Lilly's story

Here is my birth story of Lilly Brin.  My second child.  She was born with Down Syndrome.  I wrote this blog post about a week after she was born.  And about a day after the blood tests came back positive for Down Syndrome.  This was a hard time for us...our world was shaken.

Monday, March 29th 2010

Just a couple of weeks ago I was worried about how fat I was getting.  Then I worried that my body wouldn't go into labor like with my first child who was 2 weeks overdue--(man, what a horrible labor and birth.)  My oldest arrived in the world smothered in meconium after a 20 hour induced labor, with every single hospital intervention possible except c-section (thankfully that didn't happen).  He arrived dramatically, that's for sure...

Oh, but the silly things we worry about when little do we know what's really in store for us...

Lilly Brin Martin was born on March 20th.  The first day of spring and one day before World Down Syndrome Day.  She was born after a quiet 4 hour labor at the Toppenish Hospital.  I was surprised at how mild the contractions were, and how far apart they were even up to the pushing stage.  She did everything right.  I felt her little head slide down into my pelvis like a rubber ball slowly squeaking its way downward.  I had a smile on my face the whole time as I danced and swayed my way from a "4" to transition in no time at all.  I kept thinking, "I'm going to dance her out of me.  She'll be my little dancer."  I imagined her beautiful dancer feet, and long slender neck, and I could see her elegant and graceful up on a bright stage.

It was time to push.  Everyone waited for me as I sat there smiling, waiting for the next contraction.  I was prepared for this stage--and because I was doing it without medication or drugs, I knew there was the possibility of pain.  My husband and I had been silently praying with each other in between contractions, and I would wrap my arms around him while he'd say a prayer in my ear giving me the strength to do this all on my own.  Believe it or not, but it wasn't painful.. it was a lot of work, though!  It was truly "labor" in all forms of the word.

So I pushed.  And I didn't feel any pain.  One push...then one half of a push...then she was wailing at the top of her lungs before she was even halfway out.  It was a beautiful sound.  Healthy lungs!  Almost as if she was singing...maybe she would be a singer too!

Then I looked at her.  And I thought, "That's not my baby....where's the other baby?  The one with different eyes?"  They held her out in front of me to hold her.  And I just stared at her stunned.  I searched my mind wondering who in my family had those eyes?

It wasn't until Brent laughed and said, "Erin, take her!" Then I snapped out of it.  And that's when auto pilot kicked in.  I held her, I think I kissed her, I tried to latch her to feed.  She was so little and just squirming everywhere.  I don't remember much, but I remember thinking, "Are all my babies going to look like this?  Did Tanner look like this?"

It was my doula who said something first.  Apparently one of the nurses saw it too.  But things were a little foggy.  I think the nurse mumbled something about Down Syndrome suspicions.  My doctor even said something like, "I don't know what the quad screen results were talking about?  She's beautiful!"  Then I think I saw her beckon subtly to that same nurse to fetch the on-call pediatrician.  Looking back...I know my doctor knew.  She just didn't know how to say it to me.  Earlier in my pregnancy I had called her in a panic saying that the quad screen results came back with a 1 in 23 chance for Down Syndrome.  And she did her best to calm my nerves and help me believe that the odds were still in my favor.  And when we did an ultrasound that showed no markers for Down Syndrome, I quickly pushed the idea out of my head and never thought of it again.  Never.  Until now.

My doula finally blurted out, "Well, if she is or if she isn't...then what does it matter?  She's the child God gave you.  And every child is a gift from God."  It sounded a little brash at the time.  But she was right.  Lilly is the child God gave me.  And I'm so glad He did.

But at the time, both my husband and I were convinced that she did NOT have Down Syndrome.  We were still going off of that ultrasound we had with the perinatologist and genetic counselor.  They told us that things looked good.  And that's what we clung onto for 3 days before we got her blood work back.  Or maybe we just heard what we wanted to hear in that ultrasound.  Denial is a very interesting thing...

The on-call pediatrician who looked Lilly over (and didn't really have the best bedside manner, to be honest) was convinced that Lilly had Down Syndrome.  But we still kept telling ourselves that it wasn't true.  Nothing is for sure until the blood results come back, right?  We looked at her over and over, analyzing every feature of her face.  Did we see Down Syndrome characteristics because we were looking for them?  Or did she look "typical" to any other newborn out there?  If nobody had said anything to us, or if we hadn't had that dang quad screen test come back positive, would anyone (hospital staff included) really have noticed anything different with Lilly?

It seemed unfair to put her through this, when we didn't even know for sure.  This was our time to be celebrating, picture taking, and welcoming our new little one into the world with all the happiness and joy she deserved.  But we were crying, praying, and agonizing over that day when we would find out the truth.

Papa and Tanner holding Lilly.  I love this picture!!!

Looking back, it was beautiful to see my husband and his roles of loving father and priesthood holder take over.  He laid his hands on Lilly's tiny head and blessed her to be "normal and healthy".  He had a quiet strength that I couldn't find in my confused mind.  So then he blessed me too.  He blessed me with peace and the strength to let the Holy Ghost in and comfort me.  I can see God's plan now as I type this birth story.  Throughout my pregnancy and during the labor process...God was there A LOT.  I had no idea.  Two days before I went into labor and during some pretty painful contractions, Brent gave me a blessing and the contractions stopped.  And right before we decided it was time to drive to the hospital, he and his dad gave me another blessing at 4 in the morning.  Then right before I pushed her out, both Brent and I put our heads together in prayer and quietly asked Heavenly Father for more strength.  I didn't see it then, but I see it now; Heavenly Father was preparing us for the tumultuous, yet wonderful journey we were about to embark on.  And I am so grateful that journey was founded upon prayer and trust in Heavenly Father.

Amazingly, I found a certain sense of calm in all the turmoil that was going on inside my head and stomach.  Sure there were tears and "end of the world" moments for me.  And I honestly always knew that those test results would come back positive for Down Syndrome.  So the days of waiting were filled with tears for those lost dreams that I had for our little Lillybug. Knowing she would probably never get married and have children of her own was what really broke my heart.  Being a mother has always been the most important part of who I am.  Ever since I was a little girl, I've only wanted to just be a mother.  When I finally married at 30, it was my goal to bring children into the world as soon as I could.  I read all the books and focused on all the things that I felt were best for my future children.  Parenting has been something that I've dived into completely and whole-hearted.  And I wanted to pass that love and desire on to my children--especially my daughter(s).  But...I guess expectations like this can die even when you are blessed with a "typical" child.

This is me trying to find the humor in things as the days went by and I was nervously waiting for the results.  Look at my eyes, they're puffy from crying all day.  And yes, I did feel like a cow.  Lilly is a good little nursling.
So then we got consumed with the "what if" expectations.  Like what if we have to watch our child grow up with this huge label of "I have Down Syndrome.  Don't expect me to accomplish anything amazing in life".  I almost considered not telling anyone about Lilly's condition, and seeing if people treated her differently.  But then again, I think we were jumping ahead of ourselves.  No need to fear what hasn't even happened yet...or will ever happen for that matter.

Yes.  The results came back positive.  I was almost relieved to hear it.  I was calm and at peace as I took in all that our doctor was saying.  And to be honest, I felt a sense of happiness.  Like all of a sudden new windows opened up and this sunshine beamed in.  I could imagine all kinds of things Lilly would do and accomplish.  I became very proud of my Lillybug...already.  I AM proud of her, knowing that she knew what she was doing when she chose ME to be her mother.  It brought to me a feeling of such importance, and that a lot was expected of me to be the mother of this beautiful and very special child.

And she is sooooooo beautiful and sooooo perfect.  That's all there is to it.  She is absolutely adorable with her little almond eyes, button nose, and rose bud mouth.  She has the longest fingers (she's going to be a piano player too), and she is so active that I can't get her to stop squirming and getting into things. And her flexibility and dancer's feet are to die for (so I guess I won't be giving up on that dream of seeing her dance on stage).

At those quiet times at night, when it's just me and her, I look into her eyes and see heaven.  She has this sense of calmness about her that settles my aching heart.  She's content with who she is, and she has completely accepted me as her why can't I--at times--not accept this different journey that lies ahead?  But I do know that I am very grateful for her love and strength that she gives me.

So now that you know about Lilly, let's celebrate her arrival, and her life!!!  We only ask that you do not send us your condolences or tell anecdotal stories of people you know with Down Syndrome.  We know you mean well, but that's not what we want at this time as we come to terms with Lilly's condition.  We want to celebrate the beautiful child that she is.  We would like everyone to see her for who she amazing little girl that will bring so much to this world.

The Martins

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