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.