Gently Loved Clothes

This week, I was in the attic looking for my fake flower arrangements that I had made for Rachel last fall.  I looked around at my bins stacked high of girl clothes and felt convicted over my storing up these beautiful clothes for a girl I don't have - and might never have - when there are so many people in need. 

I heard something I really didn't want to hear.....  Give it away.....

I got the idea that if I pulled it all down and invited people to come grab whatever they wanted, that it would save me from the work of sorting and delivering.  So I put this on Facebook:

"Giving all my girl stuff away is painful since the only reason I can is because Rachel is not here. I had held onto it all in hopes that Des would have a little sister to pass it on to. I'm tempted to want to sell it since it's all so nice, but God put it on my heart to give it away.... so here it goes... if you have a girl in size 4-8, come on over. 6-8pm tonight and tomorrow night this stuff is free to take if you can use it *now*. (not for stocking purposes ) Winter coats and boots in great shape, all sizes. dress boots, sneakers and tons of clothes that I'm trying to not be sentimentally attached to. (they are just clothes, Stacy, and Rachel doesn't need them...:/) If you can, please bring change as my awesome kids plan to sell lemonade and brownies that they will donate proceeds from to Rachel's birthday care baskets we are making. If you don't have change, I'll give you some. I always like them to have a successful lemonade stand :)

— feeling freedom in letting go. "

I was all about it... for a little while.   But as the time got closer, I started to get anxious about it.

I'm not going to lie... I cried.  A few times.  I sat in my living room, surrounded by these clothes and as I looked at the bins, it became so obvious... I stopped saving them at size 7/8 - the age Des was when Rachel died.  The year I realized that I didn't have a girl to pass them down to. 

These clothes represent a shattered dream... my broken heart....the reminder of a tiny grave.  They represent the loss of years of watching Desirae get to sister a sister....  they represent the love that a mother feels for her first born - the little girl who made me a Mama. They mean so much more to me than.... well, than clothes should.  *sigh.*

Des & her friend made some brownies and cookies and the boys made fresh lemonade and they had a little 'bake sale' to raise money for Rachel's Care Baskets.  There were only a few people that came, but they all made a donation for some yummy treats.  The kids were having a blast.  They made $20.78 towards Rachel's baskets! (Thank you to everyone who contributed!)

A quick dinner before the sale began :)
("Tasty Tuesdays" is the name they gave their baking club because they meet on Tuesdays to bake)

Some neighborhood kids came by to buy brownies and lemonade

Isaiah pulled up a seat to watch TV while people were looking at clothes....

Right before anyone got here, I looked at my Paypal to see if anyone had donated towards Rachel's baskets... There were 2 donations.  After Paypal took their fee out, I was left with... you guessed it

For me, this was confirmation... I was doing what I needed to do.  This combined with the bake sale $ covers the first basket!

As the night went on, it became more and more obvious that this didn't have much to do with clothes.... God is awesome.

The conversations had and the amazing way that we learned Rachel was in all of it... the way that these people knew of us because of her, even though I had no idea.  The way she brought us to a place - even in her death and in having to let go of clothes she can't wear - where we know people we wouldn't know otherwise.  The way she continues to bring us new friends and sweet fellowship.  She has been such a blessing in so many ways. 

It was 11 pm when the last lady left... we prayed together over some hard stuff she had shared with us... standing in the middle of these bins of laundry.... It was beautiful.  And Rachel was with us.

I didn't realize it on the 3rd when I decided to do this, but I believe this was a big part in my grief journey.  I only realized it because it was breaking my heart....  giving away clothes has never hurt so much.  But it wasn't the clothes that were hard to let go of.  It was more of her... what I'm missing with her... that had my hands clenched tight.  But, I can't hold on forever... so I let it all go....  well, my hands did... my heart is still working on it.

Love Beyond Words

It's November 3rd.  I can hardly believe that one month from today, will be Rachel's 3rd birthday. 

Three long years.  I hate it.

If you've been following along for a while, you know I like to do something special for her day.  If you're new, the recap is that the first year, we sponsored a couple of young girls who were having babies that month.  You all helped me to raise, allowed me to purchase, and then blessed me to donate $843 in items for new moms who had chosen life despite their 'imperfect' circumstances.  We had an amazing gathering at her grave - I was lost in tears when I pulled into the cemetery to see cars just lining the road... the weather was perfect, the fellowship sweet.  I felt so loved and so supported - and so not forgotten.

Last year, we did a puzzle fundraiser where everyone purchased a puzzle piece from a photo puzzle I had made of us at Rachel's Race that year.  Each piece represented $10 towards our cost of applying for the 501(c)3.  And although I had worried that people wouldn't still be interested, you all donated more than I could give in puzzle pieces!  It was unreal.  I still have the puzzle framed on my wall... and I just caught myself staring at it tonight.... But the hard part about last year was that it ended up snowing on the day of her party - only a portion of the people showed up and many that said they were coming back to the house after, didn't.  And I was disappointed.  If there is one thing worse than having to try to celebrate my daughter's birthday on the same day as the anniversary of when she died, it's being let down by my expectations of others.  So I decided that I needed to change things up.

And it's coming....  another birthday.

I've had big plans on what I wanted to do - the "big" part of it was that I plan to go more simple.  That's hard for me, just because of who I am... but I know I need to.  I have 5 living children here that need me and take up more time than I even have to begin with.  I need to find meaningful things I can do to honor Rachel that don't take a lot of me from them.  Because let's face it, Rachel doesn't need me.

So, what has been on my heart for a long time now is to donate care baskets to the hospital.  When I was pregnant with Rachel, I received an amazing package from String of Pearls.  It had stuff in it that I would not have thought to bring myself.... but I got it ahead of time because I knew Rachel was going to die.  I always wondered what about the people who don't know ahead of time their babies will die?  What if they go to the hospital planning to leave with their baby - and then can't?  They have no time to plan for making memories there...  And me being the planner I am, that breaks my heart. 

Shortly after Rachel's last birthday, I knew this is what I wanted to do.  My original thought was to have her party in October, around the anniversary of her baby shower and Infant Loss Awareness Day... invite everyone... have them help me assemble the baskets... and then on her birthday, just Me, Matt and the kids could deliver them to Maine Med, where Rachel was born. 

A month or so before October 16,  I mentioned to my friend Lisa that I just didn't have peace about the party - and decided not to do it.  Once again, God was leading me and I'm glad I followed, because after Jailyn's (my niece) stroke, I was in no condition to be planning anything.  

So, although the baskets are not assembled... and there was no big party in October... and there won't be a big party on December 3... I have peace about the decisions I have made and trust God's leading in this.  I'm realizing that her first birthday will never happen again and it's okay.  I used to be so scared to not be able to make that happen again.  But I know that it was a beautiful gift given exactly when I needed it - and this year, I know that God will give me exactly what I need too.  He always does.

My vision for this is that as we put together and physically donate these baskets, my children will see us doing something that they understand.  Donating $10,000 after Rachel's Races is amazing - but they don't fully comprehend that - and it probably doesn't feel worth losing all the time they do with me to hear that we gave money to a great cause....

I think if they get to help assemble the boxes and then we all go together and THEY get to hand them to nurses who know about Rachel, knowing that other families like ours will benefit from it, in the only place they ever spent time with their little sister outside of my womb... it will leave more of an impression.  Loving beyond words....

If this goes well, I'm hoping that this will be a simple, yet meaningful way to spend December 3rd each year.  The idea of being able to spend a little bit of her day each year in the hospital she was born at sounds hard, but very healing to me.  I'm looking forward to having time to talk to the kids (and the people at the hospital) about her.  To tell them how much I want to do for others because of God's great love and provision for us when we were in that place.  To be able to keep her memory alive for them... and for me.... as the years go on. 

Here is where you come in....  because we all know that I would not have been able to do anything I've done for others in Rachel's honor without all of you.... 

I purchased 10 Memory Boxes.  I have some beautiful and meaningful items that I would love to fill them with.  And I'm hoping you can help me do that.  I have tried to create boxes filled with the things that meant the most to me - or things that I later wished I had had. 

Des & I went to the store with the plan of buying items to make memories boxes.  I 'stumbled' across these boxes, which cost close to the same as the materials to make boxes, but are nice quality, have a magnetic closure AND I thought the words on top were *perfect* for someone who just lost a baby..."Love Beyond Words"

And here are some of the items I have had made or found to purchase for these memory boxes...

Baby wears pants and hat, Mama & Daddy keep a heart made from the same material.  All 10 are in neutral colors so they can be utilized more easily.  This set was made by Lisa Borders at McKinley Rose Boutique in memory of her baby Eli - Hence the name "The Eli Collection".  When I first saw this, I cried.  I searched high and low for something that I could bury Rachel with and keep part of... I would have LOVED to have her in one of these sets.  The awesome thing is every one of them is different so their baby will be wearing something unique to just them.

Each of these necklaces contains 3 dandelion seeds.  I plan to add this as my "Rachel piece" and will include a little note about her with it.  I have covered the cost of these as Rachel's birthday gift. <3 td="">

Because every grieving mom needs tissues... and we all like to cry in style.... the cutest tissue holders I have EVER seen. Another beautiful creation by Lisa Borders from McKinley Rose Boutique. 

A photo album to carry around.  I carried mine with me for the first year.

A place to keep prints...Printed to 4x6 to fit in the album

 

A journal... important for so many reasons - and the wording was irresistible. "We do not remember days, we remember moments".
 

Planting, nurturing and watching flowers bloom has been a very healing process for me since Rachel died.  I have had so many encounters with God in my garden, I can't count them all.  I plan to give a packet of these and a packet of daisies in each basket.

The back

The bear in the middle is my Rachel Bear :)  It's funny how just seeing 'her' on this gift certificate made me smile. 

the parents can use these to get a stuffed animal that has the same weight as their baby.  When they contact BB, they will contact me for payment because they only charge for shipping and that price differs depending on the weight of their baby.  For me, having my Rachel bear has been amazing... to be able to remember what the weight of her felt like in my arms.  I also love that as people cash in their gift certificates, I will know that one of Rachel's boxes was put to use and I will be able to pray for that family, even if I don't know who they are - and know that Rachel's life had impacted another person.

 



The sense of smell is very important during tragedy because it will always remind you of that time.  To this day, the smell that brings me back to my time with Rachel is A&D ointment.  My hope is that if all their stuff is packaged with a scented candle, when they light it on special occasions and when they are sad, the smell will bring them back to the time they had with their little one(s).

 

 

 

 I also am going to add a kit to make a handprint or footprint mold, along with some extra paper for prints, an ink pad, a list of resources that I found helpful, and a list of suggested photos to have taken in case they don't think of it.  I know if I didn't have my list of photos, I wouldn't have gotten half of what I did. 

When added all up, these care baskets cost $62-75, depending on how much the shipping for the Birthweight Buddies ends up costing.  I have added a 'Donate" Paypal button to the top of my blog (anyone know how to add it inside a post?)  and am hoping that you all will join in with me once again at supporting others in need and loving those in pain through Rachel's Legacy.

The worst part of not doing Rachel's Race this year for me was that I didn't get to do the baby remembrance ceremony for other baby loss families.  It's so important to me to help others to feel like they get that chance to share their baby with the world.  I have been extremely blessed in how far Rachel's story reached and I know the blessing of knowing that people speak about her.  So, if you would like to sponsor an entire memory box in your baby's memory,(or as a gift for someone you love) I will add a card that tells them it was "sponsored in memory of...."  Please specify that in the comments on paypal or in the memo line of your check.

Checks can be made payable to Baby Rachel's Legacy and sent to PO Box 454, Rochester, NH 03866-0454.

I can't believe it's been three years.... It doesn't seem possible, yet I can't remember my life before her - nor would I want to.  The changes I've made the past 6 months as far as how much I put into my blog and things like decorating her grave and not having her race were (are) hard - and it makes me nervous to even ask for help again since it seems like it was so long ago for everyone else and I'm afraid of being rejected. But I know what is on my heart and I know God put it there - so I'm putting my heart on the line again and humbly asking for help because it's the only way to make it happen - and that's what Mamas do for their babies.... and that is what daughters do for their God.

Rachel Alice, I miss you like crazy.  On the way to church this morning,  the bank said it was 43 degrees out.  It felt like you were with us.  Daddy & I went and fixed up your grave today.  I hate fake flowers, but it's getting too cold to keep live ones there.  I got you a new flag holder, it looks nice.  The flag I hung says "Love lives here".  And it does.  We went for Pizza after with gift cards Donna gave us - the place we sat had animals that kids cut out and put their names on hung on the wall - and right behind our table was an elephant with a heart shape cut out of it and "Rachel" written on it.  We all smiled. You are loved more than you know... more than words could ever describe... you are loved beyond words.  Miss you sweet girl.



Celebrating Life Through Another Diagnosis

So, clearly I have not blogged in a while... or done any more of the Capture Your Grief Photography Project as I had planned.  Actually, I haven't done much of anything for someone who is constantly busy.  I have a long list of to-do's that I keep putting off... I feel so overwhelmed with life that I just can't think straight.  Can't get out of my own way.

I don't think since I started this blog well over 3 years ago that I have gone as long as I just did between posts.  I've had many blog posts brewing in my mind and heart, only to get lost in the chaos of life and never make it off the tips of my fingers.  That would be okay if I didn't know that writing always helps me work through the things that stand between me and this thing we call healing.

I struggle because I want this blog to remain Rachel's - to be about her and my journey with her... but she's been gone so long that it's hard to actually write about how she is in my days, because she is just woven into every fiber of my being and is always 'in' everything I do... the happy, the sad, the indifferent.  She is there.

Some of you will remember that shortly after I had Asa, I randomly fractured my tibia.  That was followed by a few months of extreme pain in my joints and bones.  I went to my regular doctor, my OB, the ER, a Rheumatologist and even had a bone density scan done.  I had test after test.  Scan after scan. Advice after advice...."Eat this, don't eat that".  "Do this exercise, don't do that one". "I had this before and all I needed to do was...." My primary told me the only off in my blood work was that I was vitamin D deficient.

I tried everything. Eventually the pain started to go away.  I started to be able to do stairs again.  I gave vitamin D the credit and I never went back to the Rheumatologist... and never thought twice about the fact that I didn't get my results.  I eventually started running again and was feeling pretty good and fairly strong.

A few weeks ago I got what I thought was a pinched nerve in my neck.  Within a couple of days, it took over my entire neck and back to the point of tears.  I could barely even pick up my little man... I was thinking I had some type of virus that was going to go to my brain and kill me - I know, that sounds dramatic, but it hurt and it was not a pinched nerve kind of feeling.  I've had neck issues for about 5 years - had x-rays that have shown "arthritis" and so neck pain is not new to me... but this felt different than even that.  Then I started to have the joint pain again.  Well, it never *really* went away, I think I just get used to living with it.  But it started to be the kind that keeps me up at night.  I really started feeling it when we were in Maine.  My knee hurt so bad I couldn't sleep... but I just kept blowing it off as me being out of shape and overweight.

Last week I decided to call the Rheumatologist to get my results from the blood work he ran almost 2 years ago... The nurse said she would call me back and when she did, she said that the Doctor said I needed to come in for the results.  She said "It did show something that might explain why you're hurting".  They got me in 2 days later.  I was hoping this guy just wanted to make an office visit out of this... but that's not the case.

I tested positive for two things. 

One is called Spondyloarthritis.  I think (from what I understand) this basically is a group of autoimmune diseases that are similar to Rheumatoid Arthritis.  He has not narrowed it down yet, but I have every visible symptom of both Psoriatic Arthritis and Ankylosing Spondylitis,  which are under that category.  He said most often, the different forms in the group are not separated, but tend to all be present in one form or another.  They both attack my joints, but the latter will cause hairline fractures in my spine which then cause the vertebrae to fuse together, making me lose range of motion. (in severe cases, so much that you can't look ahead)  I've already lost range of motion in two finger on my left hand.  I only noticed because when I leave Rachel's grave, I always give her the "I love you" sign and I can't do it anymore.  Based on the pain I have in my spine, I believe I do have damage there, but he wants to wait until I'm done nursing to do a scan.  I'm wondering now if this is why my tibia was broken without me knowing how I did it....

The other thing I was positive for is Crohns. (another autoimmune disease that attacks the stomach and intestines)  My older friends will remember all the issues I was having with that years ago - but again, even after 2 colonoscopies and an endoscopy and a ton of doctors visits, they diagnosed me with IBS (which is totally a BS diagnosis that they give to anyone they can't figure out, in my opinion).  I've watched my sister struggle with her crohns for years now.  It's been a nightmare. And even though it's not a surprise given the symptoms I have had and the fact that it runs in families... It's still a hard pill to swallow.

Thankfully, the Rheumatologist I am seeing is amazing.  Besides the fact that he is the only doctor out of a dozen I've been to in the last 5 years who could figure this out and didn't just blow me off... He is not only very pro-breastfeeding, but also respectful of my allowing God to direct us on the children we have and working with me from where I am rather than pushing his opinions on me.... unfortunately, there is no cure (besides a miracle) for either of these things - and any meds that will help with pain and damage caused by the disease come with a long list of scary side effects, including causing Lymphoma and other cancers.  One of the two he wants to use on me says that in their study 30% of people who used it had babies with neural tube defects.... as if THAT doesn't rub me the wrong way....

I had more blood work done and go back on Wednesday to try to make a plan of action for treatment.  Please pray for me, I've been in a lot of pain - especially my knees down to my feet (today anyway, but it moves around like crazy) - and I want to do what I need to in order to slow down the effects/damage to my bones and joints, but I'm going to need God's guidance in making these decisions about medication and natural options.  I do know it's not likely that I can do nothing.

Please, I'm really not wanting ANY advice right now.  I'm still digesting this.  I have barely even looked on line because I just can't mentally handle it.  There is a lot I still don't understand and I am still waiting on more information from the doctor. I know that I am in pain.  I know that what I have is incurable.  I know that there is a good chance that it will severely affect my life in every aspect - and so I really don't want anything else but hugs and prayer.  I need prayer.  It's all very overwhelming.  But I'm okay with not having answers right now.  So please just let me figure this out at my own pace. 

So that is the medical side of this - but I need to get out what has been going on in my mind and heart - all logic and science aside.

I went to the doctors for a "routine ultrasound" on August 4, 2010 and left there with a diagnosis that changed the rest of my life. 

When I left the doctors on Monday, I felt (in a much different way) the weight of a diagnosis again.  Just like on the day of Rachel's diagnosis, the first thing I did was call my mom (who was babysitting just like she was for Rachel's ultrasound) on the way out the door... and standing in another parking lot, outside of that same van, I told my mom what I had just heard - And although I didn't even know the technical name of what he told me I had, I knew that the rest of my life is going to be different.  I left Rachel's ultrasound with a piece of paper with the words "Anencephalic Baby" scribbled on it. I couldn't even read it.  I had to have someone else tell me what it said.  I left this appointment with more scribbles that I couldn't read and had to have someone else decode it for me. Obviously, I didn't feel the tragedy that I felt back then, but I felt the same sense of powerlessness.  The same sense of the fact that I really didn't fully comprehend what was happening.  And the same sense of dependence upon the only One who can do anything about an incurable, unexpected, life changing diagnosis.... 

I still find it all hard to believe.  I find it hard not to look into my future and worry about what this is going to mean for my quality of life.  I have wondered if I will ever be able to do the things I hoped to do.... I wondered "What if I can't pick up my grandchildren?"  Things I have never had to think about - things that most people don't think about.  I worry about what genes I have passed on to my children and if they will have to endure this crap.  But somewhere in the middle of all of this 'reality', God has brought me to the realization that He brought me to with Rachel.

I have to celebrate life while it's here. 

For today, I can pick up my kids.  It hurts, but I can do it.  I can climb stairs, I can clean my house.  I can do laundry.  I can rearrange my living room and deep clean my upstairs.  I can drive. I can bring my daughter shoe shopping.  I can tie my son's shoe and change my baby's diaper and nurse him.  I can give my toddler 10 kisses over the side of the crib (that hurt my spine like crazy, but he got what he needed from Mama tonight) I can cuddle with my boys and put my ear on their chests to listen to their heartbeats.  I can still give haircuts and I can still type...

I did all these things today.  I do have a feeling that this is going to be a very painful road.  And honestly, I'm not ready for it.  But I have been feeling it coming for a long time.... I trust God's timing in allowing me 'in' on this information.  I know that He doesn't cause death and sickness.  I know He doesn't always heal people.  But I know that He will be with me.

So my goal - even if I'm scared of what this all means or what lies ahead - is to embrace each moment I have and each thing I *can* do.  Just like I did with my girl.  I fully intend to keep using my left hand to sign Rachel "I love you" as I drive away.  I will not switch to my right and just let this thing take over my bones without a fight.  I'll admit, at the risk of sounding vain, I am worried about being hunched over with crooked fingers, broken and brittle nails and bulging eye balls.  I'm also afraid of being in constant pain.   I just don't want Spondyloarthritis or Crohns to define me anymore than I wanted Anencephaly to define Rachel.... but even if it gets to the point where I cannot hide that these things are part of me, even if I one day have to admit that no matter how hard I fight, it's going to win....Like I had to on December 3, 2010 when I watched my little girl die in my arms...  I pray with all I am that I can allow God to make something beautiful of it.  Because if nothing else, I *will* leave my children a legacy of what it means to hope in Jesus and trust in our God.  I will.  Death and sickness only win on this side of heaven. 

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

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.

My Chains are Gone

Today marks 12 years that I have been free from the chains of addiction....

I've recently heard that there are people around me who are being misinformed about my past.  I personally think my past is colorful enough without having to make anything up. I'm surprised anyone would believe it since I'm not exactly a private person.  I'm all for sharing the darkness that God removed from my life. (and the darkness I still struggle with, too. Because I am far from perfect)  I'm not proud of it, but I no longer carry shame either.  So, just in case anyone is wondering this,  I am not and never was a prostitute - and I met Matt after we were both clean, so no, he wasn't my drug dealer pimp.  Yes, we both had drug problems. Yes we met in rehab, yes we both did jail time. (all before we were believers)  And yes, we both have been rescued from that and don't ever want to go back. Yes, we take the Bible seriously.  If that makes us "Holier than thou", I'm okay with that.  I'm not ashamed of the Gospel that saved my life.

I want so much to pour my heart out on this day over what God saved me from. But I'm so mentally and emotionally preoccupied - and I know I've said it all before on different days - that I'm going to just re-share a couple of old posts that came to mind.  I'd love it if you'd take a few minutes to read them to truly understand what today means for me and what God has done for us.  I'd also really love it, if you have any questions, that you would ask me directly.  I promise to not be offended.  It's a lot worse to hear that everyone is believing lies than it would be if you just asked me. 

So, there were two posts that came to my mind today.  One is titled "Jesus Christ" and it's interesting that I recently posted that on the day of Jay's stroke, His name - Jesus Christ - were the only words I could utter....  Then, the other day on the "Pray for Jay" Facebook page, I wrote Psalm 116 - and it is quoted in the post titled "My Dirty Laundry - Washed by God"where I talk about the end of my battle with drugs. 

Both Desirae and I are in the video I posted at the bottom of that post... if you don't have time for the whole thing, I'm at about 3.5 minutes and she's at about 6 minutes into the film.  On my part, I am standing in front of the jail where I was sentenced to and on hers, we are here and it's me, Matt, Isaiah and Sam in the background... they were still so small...

I do mention in one of these posts that I had fear over the fact that some will take my willingness to be transparent and use it against me for their own motives.  I got a little sad when I read that because I have never experienced that to the degree I am feeling it right now - and it's hard.  But I just keep holding on to what I know to be true....

My life was horrible.  And even with the pain I feel in the trials I endure now, it's still so much better than it was when I didn't have Him.  And that is all because He pursued me, made me His and He is stronger than any stronghold I have ever had. And He is bigger than any enemy that will rise against me.

Someone told me yesterday in an attempt to make me feel better about my niece, "God doesn't give you any more than you can handle" and I strongly disagree.  I think He doesn't give me any more than HE can handle....  and exactly that which will help me to remember how much I need Him.  Because without Him... I've got nothing.

My Chains are gone

I've been set free

My God, my Savior

has ransomed me

And like a flood

His mercy reigns

Unending Love

Amazing Grace.

A Long Week

This week has been long.  so long.

Last week at this time, it looked like a real possibility that Jailyn might not stay with us.  And through the last 9 days, we've had moments of great victory.  Little miracles....things we take for granted every single day....like the ability to wave.  We've celebrated each of these....and we've mourned the reason these things bring us joy - and what this all means for all of us and for Jay. 

I feel so void of words to describe this past week, but I realize that not all of my readers are on facebook, which is where we have been doing all the updates, so I wanted to give a run down for you here as well.  Plus, the facebook page is pretty busy and hard to follow.  I wish I had more in me to write about this more often, but I don't.

Jay started out last weekend okay.  We knew there was permanent damage to the right side of her brain and that she was paralyzed on her left side - but she was talking a little and interacting with her right hand.  Then on Sunday when her brain swelled, everything took a turn for the worst....the next 6 days were the longest days ever. Every time she would do something great and we'd be putting out a praise, something would go wrong and we'd need more prayer.  It's been such a rollercoaster. 

3 weeks before Jailyn's stroke - A day of swimming with cousins at Nana's.

York's Wild Kingdom, the day before school started.  We had no idea in just a couple weeks, she wouldn't be able to walk.

 

The neurology team met and they told my sister that Jailyn would never use the left side of her body again.  That afternoon, she moved her left leg!  We were all moved to tears over the thought of her proving the doctors all wrong....  proving that God is bigger than textbooks.... and we still hold so much hope over that moment.  But the next morning, she threw up, aspirated it and now she has a lung infection.  For days we have watched them suck thick phlegm out of her lungs with a tube as she has cried for them to stop.  Then we get to the point of taking out the breathing tubes and we were so happy.... until she spiked a fever.  It just seems like the ups and downs are so constant that we are all still waiting for the chance to take a breath. 

Tomorrow, Jailyn goes back under anesthesia, with the breathing tubes back in for an angiogram and hopefully the repair of the vein/artery in her brain to try to prevent a future stroke.  If the swelling is down enough, they will put the skull bone back on.  All of this is so heavy considering we just finally felt like things were coming to a place of steadiness.  Obviously, we want them to find the problem and fix anything they can - but I don't think any of us feel ready for anymore crisis.  Please pray tomorrow morning and in the coming days for this.

Since we started her Facebook page called "Pray for Jay", there have been over 1700 likes.  There are thousands of people all over the world praying for Jailyn.  She is going to be excited about that when she is more awake again.  At the top of the page, we have a photo that I took the day at the zoo a couple of weeks earlier....

And the other day while I was there, during one of her assessments, she showed us just how strong God made her.  And I have no doubt that He created her the way she is for this very trial and that He prepared her in advance for it. 

She couldn't even open her eyes, she wasn't breathing on her own, eating on her own or talking... but when we asked her to show us a peace sign.... she used every ounce of energy she had and got those fingers up in the air.  It was amazing.

 Her little brother, Caleb (5) has been staying with us most days and I brought him up to see her this same day.  He was nervous and stood in the doorway for a while before he would enter.  I took a short video of her letting him know that she knew he was there....  You'll hear me in the background telling her how strong she is and that we'll be taking her home soon.... it seems that is all I can say.  I just keep telling her we'll get her out of there soon...

The pink bear you see is one of two matching ones - she sleeps with one, Des sleeps with the other.

okay, so that is the short version of the facts....  now to try to say how I feel about this....

I'm not sure I really can.  Maybe I'll tell you what it's like in my house right now.....

As with any time that the frailty of life is right in your face, I started to question and think on my perspective...  my regrets...  my relationships.... who I love and who loves me.  I found myself in tears over and over as I thought about the regrets I would have if this were one of my children and I did what I do best... beat myself up over it for a while.  The good that came out of that is I've been sitting down more with my kids, taking more time to listen to them, reading to them more and trying to be a part of their world more.  I've been more patient. I've cared less about chores getting done and more about if they know I love them. 

In the meantime, my house has turned into a complete pit.  And I am a neat freak...  and I mean freak.  As in, when things are messy, it will literally drive me to irritation.  I've come along way in that since Rachel, but I have not left it behind, which is probably a good thing cause with this many people in the house, there is a lot of work to be done and if messy didn't bother me, we'd have a problem.  So, this past week, I could not have cared less about messy.  And it's been good.  But last night, I decided that I would clean.  I cleaned for 3 hours straight and it felt awesome.... but as I picked up the books, I noticed one of the magnet letters was on the floor....

I started to cry... Jay was always the first one to help when I said I wanted the kids to pick up.  One of the last times she was over, I went into my mudroom to find it completely cleaned.  I asked who cleaned it and she said "I did" all nonchalantly.  I didn't ask her to or even ask anyone to for that matter, she just did it.  She is just that kind of girl.

Tonight as I helped Desirae pick up her bedroom, I came across some news articles they had created.  They made up a news channel called "DJ News" (Desirae Jailyn News) and they had cut out photos from the newspaper and then re-wrote the stories.  I asked Des "Was Jay with you when you wrote this?"  And I watched my little girl fall apart.  She started sobbing - and so did I.  Desirae isn't really a crier - very few things make her cry.  But she is devastated over this.  Her heart is broken.  And as she tucked her face into my chest, my sadness was overwhelming.  Des mentioned we could get her a wheelchair for her American Girl doll... I cried harder... Jay will hate being in a wheelchair.  How can this really be happening????

In the background, I could hear the conversation between Matt and Caleb as he tucked him in...  "Jay told the doctors her name was Professor Poopy pants" he said to Matt. (which she totally did, she is so funny)  He talks about Jay all the time and how "Even though Jay was mean to him, he can't wait to help her learn how to walk again."

Sam has been walking around telling people about Jailyn's brain dying and Isaiah keeps asking questions about which side of the brain control what.  He's trying to think logically about it all and figure out what that means for his cousin.  I think my kids have had their fill of people they love having problems with their brains... I know I have. 

And me....  well, it's complicated.  I feel crushed with sadness.  Sadness for Jay, sadness for my sister, sadness for my mom, sadness for my kids and for Caleb. This time of year is extremely hard for me anyway.  I look outside and see my garden dying as the cold weather moves in and I feel Rachel's birthday coming.  I feel it coming and it feels wrong to even be thinking about it - and yet, I can't help it, it's heavy on my heart.  I feel all the memories of this season of my life 3 years ago.  Jailyn has always been the one kid to remember Rachel with me.  Haven't these kids been through enough?  Most kids don't deal with even a portion of what my kids and my sister's kids have been through in the last 3 years in their entire childhood. 

And I can't help but wonder why?  Why couldn't Rachel stay?  Why another huge trial for our family?  Will we ever get even remotely close to the way things used to be?  Or will we forever grieve what this stroke has taken from Jay, from her Mama, her brother, and the rest of us who love her?  Will we ever enjoy the things we were able to do together just a couple of weeks ago?  Will her and Des ever play in the pool together again?  How much pain is this going to continue to bring to all of us? If she makes it through this to come home, what kind of condition will she be in?

Yesterday, Jay had started asking questions (by writing). Her hands could barely keep up with her mind. The front of her brain has not been damaged so she has her ability to think... she is asking some hard questions to hear....like "Am I dead?" "Did I get hit by a bus?" "Did someone hurt me?" "Is this my fault?" and the hardest one of all... she keeps writing "why" and circling it.

That was the title of one of my very first blog posts.  "Why?"  And when I heard she was writing it, my heart just ached for her.  I know the feeling of wanting to know why - knowing full well that even if you do know why, it won't change a thing.  She has such a long road in front of her. 

I feel like I've been all over the place, but it's probably better than not writing at all.  I almost gave up about 20 times as I tried to write this.  And I'm sure it doesn't even come close to describing what this past 9 days has been like for us.  The only thing I know for sure is that God is good.  That doesn't mean I will like His plan.  It doesn't mean people I love won't die.  It doesn't mean that I will get what I want or that I will ever know why something happens.  It just means He won't leave me alone in it.

And I guess walking a path like this, that's about the best thing I could hope for.  Because this side of heaven, pain free will never exist.

I continue to pray for Jailyn's full and complete recovery.  I told Des I will not stop praying until that girl is running around with her again - and I won't.