Thursday, November 17, 2011


Tonight at church we had a guest speaker.  This man also talked about all of these things, all of these blessings that have happened to him to go along with the not-so-great things.  It was cool because it gave me a better idea of some of the things that I need to do, and how to go about them.  His sermon was so relevant to me because my life has been going through so many of these roller-coaster changes, too.  Even my son gets nervous when things are good.

I don't want to embarrass anyone or make them angry by publicly calling them out on my page, so without naming people, let me say now that I know how loved we are.  I know that Jesus loves me, my family loves me/us, but I also know that my extended family loves us, too.  While I would give anything for my family members to not be sick, & I would trade anything to have my little girl healed, I know that there will always be wonderful things coming out of our struggles.  I've been saying that for years, but every day I see it a little more clearly.  We have learned to fight, to come alive.  We have learned to lean on each other instead of fighting and turning away.  I have learned to lean on God, trust in Him, and let go of my worries, knowing that He will take care of it.  We have become much more compassionate and understanding.  But all of that is only the beginning!

I see what an impact my CHILD has on people.  The strength, courage and determination of my little girl, all placed into a very sweet, smart, loving, trusting, happy little package, teaches people.  People are inspired by her!  I feel so blessed to have my children in my life, but to be able to watch a child change lives?  That's seriously blessed.  Adults notice.  Kids notice.  So many adults are quick to yell at the little ones, but not her.  She's like a very wise, old soul.  I have often said that our school is amazing!  They really, truly take care of her, and her brother, too.  I know that they are in the best place possible for them.  The last big act of kindness that I will be accepting comes from their school.  The group of All Pro Dads wanted to do a community service project.  They called Kevin & I while I was with Emily in the hospital.  I had thought that they would be going around mowing people's yards that didn't have time to do it, things like that.   Well..... not so much.  They are focusing on us.  (I really appreciate this.  The wonderful thing is that they have access to Emily's medical records, so they 100% know what she is going through.)  Yes, we are a mess.  We were never able to finish the details of our remodel in 2007 because of everything going wrong.  They are going to help out with a LOT of our needs.  Totally unexpected, but very needed.  I am not good at asking for help. Like, I don't even know how.  I pretty much don't do it.  But when it's offered, it's a huge relief.  That's how this is.  I told them that I don't really care what they do.  It's true- I trust that they'll do what they feel is right, and I'm so happy to have help that I don't care how it comes.  It's hard to believe how much we've come through in the past couple of years.  Personally, I'm actually very happy.  This is our normal.  We can juggle stress the way that many people juggle golf games or nail appointments.  We pretty much rock at dealing with stress now.  It gets so much easier as you go, especially when you learn to lean on God for comfort.  Hey, we're truly living!  We may have some really low, bad days, but our good days are amazing!  The ups make up for the downs.

We've also made some amazing friends.  We had so many people that I expected nothing from, whom I loved before anyway, that sent things, texted, called, dropped by, or messaged me on Facebook.  I didn't feel alone this time in the hospital.  Last year we really didn't know anyone, Emily was scared and uncomfortable.  This time, she was sad that she had to be there but once we moved to her normal hospital (ha!) she was happy.  I was so thrilled to have some of our other JA families also in the hospital.  It made it feel more like home.  And my heart swelled at how much love we have.   I "watched" through Facebook and heard some conversations about an amazing act of kindness that I am thrilled to have had a very miniscule part in.  This just shows how awesome these people are ;)  I am still in awe.

There is a girl in a hospital in TN.  Her parents were told that she would never make it to five years old.  Her fifth birthday was the first week of November.  Her parents had planned on having a grand vacation to Disney World in celebration, but instead they were seperated because her hospital was quite a way away from home.  I have lost track of how long they have been in there, but I believe at that point it was almost a month.  My amazing friends decided that if they couldn't get her to Disney, they would bring Disney to her.  This was pulled together and pulled off in about a week.  It's still hard to believe how much love and devotion went into this.  Almost as hard to believe as how it was done!  I wouldn't have had a clue where to start.  Everyone bands together, everyone wants to help.  How often do we find that now in today's society?  And yet, that is how life should be.  I am hopeful that perhaps now we can start to turn the tables and start giving back.  We have been so, so blessed!  How many people say that?

On a different note, Em is doing pretty well.  She's tired, but she's definitely getting better.  Her chest doesn't hurt, and the scar is looking much better now.  We're still worried, we still have to be cautious and vigilant, but she certainly seems to be improving.  She has been NSAID free for a month and a half or so now, and she seems to be doing ok with that.  If we can keep her off of those, that would be awesome!  She's had a couple of days where her wrists hurt, or ankles or knees, but it's not been too much.  We did increase her steroids for the week to try to squash the flare, but she's doing well with the decrease. 

As for me, I'm trying to get caught up with many different things now.  I haven't been online very often; I have barely had time to check my phone!  It's nice to get back into normal routines.  We're getting there  :)

1 comment:

  1. Danielle ... it is so wonderful to hear such wonderful news coming from such a great family that has been put through the ringer. I am sooooo happy to hear that Em is doing much better. Prayers have been said daily for all of the children and some of the adults having so many issues at this time. Em really struck home with me, because as you know, unfortunately Cassandra on the 27 of October was Dx with Dermatomyositis. So, you have already taught me so much and showed me a lot of avenues and I genuinely thank you for that. I would have been a basket case without your help. You going through all the stuff with Em still found it in your kind heart to help this out of her mind mom, get through the beginning. I thank you and Kevin both. Em and Zach are blessed to have such wonderful parents and you are blessed to have such wonderful children. Thank you again.