Tuesday, May 31, 2011

satisfaction.

today is a new day.
for that I am ever so satisfied.
the symbol of his commitment to me; the symbol of His commitment to us.

my blogging creativity has abated for the present. 
but a good song, a cup o' hot coffee, and handmade-by-my-Egan colorful bunting banners strewn about my house since the great birthday party on Sunday make up for the lack of... flow. of... mojo. of... ideas.

they'll be back, I know. and in the meantime? I am satisfied. many moments that is a choice, because we all know how dissatisfaction creeps in, lurking around every corner, telling me how I'm not good enough, my house isn't pretty or clean or perfect or classy or cool or interesting  enough, or my clothes are shabby, or I'm too fat, or too unstylish, or have bad skin or bad hair... and even now typing out these dissatisfying words... is... not nice. they break my heart.

so I choose satisfaction. today. right now. I have to, or else I'll lose my mind to the other stuff.

here's a sneak peak at what we've been up to. these photos are just a few that bring me a pleasant sense of satisfaction. 

jumping children in the rain. sigh. {contentment.}

enjoy. I know I will. be satisfied, because you deserve to be.

 leftover birthday cake makes for amazing mid-afternoon snacks among bros.

 satisfaction. right there.

 surprise - hillbilly teeth! jacob has been having a blast creeping me out with these fake teeth.


have a great hump-day. keep that dissatisfaction at bay. I will too. be back soon. I... will... too. 


88. homemade cake with homemade icing
89. people smiling at babies
90. people smiling at babies with down syndrome
91. those darn sweet designer babies
92. party hats
93. watching Egan make crafts
94. tacos
95. cool, crisp air
96. the first raindrops
97. walking hand in hand with my man in the grocery store, like we're dating again
98. gettin' 'er done. (checking things off my to-do list)
99. the smell of blue sugar cologne
100. nectarines!

Sunday, May 29, 2011

Our Eyes Opened: Kirill's Miracle Story

Our Eyes Opened: Kirill's Miracle Story

Wednesday, May 25, 2011

thankfulness.

yesterday was a day to remember.
a very very special little blessing burst forth into our lives and even deeper into our hearts one year ago yesterday, early that morning.

what a glorious, empowering, blessed moment - when that warm, tiny, beautiful and brand new little body was ushered into this world, took his first breath, and this mama was filled with the glory of the Lord. thank you Jesus for our Amos, in every way. He is a perfect gift.

we are celebrating with a little party for our wee, special, precious little one year old who will celebrate even though he can't quite sit independently yet. but that will come, just as my thankfulness has blossomed, and grown, and came full circle this year.

a very sleepy Amos trying watermelon for the first time on his birthday. It was a much-loved hit.

being thankful.
in being thankful, I want to begin a list that's been unraveling in my mind for several years; I want to write down every thing I can think of that I am thankful for. the list is in no particular order, and it will be an ever expanding, and ever evolving list. there is so much I am thankful for. feel free to begin and share your own list with me - I for one am excited to see what it might do in my heart to focus on all these wonderful blessings, and it's fun and enlightening to see what other people are thankful for.

1. my husband providing for our family
2. children laughing
3. when my feet are cold getting into bed and my man lets me snuggle them up under his warm legs
4. being a mother
5. my sweet children's beautiful faces
6. my five siblings
7. being a woman
8. Jesus' saving grace
9. fresh cut grass
10. that Amos did not perish
11. working in the soil
12. children mastering something new
13. the smell of coffee
14. the taste of coffee
15. my grandmother's love
16. down syndrome - my changed and enriched heart
17. having the privilege of being present at someone's birth
18. having the privilege of being present at someone's death
19. good music
20. singing in the shower
21. warm water to shower in
22. food in my children's bellies
23. food in my belly
24. feeding my husband food he loves
25. laughter
26. friendships, old and new
27. soft singing
28. my man's shy face, when he is shy with me
29. the smell of rain
30. the sound of rain
31. warm raindrops on bare feet
32. swimming
33. family
34. the honor of giving birth
35. being breathless with my daughter's beauty
36. helping someone overcome a fear
37. feather blankets
38. protection from the elements
39. the way my Mr. smells after a shower
40. bonfires
41. roasting marshmallows
42. melted cheese
43. fresh fruit
44. baby's sweet breath
45. the smell between puppy toes
46. orchids, tulips, roses, bells of ireland
47. growing food to eat
48. staying up late talking to my sister
49. laughing with my sister
50. crying with my sister
51. listening - really listening to my children
52. my childhood memories
53. lady - our english springer spaniel that we grew up with.
54. dogs. I admit I have a soft spot for most critters, dogs especially. 
55. listening to my children giggle and squeal while they jump on the trampoline

"Mama! Come on the trampoline, please?"
My man captured these images of me jumping with Jacob - believe me, these are by far the most flattering of the lot. The others will never see the light of day. And we will not speak of them again.
my three oldest with our neighbor boy in the evening. you could hear their laughter from the front yard. this. is. perfection. When Jacob saw the photos of me jumping on the trampoline? 'Who is that? You look scary. Your hair is in your face. That's a monster. Yah, it's scary." perfection? not. so. much.

56. sitting around in the evening, sharing conversation and coffee
57. wool mittens
58. scarves and mittens and hats
59. rubber boots
60. slippers
61. sweaters
62. blue jeans
63. boots
64. pajama clad tiny bodies
65. freshly washed hair
66. fresh bread
67. floating in the water
68. sitting in the sun
69. surprise flowers from anyone
70. planting flowers, growing flowers
71. a hot cup of coffee
72. knitting
73. knitted things
74. the sound of trains
75. a home to live in
76. safety
77. baby's feet
78. baby's bums
79. children's hands
80. a little child's fascination with water, and their ability to play with running water for hours on end
81. restful slumber
82. rosy cheeks
83. babies, babies, babies
84. not a big dessert person, but there is something about following a meal with a dessert and a coffee. and conversation that is absolute *perfection*. mmmm.
85. getting a bothersome sliver out
86. forgiveness
87. homemade macaroni and cheese

Jacob is also thankful for homemade macaroni and cheese; a lunchtime favorite. This is his Stevie Wonder style prayer where he talks to Jesus between every bite and sways with his eyes closed when he is thankful for food he loves. He is so funny.

ah, the list goes on and on. so many things to be thankful for! I plan to keep adding things to my thankfulness list here and there on upcoming blog posts. these 87 were just off the top of my head. 

amen.

idle hands.
never one to go too long without creating something with my hands, I am feeling the urge to start sewing again. I have long wanted to make skirts for both myself and my little miss E., but have never gotten around to it. I have found some adorable patterns online and I will post how they turn out. Recently, I was able to get together at a new friend's house who is the mama to sweet, angelic baby Maya. Oh Maya - I again got to stare into her dreamy eyes, and got to snuggle with the one-who-is-too-sweet-for-words Chiara Bella, and was also privileged to meet the amazing and beautiful little sunny miss Ola - all of these sweet girls are designer babies like my Amos and oh. my. goodness. If any of them were mine, I would never, ever get anything done. They are honestly each and every one just too sweet to even fathom. Even though I can make conversation with each of their amazing and beautiful and wonderful mamas, it is a struggle to pull my eyes away from their dreamy, beautiful, enticing and entrancing gazes. Ah, such sweet babes!

back to idle hands... or more accurately their counterparts, busy hands... Ola's mama Leanna briefly mentioned she has a blog, she makes dolls. I thought to myself ooh I'll have to check it out when I get home, her daughter's names are Poppy and Ola and I adore both of those names, especially together and I think their mama is all-around pretty cool - and when I popped over to visit it I was left dumbfounded. Her opening sentence was 'I had my second roller derby practice tonight'. Roller Derby? how cool is this? How cool is she? I was hooked. I told her I am in awe of any woman on that roller track and secretly wish I were you. It's true.

But not only does she blog, have two adorable girls with super great names, she also makes these adorable rag dolls, all herself, all by hand - and she sells them! You must go see. She is selling them this weekend at the Old School Market in Clayburn Village - and she also sells them in her Etsy shop, Poot and Boogie. (Hope you don't mind me giving you a shout out, Leanna!) I am so thankful to have met her, and Aman, and Sandra. What a blessing each of them have already been in my life, and in my heart. Such amazingly wonderful women, and each the mother of amazingly beautiful children.

meandering.
I really felt like this post started somewhere strong and is kind of meandering off into nothingness - but rest assured, I will tie it up to the best of my ability and be back again. I am ever so thankful for anyone and everyone who reads, and I gobble up your comments as nourishment for my parched spirit many a day. God is so good, and I am so thankful to have been blessed by each person who stops by and by each who leaves a kind word. If I touch even one person's heart who is going through something difficult, than I am again ever so thankful to have been blessed to speak, to write, to share, and to be present, and have you join me on my journey, and that I can join you on yours, however that may look. 
 
A pretty bowl of lemons on my table. Just crushin'.
Love the way he looks up at his brother with complete and udder adoration.

wrapping it up?
yesterday: remember it.
be thankful.
idle hands are the devil's plaything.
take time to meander, and come on back. you never know who's waiting for you.

love to you all, this fine spring day.






Monday, May 23, 2011

don't sweat the small stuff.

When I was young, my mom had a book called Don't Sweat the Small Stuff.
That title would come back to me many times in the years since I last saw it.

Indeed it has.

What I didn't remember about the title of the book until I looked it up today was what followed in parentheses. 

(it's all small stuff).

In my lack of sleep and coming down from the most-stressful-year-of-my-life-haze, I have been sweating a lot of small stuff. (oh, who am I kidding, I've been a race horse in many ways for the last five years of my life. But I shouldn't be counting. That's silly).

Even today, I felt like my mind was spinning and my head was going berserk with the multitude of little things lying around, the crumbs on the floor, the baby needing a nap, the fact that I haven't put my bra on yet today. Yup. 

By God's grace, the older three children came running in, faces flushed with excitement, limbs flailing and mouths flapping and chirping, all abuzz with the words that mark the arrival of summer:

the ice cream truck is here!

I remember when I was a mama of only one, and then two - when we heard the ice cream truck, I taught them to leap into action. You hear that cheesy music? Yell for money, get out there, get a treat! It won't be here long! Hurry! Hurry! Hurry!

Run like the wind, child - run!

What fun. But - it's almost lunchtime, then nap time, and I need that time to get things in order for friends coming over for coffee this evening - and the return of the man of the house later this evening. (hooray!) Hm. Ice cream truck equals lots of money (lots of little mouths want expensive sweet treats), and if they get them my daytime schedule is thrown off and then what?

I tell you, it didn't take me long to decide what I needed to do. It didn't even take looking at their faces. I told you it was by the grace of God - He settled my heart, my mind, my schedule - and told me I was the Mama. And they are children. It's okay. I need to relax.

I knew what I had to do. I had to tell them where money was so they could go blow it quickly, and enjoy slurping up every last cent of sugar laden frozen deliciousness.


(thank goodness the daddy's not here. he goes a lot less for the ice cream truck than this mama does.)


But the ice cream truck is not the point I need to make today. The excitement is. 

Or more truthfully, the lack of excitement these past months is what is begging to be talked about.

At church yesterday, our pastor spoke of Elijah suffering after years of running on adrenaline. He spoke of how a person can only do that so long. After years of adrenaline induced go go go go go 
... it leads to a shut down, compassion fatigue, depression, exhaustion.
And when you feel that fatigue - you need to rest. You need to take your peace, and lean on Him. 

I cried.

guess where I am?
it's my precious boy's first birthday tomorrow.

and I have yet to even dress myself today.

I am fatigued.
I am tired.
I am sweating so much small stuff I don't even know where to begin.

So I started with the ice cream truck. 
Next I will get dressed. 
My little sweet can't-believe-you're-one-tomorrow baby still needs a nap, but I will be ready this evening when our friends come for coffee. And it will be okay. Because like I talked about here, when people see that other people live in their homes, too* - it makes things feel normal for everyone else.

*note - 'live in their homes, too' means 'you mean your house gets crazy, too?'

I thought for a moment for illustration's sake, I'll take a picture of Egan's mess at the desk where she set up her homework... and when I saw the photo, I literally gasped with the realization of how not crazy it was.

two brothers wearing their sister's hand-me-down sun hats in the backyard. nobody's sweatin' a single thing.

It really is all small stuff. Naps, crumbs, schedules, whether or not your kids, your house, your dishes or your hair are clean and impeccably presentable - it's all small stuff.

Don't sweat it. But even in that, don't sweat not sweating it. To me, this means don't let it get too crazy (like I do) or else it takes up permanent residence in my brain where it becomes the boss and imprisons me behind a wall of it's just too much I don't even know where to begin...

Just relax. Breathe. Snuggle a sweet faced child or two, and do one thing. Lean into Him, your heavenly Father, the One who knows you and feels your pain above everyone else. The One who loves you so much more than you know, more than you deserve, more than you can even comprehend.


My biggest boy just walked in and informed me that this afternoon, the consumption of his frozen treat was one of the 8th greatest moments of his life. He told me 'did you know as soon as I finished that Mega Missile that the world got a little bit brighter?'

Ah, I need to remember that. Frozen treats, summer, sugary goodness, excitement, fun on a holiday, lean on the everlasting arms.  I need to remember my own words. And remember I am never alone in my fatigue, my adrenaline let-down. And neither are you.

Run like the wind, child. Run.
Don't sweat the small stuff. (and it's all small stuff).

Happy Monday.

Friday, May 20, 2011

the ebb and flow.

sigh. these last several weeks. where have they gone?

where has my mojo gone? I fear in the ebb and flow of good days and bad days, restful sleep and sleepless nights - with nearly every night being a sleepless night and the days become all tangled into playing an impossible, dizzying maze of catch-up... and in that I fear that I lose not only my time to restore - but that I lose so much more.

I know through talking to other women, other mothers, other wives, other don't remember-the-last-time-I-slept-through-the-night-it's-been-so-long mamas... I know from talking with them that it's not just me. Phew.

Still, that realization doesn't make it any easier. My body feels sluggish and tired and worn. As does my mind, my heart. 

Days begin with me being dragged unwillingly out of bed, being dragged by only my sense of responsibility to my children, as is any other mother with little ones rising too soon. Exhaustion seeps in, overtakes everything and my only solace is the next time I can crawl back into bed with one or more little ones by my side. One day this week I kept a small running commentary of what took place all day. I was astounded by the sheer lack of productivity due to little ones refusing to sleep, too excited to lay down and close those eyes, in case they miss something. Sounds much more precious than it is after the umpteenth time of a terribly underslept mama running up and down the stairs while little ones won't sleep and cry and whine and refuse any good and helpful assistance, preferring to whine loudly and long and lonely and so very skin crawlingly annoyingly. Think I could be a bit short on sleep? Yes.

Ah. Sleep. It is delicious. Elusive. Revitalizing.


Precious children, when they sleep - for me, the phrase all things become new is on the forefront of my mind when little ones eyes grow heavy and heads droop with the disappearing sun. It is a beautiful, simple but consistent reminder of how we are given a new chance every day. A new birth, a renewal and another opportunity to try again. Us and them. A chance to gain a literally fresh perspective on just about anything.

And for the days where sleep continues to elude me? I drink one heck of a lot of coffee for one person. I listen to music that makes me feel like I'm dancing on the inside. I get to look at some of the most beautiful faces in the world - shining faces as they cheer on the Canucks. Or eyes all ablaze with excitement at the realization of nothingness underfoot while bouncing into the air on the trampoline. Sweethearts shining through sweet faces as they enjoy each other. Bliss for a tired mama.


I had all these high hopes for Amos' first birthday coming up right after this long weekend. Now I don't even know where any of that desire went. I had high hopes to do something huge, something grand, something so special - because I just feel so darn grateful for him, for our family, for everything that we are. And these days I just don't know how or where to tap into any of that desire. I wouldn't even know where to begin, my eyelids are so heavy.

But right now, just for tonight, my little ones are all a-sleepin' in their beds. Nearly. They are all asleep, and I only have one baby in my bed right now, at this moment. Sleep will return one day, I know it will - and with it, my mojo, my energy, my sunny disposition and my creativity and all that entails will flow right back in from where it ebbed before.

This too shall pass.


For now, the house is cooling off with mild evening breezes like how the children drift off one by one. A warm bath and a late cup of coffee are calling my name. It really is so peaceful when the children are resting. Tomorrow is another beautiful, gloriously new day. And who could be cranky with this little face to look at every morning? His big day is coming, and as a friend pointed out, I'm sure it will be wonderful, whatever we choose to do.
Good night. Sweet dreams. I choose to feel something wonderful. Oh, and with the ebb, it flows.
Happy Weekend.

Monday, May 16, 2011

one year ago: the arrival of amos.

otherwise known as: up with down syndrome: chapter 4: the arrival of amos.

I've been working on this, the final post of the arrival of Amos: one year ago now.
It shouldn't be difficult. I could talk your ear off about how much God has blessed me with this boy, through this boy.
I guess it's not that it's difficult, it's that I don't want to do it any injustice.
I don't want to tarnish it, make it less than it is.

Because it is so very profound.
I know it will never be good enough, but I'm going to try‎... and away I go. Whisper a prayer for me. I'm crying as the words flow out of me. So much to say.

Saturday, May 22, 2010 – 0404 am

Contractions. Every 3-4 minutes.

Be darned if I'm going to the hospital before I need to. Staying upstairs, resting, bathing, eating snacks Joel and the kids send up. Contracting all the while.

 

Sunday, May 23, 2010


This is definitely labor. God, I'm scared. I'm so scared. What if I don't love him? What if he's ugly or scary looking or worse? What if he doesn't come home? What if I am going through this only to lay his body in the ground?

Oh, God. Be with me. Be with him. Protect my sweet baby until I am ready to.

I'm just getting through this one contraction at a time.

If it were all only that easy.

 

Monday, May 24, 2010. 0452. the moment the world shifted. again.

Amos is born.

Amos is here. And he is perfect. my labor was so swift and unmedicated thanks to my fantastic support by stephanie and joel (actual active labor to when amos was born was 2 hours and 20 minutes - I did all my early labor quietly at home, was 6-7 cm when I got to the hospital at about 3:30, they ruptured my membranes at 4:20, had 3 contractions after, these 3 excruciating contractions which steph lovingly and softly talked me through and then I was fully, pushed 3 times or so and he was out at 4:52.) - steph knows how much her care for me has touched my heart and how her presence there was what made all the difference. so many things scared me for that day - and she so gently brought it back and made it peaceful, normal, exciting, and so very precious. I can never ever possibly thank her enough.

I love you steph, and know so deeply how you love me. obviously - who but someone who loves you could stand in a puddle of your unbelievable flood of amniotic fluid and still cradle my head and weep with me and offer such strong and loving encouragement in my ear while I push my precious babe into the world? and then shout with joy "look at how beautiful he is! look at his little bum! look at his little feet! he's so cute, laura! he's perfect and beautiful and oh my gosh he's so cute!" She said these things over and over and over while her own precious babies slept the night away on the other side of the city. (She will still say these things when we speak of this precious, blessed night last year.) Gosh, Steph. You were my angel. You have no idea. You saved me. You held the light for me to see where I am today. You took the heaviness, the pain, the weight, and brushed it aside with your laughter with me as we stood in front of the doors at the Foothills Hospital at 3 a.m. waiting for them to open... and waiting... and waiting... me contracting all the while - and finally realizing there was a sign there that said the doors were locked all night, in front of our faces the whole time...
agh, steph - you were such good medicine for me! oh thank God for you. thank you thank you thank you.

after amos was born joel brought me delicious peanut butter and jam on toast so many times in the hospital...I am drooling now thinking of it. joel demonstrated so much love for me by staying with me continuously (and the nurses allowing him to stay) even sleeping in my bed, quietly helping and just staying so I didn't have to be alone. he got a little cranky at the end of the day when he was tired out, so I sent him home, but he graciously made me two slices of pb and j toast before he left. when he came to get me today he entered my room with toast, too. that toast was such a gift. Joel, you have no idea how much you blessed me with that toast. In the most vulnerable and raw and gaping aching confusing exhausting most difficult time of my life, of our lives together, you brought me comfort food quietly and knowingly and endlessly. Thank you, my love. Thank you.

 This was all I was fed on my breakfast tray in hospital. No wonder I needed more food.


The experience of being stretched and changed, the process of having my old self broken and peeled away, revealing a more beautiful, more loving, and more able person inside - this experience of having the fearful entity of Down Syndrome become this precious, squirming, alive and amazingly beautiful, precious and perfectly formed baby boy in my arms - squeezed so very gently from my body and into this world. I am changed and better for it.

His tiny, perfect in my eyes body, slippery, pink and warm, emerges from mine, takes his first breath after the most peaceful and purposeful labor of my life. Each contraction drew me inward and closer to him, and so far into the arms of my Creator. I had so desperately wanted to labor peacefully at home, and deliver this baby at home with midwives, but when the medical issues arose (he could die at any time. aaaahhhh. ouch. hospital is a-okay) I was at peace with whatever had to be done to bring him to us safely. And once he arrived, and was alive and so heart-achingly beautiful, I ached in a new way because I was not allowed to keep him. He had to be taken, away for his surgery - I cried looking up at Joel, knowing, in a way, we had to sacrifice our son in order for him to live.

To even write of that miniscule moment in time again, a moment where I was fresh and raw from childbirth, the moment where I was allowed to hold our tiny new baby boy, his eyes searching and flickering, his mouth pursing and his perfect lips sucking up and forming the words perfect beesting lips in my mind - recalling that moment draws up this plethora of painful emotions - my eyes fill with tears, my heart aches, thinking of having to pass off my tiniest-baby-ever to complete strangers and to trust that they knew what they were doing in order for him to ever join us again. I can't even describe how difficult that was. I can, actually, but I don't want to. It hurts too much. And he's here now. But oh, goodness - those moments, those days - sigh. Pain. Heartache. My tears and broken spirit. I mourned. And mourned. And mourned.
In that mourning, I still struggled with his diagnosis. A man Joel had worked with had shared with me that his sister had had a baby with Down Syndrome several years prior - and their family loved that little girl, but then when she was three she suddenly developed pneumonia and died. She died.

I want to be honest here (it is my blog, after all) in part to help facilitate healing in new mamas who have recently been told their baby has been tailor made with an extra chromosome, or any extra anything, or a lacking of anything (and I use those words with the utmost respect). When this man told me his little niece died, I felt relief. I was still heavy with Amos in my belly, stretched beyond capacity, and the thoughts flitted across my mind 'maybe our baby will die, too - and we won't have to deal with this whole Down Syndrome business'.

Please don't judge me for thinking that. I judge myself enough already.

It was a necessary path I needed to trod on, briefly, in order for me to find my way to where I am today. That being said, also know that it pains me greatly to look at this beautiful baby boy now, who is so extraordinarily perfect - and I mean that - in utter and complete contentment - now. I want to be completely honest, and show the journey from fear and darkness and anger to love, and acceptance, and peace and celebration and joy.

Don't get me wrong, at his debut, I loved him. Prior to his debut, I loved him. True, as with any baby, I had no idea how much I would love him. But even in and around those moments of love, I struggled, ached, and wished I could pray the Down Syndrome away.

Of course that's all different now. Completely different.

Tuesday, May 25, 2010

Ah, I'm at home now, actually felt good in the hospital - my nurses were so wonderful and loving - the doc was also - but now I don't even know - it all felt okay and handleable in one moment and now I am in tears - sobbing and I miss Amos so much.

My tummy hurts, aching; physically and emotionally. severely separated abdominal muscles means I can't sit, stand, lay, walk, turn, breathe, talk without substantial abdominal support. 1920's style belly binding here I come. Missing my precious little Amos - surgery not being done until tomorrow. keep praying, hard. really hard. seriously. I am on T3s and calling medical supply stores to get some kind of support garment.

I think a coffee would be nice - I think. many times a Starbucks vanilla latte has helped me through a yucky time (decaf with pregnancy and pumping - normal life is regular with even an extra shot of espresso!) I haven't had one yet - but sometimes a little bit of normalcy is essential to keep a new mama from losing it. I ache with having to leave him, having to await surgery, having a nurse tell me 'he's so hungry, he cries' - seriously, who says that? Nurses - don't tell any mother how hungry her child is when the child is not allowed to eat and there is not a damn thing anyone can do about it. Tell the mother the baby is content and lovely and beautiful and touch the mother's arm when you speak to her. This may be what you do every day, but it is NOT what these families do every day. It is incredibly painful and difficult, to say the least. You have no idea how much it hurts to have a child in the hospital, away from the safety and care of your home, your arms, your heart - so please. Be unbelievably gracious and beyond-anything-you-knew-you-were-capable-of full of kindness and love and be patient and loving because I was going through the fight of my life and couldn't even hold my own baby. Sigh.



His surgery is waiting until tomorrow when we were told it was supposed to be today. his little tiny face scrunched up while we were there to see him today and he cried a little bit - I had to bury my face in his bedding while my body was wracked with sobs... I sobbed and sobbed and ached and ached and sobbed some more... primal instinct is strong; I want nothing more than to scoop him up, wrap him against me, and run as far and as fast as I can and never, ever look back. Lord, this is so hard. 


It is so hard. so much harder than what I was feeling before with being sad and mad about the down syndrome - that all seems so irrelevant now he's here and he's perfect and precious and beautiful and mine. and I want him. so bad it hurts. so much. more than 
anything I've ever known before.

he is so little and so beautiful and every fibre of my being wants to scoop him up - take him and run far far away - run hard and run fast and leave and never come back and let him be my baby without all these problems... argh, please pray for me. I don't even know what else can help me through this right now.

on a happy note I lost 30 pounds in one day. but seriously - that 8 extra litres of fluid was seriously heavy. (I was carrying a total of 9 liters of amniotic fluid. so heavy. very heavy.)

my sister and her husband came from saskatchewan and brought us literally a freezer full of food - I don't know who all it is from but THANK YOU. and as I was saying before and keep saying if you still feel the urge to give food we always need to eat.

isaac and egan and jacob are doing well but want to see the baby (jacob obviously less so, he seems delightfully oblivious); jacob can even say "baby amos" - it's so sweet. they are being lovingly and endlessly looked after by my mom and dad, or again as jacob says "damma 'n buppa".

forgive me if I don't answer the phone still or come to the door for a visit - I don't feel ready to have my face on yet. I need more time inside.

yes, coffee would be nice. a short visit would be nice, if I am up to it when someone comes. and food is always welcome. one day soon we'll have a baby shower, as I am aching to celebrate the arrival of this wee treasure, as the NICU doc so lovingly described amos weeks ago.

love to you all. keep praying for my wee treasure.

Laura
xoxoxo 

  
Wednesday, May 26, 2010

11 a.m.: what a sweet surprise today; come to see Amos and be allowed to hold him. Ah, he is so precious, so beautiful. I can't wait to bring him home forever. 


I kept my hospital bracelets on the entire 29 days Amos was away from me. They became so tattered, so worn, so dirty and nearly unrecognizable from their beginnings when I first entered the hospital as a patient myself.

 

 

 

 

 

 


5:07 p.m.: 2 days old. Amos is in surgery. Pray, please. And don't stop.

 

8:32 p.m.: everyone,
the surgeon called before going into surgery and said he would call as soon as they were out - that was at 5 - surgery is estimated at about one and a half hours, it's now 8:30; it's been over nearly three and a half hours hours... I am scared.

trying to keep my phone line free to hear from the surgeons. my eyes hurt from crying. I love this baby - more than I knew I could in such a short time. I don't know what else to do but ask people to pray. I am so damn scared. You have no idea - I can't stop crying. I am trying so hard not to succumb to the deep dark fears that are creeping in in this silence and fear.

help me, Jesus. be with Amos. love that little man, with a deep unrelenting ache.
pray. I know I keep saying it, but please, keep carrying this load with me because I feel like I am breaking again. 

 

This is what I was feeling in my head, which I only spoke of to Joel at the time:

my heart feels as if it is gently and carefully being urged to prepare to say good bye to this little one who hasn't made it home yet. all I want is to be able to hold him close to my face and breathe him in... wash his beautifully dense head of dark hair – I can't wait to see what it will look like all clean and soft and fuzzy. at this moment I feel this will never happen – unless I am allowed to wash it for his funeral. this is what I am feeling – he's not ever going to make it home. is he? Oh, God, will I only be able to wash it for his funeral? Will they let me wash it? Will I ever get to nuzzle my nose into his sweet fuzzy head?
  
This hurts.

Nearly four hours of surgery later... 

9:00 pm:
Ah! Praise God that all is well. Finally - we tried to call them wondering if perhaps something got lost in the mix...he still wasn't out of surgery until almost 9:00! It went perfectly well, and Amos is back in the PICU on a ventilator. They will try to wean him off it tonight, and will start giving him my breastmilk in about 24 hours through a tube that goes all the way down past the surgery spot, past where the blockage was. Joel and I clung to each other for dear life and just cried and cried when the surgeon finally called – I think our relief surprised both of us. Amazing how connected and protective you feel about a little one we've only seen for a few moments. His heart echocardiogram also went beautifully; he has no hole in his heart! Again - praise God.

Now we're also waiting on some biopsy results regarding something called Hurspring's disease - apparently babes with down syndrome and duodenal atresia have a 15% chance of not having properly developed ganglion (nerve) cells in their little colon/rectum - so pooping problems down the road. A biopsy to assess the presence or absence of ganglionic cells was collected while Amos was under and we will learn the results tomorrow afternoon. If he has Hurspring's disease, he will need more surgery but not until later.

Lastly, we learned just today just when the surgeon called that they found what may be a sacral dimple - a sign of a possible neural tube defect. (may indicate a serious underlying abnormality of the spine or spinal cord) - it is not apparent on the outside as I saw Amos's little spine and bum when he was born; they just saw it on x-ray before surgery today. So... it may be only something normal as they are just seeing a collection of fatty tissue in his lower spine on x-ray - and so he will need an MRI within a month or 2 to determine what it is, if it is abnormal, and if it requires treatment. (ie surgery). Glory be.

This year's update? There is no Hurspring's disease, there is no sacral dimple. Thank the Lord.

I tell ya - this little man is something else. His beauty makes up for any stress this is causing us - we are just so grateful he is still here (with 4 hours of surgery of course our minds and hearts were all full of panic and doom). But not to fear. Jesus was there all along. Thank you, thank you, thank you for your prayers and for You, Jesus. For giving us this precious, beautiful little boy who is changing us.

Thank you, again - now I need to go lay down, rest, drink some water and milk myself. Ha! I am so happy to do it – my baby is alive! It's
all I can do right now, so I will do it with so much joy, so much love, and so much relief...and even though I feel like a milk cow - I am so, sooo happy to do it. 



Love you, sweet precious Amos.

Love you, all of you beautiful people supporting us and carrying this heavy load along with us. Bless you all.

Laura
 

I have these writings from last year. My journalling, my pleas sent out to trusted friends for prayer, for help, for encouragement. They are a cataloging of sorts, bits and pieces, snapshots in time of each event as they transpired. They, however, are like the side dish sitting alongside the main course. The main course of what was happening at home, inside our walls and inside our heads and inside our hearts - the bulk of emotion and pain and growth and the meat of where we are today. My writings of last year speak so little of the emotion, the ups and downs, the chest deep in cement or the wildly flailing turns of events we muddled and stepped and stumbled and fell and got up again and again over and through a year ago, once this precious package of a boy arrived and we spent four agonizingly long and incredibly painful weeks with him in hospital.


Four weeks where we thought more than once he would never make it home, to us - where he would instead be going back home to Jesus.

Four weeks where I was torn, over and over and over, tormented daily with where to be, and where not to be, and always forever broken and feeling gutted and ripped open with missing my baby and not having him skin to skin and sitting helplessly as his tiny body was sliced open and manipulated by strangers in order for him to live - watching helplessly with silent tears sliding down my cheeks, burning down the well-worn trails of their predecessors when my tiny baby was hooked to a ventilator breathing for him and I was not allowed to even touch him. Where his cries were silent and so disgustingly painful and the nurse scolded me for reaching my hand out to his tiny cheek. My body shook with sobs so many days.

There is nothing natural about looking at your own tiny baby, so tiny and new and beautiful and perfect and his little body strapped unnaturally to machines keeping him alive. And I was not allowed to touch my own little flesh and blood. The same nurse who scolded me told me of his great love for these little trisomies.
What?
Did you just refer to my precious tiny baby that I am still reeling over not being allowed to touch a trisomy? Seriously?
Shut up. Shut up. Shut up.

I was not prepared for the anger that would unleash as a result of aching for my baby. The guilt. My desire to smash things, to smash people, to scream and punch and wail and scream some more - people who were trying to help but no one knew how to heal what was going on inside of my heart at this time. My heart was being stretched, but I was helpless in not being allowed to have my baby sit with me as I would with the others before him, sit and study every inch of his body, stroke his soft, freshly made skin - I ached with the desire of getting the privilege of allowing him to be my baby. Mine and not the hospital's. I wanted to go down, deep into the earth and scream myself hoarse, scream and cry and yell at God and demand that He send my baby home to me. Little did I know how many times I would yell and scream at God over the next four weeks.

I was not prepared for how those four weeks would feel like ten years.
I was not prepared to leave him there every night, in and out of days on end. 
I was not prepared for bringing my baby home with tubes sticking in and out of his body.
I was not prepared to not be allowed to freely feed my own son from my own breast.
I was not prepared for his face, his features, his sounds or his smell to be unfamiliar in my mind. With the other children, because of the great deal of time you spend with your baby when they are new, their face quickly becomes etched on your mind's eye, so that even when you are not with them you can recall every feature, every curve and detail as it scrolls from lip to chin, from arched brow to pert nose - from sparkling eye to flittering lash.

I could not do this with Amos. He was foreign, in so many ways. And for that I ached. There was so much between him and I. So many problems between a mama and her baby.

So many monumentous things to fix and heal before he was allowed to come home. So many things for me as his mama to get a grip on, and understand and process and deal with between a tiny, precious babe, and his mama - he all the while waiting patiently for his mama to gather herself, gather him up and bundle him home - for good.
He was so patient with me.

I took small videos on my phone so I could look at them late at night when couldn't sleep when my house was quiet, and he was left at the hospital and I was not there. I would watch them and stroke the image of his cheek, and would weep and sob and gulp air when it was too heavy to breathe, and kiss the screen of my phone as tears would soak my pillow. Night after night after day after day my pillow was my silent companion as I wept myself into submission, exhausted and aching and so very sad, lost, and broken. Oh, the pain for mamas who never get to bring their babies home. Sisters? You have mansions in heaven. Glorious mansions where your precious babes patiently wait, and for them it is but a moment.

Tuesday, June 1, 2010

inside out


feeling pressure of asking too few people for too much help

what do you do when you still need so much help? I can't independently get myself to the hospital to see my baby just yet, kind people offer to

kind and loving people say "please call, I want to help"

but then I call

and people aren't available

I can't expect people's lives to revolve around mine
especially when theirs aren't blood and guts and tears and painfully turned inside out

and upside down

this is just so damn hard
so I distract myself by trying to reach out on facebook

feeling like I'm in junior high, full of angst

but I'm just a fresh and raw new mother
aching to be with her newborn

and can't

without sacrificing another child or begging for more and more help

pretty sure God wants me to stay on my knees

think I'll go there now

this is too much to carry when I am alone in my room, filled with tears and milk for a baby who's never yet been to my breast

Jesus, take it
because it's too much for everyone to carry

and I can't see where to look
through all my tears

After the first two weeks, I was finally able (mostly) to drive and walk myself to Amos's room at the hospital. I would walk down that long hall, back to see him day after day - the first few weeks where I could not even walk without assistance, my belly having been so stretched from carrying my swimming babe. I would walk to where it felt he was being kept from me, and I was becoming so familiar with the hospital's best attempts at being cheerful with the placement of colorful children's art on the walls. Those same drawings would come to haunt my dreams, taunting me, weeping with me and at me, telling in screechings of the pain of you can't have your baby... we have your baby... and look how happy we are...

I took pictures of them before Amos was done there. I took pictures of the inside of his room from where I would sit with him, hour after hour, hungry and going far too long between bathroom breaks and meals and rest and pumping my over-filled breasts to feed him when he would be allowed to be fed... hours spent sitting, holding, breathing him in, learning more about him and my love for him, hours spent weeping silently from behind his hospital crib, away from the eyes of the nursing staff, weeping for my loss, for what I perceived to be his loss, weeping for his future (what if he has body odor and bad toenails as an adult and I'm dead and gone, and can't take care of him? what if people make fun of him? or are grossed out by him? what if people call him names? what if my family makes fun of him behind our backs? what if Joel's brothers make fun of him behind our backs? what if people call him retard? what if people silently breathe a sigh of relief and think thank goodness it's them, and not us... please, God, no - I ache and hurt and weep for all of this. Please take all of this for me, and for Amos, and all of the other precious people like him).

I sobbed and mourned and ached and shook every time I left the hospital. I told anyone who would listen of how I felt like people wouldn't be able to make it up and down the hallways where I had walked each night because I was leaving pieces of my spirit all over the floor. People would surely trip on them, they were so huge and so messy. And they were everywhere.

Monday, June 7, 2010
it's pouring outside, literally

if I were caught out there it might make me unhappy - it might

but warm in my bed with one baby, while my littler baby stays warm and dry in his crib, or in a loving nurse's arms, patiently awaiting my arrival each day, each evening

staring into my eyes, peering into my soul, with unflinching trust, I love you, mama - and I love you, more than I knew I could, with so much more than you know, little one

it feels like the rain is God crying tears for me, for us

gallons and gallons of tears

letting me know He feels my pain, too
and that He is still in control
and that this too, shall pass

the rain reminds me of the feeling of surrendering to a powerful storm, knowing you have to stop, and wait until it passes

while the torrents all around you fill all of your senses

the rain reminds me of even a hot shower, you close your eyes and let the water run down, filling your ears until all you hear is water, washing everything away

one day you'll be home, wee one
and we will remember so little of this painful, tearful time

you will fill us with so much more

ah, the rain sounds comforting
and I am grateful for it


I was not prepared for the day, one week after I wrote this note - I was not prepared that my own mama would suddenly announce after her six weeks of caring for us, for me, for my children, that she needed to leave. And go home. Now. Before my baby was home.

My anger and shock and pain wasn't really surprising to me, I didn't understand how a mama could leave. I wished she could've hung on until our baby was home. I cannot pretend to understand how tired she was from being with us for six weeks. But I also cannot understand her leaving. But still, that needs to be forgiven and gone. But it still hurts. The day she left was the only day I never made it to the hospital to see my baby the entire time he was there. It was all so hard, I hated having to depend on people for help, especially when they just couldn't help any longer, or at all.

For that I burn in pain inside my heart, inside my tummy. I could hear his little spirit calling me where are you, mama? And I couldn't go. I felt I failed my little one, who I felt was laying and waiting for me patiently day after day, laying there, waiting for his mama to scoop him up and whisper sweet words of love and to drop my tears onto his face and hold him close to my chest so he wouldn't forget my smell.

I feared that, that if he could ever come home, he wouldn't know me, wouldn't know my smell, my sounds, the sounds of our house, the sights and smells and sounds of his brothers and sister, of me, or of his daddy.

The days passed and passed, and a day came where Amos's care was transferred from the surgical team to a physician who would be responsible for discharging my baby. Discharge? You mean we can go home? I felt like a horse chomping at the bit after so many long, long days filled with pain no matter where I was. After a few failed attempts at coordinating everything that needed to be coordinated (recall I was not prepared for bringing my baby home with tubes sticking in and out of his body. I was not prepared to not be allowed to freely feed my own son from my own breast.)

But what glorious faith:
one day you'll be home, wee one
and we will remember so little of this painful, tearful time

you will fill us with so much more

ah, the rain sounds comforting
and I am grateful for it

And on Father's Day, June 20, 2010, Amos came home. Forever. Happy Birthday soon, sweet boy. You precious, patient, angelic soul.
Here we are, a year later, now living in rainy country. Not even I remembered the significance of the rain. I am grateful for it. And for you.
And for my Readers. Especially if you are someone who's being faced with a similar journey.
I hope that this can help someone, somewhere, sometime. I am grateful and excited and in love with your special babe, even if you aren't ready to be there yourself, just yet. That's okay. You have everything it takes. You just don't know it yet. Whenever you feel exhausted, confused, incapable or at your wit's end...look within. Trust your instincts. (Kelle Hampton).
And today? I am so grateful for Down Syndrome. I know now it is a blessing. And I am so grateful for the significance of every poopy diaper, because they signify life in my Amos. Without his bowel surgery he could not eat, could not poop, and would have died. I celebrate every poopy diaper change. I celebrate every poopy heart change. Every day.
Celebrate with me.
Celebrate with us.
It's coming soon.




Related Posts Plugin for WordPress, Blogger...