute of the day, he explores, follows his big sister, Courtney (she fears him! - she runs screaming in the other direction whenever he gets close - I think he secretly likes this), and constantly continues to test the boundaries of his abilities.  Crawl faster, sit longer, and even climbing upward and the start of furniture walking. 

The physical therapist swears that she's never seen a child with Downs start walking before 17 months of age.  At this rate, we estimate he'll be about 14 months when he takes his first steps. 

But until then, we have speech therapy which will begin here in the next few weeks, and we just sit back and watch Jacob embrace life and all it holds for him. 

His infectious smile seems to draw everyone to him - even strangers. 

Tonight we went to a Gonzaga vs. BYU volleyball game and he caught the attention of one of the Gonzaga basketball players.  We spoke for a moment as he goo'd and gaa'd with Jacob and talked of how he missed his own niece on Oklahoma. And as the game ended, another stranger passed us by and told us how adorable he was and so much fun to watch.  This seems to be the norm every time we go out into public with Jacob.

Of course, Jacob is no fool.  When the smiles do not help him get his way, he has mastered his puppy-dog sad face which almost always gets him what he wants.  He IS the baby of the family, you know!

But right now, we are just happy to see him happy, healthy, and progressing like crazy! Including the fact that he FINALLY cut his first tooth tonight!!  Thank heaven for life's small miracles!  All is right in my world today !