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 in 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 I had read so much information- old, outdated information, that said "babies with Down syndrome look more like each other than their own families."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 up...my 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?
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 on 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.