9 Reasons Why I'm Grateful My Son Has Down Syndrome

I am a member of several Down syndrome support groups. Because of my schedule, I don't get to meet with many other parents in person, so I choose to stay in touch online and offer support as needed via the Internet.

There are a surprising number of parents who find out about their child's Down syndrome diagnosis and then join support groups in a tissy because they are worried about how bad it will be to have a child with Trisomy 21.

Now that Jacob is nearly seven, I like to think I have a bit of experience. So, to all those parents who just found out their child has Down syndrome, let me congratulate you. You've won the lottery! You will now get to raise one of the most amazing children on the planet!!

Why do I think that? Let me give you nine reasons:

1. They love unconditionally. I thank my lucky stars each and every day for Jacob.  He is the kind of person who doesn't care what you look like, smell like, or think like.  He doesn't care if you're young (though he is partial to babies and children smaller than him), old, middle-aged, black, white, tan, green, or purple. He loves you. If you grump. He ignores it (for the most part).  If you grump at him, he gets over it pretty fast and loves you anyway.  Every day he teaches me to look beyond the cover, and see what's inside.  That's where a person's true value lies, and everyone is worth loving.

2. They give more than they take. Yes, children with Down syndrome require extra work, extra patience, and often extra care. But they seem to give back tenfold.  When ever I need to smile. Jacob gives me seven. And then he laughs until I'm giggling right next to him.  If I need a hug, he'll snuggle all day long if I want.  If I need some company, he's happy to tag along wherever I go, regardless of what I'm doing.  If I need love, he will smother me with kisses and adoration.  If I need space, he's happy to give me some of that too. The boy's a giver.

3. They are intuitive to other's needs. I am constantly amazed at how in tune Jacob is to the needs of others around him. Granted, sometimes he still says, "screw you!", but most of the time, he senses our moods and our needs and works extra hard to give them to us.  If I'm sick, that's the day he decides to hang around, watching Netflix while cocooning at my feet. Most days, I'm running after him screaming, "get back here!" If I'm angry and need space, he usually gives it to me. If  need a hug, all the sudden he's in my face cuddling.  He's that way with others - family and strangers alike.  It's interesting to see how many strangers he interacts with and they tell me how badly they needed that time and energy from him.

4.  They teach us to stop and smell the roses. Oh, this one he's taught me six ways, side ways and upside down.  Jake is a quick learner, and he is extremely capable for a child with Ds. But if he doesn't want to learn something, or he doesn't see the value of it, nothing I do or say will make it happen. Instead, I'm forced to move at half a snail's pace, learning to appreciate the blessings I do have, feel the energy of those around us, take time to appreciate the scenery, and literally learn the joys and mysteries of playing with sticks. And I highly recommend it to anyone who is reading this. I'm a person who finds a task or chooses a goal and puts on my blinders, moving a million miles per minute until I achieve it. Jacob has taught me that not all who wander are lost.

5. They teach us that the opinions of others do not matter. On those rare occasions when someone is mean or cruel based off of Jacob's disability, or if they say something out of ignorance, it is easy to become offended, hurt or angry.  Those are the moments when I observe Jacob and realize, he doesn't really care what others think of him. He's on this earth to love and enrich those around him.  If someone wants to be his friend, then great! Join the masses.  If not, no worries.  Haters are gonna hate and he's not concerned with their opinions.

6. They teach us what is truly important in life. Before Jake was born, I used to think that having one's health was the most important thing.  If we had nothing else, then we would be fine. Then I had Jacob. And he was NOT healthy.  I spent many nights in the hospital gazing at my sleeping son with mottled skin, and labored breathes, wondering what was truly important.  If not health, then what? Then it occurred to me that the truly important things are not things. They're love and relationships, not matter how fleeting.  Money runs dry, health deteriorates, friends move on, family can be conditional.  But love conquers all, and healthy relationships will help a person survive virtually anything.

7. They teach us to never give up. My child is not a quitter. Yeah, it may take him longer to learn something. It may not. But when he puts his mind to it, hell itself won't keep him from achieving his task. Fall down seven times, get up eight? Psht. Amateurs. Fall down 57 times, get up 58.

8. They help us learn to serve others. One of the hardest things I learned to do while Jake was in the hospital was to accept help. I'm the sort of person who can plan a seven course meal with the mayor, fix your sprinkler system, sew a dress, and build you a website. With nine siblings, our parents taught us to do just about everything. And if we didn't know how, by golly open up a book and learn!  So when I was no longer able to do everything, I had to ask for (and accept) help from others.  For a very long time.  I'm talking years.  But this experience helped me learn what it feels like to ask for help, receive help, and how important it is to offer and serve others with the right attitude. Oh what a difference is makes to walk a mile in another's shoes.

9. They are unfiltered. Jacob's inability to filter his reactions is one of my favorite things about him. I always know where I stand with him. Always.  If he's upset at me, I know it. If he's happy. I'll get the biggest grin on the planet. If he's feeling playful, be prepared for lots and lots of zerberts. If he's said, he'll let me know.  I don't have to second guess, or interpret him. For a non-verbal child, Jacob is incredibly expressive.

After seven years, heart surgeries, countless medical procedures, and all the issues we've had with speech, etc. I still wouldn't trade my Jacob for anything in the world.  If I was told before he was born what his childhood would be like, I still would have chosen to keep him. Because, from beginning to end, Jacob has been one of our greatest blessings.

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.

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! :)

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.  

4 Things Things to Be Happy About When My Child is Fighting For His Life in the Hospital

There's a long-standing joke in my family that one must NEVER EVER EVER pray for patience.  Because when they pray for patience, God decides the best way for us to learn patience is to give us some massive trial in our lives that we have no control over until we're beaten down enough to realize that the only thing we can do is PATIENTLY endure. 

Hmmmm.  Apparently I've been talking in my sleep again. 

I apologize for last night's ranting.  I should never blog at 4 in the morning.  What was I thinking?!

Yes, a few hours under my belt DID do me some good.  I was able to get about 3 1/2 hours of sleep before heading back to the hospital and relieving KC of his all-night shift with Jacob.  And when Jacob was in my arms, it only took seconds for me to realize that ultimately, all was right with the world again when we were together - regardless of where we were.  Having him snuggle up to me and contentedly sigh and fall asleep has a way of sapping all of the anger and frustration away.  We spent the entire day just sleeping and snuggling with the occasional interruption of those pesky medical workers earnestly trying to find out what was wrong with my baby boy.

We met with Ultrasound, where they strapped Jacob to a board, had him drink barium - laced sugar water (which he LOVED by the way - he had a fit when they took it away from him before he finished!) as they watched the flow of the barium down his digestive track to make sure that all of his anatomy was in tact, not twisted, and working properly.  Clean bill of health!

We then met with Radiology where they laid him on a table and gave him more liquids to check for reflux and to see if the liquids were coming out the "other end" in a timely manner.  Anatomically, Jacob looked fine, but the radiologist said that Jake had reflux all the way up to his mouth.  Soooo, to add to baby Jake's list of ailments we now have reflux.  But I'll take reflux ANY DAY over something like a twisted colon, or misplaced intestinal tracts, etc. 

With a diagnosis of reflux in hand, we met with a speech therapist (yep! the infant got to meet with the speech therapist!) who sat down with me during several of his feedings during the day to assess his current feeding habits and then to show me a modified feeding regimen will help inhibit all of Jacob's reflux so that he can keep his food (and medicines) down and his weight up.  The result? We now have Jacob on a prescription formula (who know that they even had prescription baby formula!) with a page-long description of how we are supposed to feed Jacob (How to mix the formula, position to feed him in, position for burping, when to change his diaper, position he's supposed to sleep in  and so much more!) They brought in a wedge and sling for his bed (If I can ever figure out how to download pics from my cell phone I'll download the picture of him in his sling - he looks like he's in a straight jacket!!) for sleeping. So, it looks like rather than waiting till Christmas to kick Courtney out of her Crib (she's getting a "big girl bed" on Christmas) - we'll have to kick her out early because the wedge and sling definitely won't fit in his cradle. 

Through it all though, I just try to remind myself that this visit isn't really life-and-death.  It's a little hiccup that can be quickly addressed, managed, and we'll be back on our merry way in no time.  In fact, once we'd met with the speech therapist the next two feedings were spit-up free!  That is until the night shift nurse came in, listened to us give her the run-down of what we were doing to manage his vomit, then ignored us and gave him his full dosage of Dijoksin and Zantac rather than giving him mini-doses to help him digest better.  Who'dve guessed that he'd throw up EVERYTHING 30 seconds after she squirted it into his mouth all at once? (sigh)  Luckily that will be the only dose she gives him before the next shift change. Hopefully we can get someone who will listen to us, what we are doing to deal with the vomiting, and try to work with us rather than doing it their way and having Jacob reap the consequences.  Plus, we now know what's wrong, and have the tools necessary to manage this problem at home.  Its just a matter of him gaining enough weight and keeping enough formula down to get him out of the hospital so we can begin doing what we know works for him rather than having to fight all of the various medical personnel at each shift change.

OK, so I REFUSE to end ANOTHER blog on a negative note, so it's important for me to say that yes, life right now is hard.  Yes, Jacob is going through a rough patch.  Yes, this has been an incredibly emotional experience.  But I've got to look on the bright side too.

1. I've got an incredibly supportive husband who has done nothing but take care of our family, advocated for Jacob time and time again, and gone above and beyond the call of duty when it comes to taking care of me, our children, our home, and everything else that's been in upheaval the last 6 weeks.  I'm so blessed to have him as my rock right now. 
2. KC's work has been such a tremendous blessing. He's had the ability to take almost a month off of work to help out  and be there for Jacob while he was in NICU and PICU.  Where else could a person do that and know that he will still have a job when he comes back?  We've been so blessed to have Avista, the support of their employees, as well as the incredible insurance that we will be making very good use of in the upcoming months and years. 
3. I'm so blessed to have the family that I have - both on my side and on KC's side.  What a huge support system we have - both physically, emotionally and spiritually.  I am speechless at the outpouring of love and help that I've received from my family through prayers, babysitting, transporting, helping out around our home, meals, phone calls, blessings, e-mails and so much more!  The support we have received from our family has been unparallelled.  We've been so blessed!
4. Where the family left off, my ward and our friends kicked in.  All I can say is "Wow!".  The meals, the phone calls, the rides for the children, the help around the house, gifts, friendship, shoulders to cry on, prayers, cards, and so much more.  I'm speechless. 

I've had more than my share of opportunities to see the other parents in the hospital visiting their children.  How lucky I am to be able to care for my child and not worry about the other three at home, or my home, or my husband, or any other responsibilities.  We have such a massive support system that we can rely on when necessary.  And so many people have little or nothing to rely on in their times of need.  I feel almost guilty for being blessed with so much by so many.  For all of you I am abundantly thankful.