Monday, November 1, 2010

Your Birth Story: conclusion

Dearest Lily,

I am about to write the conclusion to your birth story. And it is very difficult for me... because it brings back painful memories of one of the hardest nights of my life. And what is so painful to remember is my despair at your diagnosis. Because prior to that night, I was filled with joy at your birth. I had 36 hours to soak in the news that you had Down syndrome, and things were so chaotic and busy that I don't think it really hit me yet. Maybe I was in shock? Or maybe God just gave me a window to breathe, so that I could cope and do all I needed to do.

But when we got back to our little room at the Ronald McDonald House, everything started crashing in on me.

I talked in my last few letters about the fear that had been building in me all day. I know now that exhaustion and pain contributed to what I was going through mentally. As we got in our beds- two little inflatable mattresses on single beds...I started to shake uncontrollably. Daddy was asleep- I kid you not- in seconds. Not just asleep but snoring. He had been up since Saturday morning when I woke him to tell him I was in labor...and it was now midnight on Sunday.

As I lay in my bed, struggling to get warm and to try to control my shaking, I had a vivid image in my head. It was of you, lying in your little isolette in the NICU, covered in wires...and looking very different than my other babies.

And I'm so ashamed to admit this, Lily. Because this is what I alluded to the other day...when I said I feared the look of Down syndrome.

Because the image that kept coming to my mind, was implanted on my mind, was sitting there refusing to budge, although I tried so hard to focus on something else, anything else...was the face of Down syndrome.

Your thick little neck, your upward slanted eyes that were swollen shut, your sweet little lips that turned down around the edges, your tiny ears, and flattened nose...your hands that were so different, your shortened arms and legs...Lily, I am so sorry, but I was tormented that my baby displayed so evidently the features of Down syndrome. The thing I had feared the most, felt so true- I didn't know you.

You see, all through my pregnancy while I was thinking about my fears, and trying to get a grasp on what I was so worried about, the thing that kept coming to my mind was that I was afraid you wouldn't feel like you were mine. I had read so much information- old, outdated information, that said "babies with Down syndrome look more like each other than their own families."

I wrote in another letter of the minutes following your birth, and how your sister Mackenzie collapsed on me, sobbing, after realizing you had Down syndrome. But I didn't mention what it was that she sobbed....

"I don't want anyone to make fun of her!"

She was so heart broken, so anguished about what the future could hold for you...and those words were ringing in my ears as I lay on my bed, shaking with fright and grief.

Because I knew that the look of Down syndrome was not so painful because it was different than my babies. It was the look of the future, carved out in the tiny crease in your palm, the extra folds under your eyes, a future possibly filled with rejection and pain.

And what Mama can stand the thought of her baby girl growing up in a world that can be cruel and judgmental and hurtful?

There are no pictures for me to place in this letter, Lily. No photos of that dark night that seemed to go on forever. Just a picture in my mind of a swollen, too-still baby lying in an isolette, and her mama in another place, crying out to God that things could be different.

I'm so sorry, Lily. So sorry I wasn't stronger, more accepting of who you were.

I remember getting up to change out of my clothes...I tried to walk to the bathroom, but my legs were still not able to support me. So I climbed back under the covers, shivering, and that's when the anxiety hit me full force.

I was crying uncontrollably, I was so dizzy and cold and scared, and suddenly my throat started to close breathing was coming too fast, and no matter how hard I tried, I could not fill my lungs with enough air. I called to Daddy for help- he woke up and prayed for me, but fell back to sleep instantly...I tried praying, tried to slow my breathing, to calm myself.

Lily, years ago I never knew what an "anxiety attack" was. I had heard the term, but thought it just meant... extreme anxiety. I never knew the physical metamorphosis that takes place when you're in the middle of one. It's as if someone flipped a switch inside of you, and adrenaline is racing through you, telling every nerve to come alive, and there's nothing you can do to stop it. I heard it described once as "fear stepping on an accelerator inside of you, and he won't take his foot off the pedal." You are convinced you are going to die- either from lack of oxygen or a heart attack or both.

In fact...even as I'm typing these words, trying to describe those moments, I can remember the cold sick feeling of fear that is tangible during an attack. It is demonic, it is cruel, it is the absolute loss of faith. It is fear unleashed.

And I never want to feel that again.

I woke Daddy again, told him I was having a panic attack, and could we please call the hospital? Daddy reassured me - sleepily- that I was fine, God was going to take care of me, there was nothing to worry about...and he called our doctor's answering service. A few minutes later my midwife called back...listened to my symptoms, asked about my bleeding (which had seemed too much to me), asked about how much water I had been drinking (which was my legs were swelling), told me to call again if I soaked two pads in an hour...told me to try to get some sleep...and to call in the morning if I needed her.

And Lily, wouldn't you think that would reassure me? That a medical professional had heard my symptoms and calmly dismissed them, telling me to get some sleep?

In fact it did just the opposite.

Because part of an anxiety attack is the feeling that "nobody gets it". It's the feeling of total abandonment, that you are dying, and nobody realizes it but you.

And where was God anyway? I had just given birth to a baby with Down syndrome, and I had prayed for a baby without Down syndrome, and so how could I have confidence in a God who didn't answer my prayers anyway?

And isn't that what all of life comes down to?

Do we trust God or not?

In our darkest hour, can we really believe that He truly has our best interest at heart, that He is a loving and gracious Father who sees our lives and hears our cries, and wants to give us the desires of our hearts?

Or will we just stop believing altogether.

And this part of the story, dearest Lily, is where God steps in.

You see, He didn't leave me to myself that night. Even though I felt completely abandoned, and I was sure God had forgotten me- He was there. He was listening to my cries, grieving right along side of me, bottling up those tears and holding my hand through the pain and the fear and the grief.

You see, Lily, Mama has a friend, a dear friend who has been through a lot in life- more than anyone should go through. Mama's friend -Denise- was pregnant over 30 years ago with a perfectly healthy, beautiful baby girl. But something happened during delivery- the baby was stuck in the birth canal, and Denise pushed for far too long. The doctor didn't use a fetal heart monitor and didn't know that the baby wasn't receiving enough oxygen in those crucial long hours of pushing. He never ordered a c-section, and consequently Jennifer was born with severe brain injury. Nobody told Denise or her husband that their baby girl had suffered injury during the delivery. Four months later, when Jen showed signs of delay and a worried Mama took her to a specialist...they learned that her life had been forever changed. They were advised to put Jen in an institution and forget they ever had a baby. Denise heard the words "cerebral palsy" and "brain injury" and was told her daughter would never walk, never be "normal".

But today, Jen is a beautiful, fun, and loving young woman. She lives semi-independently in a house next to Gary and Denise; she works at a college, she walks, she reads...and although her life was indeed forever changed, she is the joy of her family, and one of the sweetest people you will ever meet in life.

And your brother Jason married her younger sister.

And long ago, God knew I would need Denise, dear Lily. And I'm crying now, because I remember the first time I met Denise, and heard Jen's story. Because I remember God speaking to my heart that I was going to need this strong Mama some day. I didn't know why, but for the longest time, Lily...I felt that I was going to have a baby like you. I can't say I knew for sure- but something in my heart told me this day would come, and I do believe it was God preparing me.

So when I got off the phone with my midwife, I knew I could call Denise. Because she knew grief. She knew hurt, and the devastation that comes with the loss of a dream for a baby girl, and I needed that wisdom, I needed someone who had walked this way before.

And isn't it amazing to know that God uses our pain, our biggest trials to help others, to be a strength, when at one time we didn't think we could encourage anybody?

I poured out my heart to Denise, told her shameful things, like how you didn't look like my baby, how I wanted you to be pretty some day, and I was afraid you wouldn't be, told her I didn't want to have the responsibility of raising a child with special needs, I was so overwhelmed with my children already, didn't God know this was too much? I told her my selfish feelings- that I wanted to raise all my children and have my "twilight years" alone with your Daddy some day. I told her I didn't want anyone to mock you, I didn't want to see you struggle...I told her embarrassing things, like how my mom used to teach children with Down syndrome years ago, and I hated to watch them eat. I didn't like the thought of you not speaking clearly some day, I didn't want the stigma of raising a child with Down syndrome.

You see how selfish I was, Lily? I was grieving, torn, distressed, and it was all coming out, and thank God I had a friend who had been there.

So you know what Denise did? Just what Uncle Chris did.

She made me laugh.

She told me that life sucks sometimes and how there just are no easy answers. And I cried and then I laughed and said "This DOES suck!! I hate it!!" And we laughed and said that life was so sucky sometimes we could almost cuss!!!

She told me I would get rich if I started collecting a dollar for every time someone would tell me we were a "special family" and that God had chosen to give us a baby with special needs because we were so special. She said she used to get so sick of hearing that phrase, that she had a bunch of one-liners ready...things like, "Well, I'm gonna start praying for a SPECIAL blessing, just for you then!! And then you'll get to have a SPECIAL yellow bus come to your house just for your SPECIAL kid, and they can go to a SPECIAL school, and won't that be SPECIAL??!!" Oh, we laughed so hard, we were so cynical and sarcastic and real...

And it felt good just to be real.

It felt good to admit that I wasn't this saint who just accepted whatever God handed her way, I didn't just rise to the occasion like the perfect pastor's wife I was supposed to be. It was a relief to know it was normal to grieve. And also to know that my grief would have an end.

Because if Denise could laugh and enjoy life and love her daughter and believe God in the face of extreme adversity, then I knew there was hope for me.

And you know what, Lily?

Morning came.

That long, dark, hopeless night had an end to it, and as the sun came up and Daddy rolled over on his bed and said through eyes half-closed: "Are you still in the phone?!?" ...morning came, and I knew I was going to be okay.

And guess what?

I didn't die after all.

And isn't it wonderful to know that there is always an end to the night? No matter what our darkest hours...


Weeping may endure for the night, but joy comes in the morning.

And that, dearest Lily, is your birth story.

Love always,

Mama oxoxox


Unknown said...

Oh my goodness, Patti... I don't know why it's taken me so long, but I just now read Lily's entire birth story. I am SOBBING, but I am so thankful. I can't believe the similarities between our story and yours, even though Roo's actual diagnosis came so much later. The doctors actually mentioned the saline... blood... transfer thing (I've been up since 4:30 so that's the best I can do. ;-) ), but we didn't end up having to go that route. Anyway, I am thankful to hear your story--even though in the back of my mind I have always known that my emotions were "normal" for someone whose child is going through so many issues and who is diagnosed with DS, it has always felt very lonely. To read your words--some of which I have said or written word-for-word--is so comforting. The feeling of being alone, the fear of DS... so many things!!! And to know your love and hope is so helpful as well. Thanks for being so open and honest.

CKopp said...

I read the whole thing. Swear.

Anne of Alamo said...

dang it Patti! it is 3:50am, I am crying and laughing like a mad woman...special..bha ha ha...

Stephanie said...

I can say with all my heart I know exactly how you felt. All those same fears and yes, selfish feelings were in my heart too.

This was a tough post to read because I had to sit here and shake my head yeas!!! To all of it.

I didn't receive Em's diagnosis with a bit of grace. although I had time to adjust before she was born.

this was one of the most heart wrenching but most beautiful and most eloquently written posts I've ever read.

Elissa said...

Patti, Thank you so much for sharing such personal moments, feelings and emotions. Although my first hours with Abbie after her diagnosis were spent differently (she didn't have to go to the NICU until a few days later), the memories are so fresh after reading what you wrote. Many of my emotions were the same, and many were different. But ultimately we got to the same place which is a tremendous, unwavering, overwhelming love and connection to our little girls. :-)

Anonymous said...

Do we trust God or not?
In our darkest hour, can we really believe that He truely has our best interest at heart, that He is a loving and gracious Father who sees our lives and hears our cries, and wants to give us the desires of our hearts?
Or will we just stop believing altogether.
Thank you God, for sending me Patti, and reminding me to have Faith!

gwen said...

Thanks for sharing! The laughter really does make everything feel so much better.

btw... we too love the pride and prejudice soundtrack...listened to it practically everyday of my pregnancy because my then 2 year old insisted

gwen said...

your little girl is adorable!

Denise said...

Oh my..... I think I could have an anxiety attack just reading it:)
Ok I will blog today only for you and it better work!!! Unless you
could just cut and paste this :) God spoke a couple of things as I
read your blog.. so cool. He is Amazing He really is God. He shows
himself mighty and such a finisher of what HE has begun. And if I
were you right now I'd be saying GOD uh... could you hurry up and
finish cuz there aint nothin about this that feels finished:) It's
wonderful that you are writing this for Lily because as you look back you will be amazed at what God has done. It will bring revelation to your life, meaning God will reveal things to you that you cannot see now in the present. It's when you look back that God shows the deeper (very personal) touch on your life. Lily has set you and your
family apart to do an extended work and ministry that will be to
others. It will come naturally by being just who you are.(This is
where I would say to God I dont care about others I'm dying here and I just want you to fix it GOD Could you do that please? Am I not doing
enough?? What is enough any way?? oh that's what Gary would say and I'm sure he did too! Hee Hee! Only you Patti could decipher this email.)
This is not even what I wanted to write, it even sounds super spiritual (even VAGUE) because God has not connected all the dots yet......if it came from someone other than me... who has walked this walk. Seems like God wanted me to say these things just for you. I think you could write a book Patti maybe even a series, I really do. Way to make it
through writing about Lily's birth...... so hard. I have told
Jennifer's story so many times and Yes I still can get emotional. God
revealed to me just this morning how my tears today are not from
grief. My tears are in gratefulness and awe that God kept
me...brought me through the hardest trial of my life and I can look it in the face and say It is well with my soul. I have embraced the goodness of God in a way that not all in life get to .Reading your blog reminded me of yet another work He has done in my life. Thank you. When your book is published you have my permission to put this blurb in there somewhere .(You might have to edit it just a bit).
Happy to be your SPECIAL friend Love ya, Denise

Rochelle said...

Loved reading Lily's birth story.

Isn't it amazing how God gives us people to walk this path with even if we don't know it at the time.

Sounds like Denise is one amazing friend. Thankful that you had her to reach out to in that moment of darkness.

JC said...

Cried the whole way through this...Thank you for sharing this, for sharing ALL your thoughts and fears and feelings in the beginning...I felt ALL of them too, you wrote things I have been to afraid to tell anyone I felt back then because I felt selfish and shallow for thinking them...The "look" of Down syndrome scared me too, I didnt want Russell to look like he had Ds. My mind instantly raced years forward and my heart broke thinking of how he might be treated at school. I was angry with God, I felt abandoned, alone. The last thing I wanted to do was to pray to him! I told my Mom and my Husband to make sure ANYONE coming in my room did NOT mention God to me...I was that upset. I had my own turning point weeks later, I should write about that sometime....
Reading this was hard for me, it brought back so many of those painful feelings. Hearing you describe feeling like you couldnt get enough air, that you were having an anxiety attack...That was me,11 months ago, that was me. I felt that too.
And it is amazing to see how far we have come in our own journeys.
Thank you for sharing this.

Deanna said...

this blog made me made me brought back so many feelings that I haven't felt in a while...I could feel your pain and fear as i read because I have felt that same pain and fear in my life. Very well written and heartfelt. i have loved reading lily's birth story! you know, as hard as all of this is at times, its pretty neat they way we all can meet new people that we probably never ever would have met. so glad that we were able to cyber "meet"!

Kelle said...

Oh, Patti, this was so beautiful. I cried, I laughed (seriously, Osama? Ha ha ha). How cathartic this must have been for you to go back and remember all of this, and how much more it must have deepened that love for Lily. I was so touched by your daughter MacKenzie and how she stayed with her, loved her, and I imagine their bond will be amazing. She is beautiful...she was beautiful from that very first day. Thank you so much for sharing this! xoxo

Ashley said...

It was good to learn more about this amazing family that I love through these letters! I am glad that you have come a long way since Lily's birth. I am so sorry that you felt like that at the time though. We had a prenatal DX so I couldn't imagine finding out after because we were prepared. I love you! <3

Naomi said...

I'm crying... so glad that my mom was there for you that night. She is an amazing woman and i love her so much. I am lucky to have both of you as moms!
Love you Patti!

Unanimous said...

I'm not crying. But I am hungry, probably unrelated.

nicole said...

I can relate somewhat to anxiety attacks. I really have no reason to have them, but I have endured them after the births of our six children. They go along with post partum depression. I read this post and thought, now THAT is a reason to have an anxiety attack. Why I get all worked up, I don't know, but maybe its to make me more empathetic with others. You're right, you feel so alone.

Lily has captured my six-year old Isabel's heart. She said, "I want a baby sister like her."

God Bless

Melissa said...

When the drs first were told us they were pretty sure she had Ds, one of my biggest issues was the look of Ds. Not for me, but for others looking at her. It's so easy to put a label on someone because they look different. And once that label and expectation is there, it's awfully hard to get rid of.