Friday, December 9, 2011

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, by 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! :)

Tuesday, October 18, 2011

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 !



Thursday, July 14, 2011

How Can I Help?

I would be lying if I didn't say that this year has been incredibly taxing on our family physically, emotionally, financially, spiritually, etc.  But I'm a firm believer that we receive the trials in our lives

A) Because God knows us and knows what sort of adversity we need in order to progress and grow as individuals

B) To be mindful of our blessings and to be more appreciative of what we do have in life


This year has been full of growth and introspection. Among the other things that I've pondered over the year has been how incredibly blessed we HAVE been as a family.  Throughout it all, KC and I have had the strength of our friends, family, loved ones, church and faith, an incredibly supportive work environment, and even those who are strangers come to our rescue and lift us up when we were in need of help.  I have been humbled the the generosity, love and grace of others. 


It now appears (knock on wood) that we are finally through the worst of it.  Jacob has had his heart surgery and has been given a clean bill of health in virtually every aspect of his life.  Now all we have to worry about is making sure he has that little extra time needed to progress physically to his milestones.    KC is over the worst of his surgery and is now concentrating on physical therapy and working towards the ever-elusive 100% recovery mark.  Nathan looks well on his way to recovery and appears to actually ENJOY having his cast as an excuse to get out of doing the list of to-do's I create each day. 

Now that the storms have calmed, I've been wondering what I can do to give back and perpetuate all of the love and kindness our family has received - and to help those who may find themselves in a predicament similar to ours - but without the tremendous support system our family has had.  And I've come up with two things I thought I'd share.

First off, we're moving forward with Down Right Living.  It's going to be a non-profit organization designed to help those families touched by those with Down sydrome.  You can check out the website my daughter created at http://www.downrightliving.com


Secondly, I've found another non-profit that tries to find families for Children with disabilities in other countries.  What I love about it is that there's a grant system.  Finding families with the love and capacity to welcome a special needs child into their home is often difficult.  As soon as a family (regardless of singles, couples, old or young, large family, or no other children - it doesn't matter) commits to adopting a child, Reese's Rainbow starts raising funds to help pay the fees associated with adoption. 

I finally got on to their site to learn more about the children and was flabbergasted at how many children there were (most of the children are institutionalized once they reach the age of 4-6 years of age) who needed homes, and the range of care needed - some needed little or no care.  They just needed a home.

Even if you're not wanting to adopt, it's a great place to check out or donate - $5 makes a big difference to the lives of the child and the families trying to raise the $ needed to bring their babies home. http://reecesrainbow.org/ministry-video


UPDATE:  We've created a GoFundMe Link to help pay for the fees associated with starting up our non-profit.  Please please PLEASE! Donate if you can.  

 Donate to Down Right Living

Sunday, July 10, 2011

From Infant to Explorer

No news is good news.  I promise! :)

The last two months have been filled with crazy chaos, doctors, therapists, family, friends, and everything in between.

Our family and Jacob have finally begun to settle into our definition of normal - whatever that might be.

KC has begun light duty at work after breaking and dislocating his ankle and ripping all the tendons holding the two bones together.  It has been a long, hard and painful process which a an even longer road that he must continue to travel, but he's a fighter (and he's tired of being at home in the middle of the chaos!).  Now, after nearly 5 months, he is still only at about 60% usability of what he used to be.  He can only walk for a little while before he begins to experience significant pain, often walking with a cane, and by the end of the day, his ankle invariably ends up swelling to about twice its normal size.


Last month Nathan decided to join the ranks of the gimpy and had his foot worked on.  He's been growing so fast that his Achilles tendon could not grow fast enough to accommodate his growth. His feet had been collapsing in on themselves to accommodate the lack of movement.  So, they went in, lengthened the Achilles, broke his foot in two places and grafted bone in to help create a new, strong arch in his foot.  He's about 1 month in to his 4 month ordeal.  It pretty much ruined his summer, but on the upside it got him out of mowing the lawn, doing chores, and any hard labor.  So, he's decided it's a fair trade.

Elisha is neck deep in high-school teen-ager stuff. She's at the tail end of driver's ed, competing in the regionals of Junior Olympics for track, going to volleyball camp next week, and spending as much time as possible doing conditioning for varsity volleyball in the fall.  I look at her schedule and I'm exhausted just thinking about it.



Courtney is still Courtney.  Funny, feisty and FAST.  With KC and Nathan down for the count, Elisha and I have found ourselves doing a lot of chasing after our ornery little toddler who does the exact opposite of what we ask her to do, running away giggling in the process.  I've already cursed her with children just like her when she grows up - twice!  Now I hope she ends up with twins! Bahahahahaha!!!



Jacob, although a tiny little tike, is no longer an infant.  It dawned on me only a couple days ago that he has come a long way from the sickly little heart baby in February.



Each and every day he progresses with leaps and bounds, much to the delight of this therapists. At 8 1/2 months he is rolling EVERYWHERE.  One minute he will be at our feet, we'll look away to talk to Courtney, look back and he will be across the room playing with a toy.  Elisha tried to put him down one day last week and rather than laying him down, she inadvertently put him on his feet.  He stood there by himself for 3 seconds!!  He's not quite sitting on his own, but each day he gets better and I figure he's only a couple weeks away from unassisted sitting.  He's been toying with crawling, but right now finds it easier to just use his legs to catapult himself in the direction he wants to go, much like a frog but not nearly as graceful.



Jake has also found his voice.  We've been working with him exhaustively to make noise - ANY noise.  Who knew that once I got a quiet child, I'd be freaked out that he was so quiet?!  So, we do lots of therapy with him, and he's finally beginning to pronounce his consonants - lots of da da's, ga ga's, ba ba's and such.  His speech is still significantly delayed, but we're finally getting something out of him, and I'm OK with that.


And, my favorite announcement of the month, he's FINALLY not sleeping in our bed any more!  Jacob is quite the cuddler - he likes to sleep with his face planted in a pillow, with a blanked over it, or in my case, firmly planted in the base of my back or in my rib cage.  I've spent month sleeping (if you call it that) stick straight for fear that I'd roll over him in my sleep.  He's finally in his own bed and I can sleep soundly!  Thank heaven for the little things.

Tuesday, May 3, 2011

Birthday Bliss

It's hard to believe that Courtney is already two years old!
Our little princess/Roller-derby wanna-be has been nothing if not vivacious and full of life! 
When we first found out about Jacob, we weren't sure how she'd react to the "competition" but she's taken on such a sweet and loving presence around him (as long as she's paying attention and doesn't accidentally step on him as she's running around screaming and tearing the house apart in 5 seconds flat!)

This year was the first time Courtney really had a chance to get into the spirit of her birthday.  So we invited our friends, the Carpenters, and Les & Karen (KC's brother and his wife) over to celebrate the big day!
Everyone got into the "Princess" spirit!
Courtney loved all of her presents, all of the attention, and all of the yummy food!  Aside from her squeals of delight and her saying things like, "That's AWESOME!", it was a low - key birthday filled with those we love the most! Thanks to everyone for making it a success! :)

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