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.

4 comments:

  1. That seems so long ago, Laura, and not so long ago at the same time. I remember those messages, but can't remember if they were e-mailed or on facebook or ???? It was an honour to be able to hear your heart then and it is an honour still today.

    You have got a great story to continue to share with the world. May the scales dissolve from the eyes of others as they peek into your life. May hearts, attitudes, and mind sets be challenged regarding all sorts of prejudices and stereotypes. May there be a movement toward love and peace.

    Your sweet Amos is in good hands - yours, Joel's, your lovely older kidlets', and, of course, the Father's. I hope that 5, 10, 15, and 20 + years from now we are still connected - despite time and space - and I can watch the growth of your sweet kids (all 4) and see just how the Lord is using you and them.

    God bless you this Easter season, Laura. I'm so glad to know that the tomb was empty.

    ReplyDelete
  2. "And I get to bask in it every. single. day.

    Can I get an amen?"

    Yes, here is a big one from me! AMEN!

    It brings back a lot of my own memories, reading your Chapter 1. God is so good. My Coral is His representative in my life. Loving me always. And your Amos is the same.

    I'm looking forward to Chapter 2!
    Praying the hope and joy of Easter is filling your heart as never before, my dear blog-friend!

    ReplyDelete
  3. Beautiful post Miss Laura. My goodness. Thank you for sharing. Love that I get to take a little peek into your heart. Such goodness there.

    And thank you random.org... what a sweet sweet surprise after a rather long day. This mama's hittin' the pillow with a smile on her face.

    Be in touch. Soon. :)

    ReplyDelete
  4. Amos is a handsome soul. o, happy squeezes to you. you can do anything, you know? o, yes you can....

    ReplyDelete

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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