Two Hearts...

Today was just another day.  Expectantly looking for big and small miracles, but reality was a rerun of fixing breakfast, cutting food into many tiny pieces, picking up after the kids, comforting after head bonks and loud cries, running searching for them and terrified of what they might be doing when it was too quiet.

Then they went down for their naps and finally, there was a brief respite.

Until Vallyn started crying and screaming in her sleep. 

I rushed to her room and she looked frightened and disoriented.  So I picked her up out of bed and she clung to me like a koala as I tried to settle her back down.  Not wanting to put her down, I sat in the rocking chair in her room and she almost instantly fell back to sleep on my chest.  I knew if I put her in bed she would wake up and I knew she was so tired, so I sat there.  And tried to doze myself.  But that wasn’t working. 

So I looked around her room, as I always do. 

And my gaze settled on the tree my brother painted for her, as it always does.

And I was drawn to the two hearts he painted on the trunk, as I always am.

And I just sat there, looking at those two hearts. 

 

 

And feeling our two hearts so close together, beating alongside one another.

Remembering how four years ago, that same little heart was beating inside my belly. 

We were still trying to absorb the news that she had Down syndrome when we went for our first fetal echocardiogram.

The doctor looked at the images and came in and said all kinds of scary things that could be happening, but it boiled down to her having an enlarged aorta. 

What did this mean???

It meant something was wrong with my sweet baby’s heart. 

It could mean nothing. 

It could mean she would have to go straight to surgery after being born. 

Or it could mean she wouldn’t live very long.

We just didn’t know.

So I cried, and prayed, and cried, and prayed some more.  And cried some more.

And every day, I imagined her aorta getting smaller, and her heart getting bigger, until they matched up and were the right size for each other. 

And we got a miracle, because when she was born her aorta was no longer enlarged.

We have still had scary and stressful times related to her heart over the years. 

She ended up having heart surgery at five weeks old because one of her fetal blood vessels did not close, but thank God she sailed through that and felt so much better afterwards.

And she did have a sizeable hole in her heart, but just as before I prayed and imagined it closing. 

And we were granted another miracle and the hole did eventually close on it's own.

I don’t know how or why we were so fortunate, but I’m grateful every day.

For her first birthday, my brother did a painting for her that says “Shine on, little strong heart”.

 

And I cried tears of joy when we saw this, because she does.

She shines on.

No matter what happens. 

She is so brave. 

She puts up with so much crap every day.

Being tired.  Having low tone.  Wearing orthotics.  And glasses. 

And sleeping with an oxygen tube taped to her face every nap and every night.

Yet she shines,

oh how she shines!!!

Bringing us such joy, every day – even when she’s being a total stinker.

So yes – today was an ordinary, routine, ho-hum day.

Except it wasn’t.

Because I got to snuggle for a whole 45 minutes feeling my sweet angel’s heart beat with mine.

Because I got to remember how grateful I was to finally hold her in my arms for the first time after she was born, and feel her heart beat next to mine on the outside.

 

(That's still one of my all-time favorite pictures)

And as we sat there together and I stared at the tree and I stared at her and tears ran down my face,

I slowly leaned down to kiss her cheek (because I simply couldn’t help myself!)

And the spell was broken.

Quick as a flash - her eyes flew open, she ripped off her oxygen cannula, smiled at me, wiped her nose on my shirt, gave me a kiss on the cheek, and jumped down from my lap to go wreak havoc upon her stuffed animals.

And I smiled at my darling little miracle, and went off to fold some more laundry.

 

 

Three Years Ago...

This morning I was lying in bed, snuggling with my sweet Vallyn. (I brought her into bed with me because I was just not ready to get up yet!)  We are at my parents’ house celebrating Christmas with my family.  I was tickling Vallyn when it struck me hard: – three years ago I had been lying in this same bed, but I didn’t know yet that it was ‘D Day’.  The day I got the phone call that rocked my world and changed my life forever. 


Diagnosis Day.


December 29, 2011.


I had been up in the mountains with my family and we had just celebrated Christmas together.  It was a regular morning: I’d gotten up, had breakfast and was hanging out.  Jason had gone into work down in Denver but was coming back up that evening.  The phone rang and I didn’t recognize the number but answered anyway.  It was our perinatologist.  I was surprised to hear from her.  I mean, not really, because I had taken the MaterniT-21 test the week before, but I thought it would take longer for the results to come back.  Apparently not. 


I still can’t remember exactly what transpired.  I answered, we greeted each other, she said “Your test results are back” or something like that.  I remember clearly though she said “It’s positive.”  Then she paused.  In that pause somehow my mind said “Oh, it’s positive.  Positive is good.  The last test I had taken that was positive had been very good!

But then she said “I’m so sorry.”


And I realized.  Positive means my baby girl has Down Syndrome.  I don’t recall exactly what happened next.  I may have cried out or screamed “No!  My baby!”  My sister and mom came running into the room.  Then my dad.  The doctor was saying things like “I have some resources for you and we can do an amniocentesis to be certain…” but I only half heard her.  I fell to the floor, crying, shouting.  I vaguely remember eventually thanking her for calling and hanging up the phone. 


I admit I had some terrible thoughts.  I am still ashamed to this day of my thoughts – the memory of them breaks my heart into a million pieces.  But I was terrified.  I thought my life was over.  I had never known anyone with Down syndrome.  I thought my baby girl would never have much of a life.  I don’t know what I thought exactly was going to happen but in no way did I think it would be good.  I felt as though my baby – at least the one I had thought I was going to have, the one I had imagined in my mind for 22 weeks – had died, and that I could just curl up and die too. 


Boy, was I ever wrong. 


Looking back, what I wish the very most was that at that moment of receiving the news about Vallyn, that I had seen a brief flash forward to what this morning would be like and feel like. 


I WISH I COULD HAVE SEEN TODAY. 


THIS morning. 


Because I still would have cried. 


But any tears I shed would have been of joy. 


If only I could have seen myself, lying in this bed, holding this precious angel in my arms, what our life would be together.  Giggling with her.  Smiling.  Hugging and kissing her.  Getting hugs and kisses back.  Singing with her.  All the sign language that she knows – more than me.  How funny she is.  How tough.  How sassy.  How frustrating.  How endearing.  How clever.  How stubborn.  How hard working.  How loving.  Feeling so much love in my heart for her that it could explode.   
 
I would have wept tears of gratitude. 


This little girl has brought so much joy into our lives.  Into others’ lives.  To the people she has met in the last two years and seven months.  The smiles she has caused. 
Joy like watching people’s reaction to her as she rolled down the street in the Highland Festival Parade this past September, the joy that she brought complete strangers, even if just for a moment.  She smiled and waved and clapped and blew kisses all along the way.  She wore herself out completely by the end of the route. 

When Vallyn was a baby (oh, ok I admit it – this happened just the other day!) I would often sit and hold her and stare at her and just burst into tears.  And not because anything was wrong – I just love her so very much that the emotion has nowhere to go but out.  I would tell her
 
“Mommy loves you so much that it’s leaking out of my eyes.”


Oh, yes, there have been plenty of tears along our own little parade route so far.  Both happy and sad tears.  And I know there will be more to come – of both.  But the smiles and giggles have outweighed the tears, and the love and joy and marvel at this beautiful miracle of a child have far surpassed the fear and grief.  


So on this day, exactly three years later, as it has been since the moment I knew she was in my belly, one of my greatest gifts is the love and lessons of our sweet Vallyn.  And to have a little brother for her now gives us two incredibly amazing gifts.  (He makes my eyes leak love too!). 

Forget other presents; these two are priceless. 

Merry Christmas, and a Happy New Year.  May God bless you richly and may you have much joy! 

Birthdays, Earth Suits, and Such...

Yesterday was my birthday.  My body is 42 years old.  I don’t feel 42.  When Westin wakes up hungry in the middle of the night, I feel 112.  When both kids are crying at the same time and I want to lay down and cry too, I feel like I’m 5.  It seems to fluctuate with the situation.  Maybe it all eventually averages out.

But here I am, 42.  With a 2 year old and a 7 week old.  And I feel so very blessed.

  

 I had a great birthday.  I got to be with my entire immediate family – my mom, dad, sister, brothers, their families, and my wonderful husband and two kiddos.  We went to the aquarium and then out to a delicious lunch.  It was hectic and loud and exhausting and SO MUCH FUN.

While at the aquarium, Vallyn was looking around and around at everything as I carried her, and in the process head-butted me in the lower lip.  It immediately swelled up and felt completely bizarre.  I felt like it was totally gigantic and that everyone was staring at it, wondering why only a quarter of my mouth looked like Angelina Jolie’s. 

Which reminded me of the last time I had a cavity filled and left the dentist with Vallyn in tow and a mouth full of novocaine - drooling, droopy-faced, and slurring my words.  At the time I thought “What will people think if they see me like this? I can barely speak!” 

Which made me wonder “What if I had this feeling every day; if I was like this all the time?”

Which got me to thinking about how much we as a society often tend to just look at the outsides of people and quickly pass judgment because of how they appear. 

Which made me think of my sweet, beautiful Vallyn, and how she has Down Syndrome, will have it every day of her life, and how because of that people will pass judgment on her.

Which made me wonder how I will explain to her why she is different when she asks, because she will.

Which reminded me of the phrase “Earth Suit”.

Which reminded me of the first funeral I ever went to for a child.

It was the saddest and yet most beautiful event I had ever been to.  It was for a friend’s two year old who had passed away suddenly and unexpectedly.  The church was packed and there were a lot of kids attending.  The pastor called all the children to the front, sat them down, and tried to explain what had happened to this group of her peers; her friends.  I don’t remember exactly what he said and I wish to this day I had a recording of it.  But he simply said that we are all here wearing our “Earth Suits”, kind of like what astronauts wear.  He explained to these children that this little girl’s “Earth Suit” had just worn out.  It had worn out earlier than most peoples did, but that everybody’s wears out sometime.  And that this Suit we are given is just a temporary thing.  What is most important is what is kept inside this Suit – our spirit; our soul.  And that this precious little girl’s soul – that part of her that was most important - was now in Heaven with God.

Hearing that sermon many years ago impacted me so much.  And I think maybe it was just one of those small seeds that God has been planting along my life’s path to help prepare me for the here and now, for this special gift of Vallyn He has given us, even though I didn’t know it at the time. 

So I think I know how I can explain to Vallyn (and her brother and hopefully others) a little bit about life, and people, and differences, and Down Syndrome.

I can say to her …

“Vallyn, you may look different from other people, but you know what?  We are all different.  That’s just our Earth Suits.  Mommy’s earth suit is short and is achy from fibromyalgia.  Daddy’s is taller and quite hairy.  Your aunts’ and grandma’s suits have Turner’s Syndrome, and Parkinson’s.  Your grandpas’ suits have allergies and arthritis.  Your cousin’s suits have cerebral palsy, and Down Syndrome.  And Vallyn, your Earth Suit has Down Syndrome too.  And you know what?!  IT DOESN’T MATTER ONE BIT.  Our Earth Suits, our bodies – they are just temporary homes for our spirits and souls to live in while we are here on earth.  And your spirit, my love, my precious Vallyn, is beautiful and perfect and amazing.  And that is what matters the most.” 

I like to imagine when we are all together in heaven someday (I hope!) and we are free of our Earth Suits that we will all run and play and laugh together, unencumbered, with our perfect heavenly bodies and spirits. 

But today my earth suit feels 42, and very tired, and has baby weight on it, and needs a shower and haircut and mani/pedi desperately.  And yet… I’m so thankful for it.  For these arms I can put around my husband and kids and get big birthday hugs from my family.  For helping me do the dishes, and laundry, and breastfeed.  For breathing and thinking and typing.  For creating my children. 

Happy birthday to me.  Happy Earth Suit to you.

 

Being Vallyn's Mom.

Holy cow.

I had no idea the last time I posted was February 2013.  I knew it had been a while but, wow.  That's over a year.  And just as in my last post, here I am awake in the wee small hours of the morning, because my sweet gal squawked (repeatedly) until I got up to check on her.  And I can't go back to sleep.  My brain is racing. 

A whole year plus since posting?! 

What the heck have I been doing?!

I suppose the shortest answer is:  Being Vallyn's Mom.

That's it.  That's "all". 

I was going to be a great blogger, I told myself two years ago.  I am going to document our lives together, for us to look back on and remember.  And then - well, then LIFE happened. 

Doctors appointments.  Therapies.  Sleep difficulties (both Vallyn and me).  Fatigue.  Laundry.   Dishes and bottles.  Feeding difficulties.  Exhaustion.  Some colds here and there.  More appointments and evaluations.  A hospital stay for Vallyn.  The recovery from that.  More laundry.  Lots and lots of laundry. And dishes.  And for the last 37 weeks, I have been blessed to be incubating Vallyn's baby brother, which has brought it's own 'excitement', and of course, more appointments.

I know there are moms who 'do it all' - work, raise children, make it to appointments, blog, put on real clothes and make up, and even bake.  I don't know how the heck they do it.  I applaud them and admire them, but I am not one of them.  Perhaps I have crappy time management skills, or get bogged down in details, or have a touch of ADD, but this place often resembles a barnyard where chickens are running around with their heads cut off.  (Mainly, it's just me who's the chicken - Vallyn just hangs out and is awesome.)  Around here, the last two years have felt like an almost constant game of playing catch up.  And at times they have been exhausting, tearful, and scary.

But they have also been the two most wonderful years of my life.  The happiest.  The most full of life, of real life and things that matter.  And the most filled with love.  And along the way, we have continued to look for and have been blessed to find and notice itty bitty and big miracles every day. 

TWO YEARS?  It has flown by and seemed like ages at the same time.  How does that even happen?  I don't know, maybe it's a quantum physics, time/space continuum thing.  All I know is...my little girl is TWO. 

She had a wonderful birthday with friends and family and lots of bubbles and balloons and smiles and love.  It was a fantastic day.  She even blew a kiss to everyone with perfect timing at the end of the happy birthday song, all on her own.  What a little ham.  God, I love her.

She is TWO.  In some ways, not typical.  In other ways, spot-on two year old. 

She came to us not long before Mother's Day in 2012, and changed our world forever.  I mean, she had changed it before she even got here, already working on teaching us big huge important life lessons.  And I felt like her protective mother bear the minute I saw the two lines on the pregnancy test - she was so real to me even then.  But her actual arrival, her delivery, her laying on my chest for just a few seconds, hardly breathing but looking deep into my eyes, staring straight into my soul and making a connection that could not for anything be broken - that was a moment I will never ever forget, God willing.  The moment I really became someone's mom. 

My first Mother's Day I will never forget either.  We hadn't been able to spend the night at the NICU - we had used up our stays so had to come home overnight.  I woke up the next morning and planned to go to church with my husband, my mom, my sister and nephew.  We all got ready and piled into the car and I about 60 seconds later I  burst into tears.  "I don't want to go to church, I want to go to the hospital and see my daughter!" I cried.  "God will understand - I just can't stand for it to be 2-3 more hours before I see her!  It's my first Mother's Day and I need to be with her!"  We turned the car around less than a mile from home, regrouped, and headed to the hospital.

 

I arrived to find that the nurses had made me a clay circle with her tiny little handprint, and with it was a card that said "Happy Mother's Day" with a poem, and it was signed "Vallyn Grace".  I sobbed and sobbed.  Tears of joy of course. 

It was the best present I had ever received. 

Vallyn was (and is) the best present I have ever received. 

One I didn't even know I wanted.  Or needed.  But I did.  And I got her.  And I THANK YOU GOD every single day.  Even on the really hard days.  One of the last things I say to her every night when I pray with her is "Thank you God for our gift of Vallyn". 

This Mother's Day is very different from that first one.  We are all home together.  We will wake up together.  She is not so fragile, attached to tubes and wires.  I can grab her and tickle her and toss her in the air.  She has grown so much.  And I had no idea how my love for her could continue to grow from that first moment I saw her, yet it has. 
Exponentially. 

I am so, so very proud of her.  She is so strong.  So brave.  So determined.  So feisty.  So funny.  So bright.  So silly.  So smiley.  So loving.  So amazing. 

She pushes through her therapy, not giving up until she is exhausted.  She has learned so much sign language.  She does well with puzzles.  She loves books and music.  She is commando crawling and pulling to stand and cruising and walking in her walker and loves to kick and kick the ball.  She loves to blow kisses - to everyone.  Her giggle is like music.  I could never have imagined her like this two years ago.  But here she is.  And thank you God.  For this little angel you sent down to us.  And for letting me be her mom.  And trusting me to take care of her, even when it's crazy busy or spazzy or just plain not the best I could do.  Thank you for letting me have the honor of being her mom. 

And thank you for our little guy who we will meet very soon, for making me a mom times two.  I don't know what I did to deserve it.  I pray I can do it.  Do it right, and well.  Do your work in these children.  For these children.  I thank you for the opportunity.  Because I continue to remain expectant.  And expecting!!!

James 1:17 - Every good and perfect gift is from above...