~August Update~

Hello Everyone,

Well my promise to send out an update sooner didn't really pan out.  I looked at the calender and it's been another 3 weeks.  Crazy how time gets away from a person.  I don't understand it, it sure doesn't seem like my days go by that fast :)

What do I say in this update?  I certainly don't want anyone to be caught off guard and I have people that send me notes and ask how Lindsey is doing.  Most of the time I'm not quite sure how to respond.  It's one of those things that you know what the kids, the family and you are going through and yet how do I convey it to all of you without sacrificing Josh and Lindsey's privacy.  It's a quandry to be sure but I defintely want the people who love Lindsey to understand her situation.

Over the last few weeks I've received some amazing notes from people I don't even know but that know Lindsey and have a past with her.  They have shared some wonderful memories with me and I love reading back through those notes, especially on difficult days, and they bring me joy.  Lindsey was an incredibly vibrant and loving girl and it shows when I receive heartfelt and personal experiences from her friends.  Those notes are cherished.  In fact, it would be an awesome time to share some personal experiences, if you feel you can.  These don't have to be a memory you have shared with Lindsey, it can be your feelings about how her journey has affected you.  What positive things have you done or changed, and how will it change the way you look at life?  I know I have much I can and will share when the time is right.  For me now, writing the updates is my tribute to her.  I hope as we go through the next little while we may all take a few minutes and go to the blog, read back through her journey, and be inspired.  That is my prayer and hope.

Lindsey still greets me with a smile when I enter her bedroom.  It's pretty rare when a smile is missed and that would only be because she is eating french fries.  I'm not kidding!!  That girl LOVES french fries.  Regular, Taco Amigo (extra crispy, extra salty), Sweet Potato fries.  It doesn't matter as long as they came from a potato and look like something that should be a french fry, then she's in heaven.  Oh boy is all I can say.  It makes me smile.   When I leave I always make sure to blow Lindsey a kiss.  She always returns it.  It's my special 1 second of connection with her.  :)  I love sitting with Lindsey, even if no words are spoken and caring for her.  It makes me feel that I am on the path I should be.  What a gift for me to be able to do that.  What a blessing she is in my life.  I love watching my son care for his best friend.  It doesn't matter what it is, he is her strength.  Lindsey doesn't say much these days but when Josh gets ready to leave he always says "I love you Lindsey" and Lindsey always replies "I love you more" which of course is greeted with "I love you most" (now don't be thinking of that creepy witch in Tangled cause this is awesome)  What makes it even more amazing is that truly Lindsey only says one maybe two words at a time now but the expression of love for Josh is strong and clear. 

Some time ago I posted a quote and I think I wrote it again not too long ago.  But it's important and I need to remember it more than anything right now. "We may not know what the future holds, but we know who holds it"  My dear friend Karen told me that at the beginning of this diffcult journey and it's even more important to remember now as the days get harder to bear.  I believe we all know that Lindsey's time here is limited.  It is drawing closer each day and we have done all we can do.  She has beaten the odds by so much more than any of the doctors ever thought.  We have witnessed miracles and events take place, the outpouring of service and love in hers and Josh's behalf has been incredible.  I wish I could write that there has been a drastic change in her condition, that things have turned around but I don't believe I will ever get the opportunity to write those words and my heart is broken.  There are days when the waves of sadness are almost too much to bear but then I receive a note from someone unexpected or a friend says something that lifts me up.  Those do more than I can ever say.

Thank you to all of you for wanting to be included in Lindseys life and journey.  Thank you for supporting the kids and sending them your love.  Mark's Aunt Kathy made an incredible "Memory" quilt for Lindsey that hasn't left her bed since she gave it to her that was embroidered with special dates from Lindseys life.  Truly a gift from the heart.  I know your prayers were and are heard.  I know they have extended Lindseys life.  She is very little discomfort which just shouldn't be happening.  She doesn't even take Ibuprophen.  I will never be able to express to all of you what is in my heart but I hope I've given you some idea.  Another quote I shared recently is this....and I hope we remember it.  "What if tomorrow you ended up with only what you thanked God for today"  Something to think about.  We should all be grateful for the experience of knowing Lindsey.

With all my love,

Julie 

July 18th, 2011 Happy Anniversary Josh and Lindsey!

Hello Everyone.

Well my promise to do better on the updates didn't pan out too well.  Sorry about that.  I know everyone is interested in what's happening and 2 weeks is much too long (ok, it's been 3).  Yikes. 

The reason I haven't sent out more regular updates is that things are pretty status quo, however, I will tell you that we had a remarkable day with Josh and Lindsey on the 4th of July.  As I tell you the events of the day, keep in mind that she is mostly in her bed for the majority of the day.  Each day she had small seizure activity or tremors that prevent her from swallowing and she is generally very tired, however, she really wanted to see the balloon launch in Provo early in the morning, so we made our plans.

At 5a, Mark and I were up and going, out the door and over to Lindsey's parents by 5:30a.  (not just us but the boys as well!)  Lindsey and Josh were up and getting ready, she was excited to be able to go.  We loaded her up and made our way to Provo.  We arrived just as they were beginning the flag raising ceremony.  This was a large US flag attached to the Alexanders red, white, and blue balloon and the entire gathering repeated the pledge of allegiance with the announcer and then played the Star Spangled Banner.  It was awesome.  All of the balloons began to inflate and they even had Darth Vader head (haha) which was a massive 86' across and a price tag of $500,000.  Most of the balloons were inflated and ready to take off when a pretty stiff wind came and the launch was cancelled.  It was a little disappointing but still it was a fun time for our family to be together.  Matt, Jenny and their 2 boys along with Mitch, Mike, and us all spent a beautiful morning together in the midst of these awesome balloons and field of color.  (ok, that's the Mom version)  The boys were a bit disappointed but not to fear as the Karrs tend to make their own entertainment.  Pretty soon we had made our way to the parking lot where our vehicles were and Mike (with Jaxson in the stroller) and Matt (with Logan in a stroller) began to do stroller races.  We were all laughing and having a great time.  I'm not sure who won but it was close!  I thought for sure by this point that Lindsey would have wanted to go home and rest but she was still going strong so we headed out to breakfast.  Her appetite is healthy and it took a couple of hours but we had a great meal and she did really, really well.  Afterwards, yes, by then she was ready for a nap (we all were ;) and later we all went and watched Josh and his Dad fly their RC planes.  A bit more rest and she was ready for fireworks!!  We parked in the church parking lot and had a perfect view.  It was a magical day and the best part is that she had absolutely no tremors or seizure activity the entire day.  It was a bit of a miracle in itself.





Since that day Lindsey has had her ups and downs.  My daughter Jessica spoke with Lindsey while she was in the hospital this last time and then spoke to her again recently.  She said she couldn't believe how much better she now sounded!  On the phone that day, you'd never know.  A girl stopped me in church yesterday and she had stopped and spoken to Josh and Lindsey a few weeks ago and  said she couldn't believe that after spending a few minutes with them she walked away feeling happy and joyful and she had expected to be full of sadness at their situation but they gave her a huge dose of happiness instead.  Isn't that truly incredible?

Today, July 18th, is Josh and Lindsey's 3rd Anniversary.  Unfortunately, Lindsey is having a down day and is extremely tired and not too aware that it is actually their special day but Josh still took the day off to be with her.  He made her favorite food of all time, french fries, for lunch.  Honestly, that girl could eat french fries for breakfast. lunch, and dinner!!  And she loves fry sauce!  She will even eat it on brocolli.  Crazy and fun.  Their love shows through everything else that is happening.  Josh is strong, a little sadder, but I think not as full of anxiety, which is a blessing.  If you'd like to shoot them a "Happy Anniversary" note, I know they would love it.  If you are on FB drop them a line on their pages, Josh Karr or Lindsey Kae Robinson Karr.  You do not have to be on their list of friends to drop a note.  Otherwise go to the blog http://www.forlindsey.blogspot.com/ or even better to the website of http://www.livingthroughlaughter.com/  The website has much more information on it than the blog but whichever you are comfortable with.


Don't forget to still offer prayers, or send positive energy to Lindsey at 5:55.  Thank you one and all for all the notes, love, and encouragement.  There are people I knew very little at the beginning of this journey which began a year ago, who are now some of my greatest sources of peace.  Friends and family, you are loved.

With love,
Julie