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.


Monday, April 25, 2011

up with down syndrome: chapter 2

one year ago.

All of these photos of me, pregnant with Amos here were taken one year ago today, by me, alone with photo booth on the macbook. They were captured exactly two days before we learned something was wrong. My face looks happy and light in these pictures to me. I remember this day, so joyful with our growing family, and so excited to meet the little one growing within. When I used to look at the Laura in these pictures, I used to envy her ignorance. I envied her lack of awareness at what she was about to walk through and that she didn't have to, yet. I envied her, period. I wanted to go back and be her, many times.

 I thought I didn't look too terribly pregnant from the front.

Fast forward to nowadays, and I look at that Laura with such compassion, with such patience, love, and a fierce desire to reach back through time and just hold her hand. I wish I could whisper gentle encouragements in her ear that you're going to walk through fire soon, but all will be well. And that you can do this. And you will not only do it, you will love it. And rock the heck out of it. Let's go. Chapter 2.

Saturday, May 8, 2010

This last week began incredibly tumultuously with my parents and sister having gone home just before the weekend began. (it was my mom's 60th birthday weekend)

Joel and I are struggling struggling struggling, and me just feeling incredibly in the dark, scared, alone, and mourning. I felt like I was in limbo and not sure where to begin any kind of journey. 

 

Joel was and still is really struggling with having any awareness of how to support me, or how to recognize that he can look to me for support as well, and this has caused a lot (A LOT) of extra strain, pain, stress and tears over last weekend and most of this last week. All I can do is pray for him and continue to attempt to nurture him as best I can at this time. 

 

Energy is at a premium for me - I have great difficulty getting up and down the stairs, even up and out of a chair or bed. Due to the size of my belly and the amount of extra fluid, it affects my breathing and comfort and everything - so you can frequently hear me saying "oh Lord!" when I have to get up to get a glass of water or use the bathroom. Then when I do get up my uterus always goes into contraction - Braxton Hicks, still - but at this stage they are strong and painful so this slows me down even more. Jacob is feeling a little left out being that it is hard for me to pick him up - my body is thinking in many ways it's past 42 weeks gestation, and it has been determined that I am carrying around 10 pounds in extra fluid alone - so it's almost like I have 1 or 2 extra babies in there. Goodness. 

 

As I said my mom celebrated a milestone birthday – her 60th! – back home in Lloydminster last weekend. They put on a surprise party for her which I was saddened we were unable to attend. Her actual birthday day (Monday, May 3) she spent driving in the stormy snowy weather to come back to Calgary to help me, and help us. In the meantime, anyone who is asking how they can help or if we need anything, I am saying FOOD. 

 

I cannot stand long enough to prepare A meal let alone 3 a day, and I struggle with bending, lifting, walking, sitting, laying down and breathing. So... if you feel it being placed upon your heart to help, please make meals (even frozen meals) as we are going to need lots of help for several weeks (baby will be in ICU following surgery for a minimum of 2-3 weeks if everything goes perfectly perfectly well). 

Boom. Side profile. Huuuuuuuge. But still that unknowing happy face. She's so innocent, this Laura. Sweet girl.

My mom is helping immensely, but I don't want to and cannot burn her out as our entire family's caregiver before we have even entered what I refer to as the “really hard part” - the labor, delivery, childcare of our sweet Isaac, Egan and Jacob through that time, then my recovery, baby's surgery, his recovery, and the days and weeks to follow with him staying in hospital while we are between hospital and home, and then bringing our patched up little newborn, my fourth child, home for good (that every family needs support for even outside of complications.) This isn't even to mention the journey for little Amos going from babe in utero to nourished via IV to central line, then fed through an NG tube, then somehow sometime making the switch to breastfeeding, with me pumping all the while. Pray pray pray his little body recovers quickly and his little gastrointestinal system gets the message that all is a 'go!' and that these steps move along without complications and upset.

 

Since we did get to meet with all of the specialists this week: geneticists, neonatologists, pediatric surgeons, and the doctor from the NICU – my heart, mind and spirit were so much more at ease have them answer our many questions and to learn more specifically what everything will look like once Amos arrives. Still a scary & sometimes dark journey, but feels like we are being given lamps to be able to illuminate the way somewhat. I again am so amazed and feel so blessed that the people who work in each of these areas are so incredibly tender and compassionate with us; each one has touched my arm, cradled our hands, and spoken with such knowledge, experience, compassion, and kindness that by the end of the day where we spent from 0745 to 3 pm in these appointments, I felt like my burden was being lovingly shared among all of these people. One comment from the NICU doc stuck with me and gives me a sense that all of these people love my baby: “we will all do our best to take good care of all of you now and especially once your wee treasure arrives”.

 

The doctors have all commanded me to take it easy and this appears to be what Joel is really struggling with how life actually looks and what he needs to be doing with a wife who must take it easy. - over and over they say it - as the possibility of me doing too much and having my membranes rupture (water break) at home and cord prolapse (the umbilical cord rushing out ahead of baby in the surplus of fluid) is very serious, very possible, and is a 911 emergency. Thank God I'm an L&D nurse so I know what to do or what to tell other people to do in that scenario! We have also been made well aware that I may be hospitalized at any point, and held there until they, God, or baby decide 'it's time'. Pray we don't get to that point.

 

I was in prayer and contemplation and changing my mind about having the amniocentesis done (the test consisting of a needle going into my belly, into my uterus to withdraw and test a sample of amniotic fluid for down syndrome and other trisomies (& other genetic defects). I began to get a clear sense that if I knew this little man was going to be a baby with Down Syndrome, then in my labor I could just be excited to meet him just as he is, that I could let go of the fear and see him for just being our baby and not having my first question as he arrives into this world be "can you tell if he has Down Syndrome?". Instead, I felt this profound sense of peace - if I knew, then I was looking forward to just seeing his little face and how much he looks like each of our other babies, or who's dad's ears he has, what his little fingernails and toenails look like, or if his lips look like mine or his daddy's. You know?


A lovely, lovely doctor who took nearly an hour to speak with us explained that he neither recommended nor didn't recommend the procedure. He just explained very gently how I may feel more at ease knowing; simply based on how this was like a trip we have to take - only we're not completely sure which plane we're supposed to be getting on so we don't know which travel book we should be reading even though we already have both books in our hands. He set me at ease and reaffirmed what I had already decided, and validated that what I felt was normal and expected. Joel spoke up and told him “it would really reduce the stress level in our house if we just knew the baby wasn't down syndrome”, to which the gentle doctor very softly replied “and what if he was?"


The room was quiet for a moment.

 

Joel: “Well, then we would make sure to have lots of support around us.”

 

Dr.: “You're going to need lots of support around you.”

 

I nearly cried. 

 

We are going to need lots of support around us, regardless – and I am so grateful that it was this gentle, intelligent, thoughtful and communicative man who affirmed that for me and explained that to my husband with such tenderness. He went on to say “The two of you have a long, long road ahead of you. You will need lots of support around you.”

 

I decided to get the test done. I was incredibly scared. It was painful, and took longer than I had anticipated simply because they had to take a little more fluid out since the baby's skin cells floating around in the fluid would be in a lower concentration due to the high volume of all the excess fluid. 

 

I nearly fainted – Joel told me my eyes rolled back in my head, and everyone who knows me well knows I have weird seizures when I faint. Not pretty or fun. Needless to say, I hung in there, but spent the remainder of the afternoon and evening exhausted, emotionally drained, and feeling a little bit like I was back chest deep in the heavy cement. We will find out the results probably by Tuesday. God is carrying us all this time, I have such a strong sense of that again. Thank you for your love and prayers. Please don't stop yet.

 

At this point, baby's lungs are good to go. I am huge, uncomfortable, but know I can persevere knowing it is best for my newest little sweetie. I have been told that I most likely will be induced around 37/38 weeks so as to prevent the possibility of cord prolapse with rupture of membranes, unless something happens before then.

 

Until then, we wait. And we hope. We pray. We welcome any and all help. And I dream dreams of a little fella filling our house with smiles, coos, diapers, wails, laughter, sleepless nights, and a family with the new baby we have all been yearning to meet. 

 

Can't wait to see his sweet face and tender toes.




Would I go back to being this Laura now, you may wonder? 
No.
Never.
Not in a million years.

Who I am now, today, with Amos, with Down Syndrome, and the new and improved torn-open-and-fixed heart that has been given what it was always missing and never knew it needed... I am ever so grateful. I am so happy. God gave this to me, and I have absolutely no doubt whatsoever that He knew exactly what kind of gift this was, why I needed it, and what it would do for me. And baby? I am so blessed. So very, very blessed.

I love that I wrote can't wait to see his sweet face and tender toes. It surprises me sometimes, to see that I still felt these joyous and beautiful and tender loving things through a time that only looks like darkness when I look back in my memory. Or maybe it's just those scales, you know? They were still on my eyes then, and they're not now. I tell ya, dang, it's bright over here, on this side - of course that time looks dark.

Stay tuned for Chapter 3.
Coming soon. Happy Resurrection Sunday. Scales peeling off anywhere? 






Saturday, April 23, 2011

up with down syndrome: chapter 1: one year ago.



Hard to believe sometimes that it's been an entire year since our lives were changed so dramatically by this thing called Down Syndrome. Amos's first birthday is coming up, and it was in the month preceding his birth that the world and our hearts were split open. If you were to ever search back to the beginning of this particular blog, you'd know that my very first post was when wee Amos was just a wee little peanut growing in my belly, and at that time I had an unbelievably powerful sense that we were on a cusp of change... and feeling destined for something great, that something bigger than us, bigger than anything we had been challenged by or blessed with would pale in comparison to the greatness that would be thrust upon us. And baby, was it ever.



There is no doubt in my mind that being all that is a mama, especially to my wee Amos - this precious cherub babe, full of light and laughter and sweetness and preciousness - there is no doubt in my mind that in becoming his mother, looking into his eyes full of truth as his big brother Isaac says - that scales have been removed from my eyes.

When I read back over posts here and there, I see myself speaking of this in different ways - and it is remains relevant for me because it is... still so... relevant. It is. Other people who have been blessed by this life-changing, soul stretching love talk about it a lot, too - some in ways more directly about Down Syndrome itself, and some more about life and love - how those of us in this club feel enriched as a result.

But for me? It changed me greatly. I am changed. And for that, I wouldn't change anything. I want to talk about this change all the time - in fact, so much because it is who I am. I only know how to be true to it, because it is who I am. It is what comes naturally to me. And it is so flippin' beautiful.

 




This above all: to thine own self be true,
And it must follow, as the night the day,
Thou canst not then be false to any man.

Farewell, my blessing season this in thee!
-Shakespeare

 
Houston, we have lift off.

I have many dreams, other dreams and other parts of me that I will talk about and share, each in their own due time. But right now? I dream of my delicious almond-eyed boy, with his sweet, small and perfect hands, a kissable crook in his teeny pinky fingers, a little gap between his tiny toes, his perky button nose, his surgical scar evoking emotion from places deep within, his soul-gazing stares from speckled eyes, his precious little folded ears perched upon his fuzzy head, his oh-so-sweet soft and cuddly neck, and the hugest and most genuine smile possible. With all things considered, the big kids have asked on several occasions 'why don't they call it Up Syndrome?'. Yes. Why don't we? I know it's named after the 19th century English physician J. Langdon Down who described the condition in 1866. I'm just sayin'.

But I am also aware that everyone else doesn't necessarily know they are still viewing the world from behind those gray scales that once also occupied my vision. You think you can see from behind those scales, and you can. But what you can see when they're removed? Dude, it's blinding.


And I get to bask in it every. single. day.

Can I get an amen?


 



And my big boy, my other little boy and their precious sister are blessed with the privilege of growing up without the scales there to begin with, basking and growing and thriving - in the light. If I feel so greatly changed and want to do something with it - imagine what they can see. 
Imagine what they will do.


I know so many of the characteristics and associations with Down Syndrome - and sometimes I wonder if I am simply wearing a pair of very deep rose-tinted glasses when it comes to my Amos. Sometimes. I have said so many times - if someone had brought this little man into the room when we were given the news that Amos had Down Syndrome, I wouldn't have cried so many tears. I would have known it was going to be okay.



And then I remember back then, back to that year ago when this all began, when this was all so painful - and when I wrote it down to my friends, both as a means to community and support and love, but also as a means to journal so as to not forget. I had wished I had shared it here to begin with, but I was not ready for that then.

I am now. This is the time for me to share my story. From the beginning.

Please bear with me - it will probably be long-winded and too much to read. Its just been begging to be told for very nearly 365 days. Here goes.


The Story of Amos. 
Chapter 1.
October, 2009. I am nearing my 35th birthday. The pregnancy test is positive. I come downstairs and tell Joel with butterflies in my tummy and a shy smile 'I guess we're going to have another baby!' 

He high-fives me. 

Egan announces it in church the next day. 
I am back working in labor and delivery, my dream job as a nurse. Joel is at home with Jacob during my shifts. I seriously love this job. One night shift I encounter my first delivery of a baby with a possible chromosomal abnormality. I remember looking at him, this wee, chubby, precious little boy - I saw him just the same as all the other babies - being fascinated, being so thankful I was growing a babe in my belly, another precious little lovey, and just loving him and wondering how his parents would feel. He was beautiful. His delivery really stuck with me. Hindsight. I order beautiful pettiskirts for Egan and her new baby sister I think I'm going to deliver at home with our lovely midwives. 
In January, we find out through our ultrasound that we are expecting a boy. There is some concern and furrowing of the eyebrows by the ultrasound technician during the procedure, she leaves the room but asks us to stay. I know immediately something is up. I feel the hair on the back of my neck stand up. She is gone for at least twenty minutes. I knew something was going on. I panicked, cried, got scared, and knew it meant something was wrong with the baby. She comes back and tells us 'you can go now.' That's it? That's it? 
When we see the midwife next I tell her of the twenty-something minute wait in the ultrasound room after which I cried when I called my sister. She says Your baby looks beautiful! You're having a boy? Nope, no concerns noted here. Your baby looks beautiful. And perfect.
While at work, I start having contractions, pain, and fear on and off during weeks 20-24. My midwives take me off work for a few weeks to give me some rest. As the months pass, my belly grows so very large - larger than I knew. I keep remarking I don't remember feeling this uncomfortable this early before.

It was snowing that day.

Tuesday, April 27, 2010

 My belly is really big. The rest of me is notsomuch. Hm. Our midwife thinks something might be up.

Appears to be an excess of amniotic fluid. This would be the reason I am looking so large, feeling so much more uncomfortable than need be, and getting new horizontal stretch marks to add to my well-worn roadmap of vertical ones. Today I am measuring at 40-41 weeks - and I am only 33 weeks and 2 days.
I just need some encouragement and prayer that all will be well - Joel doesn't quite understand the implications or my fears or my need to talk or cry (saying 'doesn't quite' is an understatement), and as it sits I most likely will be going to the ultrasound appointment by myself as he has to work. If it turns out something is really wrong, they will be paging the midwives at the ultrasound as it is considered an emergency and I'm not sure what happens next.

I have faith that God is carrying me through this and has His hands cradling our precious little Amos this entire time. It just doesn't take away the little fears and uncertainties that arise in these situations, and I'm honestly just feeling a bit scared. And by a bit I mean more than a bit. I knew something was up.


If you can just take some time to pray for me, pray for us; I will keep you posted. Feeling a wee bit alone right now but not sure I want to talk about it out loud yet, if that makes sense.
My dear friend and den mother Kim sent this later that day. It saved me.
“Grandpa was a fisherman off the coast of Newfoundland, Canada, and somehow I’ve inherited his deep love for the sea–AND for a good storm! Now I have no reliable source to confirm that–he probably DREADED storms–but somehow, I’ve got this wild freak of nature in me that not only loves the rollin’ sea but loves a rockin’ storm too–as long as I’m not out IN it! Now were I OUT on the sea in a storm, do you think I would PANIC? You’d better believe it–this emotional English/Italiano person wouldn’t be having a tea party aboard boat–I’d be scared to death!

As THEY were–the disciples, that is! It’s one of my favorite stories, fright and all. For panic must surely have been aboard that fishing boat, tossed about on the Sea of Galilee, the Savior sound asleep–the sailors wide-eyed in terror. “Wake up, Master, we’re about to drown. Don’t you care!!” And Jesus, calm as He always IS in a crisis, awakens, stands with authority, speaks to the wind and the waves, “Peace, be still” and with one last, wonderful WHOOSH, the wind and waves obeyed! A calm settled around and within these mighty men of the sea as panic turned to peace, peril to protection–for HE, the Lord of the wind and waves–was on board!

He’s aboard MY boat–and YOURS too–let all the devils in hell hear it and run! GOD’S in our boat–and we’re not about to drown–so panic, be gone in Jesus’ Name. HE is present, and “Where the Spirit of the Lord is, there is PEACE”–not panic! Panic comes from the prince of darkness, the pit of hell, to distract, disturb and disengage you from whatever purpose God has for your life. Fear not–let HIS peace cover your mind, body, soul, and spirit THIS day. He’s captain of your ship–and you’re going to make it!"

Scripture: “There is no fear in love, but perfect love casteth out fear…(1 John 4:18.).”

“And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm (Mark 4:39).”

Prayer: Lord, there’s panic in my boat today, and it’s not from You. I need to hear Your voice whispering, “Peace, be still,” to my troubled heart. Quiet my mind, spirit and soul, Lord–let me know, without a doubt, that You are Master over everything happening in my life right now. You are in control, You will not forsake–and I can trust in You, In Jesus’ Name, Amen.”

–by Peggie C. Bohanon. Copyright 2010, Springfield, MO. All rights reserved.



Thursday, April 29, 2010
Complete workup at Maternal Fetal Medicine at the Foot - detailed ultrasound showed a definite duodenal atresia. (the first part of the small bowel - the duodenum - has not developed properly) and hence causing the polyhydramnios. I will be delivering at the Foothills, and then baby will not be able to feed, will need his tummy drained, and will be stabilized in the NICU and then will be leaving for surgery at the Children's immediately following birth. We are going to meet with the pediatric surgeon next week. This is the part that although I understand is completely necessary, I am grieving.
We have been told today that there is an incidence of Down Syndrome in babies with this condition, but I declined the amniocentesis as I don't feel it is warranted at this stage of the game and it really changes nothing.
Because of my stretched out uterus (measuring at around 41 weeks), I am at risk of going into labor at anytime. They want me and babe to hang on as long as possible, but just in case they started my steroid (betamethasone) injections today. I go back again tomorrow for another one.

Sigh - ups and downs - mostly hard stuff today. Thank God for lovely and warm and compassionate people working in each of these areas today (with the exception of one L&D nurse...maybe she's stressed in her own life and needs to be cranky to deal with it.) 

I am in tears at how God is working this out - but I'd be lying if I said I am not scared and mourning and feeling tired. So lovely to have my sweet little Jacob to snuggle into my neck and pour his love into my spirit - then to have my tender Isaac ask if Amos is going to be born soon and Egan come home from school and wanting and needing hugs and honesty with tact as this is an emotional and sometimes confusing time for all of us. 

Joel is up and down in his hopes and fears, knowing ultimately God is on control, but scared and not sure how to feel right now. He held my hand while I got the steroid injection in L&D triage and giggled trying to make me laugh when I was cringing in pain and was asking him to stop asking if I was okay, and he just repeated over and over 'it's okay'. There were so many of those moments today I was so grateful to have him there and to have him be serious when I needed him to be, and tender when I was in tears, and then even comic relief between the visits of the cranky nurse entering our curtained-off space in triage.


 So, all in all - not bad but not perfect. I thought of so many of you today; your thoughts and prayers and words of encouragement carried me through more than you can possibly know today - Kim - you were on my mind with the thoughts of babe going to surgery, and I said to Joel "she has probably scrubbed in on a ton of these" - but the passage you sent me was on a revolving tape in my head and in my heart... Jesus is in my boat, commanding the storm to "be still". What a gift that was to have that just be reminded to me over and over with each new piece of information given to us today, and each new little panic or fear. "Be still".

Thank you for your love. I am in tears as I type this - still going up and down a bit. But thankful that it is what it is and that's all. Feeling blessed to have the opportunities to see this little stinker through the ultrasounds - he is active (very very active), lots of accels and no decels and good variability in his heart rate, no contractions yet, he definitely is head down, and he has a lovely face and fuzzy hair and sweet little chubby shoulders.

Not sure what else to say right now. My belly is so big and stretched, my butt hurts from the beta injection, and I am otherwise pregnancy stuff uncomfortable, but I got to meet a bunch of really really wonderfully fantastic people today who are so where they are needed in these areas of medicine - and goodness are they doing such a wonderful job. So many sweet people with such kind and soft hearts, faces, hands, and everything. God is in my boat, taking care of it all.


Stay tuned for Chapter 2, next time.


(Update): The rest of the story: 



Vintage Clock Giveaway.
The winner of the vintage Big Ben clock, courtesy of www.random.org is Jenne, who said... 
Confession: I check your blog a little more than I'd like to admit. Sometimes I swing by just for the tunes. :) Happy Friday. Happy weekend. 
Congratulations, Jenne! Email me your details at lauraluyt@gmail.com, and I will get your clock out to you.


Happy (Good) Friday. Happy weekend.
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