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.