Merry Christmas!

I've had a hard time getting into Christmas this year, but you'd never know it by looking through the photo album on my phone!  It's loaded with pictures that capture all of the holly, jolly (and folly) that Christmas with little ones brings.  Afterall, I may not be into it, but they sure are!  

We searched the tree farm for our Christmas tree:

The kids pleaded their case to Santa. (Well, 5 out of 6 of the kids have.  Mason won't even look at him.)  Here's jolly old St Nick with Mason's stand-in/body-double, cousin George: 

The older four entertained us at their school Christmas program:

Everyone counted down the days with a daily Advent treat and saying our Advent prayers at dinner:

Our yearly visitor, Jingle the Elf, sometimes surprised us!  (that is, when he remembered to move from his spot the day before!  He's been kinda very lazy this year......)

And we even squeezed in some long winter's naps between family gatherings:

But of all of the pictures I have taken this Christmas season, this picture means the most to me:

The circle of life  My dad is facing his first Christmas (since 1944!) without Mom.  Looking at him breaks my heart, because I know part of his is gone. And yet, in his arms he holds a bit of their legacy, their 25th grandchild, our Annie.   A little part of Mom came back to us and provided some light while we were in the midst of darkness and grief.

Kinda reminds me of another little baby we celebrate.....

This year, amidst all of the hustle and bustle this time of year brings, I have found a new peace.  Above all, I'm grateful for life.  For my Mom's life and for Annie's, and all of my children's, life.   Two souls who crossed paths in Heaven.  Two souls who have blessed my life, defined my year and re-awakened my faith.   

 

  

 

From our family to yours:

 

MERRY CHRISTMAS! 

Do You See What I See?

    As I’ve already shared, when we learned of Annie’s diagnosis before she was born, I saw her as the world might “see” her.   I saw a child who would look a little different and who would have physical and mental delays.   I insisted to God that I could not handle this.   But then we met her, and instantly I saw her as I should; as her mother.   She was, she is, beautiful.   Those almond-shaped eyes that I imagined would set her apart?  Well they do, but in a wonderful way. They are my favorite feature on her! I could stare into those eyes all day, because I believe her eyes lead right into her soul; A soul so pure, and so lovely, and so untouched by the very “world” that I, her own mother, have fallen prey to.

     I look at Annie now, and most of the time I don’t “see” her Down Syndrome. I see and know a baby just like any other 1-month old baby, and I wouldn't change a thing about her.  Not one. single. chromosome.  She’s starting to smile at us, loves to eat (and is still eating heartily!), poops (a lot!), and sleeps well (has even slept through the night on occasion!)

 

Really, Mom?  A bow bigger than my head??

 

    Before Annie was born, Matt and I talked about how/if we would tell our kids about her having Down Syndrome (our oldest is only 10). They knew about her heart condition, and we prayed for her as a family, but we hadn’t told them about DS.  I didn’t want to instill in them those very same pre-conceived ideas that had already gripped me.  We decided that in this situation, it would be best to be “reactive” rather than “proactive.”  In other words, we would cross that bridge when we came to it. We (at least I) tend to underestimate kids sometimes.  Where we adults agonize, and analyze, and worry about “what ifs,” they just live in the moment.  I learned a great lesson the first time they visited with their sister.  There was such pure love and happiness! (which I’m going to enjoy now, because it will no doubt dissolve as soon as she starts “bothering” them like the rest do!)  Not one of them seemed to notice any “differences” about her.   They don't see her slanted eyes or feel her low muscle tone….they just see Annie.  She's already one of the gang!!

    Charlie was with us when a doctor happened to mention Down Syndrome.  After the doctor left he asked us, “Does Annie have Down Syndrome?”  My heart sank as I looked at Matt and thought, “Here we go… the moment we’ve been anticipating.” Matt answered him, “Yes. Do you know what that means?” Charlie replied, “Does that mean she’s like Isaac?  He is soooo cute! " (Isaac is a little boy with DS who is on their Cross Country team)  And that was the end of the conversation.  That was enough for him.  It didn’t change his mind about Annie, or scare him as it had scared us.  Oh, what we can learn from our children!  

Matthew 18: 3-5- Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.  And whoever welcomes one such child in my name welcomes me.

   

    Now I’m not naive either.  As “Pollyanna” as this all might sound--the peace that we’ve found, and the “normalcy” that we still live--I realize that she is only a month old.  Differences will become more and more apparent as she gets older. We will have to cross that bridge with our kids as their peers begin to ask about Annie.  I fully expect that the feelings of fear and sadness and pity may again rear their ugly heads as we begin to see children her age, or younger, start to surpass her in milestones like sitting, crawling, walking, talking, learning……….. In fact, they already have crept in. The other night I was in Cleveland for a performance of “Wicked,” and there was a young man with Down Syndrome seated several seats away from me in the theatre.  I couldn’t see him, but would occasionally hear him yell out something inaudible, and I noticed him rocking out of the corner of my eye.  I immediately thought ahead to Annie’s future, and again pleaded, “Really God, me?? This is WAY bigger than me!” (And in case you haven’t seen me lately, I’m pretty darn big! Little Miss 6-pounder left me with a lot of baggage!)

 

But then, something wonderful happened.....

 

    After intermission, this young man sat in the seat right next to me.  I turned to look at him and saw his beautiful face and that infectious smile that is almost a trademark of people with Down Syndrome.  He continued with the rocking and occasional moans or shouting out (at appropriate times, mind you. That show is a riot!)  And then he reached over and grabbed my hand and he held it. I truly felt like it was God Himself who was holding my hand and saying, “Maggie, you’ve got this, because I’ve got you!”

 

Ahhhh, in His infinite wisdom, He is slowly teaching this blind Mama to see….

*****************************************************************

P.S....Annie continues to show no signs of heart failure! Her color is great, her breathing is normal, and she was up 5 oz. last week! Grow Annie, grow!

P.P.S....She was baptized this weekend!  She's now an official member of the Catholic Church and official Child of God!  (Although was there really any doubt?)

 

 

Hello World!

Here she is, fresh out!  Welcome Miss Anne Marie Viertlbeck! 
And she was as pink as pink could be...No baby blues here! She was breathing well and no NICU (yet!)
I had about 5 minutes with her before some complications began to set in with me, but she was well loved all night by her Daddy and Grandma and Papa V...

By the next morning, Annie was taken to the NICU because she was having difficulty eating (not uncommon in baby's with both DS and ASVD defects)  Some take a little longer to get the sucking action down, and because of her weaker heart, everything takes a lot more effort, making her tire very easily.  She was taking bottles well, but got tired very quickly so they had to put in a feeding tube to supplement her.  Because I was still recovering from surgery the night before, I was unable to see her until the next night!  That was so hard!!

A feeding tube wasn't going to keep this girl from smiling!  ;)


If ever I wished for a super power, it was for the ability to bi-locate the week Annie was in the NICU.  When I was there with her, I felt I needed to be home with the other kids, and while at home, we just didn't feel complete!  It was so hard leaving the hospital without her, and so tiring running back and forth.  Matt and I spent the bulk of the day with Annie, and usually went home for the evening around supper time.  We sure appreciated all of the visitors to help pass the time, and the friends and family helping with the kids (and meals) back home.  I can't imagine how these parents of preemies, who are sometimes there for months, do it!   

She had two echochardiograms while in the NICU, and everything looked good for the time being.  No signs of distress or heart failure, praise God!  Her cardiologist predicts surgery will be sometime around February or March.  This NICU stay will probably seem like a walk in the park compared to that.  I don't even want to think about it right now.....right now, we're just enjoying lovin' on her!

\

She had lots of visitors, including big brother Max!

Big Brother, Jack



Big Brother, Charlie



Big Sister, Emma





Our Pastor and friend, Father Keith Stripe.  Father was SO wonderful to our family, especially to Dad, as my Mom was dying.  He took a special liking to Annie too, and visited her twice while she was in the NICU.  He is a gift to our parish and to our family...such a good man! 

I mentioned earlier that some family and friends prayed several Novenas for Annie...  I also wore a St Gerard (Patron Saint of Mothers) and St. Anne medal every day from the time we learned of her heart troubles. 
Here she is wearing the saints who prayed for this angel!  ;)

 

 

Gradually Annie built up her endurance while eating and needed the tube less and less.  After a week she was tube free and released.  YAY!  She was coming home!!! 

Brace yourself, baby girl..... 

 



After spending one week in the NICU, Annie was HOME!  The Dirty 1/2 Dozen was together at last!
 

And here's Mason!  Littlest big brother wasn't allowed to visit the NICU (only siblings 3 and older), so he had a great surprise when we showed up with "Baby Annie!"  He loves loves loves her...for about a minute.  Then he has had enough and moves on to something much more exciting.  ;)

 

So bright eyed and happy to be home!!   

Now, over three weeks later, Annie has developed a hearty appetite just like her Mama and Dad! She eats like a true Suter/Viertlbeck, but, unlike that combo, she's having some trouble gaining weight (also not uncommon as her heart works overtime, burning calories at a faster rate than "typical" babies). She is on a high calorie formula to help....a baby milkshake if you will. Can you imagine? Being forced to eat higher calorie foods?  OMG!


 



Announcing Annie

So yeah, I have a ROCKSTAR cervix!  After all of the fuss, here I was quickly approaching my due date with no real signs of labor.  Perhaps the bedrest helped, or maybe the daily doses of Progesterone and Procardia did the trick.  Or maybe Annie could hear what she was going to be surrounded with and said, "No WAY am I going out there!"  Matt is utterly convinced it has always been this way, and that all of this new-fangled technology does nothing but create alarmists out of us!  Whatever it was, my new sedentary lifestyle meant that I got out of an entire summer of mowing the lawn (Whoo-hoo!), packed on the most pounds of any of my pregnancies (Boo-hoo!), and ended up being induced.  Annie was being evicted from her quiet place, and we were finally going to meet this little lady, who had already begun to change our lives.
    With the grieving stage behind me, I had accepted the fact that Annie had Down Syndrome and a heart defect and was ready to move forward.  I had done a lot of research into what to expect at birth due to both.  Because of the ASVD defect, it was highly possible she would be blue from a lack of oxygen, and might be sent to the NICU until she was stable.  Some classic physical features of Down Syndrome include: an upward slant to the eyes, low muscle tone, flat facial features with a small nose (a missing nasal bone was one of her ultrasound markers), small ears....  Annie has nearly all of them, and she's a beauty! :)
     To be totally honest, as ready as I finally felt, I still, in my vain humanity, clung to the anxiety over what others, especially those who didn't know yet, would say or think.  Already a mama-grizzly, I wanted nothing but the usual celebration at her birth. No pity.  It may sound silly that I even thought this way, but in this age of social media and status updates, I wondered, "How do we announce something like this?"  That darn elephant still loomed!!  Don't get me wrong, I was in no way ashamed of Annie, but I wanted people to know her first, not her diagnosis.   I wrote the following to our family, friends and fellow prayer warriors first:
 
    "For this child we have prayed, and the Lord has answered our prayer." -1Samuel,
1:27  (This has become one of my favorite verses!)

    Sweet Annie is here!  Our little lady, Anne Marie Viertlbeck (named after her 2
beautiful Grandmas, Marilyn Ann and Patricia Marie) arrived on November 4 at 5:38 p.m. weighing in at 6 lbs and 13 oz. 
    I'm still in awe of the amount of support and love we received from each of you
throughout this pregnancy.  Your prayers, your love, your friendship, your
concern and your help literally sustained us through a very tough few
months..... I like to think of you all as "Annie's Army!"
    Despite being born with an extra chromosome (her "designer genes") and a heart
defect (which we will hopefully have mended in no time!), to us Annie is sheer
perfection!  Please, please don't pity us....CELEBRATE with us!  She is LIFE in
all it's beautiful, baby-girl glory, and will no doubt teach this family about
unconditional love, acceptance, patience, and that wonderful childhood innocence
that most of us seem to lose along the way......
    I admittedly spent a lot of time during this pregnancy consumed with fear,
feeling overwhelmed and anxious about the future, but already I've asked myself,
"What was so scary??"  Yes, Annie will bring with her some unique, sometimes
big, challenges, but we accept them and will grow from them, fully confident
that God will equip us on this new journey.  (and btw, show me a kid who doesn't
bring a challenge at some point in their life, and I'll trade you one of ours! 
Lol).
    Instead, please pray for the nearly 90% of mothers (yes, 90!) who find out about
their baby's "diagnosis" during pregnancy (just like we did), yet make the
choice to terminate.  They let their fear and a worldly idea of "perfection"
win, and choose not to meet their "Annie."  It makes me so sad for them.  If
only they realized what they're giving up!!
    Look at this face and tell me she wasn't worthy of life??? 

     And please pray for all of her doctors and therapists, present and future, who will be treating her. 
   
    May God bless you all for the love and generosity you have bestowed on our
family.  I promise you, we will never, ever forget it......and nor will He.  ;)

"The pain that you've been feeling, can't compare to the joy that's coming!"
-Romans 8:18.  (another favorite....and so prophetic!!  We are FULL of joy!!!)

Thanks be to God!
Maggie & Matt

My Agony in the Garden

"Ok Lord....I admit it!  I surrender!  Mercy!  Those people who bombard me in the grocery store?  They're right!  I DO have my hands full already.  I can't possibly parent a child with special needs.  I do not have it in me.  You have mistaken me for someone much more patient, kind, open-minded, compassionate....  I get frustrated doing homework with my "typical" kids.  I. CAN'T. DO. THIS!  I don't want to do this!  Not me!  Why me?  I don't want to be that family....the family with the "Down's" kid.  Pitied.  Stared at.  I can't bear the heartache of seeing my child struggle, or made fun of, or left out.  I was so excited for Emma to have a sister.  Their relationship is going to be nothing like I had envisioned it would be.  Poor Emma.  Poor Annie.  Poor ME!  What's going to happen to her when Matt and I die?  What if she doesn't even survive her heart surgery?  I just lost my Mom, and now this??  Really?  You bless my life abundantly up until now, free from any real suffering, and then BAM! 2 curveballs within a month?  FATHER, PLEASE, TAKE THIS CUP FROM ME!!!!!"
    When we first learned of Annie's heart defect and the possiblity of Down Syndrome (our odds were 1:2), we declined an amniocentisis which would tell us for sure.  We didn't want to risk the baby any more than she already was when it would make no difference in how, or if, we proceeded with the pregnancy.  But, call it mother's intuition, I just knew it to be true in my heart.  And the way the doctors talked to us, as if our baby was broken or defective, I knew they were pretty confident too.  I was sure I was feeling exactly like Christ was feeling during His moment of agony in the Garden. It was so painful and gut-wrenching.  Matt hurt too.   I remember him looking over at me at one point, his voice quivering, and saying, "It is what it is, right?  We will love her."  Even before we had children, it was always understood that we would accept anything God gave us, the good and the bad.  It's what marriage is built on afterall.  You know, the 'ol "God won't give you any more than you can handle" greeting card sentiment?  It sounds so beautiful and so confident and so easy.  Now, here we were, being called to surrender our will to Thy will be done, and to practice what we've always preached, and suddenly there was such discord.  Is this really happening?  He's nuts if He thinks we can handle this! 
    We met with the cardiologist and he did an echocardiogram of Annie's heart (truly amazing, actually), and thoroughly explained her defect to us.  It's as if he were speaking Chinese with a Russian accent though, because I heard nothing.  All I saw, literally, was my baby's broken heart on the monitor, and all I felt was my own.  Matt comprehended a little more and translated for me:  ASVD defect.....2 holes in her heart....Won't close on their own....Definite open heart surgery, probably around 3 months of age.....Expect heart failure to set in.....Difficulty breathing.... Difficulty eating....Will likely turn blue....Lasix.....Digoxin...  These were some of the very same problems and medications my mother had before she died, only she was 84!  He was talking about our baby girl, who wasn't even born yet!  My God, My God!
    Matt left to go home to the kids for the night (I was still in the hospital on bedrest) and I don't think I ever closed my eyes.  I cried, I tossed and turned, I Googled all sorts of things I shouldn't have (note to self and to all: Google is not your friend!) and I cried some more.  I was not ready for a lot people to know.  I couldn't comprehend it all myself, and I certainly didn't want to talk about it.  An elephant had walked into the room- into our life-that day.  What would people say?  What would they not say?   I could hear the thoughts, "If only they would have stopped having babies while they were ahead....Poor Matt and Maggie....." 
    In my distress, I sent an email to a select few: my Dad, my brothers and sisters, my mother-in-law, and a few close friends, explaining our news and seeking their prayers.  I also gave Mom her first Heavenly assignment, to watch over her granddaughter.  What began with these first few prayer warriors eventually grew into an all-out army over the next two months. We soon had people we didn't even know praying for us! 
     I isolated myself for a while because I didn't want people asking me how my pregnancy was going, and have to cheerfully pretend that everything was wonderful.  Instead, consumed with worry and anxiety, I scrutinized every ultrasound picture I had of Annie (and I had a lot!) over and over, looking for some "clue" into who she was.  I read countless articles about ASVD defects, children with Down Syndrome and all of their expected delays, open heart surgery in infants.....But, unlike Christ, who was abandoned by His friends in His hour of agony, mine we there, steadily praying for Annie, for me, and for our family.  They never once "fell asleep" on me.
   As shameful as it is for me to admit this, my prayers during the first couple of weeks were for God to change Annie. I pleaded with Him to free her from the heart defect and to have her born without Down Syndrome, because I didn't think I could handle it.  But slowly, I believe through His grace and the support of others, I began to pray for the change to be made in me instead, and for Him to change my heart, not Annie's.  Afterall, if this is how God designed her, why would I argue with the Master Artist?
         

Two Steps Back

Before I can move forward with present day, I need to go back a bit.  Let's start at the beginning......Not at the beginning of my life (as exciting as it is! Ha!), but at the beginning of Annie's, our #6.
    We waited a little longer than usual to tell everyone about this pregnancy.  I marvel at what some people will say when it comes to one's children, as if they have a personal or financial stake in their upbringing.  We have found that when you announce Baby #1 or Baby #2, people are generally very happy and excited!   #3 is pushing it (unless, of course, you're going for "that boy" or "that girl" after having 2 of the same gender)  That was our case with our Emma, #3.  Then surely, everyone thought, we were done, right?  Afterall, we "had our girl," and "our hands were full" (a comment heard during every trip to the grocery store.  every. single. one.)  By #4 and #5 it's not uncommon to be asked if they are all from the same father (true story!), or if you have figured out how this works...So, weary of the comments, we kept the news of our wonderful blessing a secret for almost 2 months before revealing it to our town criers: Charlie, Jack, Emma, Max and Mason. 
    From the start, this pregnancy felt just a little different.  I chalked it up to the advanced maternal age so boldly inscribed at the top of my chart.  My body felt like I'd been hit by a Mack truck!  How in the world did my mom do this 9 times?  How has Michelle Duggar done it 19 times and counting???
    I found out we were having a girl the week of Father's Day (lucky for the boys, because had it been another boy, Emma and I were planning on high-tailing it out of here!  ha!), and surprised Matt with the announcement as his Father's Day gift.  Even he sighed in relief.  The thought of another lightsaber weilding mad-man joining this crew even scared big, strong Daddy!  We named her Julia.  I loved the name, and Matt was willing to compromise.  He liked Julianne, but that just made me think of potatoes!  (Actually, I thought of food all the time.  I am a Suter, and I was pregnant...a bad, bad combination.)
    During my 20-week scan, it was discovered that my cervix was already thinning and measuring at a centimeter.  My doctor was very concerned, sent me over the the hospital for a more thorough exam, and I was put on "moderate bedrest" indefinitely.  This meant no more running, walking, cutting the grass (darn it!), trips to the zoo (because the ramp at the Toledo Zoo is enough to put even non-pregnant women into labor!), and so on.  I was put on daily Progesterone suppositories (awesome!), Procardia to stop contractions, and told to "lay low." I asked my doctor, who had already delivered #'s 1-5, if he remembered what I had back at home??  Lay-low?  They'll destroy me!
    My family and friends really stepped in to help me from going stir-crazy!  People brought us meals, took the kids on playdates, and offered help wherever needed.  I tried (kind of) to follow doctor's orders, and had daily brawls with my cervix: "Really Cervix?  I've sailed through 5 pregnancies with no mention of this, and you choose to peter out now?  Did someone tell you I was of advanced maternal age?  I'm only 38!!" 
    Over July 4th weekend I put all "bedrest" to bed and we hosted the Suter Family (Team Suter!) Reunion at our house, the house that until 2 years prior, my Mom and Dad had lived in for 40 years.  All nine of us were home, and (nearly) all of the 24 grandchildren and 19 great-grandchildren were there. It was a wonderful weekend celebrating our family!  And it turned out to be the last weekend we would all be together with our Mom.  Three weeks later, everyone was back again as we laid her to rest.  Her health been going downhill a good part of the year, and her fight was over.  Here I was, about to become a mother again, and I had to say good-bye to my own mother.  We will all be forever grateful for that reunion.  Someday soon I will tell you more about my beautiful, wonderful Mom....  I miss her everyday.
    Three weeks after Mom's funeral, still numb with grief, I was sent back to the hospital because my cervix had thinned even more.  I was to be on complete bedrest for a few days (Um, "Aint nobody got time for that!"), injected with steroids to hasten the baby's lung development in the event of preterm delivery (I was 29 weeks pregnant at this point), and was sent down for a Level II ultrasound the following day.  Oh Good!  Another peek at Anne!  (Yes, Julia had now become Anne.)  When Mom died we wanted a way to honor her, and Anne was her middle name.  It seemed a perfect way!  Little did I know that a whole lot more than her name was about to change.....
    I was alone that morning.  Matt was home with the kids and I saw no reason he had to come in for this.  The ultrasound seemed to be taking forever, but I didn't think too much of it.  I never grow tired of seeing my babies swimming away in their "quiet place," and I reminded her to enjoy it now because our house is anything but quiet!  Nearly an hour into it, the nurse told me she had to check on something and would be right back.  She came back with a man, who I later learned was a pediatric cardiologist, and he began to scan me again.  Their silence was chilling.  When he finally spoke, he asked a question I will never forget: "Did you have the First Trimester Screen?  (a test to determine a likelihood of any chromosonal defects)  "Yes, I had and I was told everything was fine.  Why?" I answered.  "I'm afraid that your baby has a heart defect (big punch in the gut), and this particular defect, as well as some other markers we see on your baby, highly coincides with Down Syndrome." (Knock-out.)   My heart broke that day too.   

Here Goes.

Here I am, entering the blogging world, kicking and screaming (oh wait, that's actually the kids kicking and screaming.  Any one of them.  At any given time.) 

Yes, I have 6 children....one is brand new!  I can't wait for you to meet her, and her brothers and sister, through this blog.  Yes, I know what causes this (you oughta try it!)  And Yes, I'm crazy........about my family!  About big families in general!  And why wouldn't I be?  Were it not for a certain big family (Team Suter!!!), I would not be here.  It was a LONG way to get to #9, but I'm sure glad Mom and Dad went for it!    And I'm crazy about the person with whom I'm co-creating all of these beautiful lives (yes, God), but also my husband Matt, who you will also meet along the way.....

So, besides being a "freak of nature" and having 6 children, within 10 years, what is it that is so fascinating about my life that people would want to read about it??  Absolutely nothing.  We just go about our business, doing the best we can, raising little saints. (I'm not being sarcastic here.  That's really what we're doing! It's what all parents are called to do, really...to raise little saints!)

But we faced some challenges over the past few months that propelled me to reach out to our close personal friends and ever-faithful family.  I was rattled.  I was shaken.  My usual "happy-go-lucky" self was not so happy.  I needed help, so I went where I knew I could find it.  And I wanted to go no further.  I didn't need the whole world to know, just MY own little world.  And as always, our family, friends and faith community were amazingly supportive, and lifted me up through their love, prayer and service until I found joy again.  And then, on November 4, I met pure Joy, who we named "Annie."  Oh my gosh, wait til you meet her. 

And it's Annie who has inspired me to start this blog (and her cousins Jamie, Cristin, Casey; her Aunt Mary; our friend Barbra....)  All these little voices that kept saying, "Maybe you can help someone else who is experiencing the same thing!" 

So, I'm going to give it my best shot.  For Annie.



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