Tuesday, March 03, 2009

Down-sizing...Ode to 'Pilot'

My sweetest guy snoozing away in his car seat on the 4th of July in SD...if I had only known...

Oh how I thought it would be a quick stay...


I still had hope here...

I get so pissed, angry, and motivated when I look at these pictures...the first two for obvious reasons, the third sentiment, because NO ONE, NOT ANY PERSON should have to experience what we did...all because doctors just don't look for #$%^&* Lyme's disease! START #$%^&* LOOKING! PEOPLE HAVE LYME'S DISEASE! MY KID WAS #$%^&* BORN WITH LYME'S DISEASE!

Maybe the second or third day...still oblivious that the doctors were oblivious...little did I know that little did they know...

I tried to put these in a progression of chronological order but I can't figure out how to upload them that way...Here, Noah isn't attached to anything except his mommy and daddy...notice that on my wrist I'm no longer wearing his hospital band...to me, that symbolized his freedom...

The progression of untreated Lyme's is dumbfounding. In just a few short months, my sweetest guy who captured my heart, could no longer even open his eyes, and hadn't been able to move for several months...not to mention the obvious need of oxygen and food intake. LYME's SUCKS!

My friend told me she was going through the old blog pics and found this one...her new favorite. I have about 3000 favorites...bittersweet favorites.

OT and PT for Noah. Though the hospital told us that they were scaling back on his treatments since he was 'just going to die anyway'.

My sweetest girl being chased by a pack of wild, cute puppies on our only family road trip to SD

One of our few family photos taken outside the hospital life, when life was sweet, at Hacienda Colorado, the Mexican restaurant Noah frequented in my belly, went to once (here) and where we had friends and family gather after his service

Noah and Em in their car seats, ready for Noah's very first car ride ever from the hospital 1.5 miles down the road to his first home


I realize this post is raw. And do you want to know how it all started?! Yesterday we dropped off our Honda Pilot at the dealership and walked away from it for good. It may sound dramatic...not trying to. We are trying to steward our finances better and just because we do have two cars doesn't mean we need two cars, so we made the decision to keep the one we actually own. Profound, isn't it?! Anyway, it's an inanimate object, obviously, but leaving it behind yesterday conjured up more memories than I would have expected...memories that will never be left behind.

Right before Em was born we bought a used Accord. It's the car she came home from the hospital in. We also had a red Blazer. Then, a while before Noah was born, a guy hit us and wrecked that car. We got the Pilot. The Pilot is what Noah came home from the hospital in.

Believe me, it was my idea to get rid of the car since Jason works from home and Em's school isn't far. I get that for us, two cars is nice, but in reality it's a luxury. I'm not going to lie that I loved the heated seats, but I can warm up my buns by exercising. I can ride my bike to get her or something or borrow Jason's sister's car. It's just a car. I just didn't realize how many memories it had carried over the years...road trips, and then, of course the ruts we wore as we made the same trip daily with it to and from the hospital...and then the day Jason and I drove Noah's sweet little lifeless body across town to the mortuary. It's where Em and Noah got to sit side by side in their car seats for 7 weeks together. It's another chapter, but I just didn't expect the sorrow to come. Financially it feels good to be free from it. Emotionally I am grateful that God has blessed me with a mind, heart, and arms that will never forget.

Jason: You doing okay?
Me: I miss my kid...
Pause...
Me: The dead one.
Jason: I gathered that...

It's just a daily journey, this thing called life, this thing called grief, days filled with joy, others with sorrows. It's part of the bigger picture, but only just that...a part, not the whole. One day, we will know in full. I look forward to that day!


33 comments:

  1. So do I, Ade. So do I.

    I'm so sorry. You post about it all you want. It's OK.

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  2. I don't know you- but I feel like I do... I've been reading your blog for a week- trying to read everything you've written. I can't imagine your pain you sweet dear woman... I have lymes, and it's YOUR story that brings fury to my heart that people don't know about this awful disease! I lived in denver for 3 years before I got sick... so I feel an every more 'closeness' to you and your story. God Bless you in your journey to save the lives of others through awareness, and may God Bless you through your journey of healing. I'm praying for you!

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  3. I am heartbroken and angry right along with you A! That poor sweet Noah had to go through those months where they didn't even test for Lyme's. How you could have your little man if only they had known. If only.....how do you not constantly ask the what ifs?

    It's the weirdest things isn't it that blind you to Noah - the Pilot for instance. They inanimate objects as you say...but Noah rode in that vehicle. His 'essence' was there too.

    I have a huge lump in my throat just trying to comprehend A! My heart goes out to you!

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  4. 'one day' has me thinking of selah's "glory"... oh Adrienne, I too hope one day is sooner rather than later... come quickly Lord... let the healing be complete.

    Loving you.

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  5. he's beautiful. your family is beautiful.

    i get that whole anger part on the doctors side...my boys would probably still be here if testing for blood clotting disorders was a routine test. apparently its too expensive. $2900...thats the life a child these days.

    we have a pilot too and i had memories of my daughter riding back there with her two brothers...funny the things we thing about or hold on too...

    praying for you. thank you for walking this journey with so much grace. i've been blessed because of it...

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  6. Oh, Ade...hugs, hugs and more hugs to you. It sounds so trite to say it, but I really can't imagine what this journey is like for you, my heart just hurts with and for you. Love you lots, Sister in Jesus!

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  7. Ahh..the tears are pouring as I read and looked at the pictures of Sweet Noah. In my prayers.

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  8. So sorry he is gone. I'm sure the hole in your heart is unrepairable. Praying for you.

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  9. What a sweet boy. I look forward to meeting him someday.

    I feel the same way. Driving back on our vacation in Yellowstone and through Colorado, looking in the back seat at my two oldest, thinking about how it would look with our new little one to be seated with them. The day after we got back was my regular appointment. One I will never forget. Then driving back to deliver my dead baby. I still have my big, gas gussling suburban. It's up in miles now but I dread the day we trade it in. We also brought home our youngest 2 years ago in "Big Red."

    I sympathize with Devon. The simple blood tests for clotting are too expensive. You have to have at least 3 miscarriages before insurance will cover it. Fortunately, my doctor said 2 is too many and did the tests anyway and told us he will deal with the insurance company for us. Seems like this also far too common.

    Praying for you.

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  10. Can't wait to know in full...missing our babies with you.

    love you

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  11. *tears, hugs* praying for you adrienne.

    I miss you noah. I was so glad to see these pictures of you again. Can't wait to see you in heaven little man.

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  12. Thinking of you...

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  13. noah is beautiful...my eyes filled with tears as i looked at his sweet face.

    may the lord continue to wrap his arms around you...show you his love and grace with each day.

    my thoughts and prayers are with you...

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  14. He is so beautiful. Each time you post pictures of Noah I'm just captivated by him.

    And I get the car thing. When we traded in my little '93 Eagle Talon I was so surprised how sad I felt. It was the first car I ever bought and I had paid for it entirely by myself. I got attached to that little bugger and all the miles we had put on together. I felt sad when we drove away that day. But, not the same as bringing home your baby boy. I'm so sorry.

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  15. shannon stinson10:25 PM

    adrienne...
    i am drowning in my tears right now for you. you might not want to know that a stranger is crying for you...you might not want it...but, i can't help myself. several months back, i don't even remember how, i came across your blog...and i read it...journal after journal...till i think i read it all. i cried then reading through noah's very last moments. and here, i cry again. i know this side of Heaven, we ache, we can't get away from it. and i am so sorry for the pain that you must feel. sometimes more intense than others...i am sure. and i feel intensely for you at this moment. God gave me this heart that aches for you. i rejoice over where noah resides in this moment, but as a mother, you can't escape missing him. i am so thankful that you can look back on these pictures...and remember...although, i am sure that you woulnd't need to have them to remember him...all you need is your heart that beats within you. and God made a beautiful one inside of you. i learn from you. God has taught and IS teaching me something through your pain, and so many others that He has put in my path. He knows what He is doing...all for His glory...to further His kingdom.
    all that to say....i weep with you in this moment. and even though you are a "stranger"....you are no "stranger" to me...because of Christ...and what He has done in your life...and you sharing it with us...with me. thank you. praying for you.
    sincerely...
    shannon stinson

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  16. Praying for your heart. I am so sorry this hurts so much.

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  17. i don't have anything to say, except that i still think of you and the loss of noah in this life....and i grieve, and rejoice all in the same breathe and feel like a ninny.

    bless you friend.

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  18. My heart hurts for you more than I could ever put into words...also, I want thank you. Thank you for making me appreciate my family more. Thank you for making me absolutely aware of the danger of untreated Lyme's disease. Thank you for sharing your deeply personal and profoundly moving journey. Thank you.

    *In case you didn't know. Once your pictures are uploaded to the post, you can drag and drop them to anywhere on the post that you'd like.

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  19. I love you dearly. Keep fighting this fight. Other lives will be saved because of you telling this story. Why couldn't Noah's life have been saved? Why do doctors turn a blind eye to Lyme's disease? It's so hard to understand.

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  20. He's precious Adrienne, such a sweet face. Praying for you daily.
    Is there treatment for Lymes in babies? I worry as a nurse that I could miss the symptoms and worse not push a doctor to treat a baby. Sometimes the docs give up but nurses have that gut feeling. You have to know what treatments to ask for on behalf of your patients. I am still trying to educate myself on Lymes for any babies I might care for at work.
    Debbie

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  21. My heart still aches for you. Be blessed!

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  22. Yup. Heavy. I love that you keep talking about him, though.

    It's so amazing to see him without things attached to him.

    *hugs*

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  23. My heart aches for you. I can only imagine that yours aches a million times more.
    I don't even know you, yet part of me wishes you were arms lengths away so I could hug you, somehow relieve your burden for even a fraction of a second.
    I pray for your family every single day, and when i feel low, I think of how some people have survived so much worse than what I am going through during that time.

    Through your journey, I have made major changes in my life. I always kiss the bridge of my son's noises now, when I go to bed and check on them...and take that second to feel how my lips fit perfectly there.

    I have a huge lump in my throat everytime I think of you. Your survival gives me strength that I can survive anything. Any loss.
    You are my hero, and I hope to one day, be able to meet you.

    I grieve with you A. Know that you are constantly in my heart. As is the rest of your family, and your sweet sweet beautiful Noah.

    Chantal (Ottawa, Canada)

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  24. I am a sobbing mess after reading that Ade. I love you x You are beautiful x

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  25. He is beautiful!!!! Lymes is awful and I will share your story. I live in MN, where my daughter has had Lymes, my husband had undiagnosed Lymes for years and years and is finally being treated after I spent hours on the phone and doing research and trying my hind end off to get him some help. I have friends who can't get help because the doctors don't know enough about it or don't believe in it or WHAT? I don't understand why they don't make this a bigger priority. Keep on writing and following your heart's direction. I will be reading and following your advice!

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  26. Anonymous10:11 PM

    I don't know you, nor have I ever met you...but I wanted to let you know that I just read your blogs on Noah...I am so terribly sorry for you loss. Noah is with God, and is waiting for you to come visit. Another girlfriend of mine just lost her baby and I am so heartbroken. My husband and I have tried for years to get pregnant and have been unsuccessful...Be thankful for all of the blessings in your life. I am praying for your family, and sending hugs to you all.

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  27. Emily in Charlotte3:41 PM

    I am still here, been here from the beginning - I am praying for you today. I've been there and traded a car that held all my memories of my precious Sarah. It was ridiculous how hard it was - I never saw it coming.

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  28. Anonymous11:41 AM

    Adrienne,
    My heart breaks for you! I am also afflicted with Lyme Disease as well as my husband and my beautiful 16 yr old daughter. I share your anger and frustration ith the lack of knowledge in the medical community.
    I just wanted you to know I read your blog and am praying for you,knowing your sweet Noah is in heaven!Peace!...Gretchen

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  29. Thank you for sharing the raw details. You are an awesome mommy. Stinks to just have pictures and not them. Stinks that he had to endure all of this and you did to. So sorry.

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  30. I have been reading your blog for over a year and love your openness, love for God and your honest emotion. I feel like I "know" you all, especially Noah. I love to see his pictures and hear about him even though it makes me cry, makes me miss him (strange but true) and feel so deeply for you and your family. It is an understatement to say that I am so sorry for your loss. I am so inspired by you and hope to have an ounce of your stregth in God if I am ever faced with such tragedy. Thank you for glorifying God through it all - it is so inspiring.

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  31. I too have Lyme's disease and just miscarried at the end of january. Albeit hard to loose a child before we even meet, loosing sweet Noah simply because Doctor's don't check for it is unthinkable, heartbreaking and just plain upsetting to me. My heart goes out to you and your family.

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  32. Oh my, I am so sorry, Your story leaves me in tears and breathless.

    My son who has CF is almost 7 months old and I could not even imagine what your family has gone through.

    I can relate however to the frustration of waiting for a diagnosis. My son Nathan had undergone many tests (with inconclusive results) during his first month of life while he kept losing weight. My prayers are with you and your family.

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