Thursday, April 28, 2011

up with down syndrome: chapter 3: the day.

the day: one year ago.

Monday, May 11, 2010, started out as another day where Joel and I had to go for yet another scheduled ultrasound to monitor the health of our little son in utero, the sixth ultrasound in the past two weeks. Had we known the weight this day would forever carry in our hearts, and in our story, perhaps we would have done something differently. Perhaps we would have looked back, and surveyed all God had already blessed us with and had trusted more deeply and with more abandon.

Our wee Amos. 35 weeks along. I was still in a state of shock having only learned less than ten days prior that he would die without surgery to correct a problem with his tiny bowel - a duodenal atresia - and that this problem was causing me to produce an unbelievably excessive amount of amniotic fluid. He was swimming in so much fluid, there was so much concern that labor and his delivery were imminent. I had a strong sense of faith that he was not coming anytime soon soon.  


Had we known what was about to take place that day, Joel and I perhaps would not have argued and fought nearly all the way to the hospital where our appointment was. He was tired, hungry, worn out, and stressed about missing so much work, and about me being sad about the baby, and the pregnancy complications. He had recently started another new job literally the weekend before we learned something was amiss in this pregnancy; that our new baby was going to need surgery to save his life. He had missed as many days of work that I had had appointments - this was his eighth missed day out of ten work days - that was how many days we were scheduled to be at the hospital, in various clinics seeing various specialists and learning on the fly about how our lives were being thrown a heinous curve ball that was the wee infant growing within my body, and how without God leading us to these specialists, our precious baby would die. In our pain, we were not able to function as a team. This is quite possibly the biggest and most painful struggle of our marriage - that when faced with strife, we break down instead of falling into each other. This pains me even to write about here - as it is still so freshly... painful. It still hurts. This too shall pass. 

This visit, like the five that preceded it, began with the walk from the parkade to the elevator to the hallway to the waiting room. Once my name was called I was ushered into the back to have the ultrasound and see our sweet little one floating and squirming and sucking and kicking. I fell in love every time I would see my baby. Every time, even in the pain of knowing he needed surgery. During these ultrasounds, with the exception of one time, Amos never did the practice breathing as often as they'd like to see him doing it, so we'd have to be sent for a non-stress test next door afterward. We were familiar with the wait in a teeny cubicle with a curtained door. Outside of these cubicles were photos of babies, oodles and oodles of babies, some smiling, some sleeping, some super preemies, some wee and some as toddlers - Joel and I together passed the time giggling at some of these babies and their parents in the photos. One family all had mullets, mom, dad and baby. I remember those mullets with a weird taste in my mouth. Probably because of this day.


Goodness gracious, that belly looks so unbelievably heavy. It was.

We were in the cubicle, and Joel wanted to sit on the bench instead of letting me sit, seven months pregnant with two or three times the extra fluid. Seriously. It started as a silly argument from a tired cranky man that led me to tears and sighing heavy sighs. I whispered silent prayers and with plucked-up wisdom sent Joel away to eat something so that he would not be so grumpy. I left the curtain open because there was really nobody else left waiting in the room - it was blessedly and peacefully silent in the tiny cubicle as I waited for my name to be called into the non-stress test room. It was now lunch time, I was hungry by now too, and the office seemed quiet. I could hear a couple of the receptionists heating their lunches and bantering about their children at home and at school, and the snow falling to the ground. I wondered what Jacob was doing at home with Grandma, and was grateful Grandpa was here today. I looked up just in time to see the kind and soft spoken doctor who had spent time with us last week do a double take when he saw me sitting there. He seemed to take some compassion on me, sitting waiting alone, and asked me if I'd like to join him in his office. I honestly thought he was giving me a more comfortable spot to sit in and wait, with some company, rather than the tiny bench in the cubicle.

He said 'I see you decided to have the amnio done.'

Me: 'Yes'.

Dr. (softly): 'There's a problem.'

And I thought immediately, remembering the rolling-back-of-my-eyes-near-fainting-experience, and all of this went through my head in a split second they didn't get enough of a sample of cells because they are too diluted because of all of the extra fluid. They can't tell anything, we're not meant to know, our baby is fine, and I am not repeating that test. I thought all this as I replied 'Oh?'
Dr.: 'Why don't you sit down?' and honestly, I'm thinking he is still just being kind, offering this lady with an unusually huge pregnant belly a comfortable seat. And I didn't write it down, but as he opened up a folder with papers, with test results, and he passed the paper to me to see, my eyes wildly scanning to figure out what in the heck is happening? I remember him going on to say something like 'I'm sorry. But there seems to be an extra copy of chromosome 21 in the cells that were taken in the sample.' 

And with that, the breath left my body.

My face got hot.

My knees buckled.

My eyes, still darting, wildly, scanning with urgence, something, anything that would tell me something different. Eyes searching this piece of paper with my name on it and words like cells are that of singleton male fetus 98% of cells show three copies of chromosome 21 and I nearly vomited.

My throat clenched. My jaw, my neck, my right hand and my forehead clenched, frowned, and my jaw dropped. Tears. Flowing. What? What? What just happened? Am I seriously hearing this? Am I seriously in this room with out my husband hearing this? SERIOUSLY?

Heart breaking. Gasps, sighs, over and over, and immediately his voice was on a tape in my head 'There's a problem, I'm sorry' 'There's a problem, I'm sorry' 'There's a problem, I'm sorry' 'There's a problem, I'm sorry' and Oh God why are You doing this to me? and Where the hell is Joel? I can't believe I'm hearing this without Joel! Dammit! I cried and frowned and he handed me kleenex and I cried and just kept saying I can't believe this I can't believe this I can't believe this and my mind went to the family photos we had booked with our incredibly talented friend Mel Davis and I though awful thoughts like 'no way in hell am I getting beautiful family portraits done with a retarded baby' and the tears flowed - oh my goodness I didn't know any pain like that kind of pain. And I thought am I going to have to tell Joel myself? 
Oh. My. God. 
What did I do to deserve this? 
Why are you punishing me? 
Is it because of some sin in me? 
Is it because of sin in Joel? 
God, please, no, please don't do this, please rewind today and let's go back to just the baby needing surgery, please please please. Oh God why are You doing this to me? 
Where the hell is Joel? 

And then Joel walked in. 
And he knew. He told me later that he knew as he was walking back up the hallway from grabbing something to eat, he knew that if I was off in some weird room somewhere and was crying, he would know that our baby had Down Syndrome. He knew. And we fell into each other. I sobbed, and sobbed, and clenched that kleenex in my fist and sobbed some more. Time stopped. I thought our lives were over. We were having a special needs baby. 
It wasn't just surgery. It was a lifetime.
Yuck. 
No thank you.
I don't want this.
I want to go back to my perfect children and my perfect life of my sweet boys and my girl at home, my beautiful Isaac and Egan and my sweet Jacob who is little and perfect and oh my God why? Now my two little boys won't be growing up together, eighteen months apart, now one will grow up and one will be broken. So many evil and angry and deeply pained thoughts swirled and raged and clambered through my heart and my spirit in those moments. We cried and cried in shock and disbelief and the doctor offered us a voucher for a taxi ride home; we were confused because we had brought our own vehicle there, but he said 'sometimes people don't want to drive when they get news like this.'

News like this.
'There's a problem, I'm sorry'.
And we cried some more. I don't remember a lot.
At some point we went home. 
And told my parents. I couldn't even speak.

I felt like I was neck deep in drying cement, and being asked to swim harder.
I needed to reach out to my friends, my support people, my newly created prayer circle. 
I wrote this to them.

I am feeling very much in a scary place again; we received our test results back and we learned our little Amos has down syndrome. I am in and out of how to feel; I am still in shock, crying a lot, feeling a huge sense of uncertainty and fear of the unknown.

I am just not comfortable with how to tell people, so for me this is very private and so very, very exhausting.

In the middle of it all, right now, I am mad at God. I know a day will come where this is well with my soul, but today is not yet that day.

All I can do right now is sigh. Cry. And get through each moment as they come. Tomorrow and the next day and the next week and on and on are too big and too scary right now.

I am not really answering my phone, and really right now I don't even know where to begin for what to ask for in prayer. Right now I am dreading the thoughts of gossip and pain and cruel jokes and all of that garbage.

I guess that people don't tell us what they think we need to hear - that they can just be silent and let us speak when we're ready.

I hurt.

Goodness, did I ever hurt.


After coming home, Meaghan came to mind – Meg, my dear friend from nursing school with a heart of gold that is about as big as a mountain, Meg who has a dear little brother with down syndrome. 

 

She had been calling and asking if I wanted to talk – and I just wasn't ready.

 

Until today.

 

I wept into the phone – she wept in response. 

 

She doesn't work Mondays (I had no idea, God works it all out) and she came over. She sat with me and as she always always has – poured into me - love and honesty and acceptance and permission to be mad and sad and blessings and strength and so many other things. I love this girl – and although I am reeling and furious and confused, I can see how God again led us to each other and facilitated the bond and trust and love we have between us that started four years ago. Thank you Lord, for creating Meaghan – thank you for her tender heart, her loving spirit, her desire to serve and her willingness to love, protect, and care for me and everyone around her.

 

Tuesday, May 12th - Awake at 5:27 a.m. 

 

Start crying. Can't stop. Tears streaming down my face, my body wracked with deep, sorrowful sobbing. I need to snuggle up to Joel; I need to feel some protection, some comfort, some love that this is not happening to me alone.

 

He tenderly engulfs me in his arms, wrapping himself around me, kissing the back of my neck and telling me over and over “I love you, this will be okay. I love you so much. It's okay to cry. I love you, this will be okay.” I am choking back tears, my face wet and my heart breaking under the immense weight of my fear, my dread, my pain. God is doing a miracle in Joel's heart, in Joel's spirit, and Joel's attitude. Thank you Jesus. Joel is the man I need, God is helping me be the woman Joel needs, and through this we are reconnecting and discovering a rekindled love and respect and passion for each other. 

Joel is incredibly kind and loving and patient all day, all evening, all night. I feel blessed to have his love and care again – and he reads, in my dear-friend-who-is-my-angel Steph's presence, an incredibly tender and loving and sweet note to me that he has written about the new journey we're on expecting this little baby – and it leaves both Steph and I in tears, openly weeping as it is so truthful, so beautiful, so tender, and filled with such love. Thank you Joel – thank you Lord – thank you thank you thank you.

 

I go to bed a little less heavy in the heart, and my husband who is loving on me helps me carry my heavy belly up the stairs.  

 

Wednesday, May 12, 2010 – 6:16 a.m.

 

Up before my 7 o'clock alarm for what feels like the 6th or 7th morning in a row. Still reeling from Monday's news – but feeling a little more able to process it, to accept it, and maybe even celebrate it a little, a little tiny bit for a little tiny moment. Down syndrome is not at all what I had prepared for, even though I thought I had. Goodness.

 

My belly is so sore. It is hanging over my pants, over my pubic bone. The skin is stretched so tight, so taut, that it is shiny, so very reddened, and full full full of new and painful stretch marks. It feels like a burn, and if someone inadvertently bumps into it (which is fairly likely; it IS huge) or brushes me in passing, or when Jacob climbs on me

(aaahhhh, that hurts)

or scrapes his little toenails in bed on me – I can nearly jump out of my skin. Even sitting here, typing this – it is tender and sore and just so so stretched. My clothing hurts to be on top of it. It's been weeks since I could sit with my legs not on either side of my belly. There is just no more room for that. 

 

Stephanie, my dear sister Sarah, my sweet sister in law Adele, who also has a sister with Down Syndrome – spoke with each of them on the phone for the first time yesterday – let the words out of my mouth “the baby has down syndrome” - the words that felt foreign on my lips, but I spat them out, in a sense, and waited. Waited to hear the response, not knowing what they would say, what I wanted them to say, what I didn't want them to say. God is leading me, I feel I am being carried by Jesus during this particularly difficult and tender time – and I am being prompted as to who to call, when to call them, and when to just not answer the phone. I still feel I need my space and I need my privacy. 

 

Joel was the one who told Steph – he is dealing with this, to me, so much more positively and comfortably than I am so far. I couldn't talk on the phone the first night we knew – but yesterday morning I could. Steph had lovingly given me permission to not answer the phone. What a blessing good friends are. She cried along with me, weeping at the shock of it, the disappointment, the unexpectedness, and the reality of how it changes everything. 

 

She then said something I, in my anger and fear and disappointment wasn't ready to say and feel yet: 'I love this little baby, Laura – I can't wait to meet him and see his sweet little face.'

 

My body shook painfully with silent sobs – my stretched belly hurts immensely when I cry, try to yell, cough, or laugh, even. A little glimmer of light crept into my heart – somebody loves my little defective (this is my anger talking) baby – Steph loves him already, even knowing my secret, my news that is causing me shame and embarrassment. My little baby (that in this I feel detached from) is loved. Thank you Jesus, for Steph's words and for her love for my baby. I am so thankful for that love. 

 

I am crying again. I cry all the time these days. Where oh where will all of my tears and this fluid come from? I feel as though I should be drying up into a shell of a woman, broken and scorned by Down Syndrome.  

 

Still, the glimmer of light remained. Somebody loves this baby. I can sense that I do, I will, too - but I am just so mad right now. In some moments. So mad. I utter horrible things, to my mom. She bears them silently, and without judgement, as if she knows I just need to go through this ugliness to get to the bright place waiting on the other side - where Meg is, where her parents are, where Adele and her mom are, each of their families touched by this extra chromosome. I still wish I didn't have to do this.

 

It is time for me wake up Isaac and Egan for school. God help me be the mother they need me to be right now – give me strength and wisdom and patience – Lord be with Egan; she is stressed and struggling with things I am not even completely sure what they are, but I feel and can see her pain – God give me and everyone around her complete and huge tenderness to allow her to just be the little girl she is, the beautiful and perfect, tender and loving, immense desire to 'help', little little person that she is. Her intelligence is great so she is often expected to be so much more than she may be capable of. God – help me be the best Mom for Egan I can be. Egan is on my heart in a very, very big way – so help me meet her needs, help me exceed her needs, and pour my love and Your love into her so it overflows, and she is okay. Yes, so she is okay. Thank you Lord.

 

Amen.

 

Saturday, May 15th

 

I just read a blog of another mama's experience with her learning the news of her new baby's down syndrome. (this was the day I was introduced to Kelle Hampton. Her birth story that propelled her blog from 100,000 hits to over a million in less than 7 weeks. Amazing.)

When I read Kelle's story? It sounded like me talking. Tears flowing down my cheeks, down my neck, soaking my shirt and down onto my belly. My body again wracked with deep, sorrowful and aching aching sobs. Jacob sees me, wet-faced, hears my crying, feels my sadness.

 

Today is only he and I at home, and I was allowed, in that, to cry out loud – to allow my voice, my spirit, my heart – to allow them to scream, to cry, to mourn what is much like the death of the baby boy I was expecting; the baby who, at this point to me will not have his own face – he will wear the face of down syndrome. Jacob climbs up onto my lap, nuzzles into my neck, and gently strokes my skin. He stays there. Seriously – over an hour - a seventeen month old - he ministered to me, nurtured my broken, aching, raw, angry raging and painfully shattered spirit - holding onto me, loving me and pouring his loving spirit into me during such a painful, raw, and difficult time. 

 

I needed to and continue to need to allow my broken dreams, my thoughts and plans for the future – to begin their journey away from me. It's hard. It's much more difficult than I know how to do. I want to run away from this. I want to leave the pain and shock and whatever our lives will look like with this baby behind. I don't want to do this. I don't want to do this. I don't want to do this.

 

But it doesn't end there. Sweet Jesus, it doesn't end there.

Amos, I'm sorry again for any words, thoughts, or feelings that were in me or came out of me in my pain. You are such a precious child, such an infinitely precious gift - I can't look at you and not see Jesus. I'm so sorry it took me any time at all to get to the love I feel for you, but know this: You are loved infinitely, beyond measure, and are the most wonderful, beautiful and precious baby I have ever, ever known. I am smitten with you. Entirely, decidely, deliciously smitten.

 

I thank God for you. You precious, wee thing.

 

Come back again for Chapter four. It gets better. Deliciously better. 

 

Bless you for reading. You bless me by reading.

You bless Amos and others like him by reading, and by being changed, in some small way, like I have.

 

Thank you.


13 comments:

  1. You wrote. I cried. Thank you for honesty. Thank you for showing me another part of God.
    You know the depth of our "relationship" but in spite of that, I must tell you that I love you.
    You are a sensational writer, an inspiring mother and an honest lover.
    Thank you.

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  2. got the littles started on homeschool,
    got the baby a bowl of cheerios,
    fed him cheerios & sobbed reading this...
    He's reaching out his tiny hand for more.
    Me too.
    *thank you* for writing this.

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  3. Raw. Inspirational. Beautiful.
    I am a firm believer that these little people choose their parents before they are born into the world.

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  4. I remember the day you called. I love reading your blog, sister. I am missing you a lot today. Wish we lived closer...I can't wait for the beautiful chapter 4.

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  5. With heavy sighs, I'm whispering; one hand over my mouth, the other clutching my heart, "wow...."

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  6. oh Laura...thanks for sharing in honesty the incredible journey you went/are going through...well written dear friend, well said.

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  7. Wow Laura, thanks for your honesty. It's hard to imagine those feelings about sweet scrumptious Amos but totally understandable. It would have been easier to have a flash forward but you would have missed out on some huge growth and wisdom. You can be an inspiration to others going through similar circumstances.

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  8. Wow. You are inspiring. If you don't mind my asking, how did you meet your husband?

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  9. Unbelievably painful and so honest!! I had no idea of all you were dealing with then. You guys survived that ever so difficult time together and are still going strong. Beautiful, unconditional love is all that remains! Love you guys. Love your blog.

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  10. ahhhh I remember wishing I could go back to being ignorant of the painful news. Envying who I was before I heard.

    Seems like those of us who fall wildly apart with the pain (or admit to it) are the ones who end up being wild about our children who are perfect just the way they are.

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  11. Kudos again for the honesty, it is incredible that our hearts can make it through that immense heartache. I go right back to Ola's birth reading this, I cannot imagine having to add surgery to the news of Ds as well. It was enough on its own.

    On another note...whoa Belly!

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  12. This has answered one of the questions I've been wanting to ask. I wanted to know if you knew before Amos was born. I can't believe how HUGE you were, and how REAL you are in sharing. It is no doubt that you adore Amos with every fibre of your being. But I do know what it's like getting a diagnosis for one of your children that makes a difference on both of your futures. Medically, Emotionally, Intellectually.

    Besides my physical complications in this pregnancy, there have already been complications for our little one, and I keep wondering if our "meeting" is to help prepare me for news such as this. Or, if our meeting is so that your experiences will encourage me to find beauty and delight in my children as wonderfully as you find delight in yours. Thank you. Bless you. I look forward to reading more of your blog. But I am going to have someone bring up a fresh box of kleenex, as the hankies are all dirty again...

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  13. I have no words...I just sit in awe, a lot of us have been in that place...it's part of the journey...i love you friend. Blessed to read this...and it only inspires me more to get our story out there...look how far you've come. what a beautiful journey. i wanna hug you real big!

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make no mistake, I am smitten with your words. please say hello, or pour something out - you will make my heart happy.

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