Capture Your Grief 2013 - Day 17

I've wanted to participate in the 2013 Capture Your Grief Photography Project...  I hate the fact that I'm starting late, (there is one for each day of the month) but if I can manage, I might go back and do a couple of the previous days/topics.  There were a couple that really resonated with me. 

I've been finding it hard to blog lately... I'm in a bit of a rut emotionally and so I thought the topics and direction could be helpful in me working through this new stage of my grief.  Writing has always helped me find God in all of this.  So, here I go.....

Day 17: Time: How long has it been since your baby died?

She entered the world at 10:27 am on December 3, 2010. 

The doctor was checking regularly to see if her little heart was still beating as they stitched up my womb.  I asked Matt to bring her over to have him check again.  I had a feeling she was gone.  I watched in anticipation for his response....

He looked around as he held the stethoscope to her chest.  He looked up at Matt and nodded.  Matt looked at me.  Everyone looked at the clock.  11:10am.  43 Minutes. 

It's been 2 years, 10 months, 2 weeks, and 12 hours since she left.  Exactly. 

Not that I'm counting.

I tend to stay up later than Matt.  I find myself missing her most at night when I am not so busy with the other kids and the daily grind.  It seems that almost every single night, I 'just happen' to walk past the stove and glance at the clock just when it says 10:27.  It still stops me in my tracks every time.

Tonight I waited for it so I could take the picture.  I grabbed a snack while I messed around with the lighting so I could make sure I got it right before I took the photo for this post. 

It seemed like 10:26 took forever.  It turned to 10:27, I took 4 photos... and before I even got one I liked, the minute was over.  I felt that same sense of disappointment in "time"....  it never goes fast when I want it to go fast and when I want it to slow down, it refuses.  It's been a LONG 2 years, 10 months, 2 weeks and 12 hours.... and yet it feels like it was yesterday that I held her in my arms.

Daily Rainbows

While I was pregnant with Rachel and after, I had people constantly saying "Don't worry, you can have another one" as if that would change anything at all about losing the daughter I loved.  That was hurtful, but I almost found it worse when people would question me about ever wanting to have another.  They'd ask why I wanted to take the risk since I could have another one "like Rachel."  And I'd always say, that would be horrible, but she was amazing so if that happened, I'd love the baby just as much as I love her.  And I guess they thought that they were somehow beyond having "one like Rachel" since they didn't think they should stop having babies when she was diagnosed... ??

Since I welcomed these sweet little "rainbow babies" into our world, ('rainbow', referring to the babies after the storm with Rachel) I am DAILY reminded 'why' I would every 'risk' having another...  because they are absolutely amazing.  They color my life with beauty.  But even if they weren't learning colors and counting... whether born with a brain or without one... carried just a few weeks or brought into our home for years to come.... each one of my children are a blessing from God and hold a special place in my heart.

Today, I am thankful for these little moments that remind me of one of the reasons I homeschool... there's nothing quite as beautiful as watching my children interact like this.  No, this is not how it always is, but this wouldn't even be possible if they left each day.  I pray that these short times throughout my days will continue to encourage me to keep going - because I'll admit, most days lately, I don't feel cut out for this and I want to give up.  I think it's the hardest thing I've ever done - and not because 1st grade math is hard (although I do hate math)  but because I am selfish and impatient and get over-stimulated easily... (shhh... )  and I guess God has decided that He intends to work on that with me :) 

Here's a short video of Isaiah and Asa...  I love how both of them are getting so much from this time together learning.  Asa could get this interaction anywhere, but Isaiah would never get this chance if he was with kids all the same age.  He's a much slower learner than Desirae ever was and I think it does so much for him to be able to teach and encourage someone else. I can see it in his eyes and it blesses my heart. God's design is a good one.

No Other Choice.

3 years ago today, we had a baby shower. 

We didn't call it a baby shower.  We called it a "Celebration of Life"

We celebrated life..... as we waited for death.

Instead of little pink outfits and cute soft toys, we asked for and received donations towards a memorial playground.  A playground I hoped we'd never have to build.

85 people came.  $1600 that day went into an account for Rachel....  my sweet baby girl.  It was a really cold, windy day in NH...  but my heart was warm.  It was hard, but I did it... for her.  Because I had to celebrate her life while she was alive.  And I insisted everybody else did too.  I knew I'd have plenty of time for her to be dead later.  And I was still hoping on a miracle.

How do you do it?  Celebrate life that won't live...  Not fear death that is destined to come much too soon.... store up funds for a playground and headstone and burial items instead of a crib and a swing and stroller... and feel like that's a blessing?  How do you smile when you want to cry?  Stand when you want to fall?  Go and tell when you want to curl up and silently die?

How do you carry a baby to the grave instead of the cradle... How do you pack your bags and drive to the hospital for a delivery of death?  How do you explain that to the little hearts you are responsible for.... give them a reason that you can't grasp yourself?  Their sister won't live. 

How do you cuddle with a lifeless baby... try to keep her limbs warm so they wouldn't grow stiff in your time together.... take photos that can hide what the lack of oxygen does to a little baby's face?

How do you make memories to last a lifetime in such a short...few...minutes? 

How does it become that a baby joins your family when all you have for proof is a belly?  And that belly becomes "her" in the family photos... and on the family outings... and at the family birthday parties... and at bedtime and in the shower and during worship at church?  How do you tell your belly everything you ever would want your child to know, not knowing if she can even hear you... and with so little time....and have that be good enough?

How do you answer the questions... When are you due?  What are you having?....  and listen to everyone talk about what a curse being a "Christmas baby" will be for your child that is due on Christmas day, but will be in the ground before it arrives?  How do you show grace in the face of such ignorance... while feeling so protective and maternally bonded of the little baby that is being talked of as either an inconvenience... an accident.... a sad story.... or worse, a subject to be completely avoided? 

How do you plan a funeral, pick out a grave, and write her name on a stone while she is still dancing around in your belly?  How do you put her in a hole and walk away? 

How?

When you have no other choice.

I went to her grave today.  The flowers I had bought her were all dead and I didn't really have time to care for them.  I threw in some water and drove off.  My heart was... I don't know what it was...

It was much warmer than it was 3 years ago on this day.  But my heart feels so much colder.... or maybe I don't remember what I really felt back then...  I struggle to celebrate her life because I have grown to hate her death.  I know it too well.  And I don't like it.  I don't like it and I don't like what it's brought.  I hate what I've lost.  I hate how misunderstood and abandoned I have been by so many.  I don't have the energy or desire to find a 'new normal' and I actually don't even want to be my 'old normal'. 

Everyone said time would make it easier.  They were wrong.  It's different.  But never easy. 

Today my mom brought Matt a birthday cake (his bday was a few days ago) and so tonight when the kids got home from Awana, we each had a little piece.  I told them we were celebrating Daddy's life, Rachel's life and the fact that Jailyn talked today....  they all looked at me, surprised when I said it was the day we had Rachel's shower.... Des said "awe" and that was it. 

How do you fit a dead baby into a family where only you seem to ever even remember her?  Carrying around a little 3lb 7oz bear on vacation without feeling like a freak?  Calling the bear "Rachel" and now the bear is her instead of my belly...

How do you listen to every. single. person who comments on our family size (and they ALL do) count us... and then correct them... watch them do the count again... and then explain... one is dead....  I'm so tired of living this hell alone.  In a place where everyone else would be just as happy to let the count be less - but my heart can't.  I can't.  I have to say it.  And then I hate that I said it.  I hate that now the conversation is strange and uncomfortable.  But I can't not.  She is my daughter and she counts.  And I hate when I hear them not include her... and watch how the conversation flows just fine when she is left out... and nobody cares or notices or will even think about it again....

But I am tortured in my sleep... nightmares and waking up afraid that I've missed one of their last moments... checking on them and watching for their chest to rise so I can return to sleep, only to be woken again...

Someone once told me I "just must feel more deeply" than she did.... and I think for a while that worked out for my good.  Those deep feelings made me move... made me build a big playground and put on large scale events to benefit others in her name... and for God's glory.  They made me write and help people... they made me love deeper... they made me get up off my couch and DO something.

But these days, two babies later, DOING anything is harder... I need more help, but everyone is past this... everyone but me.  I have this constant nagging that I NEED to get to her grave, knowing her flowers are dying... but I can't make it happen.  I try to keep taking baby steps with her nonprofit, but seem to get nowhere.... I try to keep her included, but it feels more and more awkward and lonely....

and I can't not do any of this....

but how am I supposed to?  How do I keep smiling... keep loving... keep living without her?

How?

I don't know, but I have no other choice.

I have to celebrate her life or the hate that I have for her death will consume me.  And if I spend the rest of my life faking it so that the mention of her name brings a smile to the faces of those who have known of her....  I will.  I'll be uncomfortable... I'll make other people uncomfortable... I'll be lonely... I'll be judged and criticized... I'll smile each and every single time I tell some stranger on the street that my daughter is dead.... for the chance to say her name with pride.... and to tell them that I will see her again because she is with Jesus and one day I will be too.... even if that doesn't actually make me feel better right now. 

Does that sound like the plan I had for my life as a little girl?  Nope.  And these days I have grown to hate the loss of that innocence...  

The Lord gives and He takes away.  I don't have to like it.  I don't have to even pretend I do.  Trusting Him means believing that when He takes my dreams and shatters them... when He allows my baby to be ripped from my life.... when He doesn't stop tragedy that He totally could...  that He hasn't forgotten me... still loves me... and that He has a purpose that I don't need to know, I just need to surrender to.

So tonight, I once again turn my hands up in surrender.. I have been devastated the past few weeks with all of the loss and heartache surrounding me, my family, my friends.... it's almost too much to bear...  but I know God is still here.  I know He is still in this.  I know He hasn't forgotten me - or them - and I know that even if I never know the reasons.... or if the reasons are never good enough for me... they are in His control and He is still worthy of praise.  I bring all my heartache and pain to the foot of the cross and I surrender it to the only One who is strong enough to handle it and I trust Him with it.

I have no other choice.

A couple of photos from her Celebration of Life.  Miss you my sweet girl....

Jailyn, Isaiah, Caleb, Desirae (sam in her lap) at Rachel's shower.



Rachel's first ornament on "her"

Due a week apart... this other little baby girl came to my house last week after dance class....
I watched her in her leotard playing with the kids and wondered how Rachel would have fit in here.

I still have this bottle of lotion sitting on the dresser in the nursery... I use it on Asa every once in a while and think of Rachel - side note... why did I cut my hair?!?! :/

the 3 Aube girls opening Desirae's first Willow Tree Angel... the Angel of Hope.

If you've never seen the rest of these - I have a few slideshows of photos on the right side of my blog further down if you want to see just how beautiful Rachel was - both in my belly and out. 

No Words

I'm speechless..... actually, that's not true, I have lots of things I'd like to say - but shouldn't. 

I just heard that the commotion we saw earlier in the PICU while visiting Jailyn ended in a little girl's death.  We kind of knew it. 

And we were eating ice cream.  I almost want to throw up at the thought that we were eating ice cream two doors down from a little girl dying. 

I called the kids back from the kitchen and said something serious was happening.  Meg thought I meant with Jay and freaked out a bit that I wasn't more specific.  I just said I didn't want the kids to see whatever was happening in that room and feel the horror of all the doctors running to her.  We shut the door and ate our ice cream.

We could see the girl's bed.  Hear the weeping.  I saw the looks on the nurses faces.  They have such a hard job.  But it's the PICU... everyone is in crisis...  maybe she isn't gone, I reasoned. 

We're telling our kids to stay together for the walk back out to the car and getting irritated that they were being loud.  Healthy kids walking.  She was dead in her bed.  God, forgive me.

I don't know what else to say other than our futures are unknown.

She fell.  that's it.  She just fell.  And now she is gone.  Lord have mercy.  I feel so heavy hearted for them.

Here is her page if you can take a minute to look and maybe help.

Hope for Havana

Future Unknown

I spent the day with Meg and brought all the kids, including Caleb, to visit Jailyn today.... yes, we are crazy and it was like a circus in there.... even though everyone (except Asa) was well behaved, it was still a lot.

Jay was very sleepy, but we did get a few smiles and a couple of half waves from her.  She even managed to get her arm up and around Desirae's neck - although I had to take it off for her.  Mostly she likes it when we talk about poop, so we do any chance we get.

Anything to see this beautiful girl smile.

 

Last night they found that where Jay's PICC line was, there was some swelling - so this morning they did an ultrasound and confirmed that she has a blood clot in her arm.  Because the medicine they would normally give her for her clot cannot be given so soon after brain surgery, they have decided to just keep an eye on the clot.  The concern would be that it could go to her lungs.  They did say that even with this new problem, they expect that after two VERY LONG weeks in ICU, they will be moving her soon to the regular part of the hospital!  She is officially out of the 'critical' state and we are officially praising God for sparing her life and letting us keep her....and getting us thru the past two weeks.  I cannot describe how hard this has been on our family in so many ways.  And it's only the beginning.  It's going to be a long road.  My sister has been a rock for her...

Meg told her that with this hair, she really does look like the "Warrior Princess" that everyone is calling her on Facebook.  she smiled :)

When I went to visit her the other night, she was able to put a couple of bites of pudding into her mouth on her own.  As I stood next to her, I was so excited for how well she was doing.  She kept trying to get it into her mouth and was mashing it all over her face because she can't feel the left side of it.  It took minutes for her to lift the spoon into position.  I wiped her face off after each attempt and when the nurses came in, I told them I had made a mess on the towel to keep Jay from being embarrassed. (and of course, joked about it looking like poop!)  It felt like huge progress.... and it was....

But as I left the room to go home that night and looked back at her laying there, the reality of this situation bashed me in the face....  Jailyn may never walk again.  She almost died.  She is in ICU.  She won't be home for months..... our lives, her life, is forever changed.  I started to cry.

I walked thru the doors and the hallway was LINED with people crying.  The PICU (pediatric intensive care unit) holds so much pain... so much tragedy.... so much fear.....

Today, the doctor came in just before we were going to leave to tell Meg that Jay should be okay to move to the other floor.... and as we walked out, the hallway was again lined with people.  Something had happened, we had heard the beeps and seen the doctors and nurses run into a little one's room.... and now everyone was weeping and some were around the bed still in silence. 

We talked about how we have to fight the urge to hug these people as we see their pain that cares not if anyone is watching. We talked about how a couple of weeks ago, that was us....weeping at the hospital, unsure of what was happening and how it would all end. And how just 13 days ago, Meg had collapsed and was throwing up in front of people outside of Dartmouth when Jailyn got rushed in for her emergency surgery when we almost lost her the second time that weekend - and the rest of us were driving like crazy to get to them from 2 hours away.  Desirae shared with me on the way home that the window sill that one man was sitting on sobbing as we walked by is the same one that she sat in the first time she saw Jay... Matt had brought her out of the room because she said "I need to get out of here" and she sat on the sill and cried....  I didn't even know that until tonight. 

Dear Lord it's been a long two weeks.  It feels like this has been going on forever. 

And so here we are...  we get to keep her.... we think.  But do we ever really know?  I mean, who ever thinks that a 9 year old will have a massive stroke on the way home from school in the first place?  Who ever thinks that a baby they can feel kicking inside them will be born without a brain?  Who envisions standing on a grave every week for years when they see two pink lines on a pregnancy test? Who plans to lose a 57 year old son, father, brother, uncle and friend to colon cancer? Or a 35 year old husband and daddy to suicide?  Nobody.  The past three years have brought us a pain filled awareness of how little we know about our future.

We all want to say it will just be a matter of time and she will be up and walking... back to normal.... and God, I hope that is true in the future.  But here is our truth now...  we just don't know.

We don't know if she will ever feel the left side of her body again...  we don't know if she will ever use it again and if so, how much she will be able to.  We don't know.  And even if it is a very good chance - which so far, the doctors have concluded it's not....  even if they are wrong....  it doesn't change for a second what she, her mom, our entire family is grieving the loss of right now.  It doesn't change how hard this is now.

I know it's meant to be helpful and encouraging when people insist there is nothing to worry about, but when I see the looks on my kids' faces when they stand by her side...

when I see Desirae struggle to find words to say to her cousin who has always been her best friend.... when I hear the conversations the kids have when they think nobody is listening...when I see how disappointed Jay is.... how much she struggles and how much pain she is in.... when I watch people I love constantly fight back tears as they try to grasp what has happened - and when I picture Jailyn just two weeks ago before she got on that school bus that Friday afternoon.....smiling and hugging her teachers goodbye...  I can't put into words the pain - or the loss - that we feel. 

And that pain can't be fixed or shooed away with a "It'll get better" or "Don't worry, this happens all the time and people walk again."  It can't be made better with a more positive outlook or even a biblical truth.  And I don't believe that God expects that of us.  I believe I serve a God who is aware of our suffering and Who created us with feelings.  I serve a God who wept and felt pain.  A Lord who begged His Father to spare Him what was ahead of Him...  I know He is at work, even in the pain...and often more so in the pain.  He is in the valleys...but that doesn't make them easy.

I know that the people who push their opinions on us really just don't have a clue what it's like to walk through something like this.  The people who *know* tend to say a lot less about how we should look at this and show more genuine love.   I dealt with that with Rachel too.  It's the human nature to think our opinions are so needed to be heard.  I'm guilty, too.  I am just so thankful for the people who have compassion and empathy and don't minimize what has happened to Jailyn in an attempt to sound uplifting or spiritual.  We have had SO much support, it's been unreal.

The only thing we can do is put one foot in front of the other and be there for Jay in any way she needs us.  And pray without ceasing.... I never want her to feel alone in this.  I want to love her like Jesus does.

I cling to the truth that God is still God and He is still good.  No matter what this life brings our way He will be there.... carrying us when we can't walk, loving us like only He can, making beauty out of the ashes.  I have no silver lining and I refuse to try to find one.  But I do have hope.  I believe in miracles.  But I know that just because I ask for one doesn't mean I'll get it and so often God's plan is not what I would choose and I don't understand it. 

Still, I trust Him.  And I ask Him for what I desire - believing that He cares about our hearts and love us....and knowing only He can do this.  I thank Him for all the miracles we have already been granted with Jay, starting with the fact that she is still here.  I just don't know what we would have done had we lost her. 

I will continue to ask Him for complete healing for Jailyn.  For another miracle... for her to walk again, to use her arm again, to enjoy life, to run and play and be carefree like kids should.... for her to get married...to walk down the isle.... and have children... for her to know His love and His salvation.  I won't pretend to know what God will or won't do or what His plan is for Jay, but I beg him with all that I am that He hears our prayers and is merciful to this sweet girl. 

Hebrews 4:15-16

For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin.  Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.