Monday, June 17, 2013

How is it Possible?...

Let me put it this way... yesterday and today were jam packed with Mommy and me activities and I didn't take a single photo.  As a matter of fact, I didn't even BRING my camera with me anywhere.

Those that know me well are thinking right now:  "Uh oh.  Something's wrong"

Not taking photos - especially when there are photo worthy moments (like, uh, all the time) is a sure way to expose my state of mind.  When this happens it's bad, folks.  Real bad.

I'm exaggerating... slightly.  But you can consider the above a warning that this post will be pretty depressing, pretty whiny and devoid of any photos to take your mind off of the darkness.  Apologies in advance.

Yesterday and today have been bad days for my Rheumatoid Arthritis and Fibromyalgia.  While I would have loved to theoretically spend the day in bed... that's something that just isn't possible.  Literally.  Spending the day in bed sounds awesome and you'd think it would be just what I'd need.  But for someone with arthritis, spending the day in bed - or spending too much time even "still" is worse.  It causes more stiffening which defeats the entire purpose.  

And another reason why I can't just "check out?"  Brian.

Yesterday we shipped Daddy out of town to enjoy his Father's Day gift:  guilt free alone time.  (Seriously - isn't that the BEST Father's Day or Mother's Day gift?  A day off, guilt free??)  I didn't say anything about my physical issues because, knowing Ed, he would have stayed home and given up his Father's Day.  That wasn't happening.  So I planned an afternoon with my Mom at her place.

But there was still the morning.  It takes me quite a while to get moving on days like this.  I endured a long morning of "Mommy, I'm lonely.  Mommy, I'm bored.  Mommy, I want you to get down on the floor and play with me." and on and on...

We made it to my Mom's retirement village and he had a great afternoon... and so did I.  My Mom's place has an indoor (heated!) pool so Brian and I went swimming for a while.  Fortunately, being in the water is good for your joints!  Right?  Unfortunately, continuously catching a flying four year old off the edge is fun at the time, but causes a painful physical hangover the entire next day.  Lesson learned.

Regardless, the pool was fun and Brian impresses me more and more with his attempts to swim.  He starts two solid weeks of daily swim lessons June 24th so the timing of his newest passion is perfect.  After swimming, we all got dressed and had dinner in the fancy dining room!  Brian was such a good boy... and we both LOVED the food.  My Mom is living the high life, let me tell you!  This place has everything.

When we got home, Ed was just pulling in from his "day off" and we showered him with kisses and cards and then Brian was off to bed.  By that time I was spent in every way.  I could barely think, let alone write a blog.  I feel awful that I didn't have the energy to write a Father's Day post.  Especially since I happen to think I chose the best possible Father for my children.  But Ed couldn't have cared less... he's so not about that.  (I still feel guilty.)

I suspected that I might wake up feeling worse... and I was right.  And as I sat in my pajamas at the kitchen island trying and trying to get myself in gear... and listening again to the chorus of "I'm lonely.  I don't have anyone to play with.  I don't want you to have your "achies" today, Mama." I finally had to leave the room and cry.  And cry.

These are the things that went through my mind:

Why hasn't my RA gone into remission??  My last couple pregnancies it did - and quickly.  Why not now?  It feels like it's getting worse!!

How is it possible that Gavin is dead?!?

These are the days I really miss having help at the house each day.  It was such a giant help for me physically.  And it ensured that the boys were both entertained... among many other things, obviously.

What am I going to do about Brian?  On one hand, I don't want to be enslaved to his need for constant entertainment.  He needs to adjust to our unfortunate new normal - for now, he's an only child.  There isn't a built in playmate around here - even in me.  And with the baby on the way, I need him to really understand that I won't always be available to him when he asks.

But on the other hand - this child has suffered a profound and devastating loss.  He misses Gavin terribly and truly IS lonely.  Which is why I feel so torn and so guilty when I don't spend time with him every waking moment.  It is such an intense guilt trip.

I've received lots and lots of great suggestions of ways to keep him busy this summer... and I do plan to take advantage of a lot of them.  He'll take swimming lessons at the YMCA (Mommy gets to sit on the side and take pictures)... a mini gymnastics camp for two weeks in July at the YMCA... we're going to go to the beach a few times... play dates with neighbors and friends... among many other things.

How is it possible that Gavin is dead?!?

I calmed myself down and came back to Brian and decided that I needed to take him somewhere.  Preferably somewhere that Mommy could sit her decrepit body down and watch the fun.  And, by God, I hit the GOLDMINE this morning.

Bounce U.

I don't know how I didn't know this place existed in my backyard.  On their website it showed they had an "Open Bounce" session from 10-12 for $8.95.  It was 9:30.  I got us dressed and we headed over right away.  At first, we were the only ones there!  It was a big room with four HUGE bounce structures.  Slides, rock walls, basketball, etc.  Within fifteen minutes, two women showed up with their four boys.  The boys (aged from 4 to around 10) introduced themselves (unprompted!) to Brian and took him into their group.  For the next two hours I watched him run, laugh, play, sweat, high five his new friends and jump.  I'm sure the two other Moms might have wondered why I kept wiping tears away, but I was so relieved... so happy... and so exhausted.

When we got home, he gobbled a huge lunch and then... ready for this?... he laid on the couch for an hour.  Bounce U has a summer passport for $50.00 - unlimited open bounce sessions.  Yes, please.

Brian and I had two hours to recover before his friends, Seamus and Molly, were coming by to play in the backyard.  They played on the slip n slide, in the baby pool and water table... it was a total Gavin afternoon.  How I wish he was there with us.  I just sat, mostly, next to my good friend Patti and watched in a daze as the kids splashed and laughed and ran around.

I don't know what I'll do if my RA gets worse.  I'm not sure how I'll function.  I am usually able to handle this so much better, but now it has me completely overwhelmed.  I am tired... Gavin died... I'm pregnant... I'm buried, so to speak, under a mountain of those to-do's that are still not ta-done.  I know everyone says "It can wait!  Don't worry about it!" but they don't understand.  Seeing that mountain of funeral items, memorial gifts, unwritten thank you notes, un-returned dishes, perfectly intact photo boards from the funeral... it's all very difficult to see every single day.  I want to get it all done - and put in a proper place - because maybe, just maybe, it will help me move forward just a little bit.  Just a little bit.  But there never seems to be the time... or the energy... or the un-distracted attention that I need for these tasks.  

I am not looking for anything with this post.  I'm not fishing for sympathy or advice or praise or criticism.  If anything, I ask for your positivity and perhaps a prayer or two.  I'm struggling.

How is it possible?  Really.  How is it possible...

In other news, tomorrow is a big day.  Beyond an ultrasound in the morning where I'll get another glimpse of Hope... Ed and I are headed back to the Emergency Room to meet with the entire team that was in the room working on Gavin on April 10th.  I requested this meeting and I'll explain more about it after the fact.  It will be very different than our meeting with the folks at Gavin's hospital, DuPont.  There will be no cameras, no hospital P.R., no video of our talk.  I am viewing this meeting as a very sacred event so if you could send a prayer my way that this goes the way I envision it, it would mean a lot to me.

If you got this far... thank you.




59 comments:

  1. My Mom also suffers with RA and Fibro. I am guessing there is not much you can take while growing a baby Hope, right? I will be sending healing hugs to you and lots of prayers for pain-free days to come. Because, well, that's all I can do.

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  2. Kate - i wish (pray) so many things - that i was there with you to play with Brian, that I could be with you to tackle that pile together, that I could somehow lighten your burdens. I hope that you have friends nearby to do those things. For the rest of us, i will certainly pray - tonight, tomorrow, and in every day to come, that your heart would heal, that Hope and (HOPE) would continue to grow, and that peace would come.

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  3. You & your family are in my thoughts & prayers. I started reading your blog just before Gavin went on his "super hero mission". I too have fibromyalgia, I have 3 boys ages 15, 12, 10. My middle son has a rare growth disorder. Here' a ((hug)) for you (a gentle one of course). Hang in there.

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  4. You are amazing ... Honest, real and in pain physically and mentally. I am glad you have this gift to write to heal you. The time limit in healing is infinity as far as I'm concerned...huge hugs!

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  5. I am sending you many, many big warm hugs. I just started following your blog last week, so I have some catching up to do. But ALL of you are in my thoughts and prayers.

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  6. Girlfriend...God Bless you! You have endured so much and yet you are the poster Mom for all that is good and awful. I had some problems...Lord thank you they are NOTHING compared to you! Give yourelf a break and know that you are loved, that you are a wonderful Mom and wife and when you join Darcy and Garvin in heaven Your crown will be heavy with the jewels you so deserve! God is in your corner girl..lean on him!

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  7. just sending prayers

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  8. Praying you feel better soon...also that things go well for you tomorrow
    Michele in Syracuse

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  9. you are struggling and have have suffered such a loss. My prayers and thoughts are with you as you continue down this journey, a journey of grief, pain, and a growing miracle inside you...A stranger from MA.

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  10. Praying for you. Truly. I love the phrase in the bible that says something about how God can comprehend our groanings, so I know he hears you in your weakest moments.

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  11. Praying here for you, your husband, Brian, and baby Hope - for all your intentions, desires, and needs.

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  12. Kate, I never get tired of reading the things you post - its like waiting to hear from a good friend every day! That said, hang in there! Every pregnancy is different, so the RA might NOT get better this time, but (as cliche as it always sounds to me!), God never dishes out more than you can handle. I lost two siblings as a child; you are doing an incredible job loving on Brian, and even if you can't be his constant playmate, he is going to be okay - not despite what you and Ed are doing for him, but because of it. It's okay to be overwhelmed... just don't forget that its also okay to ask for help, too. I send prayers and as much good karma as I can muster up every day in your direction!! ;)

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  13. Bless your heart! Motherhood can be tough and it definitely isn't for sissies! I've been there done that and I know "those" days of just getting through. My advise: close your eyes and feel your heart beating. That's your life and it's beautiful and blessed. Take a breath and know you are a child of God. Feel His arms giving you the strength the day requires. Hugs from a Grandma is Kansas.

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  14. Sending light and strength your way.

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  15. Head up, shoulders back, MOMMY commander in charge. Keep your eye on the prize. Look forward not back remember in glory, remember the greatness, forgive the loss. Love like no other because you are MOMMY commander. Your staircase of life will always be a spiral one, just make sure that as you are climbing that you don't get dizzy and loose sight of the future. I wish you the same thing every time I read your blog, PEACE!

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  16. I am sorry you are dealing with so much pain, emotionally and physically. I am not a doctor, but from my understanding there is a psychological aspect to the diagnosis of fibromyalgia and stress can cause symptoms to flare up or worsen. I hope you get relief soon, but I have a feeling it is your level of stress that is keeping it around. Take care.

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  17. One thing a day. Just one thing and now you are doing that and each "thing" has a priority. Good luck tomorrow to both of you.

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  18. Thoughts and prayers continue to be with you. So glad you found Bounce U, sounds like a great fit for Brian!!

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  19. Holding space for you and praying.

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  20. I feel for you. I find it hard to keep up with my 3-year-old and I'm not in pain! Pregnancies are weird--each one is different, with different hormone levels swirling around in there. So your body doesn't always react the same way. Darlene mentioned that stress can cause flare-ups, and she's right--and you've got stress, for sure. I wish there was some physical way I could help you out, but all I can do is send positivity for you, Brian, Ed, and Hope, and that your meeting goes well tomorrow.

    Hang in there, Kate. This, too, shall pass.

    Kerry

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  21. Things can wait. Just getting out of bed is enough right now. Focus on you and your sweet family and growing baby.. the world understand. I promise.
    Kendall

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  22. To be physically unwell while still wading your way through the emotional unwellness of Gavin's death just seems unfair. I cannot stress how much I understand how the undone can stress you to no end, and yet there is simply no energy or time to put toward making it done (my daughter's only birthday was last month; the thank yous sit - blank - on my kitchen counter; she entered hospice care 2 weeks following her birthday and the days just bleed into one another at this point).

    I know you need to do the thank yous - but can you have Ed or a friend at least help with (if not handle) returning the plates and taking apart the picture boards? At least that will knock a few things off your list and allow you to do something manageable - say 5 thank yous per day. When it's done, you will feel a million times better but you need help to get to that point.

    Sorry this was a novel - I could have written so much of this post myself. Now I need to work on taking my very own advice! Much love Kate!

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    1. I was thinking the same thing--so many who know and love you want to do something to help. If returning dishes and sorting photos can help ease your burden, they will help you and feel that they have been useful. My prayers are with you all.

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  23. Single, childless, healthy, but it's the end of the day, I feel worn and blah and am slouching over the computer thinking about my to-do list... it happens. Life goes on. And most times, noone else is paying attention to what we didn't do!

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  24. You are so, so strong. Best wishes for your emergency room event tomorrow. Your thoughtfulness is a beautiful thing.

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  25. Sending prayers for you and your amazing family!

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  26. Some of us do understand how the piles of reminders tug at us... Is there a good friend who could help with a few of the tasks, like returning those dishes and/or dismantling those boards? That might give you an ounce of reprieve and a tiny feeling of accomplishment...

    So glad you found Bounce U and Brian found a few new friends! Joy to you both!

    Here's wishing you the best of whatever you desire from tomorrow's meeting.


    Hugs and healing, Kate...

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  27. Holding space and sending love.

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  28. Hang in there. If you have time, put on old Katherine Hepburn movies in the background. Those always seem to help when I'm miserable. Watching her sing "I can't give you anything but love ... baby" always makes me smile and distracts me from the world.

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  29. Prayers and love sent your way!!

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  30. I Corinthians 13: end of first section -- "And now these three things remain: Faith, Hope and Love. But the greatest of these is Love (Charity). May the Love of God surround you and soften the physical pain you suffer right now.

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  31. Dear Kate,
    Sending prayers and love to you. God Bless you

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  32. I pray for you every day, and tonight will be no exception. I am sending so much positive energy your way.

    Katie from MN

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  33. Hang in there momma, hugs and prayers to you.

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  34. As a mom I can completely relate with your struggle between wanting to help Brian be more independent and adjust to his new normal, and being there and playing with him all of the time. And all with the RA, grief, and pregnancy. Keep on keepin' on, Mama!

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  35. You are still amazing, strong, smart and will get through this. Baby steps.

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  36. For someone who thinks she isn't getting much done, you sure are getting a lot done - I keep reading about meetings, meetings and more meetings, not to mention various appointments and activities with Brian. Maybe the things in your dining room aren't getting done - but the other stuff sounds more important. Maybe you just have your priorities straight?

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  37. I read your blog, but seldom comment. I always have you in my thoughts and prayers. I am praying for some relief for you - emotionally and physically. You are probably the strongest person I (don't really) know. I honestly don't know how you do it. All anyone can say is that we're praying for you, for Brian, for Ed, for Hope, and I hope you can feel all of that. This post, more than any I've read so far, made me want to cry for you, and I know it sounds weird, but I wish I could be there to help. I'm a new grandmother, so maybe that's it. I know how tired my daughter can get, and she has not faced anything like you have had to bear, so my heart goes out to you.

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  38. May God bless you tonight. I cannot fathom an ounce of what you are enduring. I can only pray. May the Lord be very present to you. May He give you relief from your physical discomfort and give you peace in your heart and mind. You are doing an amazing thing. May Hope bring you joy in the morning.

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  39. You are an amazing woman! I know we do not know each other but I think of you often.Thank you for writing this blog, I feel that every time I read what you write I am finally grieving the lost of my two children.I thank you for that.I was never able to grieve until now.It has been 6 years. I am sending good wished your way for tomorrow.
    Thank you again.
    Caryn

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  40. Hugs and prayers!

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  41. I read every word. I care. Hugs.

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  42. I just wanted to commiserate. I have fibromyalgia, dysautonomia, and have been newly diagnosed with Lupus with an only child of four. And during the day, I'm his primary caretaker. I know the frustration and guilt of not being able to "be there" for my child when the days get like that. The pain of just getting out of bed...opening my eyes to the day and cataloging the day's random symptoms du jour. And I can't imagine how the stress of Gavin's passing must be just creating one flare after another. My mother almost died this year and the resulting flares nearly ended me. Even my son's cute face and giggle lost their healing properties. These illnesses are absolutely horrible, hitting us especially when we are down. It's the very definition of unfair. I feel for you on a very personal level...and I wish I could wish away your physical pain so that you could have a moment. But we never do get those moments when the stress is high.

    But you, like me, are a great mother. Cause we still get up. We still trudge on and still try in the face of sometimes unbearable pain. Brian may not always have a playmate, but he has a role model that will propel him through any obstacle that comes. Cause he will know it's ok to hurt and slow down. That it's ok to cry and ask for help. And that the point is that you keep going cause the pain always lightens up. The good days always come. It may take what seems like forever...but they come.

    By the way, I am Jo Ashline's friend, Lisa...the one who painted the portrait? And if you ever want someone to commiserate with. Someone who truly understands at least the pain part....well, you have my email.

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  43. You are a great writer. Maybe opt out of individual handwritten thank cards & instead type up a catch all thank letter of appreciation for kindness, sympathy, food, donation, etc. Use pretty paper & a nice font. Sign them all for a personal touch. Carry your address list with you or pre-print labels, carry stamps & take your letters with you. As you wait for appointments, sit by the pool, etc fold your letters, prepare your envelopes, etc. If you have a dish include a typed note to say sorry you haven't returned it, but they can call if they need it & you will deliver it. Chances are, very few, if any will call. I haven't suffered your loss, but I spent many weeks in the NICU, twice. It took me months to write thank you cards & I probably missed a few, but it did give me some peace of mind for the ones I did send.....even if they were months later. The guilt of not saying thank you can consume you, but the reality is most people understand & can relate in some manner.

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  44. Kate,
    There isn't a day that goes by that you and your family are not in my thoughts; I will continue to send positive energy your way (all the way from Kuwait!).

    P.s. I am totally with you on the whole day off thing for Father's Day (and other holidays, too). My husband and I do that, too, even if it just means one of us gets a guilt-free day laying in bed, doing nothing but watching a Law & Order: SVU marathon. :)

    Sending lot of love and hugs your way,
    -Brigid
    http://www.thepinkrollercoaster.com/

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  45. Sending you big hugs, prayers and healing vibes all the way from sunny Ibiza, Spain :) x

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  46. It's hard to want to get things done, to put things away, to move forward, especially when on some level we just can't do it (whether it's a physical, emotional, or mental level that stops us). It's very hard to wait and just let it go till we are ready but sometimes that's the "lesson" we need. We have to wait and then the day comes and we start and we get done what we've been wanting to do, but until then, just breathe and realize it's not going anywhere. It can be almost maddening to not be able to do it, but it will get done someday when it's time. I send love and hugs and peace to you, Brian, Ed, Hope, and of course Gavin, I always remember and think of beautiful Gavin.

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  47. Have you looked to see what aquatic classes your YMCA has for adults? Mine has a couple that are supposed to be good for people with arthritis. They also have some prenatal classes. You might try one of those to see if they help. And as for Brian, most YMCAs have a childcare center. It would give you a break to do something for you and it would give him a chance to play with other kids.

    I will be praying for your meeting with the staff from the Emergency Department goes well. I'm also praying that your RA and fibro settle down soon.

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  48. Sorry you had a crappy day hope you feel better soon. Glad Brian had fun. Will be praying your meeting goes well.

    PS. Don't feel guilty about not spending more time with Brian you're doing the best you can :)

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  49. You are welcome, and you are in my prayers. Thank you for your honesty and heart.

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  50. Sending you love, hugs and prayers from San Diego, California!

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  51. My prayers go out to you and all your juggling. You are amazing!

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  52. Kate, I am praying for you and your family. It can be difficult to see the good when so much sadness surrounds us, but know that you are doing great. I don't know you, but it is clear that you are giving everything you have to getting up and doing your best every day. Right now, just show up for Brian and Ed. You are enough just as you are with whatever you can accomplish. You don't need to do anything else. I am also praying for Hope and for a safe arrival in September. Sister on, Kate. You are incredible!

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  53. Just wanted you to know that I am praying for you.

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  54. Praying. And I gotta say, good for you for getting that off your chest! Continue to write away your real life... it will help!

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