Friday, October 4, 2013

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 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.


  1. Hi
    I just wanted to say, everyday I struggle with faith. Everyday I struggle to make sense of this world. After reading through your blog, and seeing your struggles old and new I want to tell you I wish I was as faithful as you. You are strong, and right. God is with you, you must be one of the strongest families! I am praying for Jay, even though I fight and struggle to have faith when I see a sick child I always turn to him. I believe she will make a full recovery, although I know that may not be truth, I will keep believing. I love the pictures of Rachel she is beautiful, all of your children are. I keep your family in my prayers!
    Crystal Carey

  2. Dear, dear family,
    Please know that you are on the hearts and in the prayers of many people you do not even know. The hurt that you are going through is difficult, I know. I too have walked through the Valley of Dark times. But OUR GOD is GREATER!
    Be encouraged in knowing that the Family of God is surrounding you in prayer and others are standing in the gap for you even now.
    Greater is He that is in us than he that is in the World!

  3. I am a Facebook follower. I don't know your family any more than I know the man in the moon, but Jay has had my heart and prayers for days now. After reading this, all God is walking your family through in recent years, Rachel and your other losses too, your entire family will continue in my prayers! {{{hug}}}
    My stroke survival (and link to my multiple pregnancy loss) story at

  4. No words of wisdom, my sweet friend. This situation is unthinkably hard, and words aren't going to fix that. Just sending you and the family hugs, kisses, love and so many prayers <3


We so appreciate your words of encouragement!
Thank you! ♥ The Aubes