This is my first letter to you on your big sister's blog. I started writing letters to Lily six years ago... I had just come home from a level two ultrasound at the Maternal Fetal Medicine Center, an hour away from home.
It was a routine twenty-week ultrasound, but because of my age at the time, my doctor had suggested going down to Eugene. The ultrasound machines and the doctors there were equipped to handle women "of advanced maternal age" and to look for any anomalies in a growing fetus, much more so than our hospital here in town.
That ultrasound turned out to be a pivotal point in my tenth pregnancy; nothing else in the following seventeen weeks leading up to Lily's birth would be routine, compared to my nine previous pregnancies. Several markers for Down syndrome turned up on that anatomy scan, the major one being a possible AV canal defect on our baby's heart. We left Eugene with lots of questions and what-ifs, but because I did not want an amnio, we were told there was no way to know with certainty if our baby had Down syndrome or not. That was something we were willing to deal with - we said we would cross that bridge when the baby was born. But because of the possible heart condition, we faced a long road ahead of many ultrasounds and echo cardiograms and stress tests to make sure our baby was thriving.
I remember coming home from that appointment and feeling a heavy fog of uncertainty slowly descend upon my mind. I knew God was helping me in that fog- I felt His grace. I felt the prayers of friends and family around me as we made several phone calls asking for prayer - but it seemed there was this sea of unfamiliar waters that I had suddenly found myself floating in. At times I felt myself slipping below the surface of those uncharted waters, desperate for someone to pull me out and return me to the safe shores that I had always known during pregnancy ... the times when all we had carried home from an ultrasound was a handful of grainy black and white images of our baby, no weighty words like "enlarged kidney", "shortened femurs" and "av canal defect" to accompany those flimsy little squares of photos.
And so I turned to the thing that had always carried me back me to shores of certainty whenever I had experienced unknown waters in my past ... writing.
I don't want to make light of the grace of God or dismiss His hand in all of what we went through - His hand was the thing that pulled me up out of those waters. His grace, His love and His tangible presence in my life - I know without a doubt that it was God's hand that brought me up for air when I thought I was going to drown.
But I also know that God gives us anchors in life ... or in my case a life boat ... to carry me back to shore. He gives people tools - coping mechanisms, if you will - for handling life's crises. Some people (your Uncle Chris for instance) use humor to get them through tough times. Other people (like your Aunt Hopie) might use physical activity - say, running a marathon, or hiking a mountain - to clear their brain and bring focus. (I cannot for the life of me imagine this bringing me ANY kind of comfort, when a nice cup of tea and a blank screen before me does the trick ... but there you have it, Bunny. Different strokes for different folks.)
Anyhow ... writing carried me through. When I thought I was going to lose my mind during those seventeen weeks of my remaining pregnancy --- trip after trip to Eugene, doctor visits, and google searches, and chance (??) encounters with parents of children with Down syndrome, and researching everything I possibly could on av canal defects, and finally that last eternal week of carrying Lily and feeling her movements frighteningly diminish --- I wrote.
I wrote and wrote and wrote, and I processed all of my emotions, all of my anxiety, all of my HOW DO I HANDLE ALL OF THIS feelings - through writing some more. It was my tool, my weapon, my coping mechanism .... it was my lifeboat.
And so, Dearest Bunny .... I'm here again.
Not because of extra chromosomes ... but because I'm floating in a sea of uncertainty again, and I need a lifeboat. I feel the grace of God - I feel His love and protection and guidance - I feel His hand in all of this. There is no mistaking that.
But I need a lifeboat.
And right now I can picture God standing on the shore ... and He's throwing me a rope.
So if writing is my lifeboat, and God is on the shore, then faith is the rope that is going to pull me back to safety.
I'm going to write and write and write, while I am praying and pouring my heart out to God, and He is going to pull me back to safety and peace and solid ground.
But I have to hold on to that rope - that faith - that He is standing on the shore. He hasn't abandoned me, He hasn't turned His back on me, He didn't forget about me, or about you, my little bunny - He sees us, and He knows right where we are, and He is going to lead us back onto that shore of peace and safety whenever it feels like we are drowning .... we just have to hold on to faith.
And this is where my letter to you really begins, little Bunny.
This is where your story starts to unfold, and I am honored and blessed beyond belief to begin telling it. And I know that God is really the One who is writing your story- and I'm just the story teller. I truly believe those words - before You formed me in my mother's womb, You knew me - so if God is the author, then I am just the pen in His hand.
I mentioned that there was a pivotal point in my pregnancy with your big sister's pregnancy ... a moment when everything changed.
And one little phone call on Monday afternoon, answered while I was sitting in my hot van in the Winco parking lot, while your older sister Abigail grabbed a few things from the store... one little phone call became that pivotal point in this pregnancy.
I want to share this little video first though, Bunny, before I write about that phone call.
Because I don't want any of the JOY we all felt at discovering who you are to be eclipsed by any news I received just a few hours before this scene. I don't want anyone reading this - especially you some day - to miss the absolute happiness and excitement and love we felt as we celebrated your little growing life and unwrapped the gift that God has given us.
Monday evening we held an impromptu family-only gender reveal party, and this is what we learned....
We had called out-of-state family members ahead of time (as well as your big brother Jason, who was working that night) asking them to FaceTime with us during the reveal ... so there were about five cell phones held up in the air, while Tyler took pictures and a family friend videotaped Daddy opening the box to reveal your gender.
Only Mommy knew ahead of time who you were - I'll explain why in a moment - everyone else had ribbons of pink or blue around their wrists to display whether they thought you were a boy or girl. I think the votes were pretty evenly distributed - Daddy, Josiah, Kenzie, Jonathan, Caleb, and Abigail thought you were a boy, and all the rest said girl.
Daddy had a little trouble opening the box all the way, so one solitary pink balloon made its way out first, while the remaining balloons were trapped inside. There had been a pink and blue balloon tied to a ribbon on the outside of the box ahead of time- we all had a good laugh at Mackenzie and Abigail forgetting this fact and repeatedly asking "why is there a BLUE balloon too??" after all of the balloons were floating in the air :)
We followed up the news that a new baby GIRL was going to be joining our family early next year with a giant spread of food and ice cream cake .... Daddy had picked up the cake from the bakery at Winco, asking the baker to write the words "welcome baby #12" on the top. (He told us her jaw dropped when he said the number "12" - probably her first time decorating a cake with those words !)
The night was beautiful and peaceful and lovely, and I felt such happiness knowing that we were all in this together ...
|Monique, pregnant with our GRANDDAUGHTER - due six weeks before our baby girl :)|
|Jonathan and Josiah ...being their crazy selves ;)|
So now, Bunny, for the phone call that brought me to this letter ....
All last week I spent each day checking my phone for any missed calls from my doctor. I had the NIPT blood test done two weeks ago to determine whether or not you had any chromosome issues (including but not limited to Down syndrome) and also your gender. I have blogged about it before, but I wanted the blood test this time to be prepared- because I was separated from your big sister Lily after she was born, and I did not want that to ever happen again. She had "thick blood" and had to be transported to Portland, while I remained recovering at our hospital here. I spent one night away from her, while your daddy took care of her in the NICU ... that, more than anything, was the hardest thing to go through. So I had this blood test to make sure there were not any issues that might keep me from delivering here at our smaller hospital.
As well as the issue of where to deliver - I wanted to know this time (as I did with your brother Hayden) if you had Down syndrome or not. This test was not available when I was pregnant with Lily - if it had been, I'm sure I would have opted for it. It is not threatening to the baby in any way - it tests my blood, which has traces of your placental DNA in it, and that is how everything is determined. There is a one percent chance for error, and this is only when a) a baby has Mosaic Down syndrome that goes undetected (because it is possible for triplicates of the 21st chromosome to be present in the baby but not the placental DNA) or b) for the test to come back positive, because the placental DNA has triplicates of the 21st chromosome, but not the baby itself (which would also be Mosaic Down syndrome.) This, obviously, is very rare, but the test cannot be qualified as "100% accurate" because of the margin of error.
So .... back to Monday afternoon, when I was sitting in my hot van in the Winco parking lot, waiting for Abbi to come out of the store....
I was texting my friend Kris, and for once my mind was not on the phone call I had been hoping would come all last week. In the middle of reading her text, a phone number popped up - and just as I was hitting the button to answer, it registered with me that it was my doctor's number. Time seemed to stand still ... I said hello, and Dr. Boyle greeted me with her familiar kind voice - "Hi, Patti."
I took in a small breath, and listened as she said the words I had been waiting to hear... I received the results from your NIPT test .
Bunny, I am not someone who believes in foresight. I don't believe that we as humans are capable of "knowing the future" or what have you .... but I do believe that as Christians, God prepares us for certain events.
And Bunny... in that moment, I felt like I knew what was coming next.
All the previous week I had little "nudges" in my spirit as I prayed for you ... little drops of knowledge they felt like, piling up in my mind making a distinct impression that the baby I was carrying felt very much like a baby I had carried before ....
... it started with a picture I took last week of your sister Lily, kissing your brother Hayden. As I studied the picture one morning, a resemblance hit me. I had seen that little profile somewhere recently.
And maybe it's not obvious to anyone who hadn't studied your little profile several dozen times before. Maybe the slant of the nose and the tilt of the head, and the sweet little profile wouldn't make such a clear impression to someone other than your Mama. But when I pulled out the ultrasound photo that I carried home from the doctor's office a few weeks before - your ultrasound photo, little bunny ... I saw such a strong resemblance between you and your sister Lily, that I had the chills.
I made a side-by-side comparison collage, pictured above, and I sent it to your Aunt Hopie and several friends.
"This baby looks like Lily," I said, although I don't think they saw the same strong resemblance that I did.
That little collage began the first nudging in my spirit that things were about to change for this pregnancy.
So when Dr. Boyle finished her sentence...
"...and it does appear that this baby has Down syndrome" ....
I did not feel surprised.
I did not feel sadness, or disbelief, or shock, or anything other than a calm reassurance that my instincts had been right.
I felt total peace.
She went on to tell me that the rest of the results on the test - the ones for other genetic "issues" - had come back negative, and that Down syndrome was the only thing we were facing.
And because I had all last week to think about what my response to such information might be, I knew immediately that I wanted to know whether you were a boy or girl.
The original plan had been for me to go to the doctor's office and pick up a sealed envelope with that information written inside - and prepare for a gender reveal party. But in that moment, I knew that I had to know who I was carrying - I had to give context to the diagnosis I had just received by knowing the person you are, and not just the condition you have.
Because if there is one thing I've learned, little Bunny it's this : you are not a diagnosis.
You are not a syndrome, or a condition, or a problem to be dealt with - you are a person.
Who you are is NOT determined by how many chromosomes you have, or what label the world of science and medicine has given you ... you are not "a Down syndrome baby" - you are A BABY.
And while you do have Down syndrome, it does not define you. You are a baby. You are my baby.
And when my doctor answered my request - "I want to know who this baby is" - I learned that you were my baby girl.
|Monique brought this little bunny to your gender reveal party :) A bunny for my bunny.|
So that's how your story begins, Dearest Bunny. All of my letters to you will begin that way, as well. ... Dearest Bunny. It's mommy's little nickname for you ... your sister was Lilybird, so it's only fitting that you have a nickname too :)
And speaking of names, Daddy and I picked one just for you.
We were going to wait to tell everyone that name until you were born - but in light of the news received on Monday, we want everyone who loves you to be praying for you by name every day.
And not because we are afraid of Down syndrome.
Not because we are 99% certain that you share the same designer genes as your beautiful big sister Lily.
We are completely, 100% at ease with who God made you to be, and that includes your diagnosis of Down syndrome.
But there are many unknowns.
If we are going to talk about percentages .... fifty percent of babies with Down syndrome are born with heart conditions. Many of those babies require open heart surgery, several months or more after birth. I have met many, many, many of the brave families (either through blogging, or Instagram, or in real life) who have faced that challenge with their children and overcome it. I have read about or known some families who have lost babies with Down syndrome - either in the womb or during or after open heart surgery - because of complications. I know the mortality rate for babies with Down syndrome, as well as babies of moms "of advanced maternal age" ... is higher than those without your condition.
But as Daddy is fond of saying - we don't live by statistics. Or odds. We put our trust in God for whatever the future holds, and we take one day at a time and we hold onto that rope called faith.
And when the flood of what-ifs threatens to overwhelm me ... what if this baby has a heart condition that requires surgery .... what if they tell me during my ultrasound next week that there are medical issues connected to my Bunny's diagnosis that we haven't dealt with before .... what if I have to travel to a hospital out of town to deliver, rather than my familiar and near-by hospital here. ... what if my Bunny has to spend more than a week in the NICU (Lily spent six days) and I have to be away from all of my children again ...what if we have a long road ahead of heart issues and doctor visits and possible open heart surgery .....
When the what-ifs start coming and I feel like I'm about to drown - I've got take take hold of that rope. I'm going to climb up into my lifeboat, and write and write and write, and I'm going to hold onto that rope with everything that is in me - that rope that is my faith - and I'm going to make it to the shore of peace. God is waiting for me there, and I have every confidence that He will pull me through. He will never leave me, nor forsake me, and although I'm sure there will be some rough waves that try to bring me under .... I've got a lifeboat. And I've got a rope.
And I've got you, Dearest Bunny.
Our little Madison Faith.