Hard

Things are hard right now.  Hard is okay sometimes.  Hard makes us appreciate those many times we have the opposite (which is still what I actually have even when I think I have it hard—I know this; I really do.)  I guess Hard’s counterpart spoils us a little, doesn’t it?  So, I’m here trying to handle Hard.  Trying to learn from Hard.  Trying to be patient with Hard.

When Moriah was born just over a year ago, I expected Hard in the beginning.  All new territory, so much to learn, the feeding issues . . . oh, those feeding issues!  Add in several other factors, and I knew Hard would be a close companion for a while.  But then Easy showed up for a very pleasant late summer/fall, and I kind of got used to that.  I mean, visiting with Easy was just wonderful!  I honestly wasn’t expecting Hard to return again, especially so soon, and I am surprised to have seen more of Hard in the past six months than the first six.

Although there have been countless blessings and I wouldn’t trade this new path for anything, this journey is worrisome at times (right now), it is beyond my control (try as I might!), it has been exhausting these last months (to put it mildly), and lately I cannot seem to navigate so well.

Hard.

But the God of my journey promises me that

 . . . for those who love God all things work together for good, for those who are called according to his purpose.  Romans 8:28

All things, even the hard, or maybe especially the hard.  So I take a deep breath and remind myself that Hard is not my enemy . . . not even when she shows up unannounced, invites herself in and makes plans to stay indefinitely.

Hard is a blessing in disguise.  Hard forces me to look beyond the fallacy of “my own strength.”  Hard is working for my good, whether it seems like it or not.

A Letter to Moriah on Her First Birthday

My Dearest Moriah,

This past year has flown by, and it is hard to believe that you are one year old already!  You may have noticed that I always say, “It’s hard to believe” when I talk about anyone’s birthday these days, but it really is hard to believe.  It has been an amazing year.  We have made so many memories together, and because of you, I have learned to see life in a whole new way.

I am remembering back to the very beginning.  My pregnancy with you was difficult in some ways, and I was so afraid I would lose you.  Early on, it felt so much like my pregnancies with your two siblings I lost to miscarriage, and I braced myself for the worst, expecting to relive that heartache yet again.  I remember going to the pregnancy center for an ultrasound and being asked if I had any concerns about you.  I did, of course.  I didn’t have morning sickness, and in the past that only ever meant one thing.  One awful, horrible thing.

But I gathered up my courage and tried to be strong as we started the scan.  I wanted to, yet dreaded to look up at the screen, as seeing an empty, lifeless sonogram is a heartwrenching experience.  But you were alive!  There you were, wiggling, and your little heart was beating strong!  As I watched you on the screen, I was overcome with emotion.  I felt my throat tighten as a lump formed, then my eyes brimmed with tears, and before I knew it I was bawling great big heaving, hyperventilating sobs right there on the exam table.

You might think my mind was completely relieved at that point.  I was thrilled to know that you were okay, but just because you were all right at that moment didn’t mean you would continue to be all right.  For various reasons, I still couldn’t quite shake the feeling that something was wrong or was going to go wrong.  It made it difficult to love you with wild abandon, and it was hard for me to feel close to you, fearing I might lose you.  Oh, how I hated that feeling, and I hate even remembering it now.  It wasn’t fair to you, but at the time I didn’t seem to be able to do anything about it.  It’s not like I worried every day that something was going to happen to you, but it was always there in the back of my mind, lingering.

The weeks wore on, we both grew larger, and another ultrasound showed you to be a healthy girl.  I had wanted a second ultrasound halfway through to make sure there was no reason I should not continue planning a long-desired home birth.  I was so happy when everything looked good.  I told Daddy that as long as I was finally going to have my “dream birth” (as far as I could plan it to be, anyway) that I was going to splurge and have a water birth too.

As it got closer to the time for you to be born, we were all so excited to meet you.  We had hoped that last ultrasound would have revealed if you were a little boy or little girl, but we just couldn’t tell for sure.  So it was going to be a very big surprise when you arrived!  Hannah and Elisabeth were earnestly hoping and praying for a baby sister.

Because all your brothers and sisters except Caleb were born later than their due date, I wasn’t too hopeful about you arriving anytime before May 18.  But imagine my surprise when I knew you were going to be born before that date.  We had out-of-town company spending the night, and that’s when my labor started.  It was crazy!  Just imagine how ecstatic your siblings were—the next day was Mother’s Day, dear friends were staying at the house, AND you were going to be born too!  That was almost more excitement than they could handle, and we will surely tell you all about it someday.

When you were born, it was one of the most precious moments of my life.  Not only did I finally get to have my dream birth . . . and it was truly a dream birth . . . but you, dearest one, were blessed by my dream birth as well.

When I held you in my arms and looked at your sweet face, I felt right away there was something extra special about you and began asking my midwife what she knew about Down syndrome.  Though my interactions with anyone with Down syndrome were practically nonexistent and I had never before seen a baby with Down syndrome, I was pretty certain that’s what you had.

Oh, Moriah, you can’t imagine my gratitude at having those moments with you at home.  Home sweet home.  Home . . . where we could cuddle you and love on you and thank God for delivering you safely to our arms.  All my worries during my pregnancy that something would go wrong . . .  those worries were strangely gone.  Because I honestly did not feel like anything did go wrong.  You had arrived, and you were okay.  You had Down syndrome, but you were okay!  God’s grace was abundant, Moriah, because He helped me to see you only as the precious blessing you are.

At that moment, I was grateful for our home birth for reasons entirely different from the ones that compelled to plan such a birth in the first place.  There was no hospital drama.  No lectures about my age, or how many children we already had, or why on earth I hadn’t I had an amnio.  No whispering behind my back, no pitying looks, no medical students coming in to stare at you, and no one telling me anything contrary to the fact that you are a precious child of God, formed by His hand and made in His image, a beautiful little person deserving of life and love . . . just like every baby.

It was all good, Moriah.  There was nothing but love.  And I was so. very. thankful.

Our faith in Jesus Christ is our rock, Moriah, and you will learn a lot more about that as you grow up.  I knew you were exactly who God planned you to be . . . exactly who.  And I know that His works will be displayed in you.  And even though your Down syndrome was a surprise to us, it wasn’t a surprise to God.  There is tremendous comfort in clinging to that truth, Moriah.  Because life is full of surprises and challenges.

Yes, I will tell you there were a few tears, but only a very few, and not even at first.  We didn’t know anything about Down syndrome and there was so much to learn, and it was scary to think of some of the difficulties you might have growing up.  Mommies and daddies don’t ever want their little ones to have to struggle, and that made me a little sad.

Besides being thankful you were born at home, there was one other blessing I was tremendously thankful for at the time, and still am—your brothers and sisters.  You know full well how much they all adore you, since you constantly seem to have somebody’s lips all over your face.  When you were first born, it was a comfort to my heart knowing that you had not only Mommy and Daddy here to love on you, but five big brothers and sisters too—five special people in your life who have been there for you since your birth and will continue to be there for you as you grow.

In those early days I said over and over again how much I was thankful for those two things.  And when I think back to the day you were born—one whole year ago—I am blessed all over again.  I love you, Moriah, and I can’t tell you how many times I have held you in my arms and had tears well up just because I have so much love for you that it overflows.

We have had some hard times too, though, haven’t we?  Mostly for me, I guess.  There is so much to figure out about how best to care for you and how to help you reach your full potential.  Nothing comes quite as easily for you as it did for your brothers and sisters, and we have to fight for each new milestone, don’t we?  It’s exhausting for both of us at times.  Many times.  Things are sometimes complicated, and often there are no easy answers . . . or even any answers.

But your smiles and giggles rejuvenate me, and I know that any sacrifice on my part is worth it.  Because YOU are worth it, my sweet, precious girl!  You have brought untold joy to our family.  You are my delight, and I am so thankful and blessed I get to be your mommy.  Today especially, we celebrate the awesome gift of your life.

With all my love,

Mommy

Making the Most of Awareness

Today is World Down Syndrome Day.  As a mother of a little one with Down syndrome, I am all for a day to promote awareness and acceptance of those with Down syndrome, but sometimes I think we could go about it a little differently.

For instance, Down Syndrome International is inviting everyone across the world to wear “lots of socks” today to raise awareness.  That’s right—brightly colored, mismatched, crazy socks.  Got yours on?  Me neither.

Now, before you call me a fuddy duddy party pooper stick in the mud, allow me to think out loud for a minute.  I just don’t get how socks of any sort can “get people talking about World Down Syndrome Day” (WDSD) in any meaningful way.  To me, this approach is reminiscent of crazy sock day in junior high many years ago, and I really don’t see the point.

Now if silly socks are your thing, then go for it; I won’t hold you back.  :)   If that fits your personality, then have fun with it and strut those socks!  But can I offer another suggestion?  One that we can keep in mind for this and every other day of the year as well?

Down syndrome awareness goes far beyond March 21 and the month of October.  If we’re okay with crazy socks getting people’s attention about Down syndrome and prompting questions about life with our chromosomally enhanced little ones on this day, then why aren’t we okay with that happening more often?

Because, unfortunately, what I sometimes see in my Ds community saddens me, and I think we miss many opportunities for “awareness” that happen in day-to-day life throughout the whole year.

How do we respond when someone asks an innocent question (or several prying ones)?  Stares?  Uses politically incorrect or poorly-worded phrases?  Wonders out loud about the future of our child?  Awkwardly tries too hard to be encouraging?

Because, I’ll tell you, how we respond on these other days of the year carries as much weight (if not more) as what happens on 3/21.  In the 10 months I have been part of the Ds community, I have seen a lot of anger out there.  If we cop an attitude or respond harshly to the curious and ill-informed every other day of the year, no amount of colorful socks on 3/21 can undo the damage WE have done to awareness and acceptance.

I know I’m the naive new kid on the block here, but I think a “niceness” campaign has a lot of potential!  I want every encounter people have with my sweet girl to be positive.  And when the other person reflects back on their interaction with my family, I want to make sure they have nothing but warm feelings toward us, and especially toward my daughter with Ds.

So as for me, I’m putting my energy into being warm and friendly, SMILING at strangers who stare, openly sharing about my daughter with anyone who asks, and overlooking the blunders of those who haven’t learned the correct terminology.

May God give me the grace to do this every day, no matter what I am wearing on my feet. ;)

Who I Am

I am

the best Mother’s Day present my mommy ever received.

I am

the baby sister Elisabeth longed for.

I am

my mother’s delight.

I am

beautiful.

I am

a good excuse for Daddy to sneak in a Saturday nap.

I am

a kiss magnet.

I am

happy and loved.

I am

determined to do new things.

I am

precious.

I am

a blessing to my family.

~

March 21 is World Down Syndrome Day, and this year’s theme is “Who I Am.”

The month (3) and day (21) were chosen to represent trisomy 21, the most common type of Down syndrome, in which the cells of the body contain three copies (instead of the usual two) of the 21st chromosome.

Beautiful Video About Down Syndrome

This is such a beautifully made video that I have to share it.  I guarantee you’ll come away with positive feelings as well as increased confidence in interacting with those who have Down syndrome (or any developmental delay, for that matter.)

Please take a few minutes to watch it and share it with your children.

JUST LIKE YOU — DOWN SYNDROME – explores the life, hopes, challenges and dreams of three kids living with Down syndrome. Elyssa, Rachel and Sam share personal stories to help viewers better understand their condition and why they wish to be treated just like you . . . This film identifies how to handle and accommodate differences while celebrating the many similarities our friends with Down syndrome have with their peers.

Four-Month Milestones

It’s hard to believe our beautiful Moriah has been with us for four months already!  I am just amazed and delighted by all she can do, and I know a lot of you have been praying for her, so I wanted to post an update.

Her abilities and accomplishments are not something I take for granted, as I’m sure I did with my other children.  She is doing amazingly well right now, and we rejoice over every one of the following milestones.

At four months old, Moriah . . .

  • inspires countless ballads of adoration by her older siblings, with cuteness and sweetness being the predominant themes.
  • rolls tummy-to-back and back-to-tummy, which simply astonishes me—quite an accomplishment for a baby with Down syndrome (and therefore low muscle tone) or any baby, for that matter.  None of my others could roll both ways at her age.
  • smiles and coos easily.
  • is making great strides with head control, especially when playing on her tummy.
  • nurses like a champ and has the pudge-rolls to prove it.
  • has the cutest, fluffiest hair, especially right after bath time.
  • unwittingly incites sibling riots, as both big sisters want to hold her ALL THE TIME.
  • says “hi” occasionally.  Yes, both her physical therapist and early intervention specialist have heard her.  Now, you may dispute whether it is intentional or merely a “coo” which happens to sound like an English word, but I’m the mommy and I know what I hear when I hear it.
  • is a master hair grabber/puller.  Hurrah for those fine motor skills, not to mention a flexi-clip to keep my hair out of reach.  ;)
  • continues to look adorable doing the “baby wake-up stretch” in the mornings.
  • had extensive hearing tests this week, and passed them all with flying colors!  Thanks be to God, she has no hearing loss whatsoever!!!!!
  • has enjoyed good health with not even a sniffle.
  • has the most captivating, biggest, bluest eyes I have ever seen.

Can a Person with Down Syndrome Be Beautiful?

Down syndrome.  It’s called a defect, chromosomal error, abnormality, an anomaly.

But I call it a miracle.

Read the rest of Tricia’s post at Life Is Beautiful, and see many beautiful faces . . . including one that’s familiar!

~

Don’t forget to enter my Lilla Rose giveaway at Common Sense Homesteading!

Little Miss Chubs

Gotta love the headband!

Looking at her now, it’s hard to believe that just a few short weeks ago I had very real concerns about Moriah’s minimal intake, lack of weight gain and my rapidly dwindling milk supply.  You’d never know that to look at her now.  She had a check-up yesterday, and when the scale read 9 lb. 9 oz. I laughed for joy, gave her a big squeeze and told her she was doing super.  Her thighs tell the story—she’s been making up for lost time.

And those cheeks!  Well, as you can see, they just invite constant kisses, and we have a hard time prying our lips off her sweet, smoochable face.  Periodically, I have to declare a kiss time-out for the little ones when Moriah’s been smothered with their affection for too long.  Let the poor girl get some fresh air once in a while, you know?

Moriah is doing great and amazes me with her strength.  Unless she’s sleeping or nearly so, she is all wiggles and has a decent degree of head/neck control for her age.  When on her tummy, she can even pick up her head and turn it from side to side.  Low muscle tone is an aspect of Down syndrome, but physically, she’s surpassed my expectations, and I’m so pleased with how well she’s doing.

Nap time!

What a blessing it is to have helpers, and it gives the big boys their turn for snuggle time.

Daddy’s turn.

Enjoying Holland

Many of you may already be familiar with Emily Perl Kingsley’s inspiring essay Welcome to Holland.  Written in 1987, it’s been around for awhile.  Still, I don’t recall ever having read it or even having heard of it until after our flight had landed.

If you haven’t seen it, the rest of this post won’t make as much sense unless you read it first.  And while you may never get to go to Holland in the sense she describes, I think this insightful essay has many applications since we all have unexpected destinations in life.  Read it—it’ll just take a minute—and it may help you enjoy your own journey more.

Several days ago I was relaying the gist of the essay to my children, explaining the analogy to my youngest ones.  I summed up by saying how silly it would be to miss out on the beauties of Holland by being hung up on not getting to go to Italy.  They agreed.  Imagine how my heart nearly burst with emotion and I laughed out loud when Caleb piped up, “Yeah, ’cause you’ve already been to Italy five times!”

Still, like most families planning a trip, we would have chosen Italy over Holland.  We knew nothing of Holland, so we wouldn’t have felt as secure going there.  Italy would have seemed safer.  And while Italy’s terrain isn’t always easy, at least it’s familiar.  We’ve traveled the roads.  We know the landmarks.

But our Travel Agent had other plans and, in fact, He booked us this trip to Holland long ago.  We didn’t end up here by accident.  Although Holland was our unexpected destination, our arrival was no mistake.

We’ve met lots of nice folks here in Holland—beautiful families we’d have never known if we had gone to Italy.  And most of them have been here longer than we have, so help is always around the corner if we need some guidance.  And, of course, our all-knowing Travel Agent is on call 24/7.

It’s hard to believe that years ago we had absolutely no interest in ever visiting Italy, let alone Holland.  But we have an amazing Travel Agent who knows us better than we know ourselves.  He knows what we truly want, what we truly need, and what is truly best.

How did he know how much we’d love going to Italy time and again, or that a visit to Holland would be just perfect this time?

Three Weeks Old

It’s been a crazy 3+ weeks since our Moriah was born.  I’ll spare you the details, but early on, nursing her was terribly, terribly difficult for a number of reasons, and I wondered how we’d ever make it through those tortuous, tear-filled trials.  I am happy to report that things have been steadily improving, and she is now gaining weight.

I have been working hard getting her to nurse well, as those same muscles exercised in nursing will be used for speech down the road.  And improving facial muscle tone for proper speech articulation is especially crucial in babies with Down syndrome.  Still, when she is too tired or unable to nurse well, I give her expressed milk in a bottle, which is so much easier for her.  All of this takes a fair amount of time, but my milk supply and her feedings are top priority right now, and I am thrilled with the progress we have been making.

As you can imagine, Google has been my best friend since Moriah’s birth.  There is so much to learn, and thankfully, there is plenty of information available out there.  I feel tremendously blessed and well-networked already.  I’ve linked up with other moms who are friends or friends of friends, or even friends of strangers—all who are all farther along on this journey we’re now on—to learn how best to care for our new daughter.

It’s all interesting information to me right now, as I knew virtually nothing about Down syndrome except the genetics of it prior to Moriah’s birth.  I learned that Down syndrome is named for John Langdon Down, an English physician.  It was he who first noted the distinct set of common features associated with the condition, back in 1866.

Other facts have been heavier on my heart.  I learned that in 1929 the average life expectancy of a person with Down syndrome was only nine years.  By the 1970s that age increased to 25 years, still far short of full potential.  Today, thanks to medical advances and the tremendous power of a LOVING FAMILY, that number is 55+.

All that, of course, is provided that one survives the womb, which is a most dangerous place to be if you happen to have Down syndrome.  And that brings me to the most sobering, staggering, sorrowful statistic of all—92% of those prenatally diagnosed with Down syndrome do not survive the womb.  May God have mercy on us.

So my mind has been going back and forth pondering two opposite views.  The above paragraph, with all its ugly implications vs. everything I read from parents of a child with Down syndrome—parents who have learned that an extra 21st chromosome is not the end of the world, that having a special-needs child has given them unspeakable joy and taught them profound life lessons and molded them into better people because of it.

It’s been a range of emotions for me—shocked and angry at the immensity of the devaluation of life and God’s blessing of children, but also hopeful and encouraged for the future because of medical advances, the efforts of advocacy groups, and the hope-filled, joy-filled testimonies I’ve read from countless parents of children with Down syndrome.

I know our family is on an amazing journey with Moriah, and we’re so thankful to have her with us.

Hannah, my baby-holder extraordinaire

My favorite way to spend an hour