Saturday, January 16, 2016

6 years ago today ...

It's 4:18 and I'm wide awake, up with pregnancy insomnia and contractions ... again :)

Six years ago today I was just about to wake up in labor, and our whole world was about to change - for the better.

I've reposted Lily's birth story here several times, but I'm doing it again for new readers who have maybe never read how this story started. Lily turns six years old today, and as always her birthday brings me back to those hours when we first met her and began to experience a tangible grace that's been on her life ever since. 

And if you met her, you would know what I mean. 

I feel like I've come full circle to this moment right now - we are a few weeks or perhaps even a few days away from meeting our 12th baby, Madison Faith, who shares her big sister's extra chromosome. 

And now - instead of facing the unknown - we feel so anxious and blessed and honored and thrilled to be able to do this all over again. There is a palpable sense of joy and excitement in our home over the imminent arrival of our little Bunny. And I feel such an overwhelming sense of gratitude for the gift of redemption ... the chance to do this all over again without any fear. 

I hope you don't misunderstand, though : I wouldn't change Lily's story if I could. Her birth, and all the emotions and heart-changes that followed, strengthened our family and brought us closer together than we've ever been. The days following her arrival, and the ups and downs we went through were a growing and learning process, and I'm forever grateful for what God did in us through that season. There's no question about it - Lily made us better people. 

And yet still, I am so happy to have this opportunity to give birth to another baby girl who shares her big sister's third copy of the 21st chromosome ... designer genes is what we call them, because we truly believe our girls were purposefully created to be who they are. Very soon we will welcome Lily's baby sister with the full knowledge of the gift we are receiving ... a gift straight from Heaven, and we can't wait to see her face to face. 

If you're reading Lily's birth story for the first time, please know that any hint of sadness or fear or uncertainty we experienced as a family in the moments after her birth were not because of who she was ... Those emotions, looking back, were the processing of a diagnosis,        not a true reflection of the person God made her to be. Any trace of previous grief has long been wiped away by the daily joy that Lily brings us. Six years of loving her has erased any doubts or fears we may have originally experienced upon hearing the words "Down syndrome" and connecting them to our baby girl.

 What we know today is that no diagnosis can define who a person is. Down syndrome is not something Lily is, it is something she has. She is not "a Down syndrome child", she is a child ... who has Down syndrome.

She is first and foremost a person, our little girl who is feisty and sassy and smart and capable and ornery and adorable and precocious and spunky and full-of-personality and full of life ... and the fact that she has an extra chromosome does not in any way diminish her value or worth as a person. She has shown us that in the face of challenges, she is more than able to learn and grow and overcome, and it has been a beautiful thing to watch her blossom in the six years we've been blessed to have her in our lives.

So without further ado, here is Lily's birth story - and in a sense it's our birth story as well. The day we all experienced what true love really means ... the day we met our perfect Lily. 


Dearest Lily, 

You're almost 4 months old now..I never thought I could love you more than when I was pregnant with you, but every day since your birth my love for you has grown even stronger. It feels like you've always been a part of our lives. 

I've wanted so many times to write about the day you were born..There's a letter to you about the morning of your birth, but I never finished the story. The moments following your arrival were so busy- and that whole first week in the NICU at Doernbechers was exhausting. Every night I wanted to write about what was happening that day, so I didn't forget about the whole experience. 

There have been opportunities since then to sit down and put into words what happened that day...the day that changed our lives forever. But honestly, I haven't been ready to go there emotionally until now.

The morning of your birth was 3 weeks to the day before your actual due date. I couldn't believe I was in labor- Grammi and Aunt Hopie had arrived from Arizona just the night before, to surprise me at your shower. When I woke up at 5 in the morning with strong contractions, I knew this was real labor. It felt like all my other labors- like there was this cool energy in the air:) But really it was the grace of God, just this supernatural "help", because God knows I'm a big baby, and I need a whole lot of help when it comes to anything to do with a) pain b) needles and c) blood. 

Seriously, Lily, your Mama is the world's biggest baby when it comes to all three of those things. Ask any of your siblings some day. I feel faint if I stab my finger with a knife while slicing carrots and I see blood. I have fainted having my blood taken, and I have been known to scream at a doctor about to inject antibiotics into my hip "I DON'T LIKE YOU!!" . When I was 24.

The fact that I actually love labor and delivery is nothing short of a miracle of God.

The morning of your birth was no different. I already wrote about waking up at 4 in the morning in full-blown labor in another letter. So I'll pick the story up from when we arrived at the hospital..

Here we go..

That day is still so fresh in my mind...I remember the sweet nurse-Rima- coming into the birthing room to check me and get us situated. She was Palestinian, and her head was covered in some sort of cloth. She had the biggest smile, and the most beautiful accent. I liked her immediately, and was I glad I had a nurse with a sense of humor. 

She checked me and said I was dilated to 5...and later when the midwife, Claire, came in, she said I was fluctuating between 5 and 8. Lots of babies makes for a stretchy Mama:)

Everyone started arriving, and the room was getting quite full. Jason and Naomi, Josiah and Mackenzie, Denise and Danielle, Grammi and Aunt Hopie, and Kelly all came in with big grins on their faces. Daddy and I were so happy everyone could be there. The hospital ban on more than 2 visitors (because of H1N1) had just been lifted 5 days before. 

My labor tape was playing in the background..I've used the same worship tape in every labor except Jason's- it's called I Exalt Thee, and just hearing that tape puts me back in those birthing rooms; the music literally transports me instantly in my mind to the births of my children. 

Although I was so excited and happy, I could not make myself relax. It wasn't that I was in pain- God helps me so much in labor that I mostly just feel pressure with each contraction, but very little pain. But for some reason I could not stop shaking. Rima and Daddy tried to get me to calm down by reassuring me that everything was going smoothly....but those dumb legs of mine would not listen.

Remember when I had my ultrasound and learned that there were some markers for a chromosomal problem, and also a possible heart condition? My legs kept shaking just like then, and my heart was racing- even though I felt calm in my mind- my body had a way of exposing the stress beneath the surface.

I prayed, I took deep slow breaths, I prayed, I hugged Daddy, I prayed...but I could not stop shaking.

Because I knew...deep down, I knew that I would be seeing you face to face, and all the months of waiting and wondering about who you were, they were coming to a close. This was the moment I had been lying awake at night anticipating. And although I didn't want to admit I was afraid- have I told you I don't like admitting weakness, Lily?- well, my body wanted everybody to know. I hate not being in control- I hate that feeling of panic that washes over me in waves. 

So I asked the midwife what she thought about getting an help me calm down..She said if I did, they would break my water, and I'd probably have you twenty minutes later. That did it for me- I just wanted to finally have you in my arms, and have all the waiting over with.


It took a little bit for the epidural to kick in. Even after I was numb I was still shaking. Rima took my hands in hers and looked me in the eyes and said "We can't do this for you- you're going to have to take control yourself." Claire came over and sat on the bed and asked me how I was feeling. I started crying and said I was just upset about being afraid and I was tired..emotionally drained. Claire was so sweet- she held my hands and said "This has been a long pregnancy for you, hasn't it?" I nodded and kept crying, but it was a relief to admit-I'm not all that strong.

Lily, I'm the woman who loves pregnancy, I begged your Daddy in every previous labor to please, please let me have just one more baby. I live for having babies, I love every part of pregnancy, I love labor and delivery, I get HIGH in labor and delivery for crying out loud.

But I was done. Done with the roller coaster ride this pregnancy had taken me on. I just wanted the moment of truth to come, and to move on with whatever the future held for us. 

Daddy prayed with me again- Denise came over and prayed as well..and pretty soon I started to calm down. In fact I felt a tangible peace come over me- like a warm blanket of peace, just enveloping me and letting me know everything was going to be alright.

I'm sure the medicine had something to do with things...but I do believe God put His arms around me, and carried me through the hours to follow. There's no other way to explain how I felt. It's one simple word, really...


I heard it preached long ago, that the grace of God is not always something you can feel until you are going through something. So many times we try to anticipate- how could I ever go through this scenario or that situation. But as Christians, we can have that confidence, that although we don't know how the grace of God can be so present, so tangible, in our moments of crisis- it IS. It is not something we conjure up ourselves, it is not simply "mind over matter"- it is not anything we DO ourselves. Grace is God Himself reaching down and carrying us through, when we don't have the strength to get through something ourselves.
Once I started experiencing that grace, I was so ready to meet you, Lily. I wanted to hug everyone in that room and tell them how much I loved them. One by one, all of my dear, sweet, wonderful loved ones hugged me, while Danielle snapped pictures, and Kelly video-taped..




Right after we took pictures, I felt a lot of pressure. Claire checked me and said "Let's have a baby!" She had already coached Kenzie on what she needed to do- we had planned months before that your sister would deliver you. Rima helped Kenz get her scrubs on. She looked radiant and so, so excited.


Jason and Josiah stood at the head of my bed..Daddy and Rima were on each side, and everyone else gathered around. I could hear my music playing in the background, and I just felt incredible adrenaline...every time I looked at Kenzie she had the biggest smile on her face, but her continual gum smacking told me she was nervous too.

Just a few pushes, and I remember someone saying you had a little more push, and you were out..Suddenly the room was filled with cheers and laughter and I heard Daddy's voice, love-filled, proclaiming happily "She's looking all around! Oh, her eyes are wide open!!" Kenzie was holding you, grinning, and I couldn't stop laughing and crying at the same time. I couldn't see you, but the laughter and voices of everyone in that room just oozed with joy, and Daddy looked so happy, I knew you were beautiful.


I had a blanket draped over my legs for privacy, and as Claire took you from Kenzie, I tried to see you over the blanket..she lowered you onto the bed and still I couldn't see you, but Daddy kept saying how he'd never seen our babies look all around like that, and how cute you were. I just wanted to hold you and look at you!

Claire said you were breathing, but she wanted to move you over to the warmer where the pediatrician and respiratory techs could look you over, because you weren't crying, As soon as she lifted you up to move you, you let out a cry, and everyone laughed.
She held you up for just one moment...

..and I knew. Lily, you were beautiful, you were so sweet and tiny...and Mama loved you instantly, and her heart broke at the same time. I saw your sweet little eyes, and your tiny arms, and I knew my baby girl had Down syndrome.

And let me tell you, that no amount of preparation - had I known ahead of time- would have prepared me for the love that I felt instantly for you-- the protective, instinctive, all consuming Mommy-love that I felt in that moment.

I just wanted to hold you, and tell you that I loved you, and that it would be alright- Mommy loved you no matter what.But Claire whisked you over to the warming table, where a team of hospital staff gathered quickly around you.


And slowly the excitement started to die down, and as the doctor and nurses worked on you, I started to feel the mood was changing, Danielle was taking pictures of you at the warmer, and still I just wanted someone to hold you up, or move the table over to me, so I could see you, but they couldn't... because you were turning blue.

I kept asking "Is she alright?" and everyone kept reassuring me that you were...but I saw the looks on everyones faces, and I knew no one really knew. Mackenzie went over to the table and looked at you. I saw her whisper something to Danielle..and she looked so frightened, and like she was about to cry. Danielle brought her camera over and showed me the picture she had just taken of you, and I kept laughing and crying, because you looked so sweet and beautiful, and through my tears I saw Mackenzie examining you closely.

Claire came over to my bed and knelt down..She took my hand, and I said "I know she has Down syndrome." Claire smiled- such a sweet, sad smile- and said "Yes. I knew when she came out.." as I nodded and smiled and cried and said "It's okay"..did I think I was comforting her? Because I was so happy and so sad all at the same time- and still my fierce, protective self did not want anyone feeling sorry for my fragile, beautiful baby girl.
Daddy was watching everything they were doing to you- listening to your heart, holding oxygen to your face to keep you pink..Mackenzie came over to my bed..and smiled..and her face broke into the saddest look..and I said "It's going to be okay" , because I knew she knew. And she collapsed on my chest and started sobbing.


My sweet, brave daughter, she knew from the moment she delivered you, but she's just like her Mama, she smiled and held it together...until she couldn't. I've asked her what she felt in those moments, and she says it was mostly shock. Because all along she never wanted to believe you might have Down syndrome. She says she pushed that little thought to a corner of her mind and wouldn't look at it.

So I held her and stroked her hair, and talked to her through her sobs, and tried to fit in all the words I knew, to take away that shock and grief, even though really, only time can heal some pain.
I remember thinking- I can't cry, I have to be strong because my babies need me, my grown-up babies, I'm still their Mama, and I don't want them to hurt more by seeing me cry. And I wanted everything to stay happy- I didn't want who you were to be a sad thing to anyone.

And in the background I could hear Josiah crying..and I never want to hear those cries again. It's not fair to hear your almost 20 year old son sobbing, to know that you just can't fix it all... The pediatrician said they needed to move you to the NICU ..more words I didn't want to hear..but they would let me hold you for a few minutes. And when they placed you in my arms, every single bit of pain and sorrow and grief vanished instantly-


Because when I held you I felt exactly as I did when I first held all your brothers and sisters- that I would give my life for you if I had to. Love, pure love, and overwhelming gratefulness is what I felt. You were here safely, you were alive and beautiful, and perfect, and you were my Lily.



It's late now, Lily..almost two in the morning, our very first Mother's Day together. I have more to write about the rest of that day, but it will have to wait for now.
If anyone would have told me a year ago, in the first weeks of my pregnancy, that I would have a baby with special needs...I don't know that I could have handled it.
But that's what the grace of God is all about- His grace is more than sufficient in our weakness. He is able to take us through things we never thought we could make it through and still be okay.
More than okay. Because life with you just keeps getting sweeter and sweeter, dearest Lily. You are Mama's best gift, next to salvation, and I will never stop thanking God for giving me YOU, my precious, wonderful, perfect Lily.

Love always,

Mama oxox


Mary said...

Happy birthday Lily!! You bring more sunshine to the world!
I'm praying for your delivery, Patti! God bless you and you witness of faith and love!!

Anne B. said...

Oh HAPPY HAPPY 6th BIRTHDAY SWEET LILY ANNE! You are perfect in every way and such a blessing! ((((BIG BIG HUGS))))!!

Mary Lou said...

Happy, happy, happy birthday, you Beautifully Unique, fearfully and wonderfully made little girl!! Here's to many, many, many more!! ;-D
Patti.... What beautiful words. I am waiting--impatiently!!--to "meet" Madison Faith!! ;)
Love you later, Raelyn

Unknown said...

Dearest Lily Anne

Happy birthday my sweetheart, may God keep you safe, healthy and happy always and forever.

Patti, I've read the birth story a few times before but it still made me tear.
Thank you for sharing and always inspiring and motivating other mamas.

All the best for the birth of your new joy -Maddison.

Lots if love princess Lily.

melissamaren said...

Happy birthday, sweet girl!!! xoxo
Love, Abby & Melissa from Massachusetts

Grammi Faith said...

My dear Lily Anne (with an E). Magick loves you so much. Our family is so blessed to have you. You are the sunshine on a cloudy day. Can't wait to come back to OR and maybe you and Hayden will take me on walks in your beautiful neighborhood. HAPPY 6TH BIRTHDAY!! XOXOXOXOXOXOXOXOXOXOXOXO

Zaankali said...

Happy Birthday to your Lily Anne!!! Hard to believe she is 6.
I so miss seeing your Instagram posts. Is there a reason why you stopped? I sure hope it wasn't because of hurtful people.
Enjoying celebrating with your beautiful family.

Celebrating Phoenix said...

Look how pretty she is! I love seeing Lily because she sounds so much like Phoenix. I hope we get the chance to introduce them to each other one day.

Jennifer said...

Hi! I've followed your blog forever and you're old instagram. I just found out you have a "new" instagram and I'd love to follow it but it won't let me request.. do you have like a limit for followers?