Charli Anna Foundation

It's a big week here around the Merseal house.  Friday will be Charli Anna's 1st birthday.  I keep catching myself in the past more and more lately, remembering how we were feeling this time last year as we were excited and awaiting a healthy baby girl.  I was big as a house!  I remember going to a birthday party for my mother-in-law about this time last year and all the people at the restaurant kept staring at me.  I heard someone say, "I've never seen a pregnant woman that big!"  I heard another say, "Ouch!  That looks like it hurts!"  At the time, I was frustrated that Charli Anna wasn't here yet.  Now, I am glad she stayed in the warmth and comfort of the womb for as long as she could.  Then our world turned upside down.  The most tragic events you could imagine were just a few days away and we had no idea!!!  Everyone says their worst nightmare is to lose a child.  I would have said that a year ago.  I would still say that today, but having gone through it, I can honestly say it has changed the way I think about everything.  I see things I didn't see before.  I value things I didn't value nearly enough before.  God has seen me through some dark, dark things in my life.  Jason and I think those other events, which at the time seemed like the end of the world, were just hardening our shells for the "big one", losing a child. 

I haven't posted in a while and I have a lot to say.  I hope you all don't mind.  I was given a book by a dear friend.  It's called "The Shack".  I read it tearfully, but gratefully because it felt like God was talking directly to me.  I have been profoundly touched by reading this story.  While some of the theology of the book is different than what I believe, I can honestly say it felt like I was personally having a conversation with God.  I've talked to various people about the book.  Some of my friends disagree with the arguing with God, the lashing out, the way God presents Himself in the book, etc, etc. What I think is that I feel exactly like the character in that book felt about losing his child.  I have anger sometimes. . . really INTENSE anger.  Most people go through their entire lives never feeling that type of anger.  I told a friend shortly after Charli Anna's death, "Every conversation I have with God is an argument right now."  And I meant that.  The amazing thing is, the same accusations this guy makes toward God are the same things I've been struggling with, arguing with Him about.  However, the book took me on a journey through those emotions to realize that I was actually judging God for the way that He has chosen to use me to reach others.  I don't have it all figured out, but I have a new perspective and the load is a tiny bit easier to bear now.  OK, well I won't go on about that anymore, but if you're one of those people we've gotten to know because you've also lost a child, I highly recommend it!

Now, if you're one of those people who has heard me complain that Jason has dreams about Charli Anna all the time, but I never do, I have some great news!!  I dreamt about her last night.  I slept til noon because she just kept coming back and I didn't want it to end.  She was home, on our bed, rolling around, but not feeling well.  Even still, she kept smiling.  She had rosy cheeks and I was preparing to give her a bath.  It was just like what a normal day would have been.  I hated waking up!  It's a good thing it wasn't a work day b/c I probably would have called in sick so that I could spend a few more hours with her.

If you haven't heard, we had an AWESOME turnout for the Charli Anna Foundation's Bowling/Euchre tournament on Jan. 24.  We raised approximately $5,500!!!  That's amazing!  We will be revealing some new and exciting plans in a couple of weeks.  We have some details to work out first, but this foundation is going to be able to help more families than we ever dreamed!!!  Praise God for that!

Pray for us this week.  I don't know how this is going to go.  I don't know if we'll be able to "celebrate" or if we'll just cry, or what?!?!  I guess we'll just do whatever we feel like doing on Friday.  Please keep us in your prayers!

So today was the test.  Today we took money to a family in the CICU at SLCH.  We had to park in the same garage, walk the same path, use the same elevators, enter the same big wooden doors into the CICU, walk past room 6, and go see Hadley.  On the drive up there, Jason and I wondered if we'd be able to do it.  I bit a hole in my lip just thinking about it.  BUT we decided that if we're going to do this foundation and do it right, we were going to have to face things like this and that we can't be falling apart.  I mean, we intended to go to the hospital to help HADLEY, not make the trip all about us.  So, we pulled up our boot straps (not literally:) and DID IT!!!  Thankfully, the Griders had purposely avoided having Hadley placed in room 6.  When she was placed back in the CICU, dr's told them they may have to be in room 6, Charli Anna's room.  Holly and I spent quite a bit of time in that room or at least in the door way of it, visiting.  She, too, felt like room 6 carried too many memories.  They put Hadley in room 12.  It's a better view anyway!  I'm proud of myself and Jason for handling the situation as well as we did.  We were FOCUSED on getting a job done and making Charli Anna proud.  Neither of us even looked at the door of room 6.  I can't tell you if there was another baby in there or not.  My eyes couldn't bear to look.  So, I just didn't.  One day, maybe I'll drive up there for the purpose of mourning, but today that wasn't our purpose.  I just can't believe we did it!  I'm so glad we got to see our friends, the Griders, the nurses, the doctors and even Phyllis at the check-in desk.  We miss them all so much!

As we go about preparing for Christmas this year, I remember a conversation we had with Dr. Huddleston while Charli Anna was in the CICU at SLCH.  We were half laughing/half complaining that we’d be setting up a Christmas tree in the corner of room 6 if they couldn’t come up with some answers.  Dr. Huddleston thought for a moment, then smiled and said, well, I hope she’s home with you before that.  That conversation took place a few weeks before Labor Day and he joked that we should just take one holiday at a time, but that we should give up on the idea of being home before Labor Day.  Looking back, that seems so surreal.  I think about that little room in the CICU and how many times we complained about the uncomfortable chair, the view of the “fountain” outside the window (the fountain was some sort of drainage system atop the hospital), the fact that we were stuck there at the hospital, the cafeteria food was not great, etc, etc.  Wahhh, wahhh, wahhh!  Now, I just long for those things back.  Oh, how I wish I was putting up a Christmas tree in the corner of room 6 in the CICU!  Oh, how I wish I could sleep in that uncomfortable chair once again!  Because those things would mean our baby was still with us.  Now, as I lay in my comfy cozy bed, sometimes I have dreams that I’m asleep in that silly chair at the hospital.  When I awake, I realize that I wish that dream could last forever.  The reality is scarier!

You may have heard Jason or I say “Everything’s just different now.” Well, that includes the holidays, shopping, family pictures, etc.  The Thanksgiving celebration already has a different feel to it.  Yes, it was just me, Jason, Taryn & Lauryn last year and the year before, and so on, but there’s so obviously something missing now.  I mean, we talk about Charli Anna pretty openly, but if we talked about her every time we thought about her, we’d spend our days sitting around focusing on what might have been.  Sometimes it’s just best to let it be the elephant in the room.  Most of the time, that’s exactly what we do.  That doesn’t mean we don’t all feel it, though.  Also, shopping is different.  I find myself looking at Christmas ads with baby toys, unmotivated to look at much else. This loss just colors everything we do.  Last time I went to JCPenney in Farmington, all I could think about was the time we went there to shop for a onesie and tights for Charli Anna for the funeral.  We stood there in the store the day after our baby died, looking around wondering How do you go about shopping for panty hose for your dead child? When the clerk asked if she could help us find something, we didn’t have the heart to tell what we needed.  When we drive out to the graveyard to visit Charli Anna’s grave, among the other floods of emotions, I’m hit by the memory of me and Jason walking around looking for a “good” place for her to have as her final resting spot.  We walked to every corner of that graveyard talking about what we wanted for her, what was important to us in a grave site for our baby.  I mean, how do you define these things?  Who really wants to have to do that anyway?  If this posting seems a little more cynical, I apologize.  I know it’s Thanksgiving.  I know there should be a spirit of thankfulness for the things I still have, which are many, but I’m just being honest here on this blog about what an incredible challenge it is for me to be thankful right now.  I’m facing it head on, though.  In fact, earlier today I was searching through some photo CDs of Charli Anna, trying to select some to put on this website.  I got distracted by some video clips that I had never seen on these discs before.  (Perhaps they were hidden from my view until this particular day for a reason?) I don’t know, but as I watched them, I cried my eyes out!  How does that help me to be thankful?  I’ll tell you how (and I hope you can handle the honesty):  That poor baby was swollen, bruised, struggling for every breath, barely able to open one eye, and she just looked miserable.  It looked like something from a nightmare.  I miss her, but I’m thankful that’s over. . . for her.  It’s not over for us and it never will be, but the misery is over for her and she’s at peace.  I’m sure she’s breathing just fine now, smiling and laughing it up!  My misery is a small price to pay for that!Speaking of those video clips, I found one from July 26.  This was 2 days before she died.  I was holding her and Jason was video taping.  We both knew it was close to the end.  My face was stained with tears.  You could see on the monitor that Charli Anna’s blood pressure was 53/20 and her heart rate was close to 200.  OK. . . if you know anything about blood pressure and heart rate, you know she was barely alive at this point.  As Jason was standing over us, video taping, that sweet baby was stroking my arm to console me because I was crying.  She couldn’t even open her eyes, but she found the strength to leave me with that wonderful memory.  I’m thankful for that loving gesture from her.  She’s amazing!

Well, Jason and I are gearing up for the holidays.  I know everyone says the holidays are hard, especially the first year after you've lost someone.  To be honest, I try not to think about it.  The problem is, we haven't really gotten past losing Mom just yet, so this new loss is REALLY going to throw us a curve I have a feeling.  We haven't redefined our traditions since Mom passed.  I mean, it was always Christmas Eve at Faye's house and then Christmas Day at Mom's house.  It was the same tradition every year.  For the past couple of years, we've tried different things and I'm hoping this year we can redefine our traditions.  Larry and Phyllis have really helped.  We're going to spend some time with them over Thanksgiving and Christmas and we're looking forward to enjoying our time with the new family members we've acquired like Gena and her family, Phyllis, Braeden (Ted & Stacie's baby) and Payten (Glenda & Bret's baby).  I just hope we don't get caught up in the "what might have been" as we try to go about celebrating holidays.  Thanksgiving will be the first hurdle.  I KNOW we have things to be thankful for.  I just feel like it takes a lot more effort to be thankful than it used to take.  Please pray for us as we cross each "first" mark without our precious Charli Anna.  The challenges before us are ones we CANNOT overcome without the grace of God.  Thank you for the prayers we know you'll be sending up!

Well, yesterday would have been Charli Anna’s 9 month birthday.  Sometimes it seems like it was a lifetime ago, but sometimes it seems like just yesterday.  More often than not, it seems like nothing but a bad dream. . . as if it happened to someone else.  Jason and I both struggled throughout yesterday, but we made it!  I hope for tonight’s even, we can set all that aside and remember the good parts while we raise money to help other families. 

One of the things that has been sticking in my mind lately is whether or not the faith I have is strong enough to endure this trial.  Often times, I have heard that when you lose your child, you begin to question everything. . . even your faith.  Before this loss, I thought that was ridiculous.  I mean, how could anyone EVER question what happens to them when they die?  Back then, I was basing my faith on my own life’s end. . . NOT the end of my child’s life.  Something about that concept is quite different.  It was easy to stake my own eternal future on God’s promises, but to rest my child’s eternity on those promises has been, well, a challenge.  I suppose my questioning of these things demonstrates the fact that if I had proof, SOLID proof, that I am going to see Charli Anna again one day in heaven, then it wouldn’t be “faith”, now would it?  So, over these weeks of grief and turmoil, I’ve questioned my faith.  I admit it.  Is it real?  Or is it just something I exercise to make myself feel better?  I can’t afford to be wrong on this issue.  It’s got to be all or nothing.  I’ve contemplated this for hours, prayed, argued with God.  I’ve concluded that there have been too many times in my life when I’ve seen God move for me to declare that He’s not real.  There may not be “written in stone” proof for the world to see, but there have been moments in my own life when God has made His presence known without a doubt.  That’s what I have concluded.  That, yes, I will see Charli Anna again and my mom.  Jason and I were discussing this last night and we were remembering some of those moments when God has moved in our lives.  I’ll share one of those with you.  If you knew my mom, you’ll LOVE this! When Mom was soooo sick, we were out at her house.  She was on hospice care and we knew she would be passing any day.  We noticed that she was talking to “someone” but that it wasn’t one of us caretakers that she was talking to.  I noticed she was reaching out with her hand and patting the air as if she was patting someone who was invisible to my eye.  I asked her, “Mom, what are you doing?”  She said, “She’s such a pretty girl, isn’t she?”  I said, “Is someone on your bed?”  She said, “Yes, don’t you see the little girl?  She’s so pretty!”  I didn’t think much about it until a couple of days later when she was STILL carrying on conversations with the mysterious little girl that none of us could see.  I thought maybe the cancer had taken over her brain function. . . and then one day something special happened.  I was sitting there by Mom’s bed in silence.  Mom’s eyes were open and she was talking to the little girl again.  She began to comment about the stairs that the little girl was showing her.  Apparently they were “beautiful, just like you” (she said to the little girl).  The girl showed Mom lots of things, but Mom found herself unable to describe them to me.  The next day, Mom wasn’t coherent and the day after that, she died peacefully.  Now, I look back on that moment and I have to believe that little girl was Charli Anna.  You know, having another child wasn’t even a thought in our minds at the time, but it makes sense that she would have such an important job up in heaven, doesn’t it?  Am I crazy?  I mean, I’m choosing to believe that my daughter is and has always been a “tour guide” of sorts for the heavenly kingdom.  Maybe I AM crazy, but I know one thing.  If I’m ever on my death bed, I won’t mind if Charli Anna pays me a few visits and shows me around!

On Wednesday, I went to Siteman for an appointment with a hematologist.  The purpose of the appointment was to find out if I carry any clotting disorders because we suspect that Charli Anna had more than one.  A team of doctors did a thorough examination, like none I've ever had, and it seemed like they were looking for some very specific things.  The lead doctor was wonderful.  He listened with a trained ear, looked over everything, and sent me directly to the lab for about 6 blood tests.  I called today and got the results.  They could find NOTHING!!  Also, he explained that the only clotting disorder that we can PROVE Charli Anna had was Factor V Leiden (because that is a gene test) and she was heterozygous for that.  Even if Jason and the girls are carrying this gene, it's not a big deal unless you are very very sick.  Thus, it WAS a problem for Charli Anna.  He explained that when you're as sick as Charli Anna was, your clotting factors kinda go crazy and do all kinds of weird things. . . . so all the blood clotting tests they did on her at SLCH were not accurate results with the exception of the Factor V Leiden.  So, Jason and the girls don't really need to be tested because Factor V is no big deal.  Of all the clotting disorders, this one is relatively minor.  If Charli Anna had more than one clotting disorder, that will remain a mystery because that's just information we don't have access to.  So, the results put us at ease.  The only reason we were worried about it with me is because I have had 2 miscarriages in addition to the 3 live births I've delivered.  We were concerned that I carried multiple clotting disorders and could have passed them on to the girls, which (sigh) is not the case!  Thank goodness!

Ok, so I thought about how much Taryn and Lauryn are afraid to talk about Charli Anna, so I ordered some books online.  Yesterday I received the first one.  It's called "The Empty Room" and boy, was it an eye opener!  While parents struggle with the loss of a child, sometimes the other children have feelings that go ignored.  I also realized that many children have the notion that the parents wish the other child had died instead of the one that did.  Like that the favorite child passed away. . . .the wrong child died.  That's NOT how Jason and I feel AT ALL, but I'm glad I read that book so that it can stimulate a conversation between us and the kids so that they'll know how we truly feel.  I never would have thought of that at all without having read that book.  I hope to be able to finish the book in the next few days.  If I learn as much from the rest of it as I did from the first 3 chapters, I'll have a whole new perspective!

Man, Sunday nights and Mondays are real hard for us.  Actually, Jason and I just noticed this last night when we were laying in bed.  How long has it been???  And we're just now realizing this???  I guess neither of us ever really thought about the fact that Charli Anna died on a Monday, but subconsciously we both knew and it was affecting us more than we realized.  On Sunday nights, I lay there and rewind.  It's absolute torture.  Last night I rewound to the time when I was carrying Charli Anna.  I had a miscarriage just before conceiving Charli Anna, which really broke all of our hearts, but I never understood how much that miscarriage had scared Lauryn.  So, when I was about 5 months pregnant with Charli Anna, I noticed that Lauryn seemed "scared" of my belly.  I sat down with her and asked her why she was so afraid.  She said, "I want to love the baby, but how do you know it's not going to die like the other baby?"  I was floored, but I kept my composure, reassured her that Charli Anna was going to be fine, let her feel Charli Anna moving around inside me, and promised her it would be OK.  Looking back, I think to myself, What kind of damage did I do to Lauryn by promising her something I had no business promising her?!?!?!?!?  She was keenly aware of the dangers and the reality of what could happen and I wasn't willing to see those dangers.  I was oblivious.  Sometimes, for reasons I just explained, I wish the doctors had found out BEFORE Charli Anna was born that she was a very sick baby.  Sometimes, though, I think that would have made the pregnancy miserable.  Still, it would have been nice to be prepared.  I worry about Taryn also.  She doesn't like to talk about Charli Anna.  She has probably taken it harder than anyone realizes.  While Charli Anna was alive, she was very connected to Taryn.  She lit up when she heard Taryn's voice and if any of you have seen Taryn interact with younger children, you know she has a knack for it!  Please continue to pray for Taryn, Lauryn, me & Jason.  Faye & Benny and the rest of the family need your prayers, too. 

Written just after the one-month anniversary of Charli Anna's death

I can't smell a flower like I used to.  The aroma is weak since you left.

I touch my tennis racket and the feeling, the rush of competitiveness is gone, replaced with frustration alone.

I look around and see that what once was a colorful landscape, a bright cheery room, or a lovely blue sky are now just dull and lifeless.

When it used to rain, I'd think about my car windows, how I should dress differently, and my basement leak.  Now when it rains, my only thought is, "God, you've asked me to trust you with this, and I'm trying, but right now I need you to show me you're protecting my baby from this rain."

Sounds that remind me of you are sirens, helicopters, alarms, babies' cries, which are obvious.  But there's also the sounds of birds singing, wind blowing, and crickets chirping that remind me of all the sounds you never got to hear.  I hope you hear them now.  I sense that you do.

Thank you for the butterflies on the one month anniversary.  You left them, all 4, in a very special place.  I'm so glad you left one for each of us. Your sisters think you're funny.  I think you're wonderful.  Your daddy thinks you're too good for Earth.

Written by Heather Merseal

Tiny hands with long fingers,

Swollen bruised legs with skinny feet,

Fuzzy, downy hair upon her head,

A smell like sweetness and softness,

A swollen little face except for her nose,

Ears folded in from the puffiness,

A scar down her chest like a battle wound,

Bruises, tubes, wires, stickers, bandages, blood,

Eyes, eyes, eyes. . .

Blue, full of fear, full of love, full of questions,

but an obvious trust of certain voices.

Looking like “I love you.”

Looking like “Help me!!”

Looking like “I know what’s going to happen and it’s OK.”

Taking a breath, gripping Mommy’s hand,

Taking a breath, a look of fear,

One more breath, a look of peace.

Rip off the chords, wires, tubes, stickers!

Grasp on for once with nothing between us!

I miss you sweet girl!

First of all, thank you for being interested in how our family is doing.  If you've followed the caring bridge website to this website and taken the time to check out this blog, that's a sign that you truly to care about how we're doing.  We were initially worried to post too much personal information about our grief on caring bridge because we didn't know if people wanted to hear the nitty gritty of what we're enduring.  But, if you're here, you must want to know it.  So, here goes.  I can't say it all right now, but this process has nearly been unbearable for us to endure.  If you see me or Jason on the street, you won't be able to tell by looking at us that we just buried our baby girl because we're doing a fabulous job of covering it over and going through the motions of our lives.  However, that doesn't mean we aren't devastated.  You have to remember, I am a school counselor.  I can't just hide under my desk and cry all day long.  The kids I work with now have a deep appreciation for the fact that "our counselor has been through a few tragedies of her own, so maybe she'll understand where I'm coming from with my problems."  Also, we don't really know what we're SUPPOSED to be doing.  Are we supposed to be moving on, sitting around crying, or something in between?  I think we're at the "in between" stage and will probably stay there the rest of our lives.  There are times, though, when we lean more toward sitting around and crying.  I go to the graveyard a few times per week (I'm going to be real honest on this blog. . . I hope you all can take it) and sometimes I just want to dig down in the ground and crawl up in that hole with my baby.  I don't even care what her body must look like by now, that's my baby.  But that probably wouldn't be comforting, now, would it?  I just wish I would've been able to protect her from all this.  The weather getting colder doesn't help with the problem of letting go of her body.  I want to cover her up and keep her warm.  I know in my heart that's just her body, but I never knew how difficult it was for momma's to let go of their babies' bodies.  It's just something I can't explain.  Anyway, I think that's enough for tonight.  I will post again in a day or two.  There's a lot I could say, but I don't want to overwhelm anyone.  Thank you for caring!     Heather