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.




14 comments:

  1. I bawled my eyes out reading this, Laura. I love you and that little man so much..Beautifully written.

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  2. Oh Laura...your words tug at my heartstrings. You have no idea. Every thought, every horrible nightmare you thought of while you were mourning the loss of your "perfect" baby and learning to love your "trisomy" is a chapter out of my own life. My own mourning. You have moved me once again. Tears of sadness, relief, and understanding are still dripping from my chin from reading your experience. A grief counselor at the Red Deer hospital came to see me when they took my tiny, 4 pound Taryn off to the UofA NICU on a foggy October night. I also did not get to hold her, and was told to not touch her because her blood pressure was so out of whack. I wasn't even sure at the time if she even got to see me. She wasn't alert at all and was barely alive when she came out into the cold world. This grief counselor told me to cry, to scream, to say goodbye to the child I thought was growing inside me. She told me that child was gone and I needed to deal with that. I cried so long and so hard my body hurt. For days it would take hold of me at any given time and I would be lost to it. I never knew it was humanly possible to cry that many tears. Now my eyes swell as does my love for her and my heart every day when her little face smiles at me every morning. Just a couple weeks ago, without any prompting, she looked up into my face as I was tucking her into bed and said" Love you mommy" The tears overtook me instantly as they did 9 1/2 years ago, only this time they were purely tears of joy. I am wishing for you and Joel to only have these tears of joy today and every day. Take care my dear friend....
    Carmen

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  3. there's "only" like 10 tissues around me...and a naked little special one on my lap.

    Thank you for your blatant honesty and for this story. Our kids may not be the same but I feel so connected to you. I know those deep aching sobs, feeling like you want to climb into the centre of the earth and scream your face off. I also know the beauty and the joy and the amazing feeling of acceptance.

    It's like we had a chemical peel on our hearts ha ha.

    I love you!!

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  4. So proud of you and I don't even know you. Thanks for your raw and honest account and a beautiful tale to be shared. I WILL come back and see those photo's of your gorgeous boy.

    I can totally relate to many parts as we both share that little magical something that came to us one day and changed our lives forever. Now onto the next phase of your life. Growth and change will forever be before you but with honesty and patience you will soar like a bird.......

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  5. Your words are so hard and so easy to read. You have a gift of drawing your readers in so that we feel we have been there with you experiencing every difficult, honest emotion with you. Blessings on you and your precious family, Laura. And HAPPY 1st BIRTHDAY, AMOS!!!Much love, Suzanne

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  6. I am sitting here trying to compose the perfect response, and the words escape me.....

    Just know that I am sooo moved. I started reading, sitting on the edge of my seat (as if I didn't know what was going to happen :)....heart racing, eyes welling, fingers bitten! And by the end, with my body and heart completely relaxed, I smiled a smile that only mamas like you (and me, and Kelle, and Carmen and others like us....)can understand.

    You did it. You did it beautifully!!!
    Kelly

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  7. God spoke in all your words Laura and you bless more than you will ever know.
    You bless each and everyone that you touch and Amos does too!
    God knew this angel-baby was needed here and He has SO much for him to do. I love his smile and I can't wait to see some new photos.
    I am SO thankful to God that He molds us until He calls us. I know you listen to His voice when there are mountain top views and when the view is all up hill and misty,
    I wish I could give you a big hug just because you are so beautifully you. I KNOW Joel knows what a God-gem he has!
    Here's to meeting at the mountain top and breathing deeply together!
    oxo

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  8. I'm so glad I got to meet you the other night. I fell in love the moment BA told me about Amos, and then my heart melted when I saw him, and I was hooked when I held him. There is so much love in his heart, and it changes everyone he meets.
    I have a similar story, but very different at the same time. Elena has changed us though. She is perfect. People tell me that they pray for her to be healed, but deep down in my heart, I hope it never happens. I rejoice for the day when Jesus will heal her and the lame will walk, but right now, I love that she doesn't. Her story is and always will be different than mine, and I know God will use her to touch hearts I never would have been able to reach. She is my joy.

    As for the rest of my comment, I have a friend with a DS baby, and I asked her a few questions, because I wanted to learn more about DS, especially since I was getting to know the ladies from the IDP playgroup. I wanted to be able to understand their hearts, and know their experiences on a deeper level. This isn't all that my friend sent me, but it changed so much in me. I hope it warms your heart like it did mine.

    I'm so glad we met.

    Love to you and your family,
    Kayla

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  9. WELCOME TO HOLLAND

    by
    Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."


    OH, and THIS is a good one...
    Special Angel
    by Sandy Eakle


    As beautiful angels wings were
    flying over the streets of gold,
    the baby angels could only
    watch since they weren't very old.

    Then one day God stopped to
    talk to a little one without wings,
    just listen to the angels sing".

    Confused yet excited the little
    one said to the Lord,
    "But I'm different from the others
    God and not a miracle to behold".

    "Oh, but yes you are," He said
    with a hug and smile on his face.
    "You're the greatest gift I can give
    and a loving home you will grace".

    You mean, tho I'm different and
    will never be beautiful or smart
    Someone will want me and give
    me a place in their heart?"




    "Gee God.....that person must be
    special to be glad to have me,
    Cause most folks would frown
    and upset they would be."

    God said, "your little heart was
    filled with more love than most.
    Cause I knew this family would
    love you and hold you real close.

    So go my little angel and take
    the greatest gift I can bestow.
    You're that "special" angel few
    people have the honor to know."

    by Sandy Eakle

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  10. Came back to see the pictures.....
    A flood of tears as I revisit our own story. My husband came in and stood behind me and together we caressed the pictures with our eyes; sweet boy, sweet mama. And we both agreed: He's beautiful....from the very beginning, just beautiful. And you? YOU are the most beautiful creature I've ever laid eyes on. I didn't even need pictures to tell me that. Your words painted a masterpiece of your heart; your breathtaking, drop-dead-gorgeous mama's heart!

    I loved these words and pictures, oh so very much ~
    Kelly (& Jim :)

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  11. A MAZING! Such a beautiful, honest, lovely post! So glad to have met you and your little guys! Looking forward to getting to know you, Poppy just loved Jacob :) I'm off to read some more!

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  12. Laura,

    I wrote a lengthy comment about how much I admire you as a mother, and how much you bless others by speaking of the strength and love and joy that God has filled you with; but alas, it did not post. And then I went camping for the weekend and didn't have an internet connection.
    So now I comment again!

    Love you, love THIS, love your amazing family!

    Happy Birthday to Amos!

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  13. I see so much of myself in this...so much that you have been through that would relate to me. oh i love how God has given me a "heart sister" i don't have many words right now....but am so blessed to have met you. THANKYOU for sharing your story...and your sweet Amos! oh he is so blessed to have you. isn't it awesome how God just uses it all to brig us to this whole new place. in our relationship with our spouse, kids others etc...oh it's a painful ride, at first. it can be very dark, and oh so hard...but oh the light at the end of the tunell is so bright...and the future is so bright. <3 love you all

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  14. Hi, I'm so sorry to be a creeper (I linked to your blog via a comment you left on Elle Rowley's (of Solly Wraps) Instagram. I was instantly captured by photos of your son Amos, who is so beautiful. I've carried with me my entire life a strange feeling that I might have a child with physical difficulties to bear; I have two little ones, and expecting a third, and I'm not sure if this will ever be true, but it's given me a strong desire to understand the life of one who has lived this. Your experience here brought me to tears. Your honesty resonates with me and I just wanted to share that. Thanks for writing this. Your family is beautiful.

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

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