Wednesday, May 22, 2013

The Green Eggs and Ham were good, and so were the last 52 days

So first off, I need to apologize for not keeping up with this blog for nearly the past two months.  It seems like life is getting busier and more and more hectic every day!  For a while, I really didn't have anything pressing I needed to write about.  Then I did have things I wanted to share, but I didn't have the time to share them.  And then, to top it off, my internet quit working for two whole weeks!!  Do you know how hard it is to survive daily life without internet?  I know!  It's tough!  After a short and rather embarrassing call to our internet service provider, we worked together to resolve the issue.  It turns out, it was Sam's fault.
My pal Jodi! I LOVE her!!
Our little man has been busier than ever in the past couple months!!  First of all, the birthday went great!  36 members of Team Sam piled into my parent's house on March 30th and about 30 seconds after everyone got there, Sam freaked out.  I'm pretty sure he was just overwhelmed by all the people.  I was too afterall.  Marie read "Green Eggs and Ham" to the crowd and we devoured LOTS of food!  Sam cried through the entire meal and refused to really eat much of anything without screaming at it first.  We moved to the living room to open gifts...sure the first one had his attention, but after that he wanted nothing more than to bury his face in my chest and escape the party.  He received so many nice gifts from everyone!  After gifts, it was time for cake...that was the ticket to Sam's happiness.  The very second I set that cupcake down in front of him, he stopped his crying and screaming and he dug in with a vengeance.  He smeared cake up and down his tray, himself and all over Grandma Robbie's kitchen.  (No worries, Sadie the dog cleaned it all up)  And from that cupcake on, he was a happy camper! 
Before the cupcake....

My baby is no longer a baby, he's a big one year old boy.  His birthday was fun and we celebrated his life with love and laughter,...and I was able to let go.  I forgave myself for the tears and I'm moving forward with a heart filled to the brim with hope.

A couple of weeks after his birthday, Sam started to push himself up to sitting all by himself.  A couple weeks after that, he progressed from tucking and rolling all over to get where he wanted to go, to scooting himself forward inch by inch.  Two more weeks pass, and this boy is cruising!  He can army crawl like it's NO one's business and he's been known to disappear on us.  He has a fascination with doors, and if I leave a bedroom or bathroom door open, he crawls into a room and shuts the door, leaving us to wonder "where is Sam?"  It turns out he crawled into my room one day and turned the switch to the modem off, creating a lack of internet service.  He's growing and he's moving, he's learning and developing every day and it's so beautiful to watch.  The day he learned to turn the pages of a book all by himself, I cried.  I try not to make a big deal out of these little things, but they're not little things anymore.  Everyone in this house recognizes it.  Sam sucked out of a straw for the first time and I thought the girls were going to tear their vocal chords they screamed so loud with excitement.  
After the cupcake!

We attended the Coordinated Treatment Center's Down syndrome clinic again in May.  The day was exhausting once again, but very informative.  We met with a Speech pathologist who recommended we start speech therapy with Sam in about six months.  She talked to us about sign language and how to help Sam learn some basic sign language - just enough for him to communicate his basic needs with us.  "milk" "more" "eat" "book" "all done"  He really hasn't made any progress with language lately, but his ECSE teacher is not concerned.  He's been making such huge strides in other areas, it's very common for another area to slow down or temporarily shut down.  
Grandma doesn't mind cake smeared all over her kitchen,
as long as her Sam is happy!!

We met with a dietician, who took one look at Sam and could tell he's a good eater.  Other than adding a multivitamin to his daily intake, she was very happy with his growth and eating habits.  

Physical therapy wants us to look into some ankle/foot braces that will help prevent problems with his ankles when he starts standing on his own and working on walking.  We haven't ordered them yet, I pray they come in a camo print. :)

Occupational therapy....remember the Bayley's assessment?  We had to go through that again, but this time Sam picked up the Cheerio and devoured it before she had a chance to tell him to do just that.  His cognition was measured at about a 10 month age, fine motor 12 months and gross motor 11 months.
These two have a very special bond...except for when
Jessi forgets where she's swinging her rear-end and Sam
happens to be in the way....

Audiology - Sam underwent some "big boy" hearing tests, and passed with flying colors.  The tubes are working well, and there are no concerns about his hearing at this point.  We pray it continues to go that way.

Vision - Sam's prescription has been reduced by half, so his glasses no longer look like Coke bottles. 

The pediatrician was great and answered many questions, as did the Social Worker.  She hounded us about getting our application for MA completed.  It's still sitting in it's envelope on the desk...someday I'll get around to it.  

This is what happens when my sisters
get ahold of mom's LIPSTICK!!
Our final stop at the clinic was the lab to draw blood to test for Celiac disease and thyroid issues.  The lab tech in training poked around in Sam's arm for a minute or two before the instructor stepped in and did it in under 30 seconds.  Sam was screaming his lungs out and I thought Kevin was going to toss the student out the window.   

According to the professionals at the Down syndrome clinic, it's time to start direct therapies...meaning after another assessment (of course) Sam will begin weekly occupational and physical therapy outpatient treatments at the hospital.  It's overwhelming to think about adding more to our plate, but I have to believe that if it's best for Sam, it's a must do.

We walked away feeling's not like there's any "good news" associated with Down syndrome.  Sure, the good news is Sam's heart is good, unlike half of kids born with Down syndrome.  Sure, the good news is Sam's hearing is up to par, unlike so many children born with Down syndrome. But in general, there's not a ton of good news.  Hearing that your thirteen month old son has the cognitive ability of a ten month old is heartbreaking.  But there is something good I can say about his cognitive ability...and this isn't something that can be measured with a Bayley's assessment.  This is something that only a heart can measure.

This is what love looks like
When Sam wakes up in the morning and I go up to his room to pluck him from his crib, he lifts his head from the mattress and before he even finds the energy to open his eyes, he's smiling.  When I change his diaper, as we leave the room we walk past a large mirror and every single time he starts jumping in my arms with delight at the sight of himself and me together.  When his sisters walk in the room, he grins from ear to ear and anticipates their tickling.  When he goes to give Kevin his "night night fives" before bedtime, his face shines with love for his daddy.  There's this theory that people with Down syndrome are "always" happy....and I've learned, that is far from true.  But Sam, I believe, truly understands love and happiness, even at his young age.  He always responds to our loving words and gestures and there's a sparkle in that boy's eyes that I've never seen before.  He might not be as "smart" as the books say he should be, but he's by far the wisest person in this house.

Friday, March 29, 2013

What a year....

It's Friday, March 29th.  Today, I worked, as usual, and it was much like any other Friday.  I did some laundry, I read some books to the daycare kids, I made breakfast, lunch and supper, I swept the floors (four times).

Many times throughout the day, I thought back to a year ago today and what that day was like...and let me tell you what can change over the course of one year....

One year ago today, I made my family pork chops and potatoes for supper.  After supper, the girls took their baths and we delivered them to the people who would look after them until the time came to reunite them with us and their new baby brother.  I took a long hot bath and shaved my legs and procrastinated going to bed because I knew that when I woke up I'd be preparing myself to go to the hospital and give birth.

One year ago today, I was one hugely pregnant mambo mama who could barely waddle from one room to the next.  I was an emotional mess, in pain and extremely uncomfortable.  My legs were swollen and the veins in my left legs were bursting out the side - my carpal tunnel was nearing the point of unbearable.

One year ago today, my head and heart were swimming with the realities of having a son.  Oh the dreams we dreamed!  We were so close to completing our family once and for all and we couldn't wait.

One year ago today, we argued one last time over baby names.  I wanted Westyn Jon, Kevin wanted Magnus Jon (no kidding) we settled on Philip Loren or Loren Philip after our dads.

One year ago today, I believed that I had a perfect life and that nothing in this world could change that. Nothing in this world could challenge my beliefs, nothing in this world could alter my dreams.

One year ago today, I believed my life was filled with every amazing person I would ever know - they were already in my heart.

One year ago today, I used the word 'retarded' on a fairly regular basis.

One year ago today, I didn't know what Down syndrome really was.

One year ago today, I was selfish.

One year ago today, I was someone different than I am now.

One year ago today, I feared nothing.

Wow, what a year can do to a person.

Today...I made Tacos in a bag for supper and shared them with close friends who came to celebrate Sam's birthday.

Today...I am not pregnant. *phew*

Today...I have a son, my family is complete and it is perfect.

Today...I still marvel at how much I love the sound of Sam's name as it rolls from my mouth.

Today...I realize my life was far from perfect, and it's still not perfect - but it is amazing, and I'm blessed with so many that a year ago I didn't pay attention to, gifts that a year ago meant nothing to me.

Today...I have more amazing people in my life than I thought possible.  Because of Sam, we've met many many families who have become wonderful friends to us and for us, and we're not done yet.  We're a part of a family that only a select few get to experience and it is truly a wonderful gift.

Today...I fight to remind people how insulting and hurtful it is when they use the word 'retarded.'

Today...I know what Down syndrome is....and I know how it affects the individuals who have it as well as the people who love them.

Today...I'm not 'as' selfish as I was a year ago. :)

Today...I am different.  I love deeper, I feel more, I accept more, I see more hope.

Today...I'm scared as hell.  We are on a journey during which we will face a world of people who don't accept, who will point fingers and ridicule.  We'll encounter people who will ignore, people who will reject, people who will criticize.  Let them.  I hope for a better tomorrow.

When I first began thinking about and planning for Sam's first birthday, there was one idea that I couldn't get out of my head.  I want a Re-do.  I want to go back and do March 30th, 2012 over.  I want to go back and celebrate in those moments I was too busy crying.  I want to go back and hoot and hollar in those moments I was curled in a ball on my hospital bed.  I want to take back the cussing I did at God.  I want to go back and do it all over again.  I want to set my alarm for 4:03 a.m. and get up, take a shower, put on my makeup and do it all over again.  Only this time, at 12:08 pm when I look in my sons face, I want the tears that streak my face to be tears of pride and joy, tears of happiness and tears of awe...not tears of fear and anger.  I'm not proud of March 30, 2012.  It was the most (in Ella's words) "suckful" day of my life.   But why?  Because I let it be.   I knew so little and we were so scared, my natural reaction is exactly what I did - I shut down.  Tomorrow, will be different.

Dear Sam,
I'm so sorry.  I hope every day of my life that you'll forgive me for the tears I cried.  I LOVE YOU more than life itself and I will never be able to repay you for the gifts you've given me.  You've made us all better people and I can't wait to celebrate YOU tomorrow.  When the guests arrive at 11:30, your big sister Marie is going to read Green Eggs and Ham, and we're going to gobble up Grandma Robbie's amazing scalloped potatoes and ham and we are all going to sing to you as you smash your fists into your cake and then your cake into your face (I have no doubts this is going to be entertaining because I know you got your sweet tooth from your mama) and then, I'm going to let go.  I'm going to forgive myself for every sad moment in the days after you were born.  Those days shaped me some as a mother, but they do not define my love for you and I need to let them go.  I need to forgive myself for every negative thought, and for believing my life was going to change in bad ways.  I'm so sorry.  I know you won't remember the times when I held you so close you could hardly breathe and cried and screamed with anger over the loss of what I dreamt while I carried you inside of me, but I'm going to apologize for them anyway.  I. Love. You.  I. Believe. In. You.  I will always be your biggest cheerleader.  I can't promise that I won't cry again...the day will come when someone says something to hurt you, someone will reject you because of who you are.  But, I will be here and you will always know that in my heart you are the best son a mother could ever dream of - you give us what many other sons can't.   You are a gift.  You are a treasure.  You are an answer to my prayers.  You are beautiful, and so amazing, my child, my beloved child.


Sunday, January 27, 2013

Are we there yet?

Are we there yet?
Are we there yet?
Not yet.
Are we there yet?
Not quite.
Are we there yet?
Are we there yet?

Ever have all your children chime together and ask "are we there yet?" from the backseat of your vehicle?  When we go on trips, short or long, someone inevitably asks "are we there yet?"

We are having "are we there yet?" moments with Sam now.  When we go places and people get a look at how big and strong he's getting, they assume he's doing everything any other almost-ten-month-old would be doing.  They ask "is he crawling yet?"  They say "oh I bet he's cruising around the house now!"  They ask "is he pulling up on the furniture yet?"  They say "I bet he'll be walking soon!"

It's seems everyone's asking us "is he there yet?"

Nope, not quite...but he will be someday.

Nearly every individual with Down syndrome has something called "hypotonia."  Hypotonia, more commonly known as low muscle tone, can be basically described as muscles lacking stamina.  The muscles respond much slower than they do in a typical persons body.  As neurons develop though, the effects of hypotonia can tend to decrease as a child reaches about the age of 9.

Hypotonia also causes the muscles to tire more quickly, so while it's easy for other 10 month old babies to sit for a long period of time, Sam just plain old tires out doing it.  Other 10 month olds can move from sitting to a crawling position, down to laying on the floor and back up to sitting with no problem at all, but for Sam it's much different.  Each movement of muscle is learned differently than in typical babies, and each movement of muscle take a lot of energy.

It took a lot of work to teach Sam to sit and it took a lot of hard work on his part to get his muscles strong enough for him to sit on his own.  Now when he's sitting, we push him over (I know it sounds mean) to teach him how to catch himself.  We push to one side and show him how to put his hands on the floor and then we help shift his feet under him so that he's on all fours...and then he flops to the floor in one mad and exhausted heap of baby.  So, we do it again.  And again.  And again.  And eventually, his muscles will do what they've been taught.  We are also currently working standing by the furniture and the beginning motions for crawling.

A milestone? Posing for the camera?
Hypotonia affects every muscle of the body, facial muscles, muscles in the legs, arms and trunk - every muscle.  Often times, because of low muscle tone in the facial muscles, people with Down syndrome will require speech therapy.  Sam's teacher is already doing speech therapy with him and it's interesting to watch her show him different sounds with her mouth.  He hasn't yet mimicked us in these activities, but he is making different sounds which is a good sign.

Hypotonia is something Sam will just have to learn to live with - there's not a fix for it.  Fortunately, we're able to change his activities when he tires to give him a break and we hope that with time the severity of hypotonia will decrease and his stamina will increase.

Another quick update unrelated to hypotonia, Sam will be receiving his very own set of tubes on Thursday.  He's had two tympanogram tests performed.  Tympanometry is an objective test of middle ear function.  It's not a hearing test, but a measure of energy transmission through the middle ear.  Variations in air pressure are created in the ear canal and a measure response by the eardrum is taken.  After two of these tests, the doctors determined that Sam does have a slight hearing impairment in his right ear due most likely to some fluid built up in that ear.  The tubes should alleviate this and if theories are correct, he'll hear better.  I'm interested to see what it does for his language development too!  I was told that he's in a big window for language development right now and it's super important to make sure that he's indeed hearing things correctly so that he learns how to speak them correctly.

It doesn't bother me when people ask "is he there yet?"  It doesn't bother me that it took Sam two months longer to sit up than it took any of his sisters.  It doesn't bother me that he most likely won't be walking by his first birthday like most people would expect.  What matters is that he will get there someday and I'm proud of every achievement he makes!

There are milestone he's reaching that I didn't even know exist.  In fact, I find it kind of funny because most of these milestones aren't even considered by most parent with other kids.  Nobody pays attention to when you pick up your first cheerio or when you should have  picked up your first cheerio until you do it LATE.  Two milestones Sam reached last week were passing and object from one hand to another and apparently he's mastered "object permanence."  (I had to ask what that was.)  Object permanence is when a child learns that an object is still there even if you can't see it.  It's basically the "peek-a-boo" concept.  You put a toy on the floor in from of Sam and cover it with a blanket.  At first, he didn't do anything.  Eventually, he pulled the blanket off and played with it.  But now, he understands that the toy he wants is under the blanket - because he rips the blanket off and continues to play with the toy that you tried to hide from him.

We've also mastered the art of "smolder" out ladies!
Last night, we hit a HUGE milestone...something we've been working on in therapy for a very long time....something that has caused Sam many frustrated moments of exhaustion.  In one swift movement, Sam pushed himself up on all fours last night.  I jumped off the couch faster than a horse out of the gate when I saw it because it shocked me!  He's been so stubborn when we work on this and has made it very clear to me he's NOT interested in being on all fours.  But in true Sam fashion, he made the choice to do it and he did.  My new goal for Sam is to crawl from one side of the room to his pile of birthday presents...which means we have 62 days to get this crawling business down.

We can do it.  We're not there yet, but we are on our way!

Tuesday, January 1, 2013


Sam's birth suddenly transformed our lives.  We were prepared for a baby, but not for a baby like Sam. But over time, we adjusted to a new "normal" and all is well.  But from the get go, that little guy has been completely in charge of himself, and he proves that to us daily.

December was a month of many firsts, big firsts, for Sam.  

On the 1st, Sam suddenly had a tooth.  When I say suddenly, I mean SUDDENLY.  On Friday, November 30th Sam did not have a tooth or even a sign of a tooth in his pink little mouth.  But Saturday morning, on the 1st, his first tooth emerged in a sudden burst of raw-red-pain!  At eight months old, and having sisters who started teething as early as 4 months, I was checking his mouth nearly daily for any sign of a tooth.  At 8 months and 1 day old, he popped one out for us to see.  Then on the 14th, he gained another tooth.  This one came in a little less abruptly.  He's quickly learning how to use his teeth out, he bites!

Sam, as I've mentioned before, is developing nicely and is considered "low normal."  One minor concern that his teacher and I had discussed were the sounds that he was making.  He was very vocal day in and day out, making moaning and groaning sounds with vocal fluctuations.  However, we had yet to hear any vowel or consonant sounds.  I asked his teacher about this sometime in November, and without seeming overly concerned, just said she's waiting to hear vowels and changing vowel sounds - like "aaah oooh".  I started talking to him like an alien and really enunciated different vowel sounds to him, contorting my lips in extremely awkward ways so that he could see my mouth making the different sounds.  Did it work?  No, not really.  He just looked at me like I was an alien.  However, on the 5th of December, Sam suddenly decided he knew how to talk!  In that one day, we heard all of these sounds: mama, dada, blah blah and lala.  Now he sits around chattering like a little chipmunk, acting like it's no big deal to talk!  I try to coax more "mama's" out of him as he mostly says "dada"....and whenever I do this, he chuckles at me, shakes his head and loudly says "dadadada".   

My girls all sat up at about the 6 month mark.  When 6 months, and then 7 months came and went, I tried so hard not to get discouraged and I had to remind myself that he WILL sit up when he's ready to do it.  But that didn't stop me from spending a lot of time working with him.  My goal was for him to be sitting up by Christmas, so that he could open his gifts.  We worked, and we worked, and we worked....all with no success.  I would set him on the floor between my outspread legs and he'd buck his little tush forward and fall back on me every time.  I'd try other ways of getting him to sit, but he'd stiffen his body head to toe like a steel rod and stand instead.  I tried plopping him on the floor with a boppy pillow behind him and walk away, and I'd find him ten seconds later face first on the floor or bent backwards over the pillow.  I was getting extremely discouraged.  With Christmas less than two weeks away, I had almost resolved to push my goal back a little.  Then, on Wednesday the 12th of December, I plopped him in the middle of the living room floor with the boppy behind him, and I walked away.  I waited for the telltale "whomp" as his face smacked the floor, but it never came.  After a minute, I peeked into the living room to find him sitting there, playing with a toy.  I stood watching for several minutes, as my little man suddenly knew how to sit, like it was the most natural thing in the world for him.  It was like he suddenly decided that sitting was no big deal and was his new favorite thing to do.

Sam has the appetite of a horse.  He has for several months now.  I had to start cereal at 3 1/2 months, and fruit and veggies at four months to keep him satisfied.  He liked everything except for peas, but can you really blame him?  At about 7 months, I started trying some "real people food" with him.  He tried spaghetti, tator tot hotdish, mashed potatoes, real banana, and stuff like that.  He would take the first two bites enthusiastically and then he'd pucker his lips shut and stick the tip of his tongue out like a little pink stop sign indicating NO more.  I'd keep trying and trying, but to no avail.  OT suggested trying a bite of "people food" followed by a bite of baby food, perhaps he was overwhelmed with the flavorful foods we were eating and just needed a break, a bite of bland food, in between.  That didn't work either.  Until Christmas Eve morning....suddenly, Sam loved people food.  In fact, he ate more of my biscuits and gravy than I did for breakfast, and at lunch he chomped down a half of a grilled cheese sandwich, and for dinner he tried and loved Aunt Vicki's meatballs, mashed potatoes and gravy.  He suddenly ate everything in sight and hasn't stopped yet!  Lefse, chili, pizza, beef stew, hashbrowns, toast, broccoli and even licorice.  Yes, I fed my baby licorice.  And you know what?  He LOVED it!!

It's New Years Day today, it's suddenly 2013.  I remember New Year's Eve last year, with friends, smooching on Kevin at midnight and getting teary eyed (remember I was pregnant at this time) thinking how tough 2011 had been and hoping for a better 2012.  Now, I can't remember what was so tough about 2011, but I found myself last night hoping for a better 2013 too.  2012 was an incredible year for me, for all of us.  My heart grew in ways I didn't know possible and my life has been changed in so many ways because of Sam.  Sam is nine months old, meaning I have only three months to plan his first birthday extravaganza, and three months to come to terms with all the emotions I felt in 2012.  I'm not saying that I have to change what I felt, because I can't do that.  But I need to forgive myself for beating myself up over what I felt when Sam was born.  His birthdate was the most difficult day of my life, and I cry now as I type those words.  Through everything I've learned and gained with his presence in my life, I still can't go back and change what I felt when I first looked in his eyes.  I can, however, forgive myself for thinking poorly of myself for what I felt.  It seems we all come up with different resolutions as we move into each new year, and I think my biggest goal this year is going to be forgiveness for myself.  I know that time isn't slowing down any time soon, and before I know it, Sam will suddenly be a toddler and then a teenager, and my other children will be grown and gone, and I surely don't want to waste a single moment more feeling down about what our lives are like now.  Every day is a gift, and can't be taken for granted,....because tomorrow, things might suddenly be different.

Thursday, November 15, 2012

Sammy want a cracker?

Every time I look at Facebook these days, someone is posting something they are thankful for.  Several people are sharing something everyday this month - it's 30 days of thankfulness.  Mostly, people are thankful for their families, their homes, their jobs, their friends - everyone's lives are so blessed with these things, and I can't help but be happy for their happiness too.  It makes me think about what I'm thankful for as well.  I too am thankful for my home, for my family, for my kids, for my job.  My life is so blessed, and while I know that, I also know that I take a lot of things for granted.

Last night, I discovered that Sam likes Ritz crackers.  In fact, it's the first truly solid food I've given him that he doesn't spit back out at me.  Now, I know there isn't exactly a lot of nutritional value to a Ritz cracker, but you have to understand the importance of having him have solid food in his mouth period.  By having solid food in his mouth (and I'm not talking about Gerber baby food...that's mush) he is learning how to manipulate the food around his mouth with his tongue, and learning to chew, and this is all a part of language development for him.  That maybe doesn't make a whole lot of sense to you, but to us, this is a big deal.  So, Ritz crackers it is. 

As I stood next to his high chair last night, trying to coax him into holding the cracker himself, I said to him..."Sam, you have to learn to do this yourself you know. I'm not always going to be around to hold your crackers for you."  Kevin, who was within earshot looked at me like I was nuts.  Did Sam reach out and grab the cracker?  No, I stood there while he nibbled on it.  I was just happy that he had an interest in it in the first place!

Today however, as we were getting lunch ready, I dug out my trusty Ritz crackers to see if Sam would munch on them again while waiting.  I grabbed three, hopeful that he would try.  I put one in his right hand and he grasped it - he GRASPED that little cracker like it was no big deal, even though I was just told last week he was "significantly delayed" in the fine motor skills department.  You know what he did next?  He stuck that cracker in his mouth!  Did you hear me?  He moved his hand up and stuck the cracker in his mouth!!  Granted, it was sideways and he couldn't get his mouth around it, but that's not the point - he put it in his mouth!  For the next five minutes, he held onto that cracker for all it was worth and mashed the heck out of it, completely munching it down!  After that another, and another.  I was astonished, in fact, I was crying.  It might sound silly that I would be so excited over something so small, something that you or I would take for granted, but I was so proud that he learned that he could feed himself.  I was so happy. 

I ran back to my bedroom and emailed his teacher and occupational therapist, because they are half the reason he was able to do this!  All the hard work they've done for him is paying off in something as simple as a Ritz cracker!  His teacher replied that I should buy more Ritz and get him a can of that spray cheese because this was truly something to celebrate.  This was truly something to be thankful for!

A couple hours later, a man from my church called, and started talking about the email that I had sent to his wife about Sam's accomplishments.  I started laughing, and explained to him that I sent the email to the wrong person - his wife has the same name as Sam's OT, and I must have mistakenly sent her the email instead.  But he said, no, it wasn't a mistake.  He asked if he could talk about Sam on a radio talkshow that he's doing tomorrow morning.  They will be talking about thankfulness, and how all too often people just talk about the everyday things they are thankful for - their homes, families, jobs, friends.  He was excited to see us be so thankful for something so small as learning to eat a cracker.  In tears, I said "so, it really wasn't a mistake that I sent you the email by accident."  And he said "no Amanda, I don't think it was."  

Yes, the Lord works in mysterious ways sometimes.

So, tomorrow morning, the story of Sam and his crackers will be aired on a local AM radio show.  You better believe that I'll be tuned in and waiting.    

By they way, anything but Ritz won't cut it.  Tonight, I handed him some Town House "light buttery crisps" and he wanted nothing to do with them.  Guess I'm going grocery shopping tomorrow.

There is a bigger lesson I've learned in all this too though.  I'm so incredibly proud of each of these little accomplishments that Sam makes, but these small accomplishments of his also open my eyes to the things my daughters are doing.  Sam is teaching me to celebrate all the small things - even the things that seem insignificant are worth celebrating and being thankful for.

Monday, November 12, 2012

Glasses and Teacups

Sam had his eye appointment today.  I have good news, and bad news - which would you like to hear first?  Well, I'll give you the bad news and hopefully the good news will cheer you up.  There's actually a couple parts to the bad news.....first, Sam is farsighted.  Like a +3.5-+4.0 farsighted.  So, he needs glasses.  Second, there's only a 50-60% chance he'll grow out of this and not have to wear eyeglasses for the rest of his life.  Oh, there's a third part to the bad news...they don't make infant frames in camo.

Here's the good news - remember that Bayley's assessment he struggled with last week?  The section on fine motor skills that he so gracefully failed?  Well - we have an answer.  He couldn't see the damn Cheerio!

Right now, that's all the good news I have for you.  You see, after Sam was born, I read a book called "Bloom", a memoir of a mom's first year with her daughter with Down syndrome.  In the book, the little girl, Nella, had to get eyeglasses and she was so stinking cute, I secretly hoped that Sam would need glasses too.  Well, have you heard the old saying "be careful what you wish for?"

As I was browsing through my limited choices of eyewear for Sam, my spirits fell.  The glasses made for infants are not exactly fashionable.  Not that I'm all about the fashion (that's Marie's department), but come on.  People already stare at Sam, and now we're going to slap a big old pair of plastic-rubber-wrap-around-shiny-blue glasses on him.

While I pondered this image - I realized - hey, if people are going to stare, let's give them something to stare at.  So, I chose the frame that best fit Sam's face and personality.  I wasn't so into the circular "where's Waldo" frames, and Sam's not exactly ready for prep, this is what I chose:

And let me tell you, he doesn't like them one bit.  Can you tell?  I'm hoping the adjustment to wearing glasses full time goes a little smoother once he starts spotting the Cheerios in front of him, and realizes he can pick them up and eat them!

Sometimes, it's awfully hard to understand where the whole "big plan" is heading.  It's even harder to just accept that we really have no control over tomorrow.  As a control freak myself, this is really hard to accept.  But on the same token, I do believe there is a plan.

Have you ever heard the song "The Potter's Hands?"  I sang this song for my brother's graduation service at church and it was sung at Ella's baptism.  I love this song.  It says: mold me, shape me - You are the potter and I am the clay.

It's not easy to sit back and be the clay, and it's not always easy to trust that the Potter knows what He's doing.  This past weekend, I heard a story that struck a chord. (AND a tear duct with me)  It goes something like this:

There was a couple who took a trip to England to shop in a beautiful store to celebrate their 25th wedding anniversary.  They both liked antiques and pottery, and especially teacups.

Spotting an exceptional cup, they asked "May we see that?  We've never seen a cup quite so beautiful."

As the lady handed it to them, suddenly the teacup spoke, "You don't understand.  I have not always been a a teacup.  There was a time when I was just a lump of red clay.  My master took me and rolled me, pounded and patted me over and over and I yelled out, "don't do that.  I don't like it!  Leave me alone," but he only smiled and gently said, "not yet."

Then WHAM!  I was placed on a spinning wheel and suddenly I was made to suit himself and then he put me in the oven.  I never felt such heat.  I yelled and knocked and pounded at the door.  "Help!  Get me out of here!"  I could see him through the opening and I could read his lips as he shook his head from side to side, "not yet."

When I thought I couldn't bear it another minute, the door opened.  He carefully took me out and put me on the shelf, and I began to cool.  Oh, that felt so good!  "Ah, this is much better," I thought.

but, after I cooled he picked me up and he brushed and painted me all over.  The fumes were horrible.  I thought I would gag.  "Oh, please, stop it, stop," I cried.  He only shook his head and said, "not yet."

Then suddenly he puts me back into the over.  Only it was not like the first one.  This was twice as hot and I just knew I would suffocate.  I begged.  I pleaded.  I screamed.  I cried.  I was convinced I would never make it.  I was ready to give up.  Just then the door opened and he took me out and again placed me on the shelf, where I cooled and waited and waited, wondering, "what's he going to do to me next?"

An hour later he handed me a mirror and said, "Look at yourself."  And I did.  I said, "that's not me.  That couldn't be me. It's beautiful.  I'm beautiful."

Quietly he spoke: "I want you to remember.  I know it hurt to be rolled and pounded and patted, but had I just left you alone, you'd have dried up.  I know it made you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled.  I know it hurt and it was hot and disagreeable in the over, but if I hadn't put you there, you would have cracked.  I know the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened.  You would not have had any color in your life.  If I hadn't put you back in that second over, you wouldn't have survived for long because the hardness would not have held.  Now you are a finished product.  Now you are what i had in mind when I first began with you."

The moral of this story is this:  God knows what He's doing for each of us.  He is the potter, and we are His clay.  He will mold us and make us and expose us to just enough pressures of just the right kinds that we may be made into flawless pieces of work to fulfill His good, pleasing and perfect will.

So when life seems hard, and you are being pounded and patted and pushed almost beyond endurance; when your world seems to be spinning out of control; when you feel like you are in a fiery furnace of trials; when life seems to "stink" this this:  Brew a cup of your favorite tea in your prettiest tea cup, sit down and have a little talk with the Potter.  (Author Unknown)

I am clay.  Sam is clay.  There is a plan, and over the course of our lives, it will take shape.  My friend, David's mom, frequently says "it's hard to understand the big plan" and "oh what I would give for a peek up His sleeve" and I couldn't agree more with her.  I guess we'll just have see this story as it unfolds.  I pray for the strength and courage to enjoy the ride.

And while on that ride, I just might make it my mission to create stylish plastic-rubber-wrap-around glasses for littles ones - they'll come in camo, pink polka dots and many, MANY more.

Friday, November 9, 2012


Sam at a Halloween party, sitting with the
"mystery" gorilla

Tuesday evening....
The girls are in bed.  It's just Sam and I, snuggling on the couch.  Kevin is still at the town hall serving as election judge.  Sam is on my lap, belly to belly and looking up at me with that smile that gets me every time.  He does one of those long "aaaah" sighs and smiles his biggest smile - the kind that reaches his eyes and tugs at my heart.  Then I get the goosebumps.  You know, the kind that nearly bring tears to your eyes.  It was like a surge of love and pride for my precious guy.  After the day he'd endured, it's a miracle that he's got any smile left in him at all.  But the fact that he does, makes me love him that much more.

Right after Sam was born, the staff at our hospital scheduled us to attend a Down Syndrome Clinic at the Coordinated Treatment Center.  Basically, instead of me taking Sam to eight different appointments, to see eight different doctors in eight different locations on eight different days, we go to one place on one day and the appointments and doctors come to us.

That day was Tuesday, and we had to check in at 8:00 am.  For a little guy who's used to sleeping until at least 8:00am, it's been a long morning already.

First stop - cardiology for an echocardiogram.  Sam should have had this within the first few days of his birth, but because the pediatrician believed his heart sounded perfect, we never had the test.  I had asked about it several times since then, but was always told he had a good heart.  I had come to terms with the fact that the doctor was probably right, until I read an article that said "it's extremely important for every newborn with Down syndrome to have an echo."  Why?  Because there is a 50% of major heart complications.  50% is pretty huge - you are either on the good side of a coin or the bad.

The echo took nearly an hour, partly because Sam was getting restless and had no intentions of sitting still.  But also, we discovered that because of the placement of his heart, it was hard to find 'windows' between rib cages to get good pictures of the heart.    In the end, the technician was able to get enough views to conclude that Sam was indeed on the "good" side of the coin.  We also ran an EKG to get a baseline for his charts.

He has a good heart.  This makes me smile.

Next, we were off to meet with an occupational therapist who conducted a Bayley's assessment on Sam.  This basically was a series of tasks to see where Sam was at with his development.  He scored at a 6 month level for his cognition (smarts) and gross motor (rolling, pushing up on arms, sitting), which means he is at the low end of normal and not yet considered delayed.  However, when the OT put a Cheerio in front of him and he didn't grab it, or the shiny red block, or the little yellow duck, he scored at a 4 month 10 day level, meaning that he is "significantly delayed" in his fine motor skills.  At first, I felt very defeated.  I ask myself every day is we're doing enough for Sam for him to achieve, and this felt like a little slap in face saying "no you're not doing enough."  But when I look back now, considering the circumstances, I wouldn't have grabbed that stupid Cheerio either.  He was hungry and exhausted from the echocardiogram.  He was sitting in a Bumbo chair longer than he's used to, so he was getting physically tired.  The last thing on his mind were the Cheerio, block and duck.  He does have some fine motor skills, and it may take a little concentration on them to get them to develop to where they need to be - but it's not something we can't do.  We're on Sam's schedule here, not Bayley's.

Halloween - with Grandma, sisters and cousins
After OT, we met with a nutritionist.  We talked about what Sam eats, how often he eats and stuff like that.  It was pretty basic.  She encouraged me to include meat in his diet.  Have you opened up a fresh can of Gerber Turkey with Gravy lately?  It looks, smells and, I assume, tastes like cat food.  Ugh.  After some calculating, we also determined Sam is in the 89th percentile for height and 87th for weight on the "normal" charts.  They do have adjusted charts for children with Down syndrome, because typically, they grow at a different rate.  Apparently, Sam is in the 100th percentile for both height and weight - meaning that if you were to put Sam in a room with 99 other kids with Down syndrome, he would be the biggest.  Not in the top ten, not the second or third biggest, but THE biggest.  That's my boy!

Speech therapy.  It sounds weird, because he's not exactly spitting out words yet, but it's something that is developing constantly, even at this age.  There's not a whole lot to work on here for now, other than to introduce new foods with different textures so that he has a chance to learn how to manipulate them around his mouth.  In doing this, he will develop the muscles in his mouth, hopefully making learning to talk easier down the road.

We then met a social worker, who provided us with applications for programs that Sam may be eligible for because of his diagnosis.  I struggle, because I have pride, and don't feel that we need any "help" from the state.  But I did learn some interesting things.  For instance, if we feel that we need to be concerned about Sam wandering out of the house in the middle of the night when he gets bigger, we can apply for funds to help install an alarm system in our home.  Or if there are any other improvements that would need to be made to our home to better Sam's life, we can apply for those funds.  It's still hard to think about accepting any help, but the bottom line is that we will want to do everything for Sam that we possibly can - and we are thankful that programs are in place to help people like Sam, both now as a child and later when he's an adult.

We met with an audiologist to test Sam's hearing as well.  He passed the first test (I forget what it was called) where the audiologist measured the pressure in front of and behind the eardrum.  The left ear was great, the right ear was "ok."  In the next test, (I forget the name of this one too...super mom, eh?) sound was administered into both his ears.  His left ear passed, but his right ear had trouble.  The doctor encouraged us to schedule an appointment with an ENT and to have Sam get tubes.  There is such a huge window of language development right now for Sam, and for him to be able to hear things properly is imperative.  It's likely that he has fluid built up, and tubes will help to keep that clear.  We have yet to schedule that appointment.

At some point during one of these visits, Sam's godmother Kim came to join us for the day.  Kevin was unable to attend these appointments because he is an Election Judge, and after all, it is election day.  Kim will tell you that I didn't need her there, that I had it under control.  But I will tell you, it was wonderful to have someone there with me.  Not just to have someone to help hold, feed and change Sam, but someone to keep me strong.  There were a few points throughout the day where I just felt defeated - but having her support there was wonderful, and it helped me get through the day.  In trying to find someone to fill Kevin's shoes for the day, I wanted someone along who would listen as intently as Kevin would have - someone who loved Sam as much as we do.  Kim was the obvious answer.  I am very thankful she could be there with us - especially in the waiting room at the lab...but that story will come a bit later.

Mom's cousin Amber - she's the biggest baby lover EVER!
We got to meet with a pediatrician.  She was fantastic.  She answered so many questions that I had, and still took the time to pick Sam up and snuggle him.  Not many doctors do that these days.  In giving him the once over, she pointed out that he has "chubby boy syndrome" - I won't go into details here, just for the sake of Sam's dignity - but it's sure better than what other doctors have called it - "the magical disappearing penis."  I don't have a penis - but if I did, I'd be mortified if it could "magically disappear."  So, we'll take "chubby boy syndrome" and know that down the road when we're not so chubby, our plumbing will reappear.  The pediatrician also pointed out some really positive things going on with Sam's body - his magnificent heart, his size and strength, among other things.  She said to me "Sam was born with a certain amount of potential, and it's our job to unlock it."  I have taken these words to heart and will live by them.  It makes perfect sense.

Ok, I think I've covered all the stops we made....oh wait, I almost forgot the lab waiting room.  We had left our coats, stroller and diaper bag on the first floor in our "base camp."  Naturally, Sam would choose a waiting room on the second floor to do his business.  And I'm talking DO his business.  Have you ever changed a diaper whereby more of the poop is on the outside of the diaper and smeared down the leg than what's actually inside the diaper?  Yes, this was one of those diapers.  Kim hustled back to the first floor to grab the diaper bag.  In the meantime, I held Sam out away from my body to avoid any more crap being smeared into my favorite bluejeans.  The receptionist brought over a large paper towel to help.  Kim got back and we booked it over to the nearest bathroom.  Guess what's not in the bag?  Guess what's sitting on the bed in our base camp room?  The wet wipes!  No worries, we can just use paper towels and wet them down.  Sure, no problem...until Sam decides to pee every time the towels touch his hind end.  No joke, he peed FOUR times on that changing table - and you're thinking I'm pathetic for not getting the diaper on him quick enough.  But here's the deal - I was down to my last diaper and I had no choice but to soak it up with the paper towels and save the diaper for the hour long ride home.  It took about a dozen paper towels, and the onsie went in the trash because I wasn't carrying that stinky thing around with me - but we got the job done and headed back to the lab.

They drew a LOT of blood, for a CBC and a thyroid screen.  Sam screamed his head off the whole time.  Poor guy, and he didn't even get a sucker when it was over.

The only thing we missed during the day was our eye appointment.  He was supposed to see an optometrist, but after the pediatrician had seen him, she determined it would be better for him to see an opthalmologist.  Sam spends a lot of his day with his eyes crossed, and I'm assuming it's because of a focus thing.  The doctor told me that most infants grow out of this by about three months when their eye muscles get stronger, but Sam's never did, so now we have to see an eye doctor.  That appointment is next week.

Last but not least, Sam got his second dose of the flu shot and we were sent on our way.  We arrived at 8:00am, and left just before 4:00pm.  It was a seriously long day for both of us.  But, I will say it was a great day.  A couple small hurdles were tossed on the track in front of us, but they're not anything we can't leap over and keep on keeping on.   Go Team Sam!