It's been ten years since I pushed that little life into the world in an upstairs room of our old Victorian. I spend the night before alone in a bathtub, isolating myself and my baby, keeping this sacred experience our and ours alone.
I knew it was a girl and I also knew she was not right. An ultrasound at 30-weeks hinted that our baby had Trisomy 13--a chromosomal abnormality incompatible with life. That was the only doctors visit I had with this baby. There was no need to go back after that news. My health was monitored by my midwife, but I only remotely cared. I knew I was healthy and I knew my baby wasn't. I labored alone in that tiny bathroom with only one hope--please let her be born alive, please let me have some time with her.
The sun rose as if it were any other November day. My husband checked in on me and I send him away. Terrified, he packed up our other four children and left the house for the day. When all was quiet, I creaked open the bathroom door and got into bed in the room across the hall. Just me and my girl, alone.
When we got the diagnosis of Trisomy 13, we were stunned. After having two healthy boys, our third child surprised us with Down syndrome (a chromosomal abnormality of the 21st pair) and our fourth with congenital defect that needed immediate surgery and hospitalization. We felt like we had paid our dues and then some. Why another crisis? How could we endure it?
But that's what life does--hands out situations and we deal with them. Even when we think we can't, we do it anyway because there is no other choice. I brought that baby into the world and felt blessed that she was alive, even if it was for a short time. In times of intensity, you have to live in the moment because the future is too hard to bear. Breathe in, breathe out...one foot in front of the other--that's how you get through. Existence is reduced to its most basic state.
Now, ten years later, I sit on a peaceful morning and reflect back. Man, that was hard.
But it was also beautiful and full of grace. I not only birthed my second daughter on that day, I birthed a new version of myself. She changed me.
Oh, to the unknowing eye, everything looked the same--exuberant kids running through the house, laundry piling up, groceries waiting to transform--but it all looked different to me. The prism through which all things filtered shifted, and my perception of the whole world changed. There was a sacred bubble of time when almost everything I saw took on a mystical quality. I’d see a bird at the feeder and would need to stop and stare in awe (Look at that thing, will you? It’s miraculous!)
My raw and open wound made me more vulnerable to beauty. It flooded in and left me dazed.
I sit now and write about it and yearn for the intense wonder of it. But the true gift of that time is that my prism never completely shifted back. Ava allowed me to live in technicolor for a short time and I remember what that feels like.
Oh, it’s far too bright to live there forever, so time graciously dimmed things a bit for me. But life can still dazzle me when I decide to pay attention in a way that I didn’t have access to before. It feels kind of like a secret, wondrous room that only people who have suffered are allowed admission to, and if you haven’t experienced a certain level of despair, you can’t have the key. (Nor do you want it!)
But I cherish that key and take it everywhere I go.
And on the grayest days, I reach for it, and unlock the wonder of the world.
I saw grief drinking a cup of sorrow and called out, 'It tastes sweet, does it not?'
'You've caught me,' grief answered, 'and you've ruined my business. How can I sell sorrow, when you know it's a blessing?’ -Rumi
I had lunch with one of my most beautiful friends today. I can always rely on her to dig in with me, to cut right to the heart of things and talk about what matters.
But things have been heavy lately and we were feeling it. The media, the school system, our leaders...where do we go for inspiration? Maybe we're not looking in the right place, we pondered, and we dug a little deeper. Try as we might, it just wasn't coming. The comfort of each other's presence would have to be enough today.
When I got home with the kids, we all headed outside on this glorious day. My friend and I touched on the power of appreciation, but we remarked that we needed a bit more to shift us lately...but what? I walked around the beautiful gardens that I inherited a year ago, and did my best to absorb all the beauty.
Ah...it was working, I felt a little lighter.
Then I glanced up and saw it. I let out a gasp (I really did!) and the boys came running. It wasn't there yesterday, but here she was today in all of her splendor: the first peony.
The gift of more buds were on their way, so I took the liberty of snipping this one, precious flower.
Then, as I do every year, I find Mary Oliver on the shelf...
This morning the green fists of the peonies are getting ready
to break my heart
as the sun rises,
as the sun strokes them with his old, buttery fingers
and they open --
pools of lace,
white and pink --
and all day the black ants climb over them,
boring their deep and mysterious holes
into the curls,
craving the sweet sap,
taking it away
to their dark, underground cities --
and all day
under the shifty wind,
as in a dance to the great wedding,
the flowers bend their bright bodies,
and tip their fragrance to the air,
their red stems holding
all that dampness and recklessness
gladly and lightly,
and there it is again —
beauty the brave, the exemplary,
Do you love this world?
Do you cherish your humble and silky life?
Do you adore the green grass, with its terror beneath?
Do you also hurry, half-dressed and barefoot, into the garden,
and exclaiming of their dearness,
fill your arms with the white and pink flowers,
with their honeyed heaviness, their lush trembling,
to be wild and perfect for a moment, before they are
And just like that, it shifts. I get a glimpse of Grace, wild and perfect for a moment.
Thank you, my dear Marys.
This guy turned 18 today.
Not a day has passed in those 18 years that I haven't stopped and appreciated the blessing of him.
He was my "easiest" baby and has DEFINITELY been my most delightful teenager!
Read more about his magic here:
You are adored, Kelly.
I cried for my mom today. She died 12 years ago today and I was glad of it.
My mother suffered with dementia for 10 years, so she's been gone to us for over 20. When she died, I was giddy. She was finally free! The relief of it was the only reason for my tears.
So today, on this damp and misty morning, after my middle son walks down the path in the dark on his way to school, I turn off the lights again, light a candle for her and sit as the sun slowly rises.
And I remember...
~ Her walking through the halls with her hands in the air, stretching and singing "Freedom!
Fre-e-dom! Freedom is a state of mind!" (a song from our elementary days that I'm now glad she imprinted on my memory)
~ or crooning, "The first time ever I saw your face" to my cherubic little brother as she gently removed something from his nose, while he beamed back at her and sang, "with the boogers!"
~ Her strength and skill on the tennis court and her brisk, duck-footed walk with her arms swinging high. Her body was always strong and healthy. I used to think that was enough. I think maybe she did too.
~ I know just what her wavy hair felt like, and her muscular back and even the point of her pinky toe, as I spent many days with those feet on my lap, pleading for my small hands to reach out and rub.
~ The slight overlap of her front teeth and even the smell of her breath. These are the things a child remembers, and it makes me wonder what I will leave my children with.
My time alone runs out and the memories retreat. I get the second round of children up for school. I leave the candle blazing and answer their questions. I tell them a few things about the grandmother that they never knew, and try be a little kinder as I prod them out the door.
And I wait to feel her with me. Please let me feel her with me. Please.
I only have to wait until I am alone before it comes.
I have dropped the kids at school and am headed to my favorite hike with my dog in the back of my van. I turn on my music and the song comes on--one I have never before associated with my Mom--but now I have to smile.
It's called "Freedom".
I always cry when I hear this man play. I never really quite know why. One of my sweet 10-year-olds wrapped his arms around me as I wept when I forced them all to watch one of his performances online. He held me and looked at my face confused and concerned.
"No!" I said, "don't look at me...watch him! Look! Don't you see??"
He released me and shrugged his shoulders and walked away.
My Mom would know what I was talking about. She'd feel it, too.
A few weeks ago I found out the artist was playing not far from where I grew up. I briefly thought about going, but the concert is mid-week and over two hours away from where I live now. Besides, I don't know any other friends that are fans. He's kinda been my secret crush.
But for some reason, I impulsively bought a ticket to the show yesterday. I just wanted to. I had no idea how I was going to get there, who was going to watch my kids or how they would get to school the next day. I just felt compelled to buy it.
Now I know that I won't be going alone. It may sound corny, but not to me. My Mom will be there with me. The venue is in of her favorite spots and she'll be happy to visit again. We'll watch this beautiful man perform and, together, we will weep.
originally posted in September, 2013 on my previous blog
The monologue this morning included a pear and a water balloon that were left on the kitchen counter. Grethe (Greta) was in her element as she created a show. Her three brothers watched and laughed, rapt.
Its pretty much the same every day. When Grethe wakes up, the fun begins. There is a swirl of energy around her from the moment she wakes up until she (thankfully!) falls off to sleep. And do not try waking this child, her body instinctively knows that some good quality sleep is needed for the show that must go on the next day.
Grethe is fun to be around. She is lighthearted, bursting with love and almost always kind. Her teacher once said to me, “You know when frost covers a leaf and the sun hits it just right? That’s what it’s like when Grethe comes into the room.” Her Dad and I secretly call her Sparkle.
And what it like living with Sparkle? Absolutely wonderful!
At the end of a long day, when we are trying to gather enough energy to herd four reluctant children off to bed, the incessant sparkle can turn into a glare. Here is an example: The twins are freshly clean, teeth brushed, jammies on and picking out their books for the night. Suddenly from the other room they hear, “Jason! Jason! Get over here right this minute!!”
No one in our house is named Jason.
The boys hear the call of fun and they drop what they are doing and follow her command. All the momentum of the nightly routine is lost and I have to re-herd them once again. I tell Sparkle to turn it the hell off already (well, I don’t say hell, but I want to) and go to sleep!
Grethe’s older brothers are no longer under her spell. Seeing their beloved twin brothers dressed up in their sister’s old baby clothes can spark a fight that Mother inevitably has to step in and mediate. After I calm my 17-year-old down, he asks in wonder, “How does she DO that? It’s like they’re hypnotized or something!”
Today is my girl’s 11th birthday and she was up with the sun. No sleeping on this important day! She went off to school with a skip in her step and a flower for her teacher. When I finally had a moment alone, I looked up at the beautiful, blue fall sky, breathed in the crisp air and cried. The combination of memories, beauty and intense gratitude was almost more than I could bear.
Grethe came into the world on a spectacular fall day. After two boys and the surprise of Down Syndrome with the third, I was hoping for an “uneventful” birth and secretly wished for a little girl. The birth itself went smoothly. She was born at home, as planned, but seconds after her arrival the show began. The baby girl I had been waiting for struggled to take her first breath. I watched helplessly as the midwife stimulated her and then gave her oxygen. My body continued on with the final stages of birth as my mind tried to process what was going on around me. All the people in the room were suddenly in full crisis mode and within seconds my baby was rushed out the door with her father. I was left alone with a birthing assistant to finish the mechanics of the job at hand.
Grethe was rushed, horns blaring, to our local hospital less than two miles away. I was able to meet them within the hour and the scene I walked into is every mother’s nightmare. The room was packed with white jackets and people barking commands. I could hear my midwife repeating, “CALL THE D.A.R.T., CALL THE D.A.R.T, CALL THE D.A.R.T!”
As the most experienced home-birth midwife around, she is highly respected, but not always by the professionals in the white coats. Her request for the MEDI-VAC life flight helicopter (the D.A.R.T.) was ignored as the chaos continued.
Eventually a nurse recognized me as the mother and brought me into the fray. I watched as the frustrated doctor tried to help my daughter breathe, I listened to the intern shout out for a priest, I saw the bewildered look on the young pediatricians face. Someone touched my arm and I turned to see a familiar face. She was an acquaintance of mine who was a hospital volunteer. She held a Polaroid camera and asked me if I wanted her to take a photo. I remember thinking she was insane, but I must have nodded.
Now, with the buffer of time, I realize that she realistically believed that my baby was going to die. She wanted me to at least have one photo.
Finally a skilled anesthesiologist entered the room and immediately accessed the situation: this small town hospital was not equipped to handle the crisis before them. The D.A.R.T. was called and within minutes, my baby was once again taken away.
With our baby gone, my husband and I stumbled out into the blinding sunshine of the hospital parking lot. We were not allowed on the helicopter and now it was up to us to chase our baby. She was being taken to a larger facility over 60 miles away. We also had three young boys eagerly waiting to meet their new baby sister at home.
This is when adrenaline does it’s best work: move forward, move forward, move forward.
Hours later we are settling the boys into bed at David’s House (www.davids-house.org), a magical haven located close to the hospital, designed specifically to meet the needs of families with children in crisis. Our baby was now in competent medical hands and a diagnosis had been made: Grethe had a congenital diaphragmatic hernia. Her diaphragm did not completely formed in-utero, leaving a hole which allowed her bowels to migrate up into her chest cavity and sit on one of her lungs, which in turn hindered its development. Chances of this happening to your baby are as rare as 1 in 5000. Even this more advanced hospital did not treat this condition. Grethe would need to go to Boston, two hours from our home.
When the lights were out and our children asleep, my husband and I held each other and wept as quietly as we could. Soon we heard the unmistakable sound of a helicopter overhead, and we knew that was our girl.
Grethe spent an entire month at Children’s Hospital of Boston. The first two weeks of her life were in intensive care. The first two weeks of her life we were not allowed to touch her.
It was such a surreal, intensely stressful time, I struggle to remember it all now. but I will never forget how amazingly strong that tiny baby was. Every nurse that dealt with Grethe commented on her: “She’s a feisty one”, “Oh, I love it when I’m assigned to her!”, “What a beauty!”
At the time, I brushed all the comments aside, but the 11-year old Grethe absolutely loves to hear the stories.
When we were reaching the four-week mark at Children’s, I started to get a little aggressive with the doctors and began pushing for Grethe’s release. One exasperated doctor pulled me aside and said, ”Listen, I’ve seen some children with this condition stay here for up to two years, so cool it!”
Two years?!! I was stunned, but undeterred. I wanted my baby girl home with her brothers. Thank you, thank you, thank you for saving her life, but she needs to be home. NOW. I know she is good to go. My girl needs to be in the comfort of her own home with nothing but love around her. Enough of the lights and beeping machines and well intentioned nurses. Enough.
Reluctantly, the doctors signed her release papers.
And she never went back.
I wrote that piece four years ago. Since that time, we have learned that Grethe’s rough entry into this world was not without consequence, and she is challenged by a significant learning disability. We have also moved from her childhood home and she has changed schools twice.
She has faced discomfort and unkindness with a grace that I am in awe of. This child is wise and has a huge heart. She is kind and compassionate, even when those around her are not.
My heart bursts with love for this glorious person. She is one of the few who can make me laugh a good, hearty laugh and she has brought me to tears with her strength.
Today, 15 years after her auspicious birth, I once again step into the crisp, autumn air, tilt my head toward the heavens and whisper my deepest prayer:
Thank you for the gift of this radiant being.