Vastly Different

Thanksgiving.  It's been anything but normal.  I know, I know - nothing is normal and no one is normal either.  Today though, it's been rough and I can honestly say that I'm glad the night is coming to an end.

You may remember me writing recently about Henry's PANDAS and the manic behavior that sometimes comes with it.  It's almost been a never-ending manic episode for Henry since this past weekend, and it all came to a head today.  It's the PANDAS affecting his mind, body and even his spirit.  It's been terribly hard to watch as he's spun out of control on this holiday.  Is it the break in routine?  Is it the excitement over Christmas and gifts?  Has it come on because it's almost Ellie's Month, almost Ellie's birthday?  We have no idea, and we don't need any suggestions or remedies, although we do appreciate your concerns.  I assure you, we are working hard to find out what is going on and why.  The main thing that keeps me sane is knowing that God IS in control.

We left our Thanksgiving celebration very early today.  It was small celebration with just my parents and sister, and yet H was still overstimulated and overwhelmed.  I realized too that I now become overwhelmed on holidays as I sense the lingering emptiness without my Beautiful Ellie Kate.  I wonder if I will always feel that?

Here's a glimpse of what it's like for a family like ours during the holidays.  It isn't that we don't WANT to take part or be a part of it all.  We absolutely do!  It just doesn't always work out best for our family and our extra special members.  Maybe this information can be of help to you or your family with future events and holidays: What I Wish They Knew


Today IS an official day of giving thanks, and I truly am grateful for so many things.  I HAVE nothing without God.  I AM nothing with out Christ.  He provides all of our needs at just the right times.  Today, I am thanking Him for going ahead of us these next few weeks and making a way for peace to reign in our hearts, for His comfort to sustain us; for little reminders of sweet times with Ellie.  Oh, how I need Him!

I am grateful too for the ability to celebrate Ellie Kate with so many of you . . .

For all who have so graciously given gifts in honor of Ellie Kate and the Month of Reckless Love, THANK YOU!  We can't wait to deliver these special gifts to children being hospitalized next week, on Ellie Kate's birthday.  It's been ten years since she was born, but as Henry tells me - to us, Ellie will always be seven years old.

Ways to Participate in the Month of Reckless Love:

1. Purchase items on our Reckless Love Wish List: All interactive toys and books donated will be given to ill children at OU Children's Hospital on December 4th.  As a family we will be delivering these items as we celebrate Ellie Kate's birthday:  In Honor of Ellie Kate - AMAZON WISH LIST

2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate (see the definitions and explanations above).

3. December 4th: 

• For Ellie Kate's birthday, we ask that you love, serve, encourage, or give to a family with a special-needs child OR to a family who has a lost a child due to any circumstance.  Bring a meal, bake a cake, send a balloon or flowers - anything uplifting to let the family know that they are loved and not forgotten.
• Share Ellie's story with someone you come in contact with.  Post and let us know about your encounter. 
• Share your favorite Ellie Kate memory or story on our FB page

4. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.

FOR WAYS TO GIVE while receiving a tax write-off: 

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and ALL donations goe directly to Lucy Belle and Henry's medical costs.

*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more.