Sunday, March 22, 2015

Firsts Revisited

As a result of my Brain Surgery, I was able to experience many 'firsts' again.  Its normal to hear from your parents about your first word, first tooth, first step. I didn't realize when I was watching these in Zachary that I'd be re-experiencing these with Kadin, but sometimes life is funny.  I started walking again in March 2010 before I was able to leave ICU/CCU and move into Progressive Care and then onto Rehab.  This looked quite different that what you probably experience on a daily basis. For me, it entailed a walker, leg weights, an IV pole, oxygen tank & a wheelchair trailing behind. I had quite an entourage.  By the time I got to Rehab, I was detached from the IV pole, the oxygen tank, and no longer had a wheelchair following me. I also had my very own fancy walker that could also be used as a chair when I needed a break. It came equipped with a basket and my sister Jaime put a bicycle bell on it to let people know I was coming thru. What a hoot that was!  As part of my days in Rehab, I was learning to walk without the assistance of a walker as this was one of my primary goals.  On March 19th, 2010. I took my 'first steps' without assistance. My fabulous Physical Therapist was inches in front of me, poised & ready to catch me if I fell as that was quite a possibility.  You see me almost do just that in the video & the look of fear & determination I had is unmistakable.  I am sure as many of you have followed my recovery or learned of it after the fact, it is quite difficult to imagine just what I was like. This video shows it all. I cannot explain how unnerving it was to learn to do something I had mastered over 20 years before. Its still something that I must work on, but its a constant reminder of all the blessings I have received.

I wish I could figure out how to add a voice recording to show you the difference in my voice as it is quite dramatic too.  My Mom had a voice recording of me saved on her phone of Zach & I when he was potty training.  The next saved message was one of me when I was in Rehab. I struggle now to understand myself.  I have a hard time figuring out how my family ever understood me.  Thankfully, I used sign language & many notebooks (which I still have) to communicate.OH and they were INCREDIBLY patient.

After looking back at all this, I can only say GOD IS GOOD!


Saturday, March 21, 2015

Being Honored

Being in the spotlight is incredibly uncomfortable for me. I am a behind the scenes kinda girl. I think I have always been a bit uneasy being in front of people, but now, I am quite uneasy.  Even though I have made giant leaps in my overall recovery, I get stuck seeing that girl that is in the hospital bed that can't walk very well and cannot communicate.  I get nervous when I have to call someone or speak in public. I am scared to walk by myself because I am worried people will notice that it isn't in a straight line but more of a stagger.  I get flustered easily now and either cannot find the right word in a conversation or I try and speed through the conversation, which I am sure makes it more of a challenge to understand me.  I have some fears about how I will be perceived too. I don't want to be looked at with pity, but with friendliness. It is tough.  I was asked a few weeks ago by a  friend of mine if at the annual Royal Family Kids Camp (RFKC) Night to Remember if she could mention that I was the one who dreamt it.  This year would be the 10th year and she wanted to acknowledge my assistance in getting it off the ground.  I reluctantly agreed and assumed I could just sit in the back of the auditorium and be a silent witness to an amazing fundraiser for an INCREDIBLE camp.

Let's take a step back...10 years ago the first Royal Family Kids Camp was getting set to hold its first week of camp in Alaska. My sister Jaime was on staff as the Dean of Women, a volunteer counselor position who accompanies all the kids and staff (called cousins, uncle/aunt, grandma/grandpa).  I was a prayer warrior as I have been each year of the camp's existence.  Following camp there is a Welcome Home dinner for the staff & prayer warriors to share how camp went.  It was during this Welcome Home dinner that I felt a familiar tug at my heart (Holy Spirit).  I listened intently to the stories that were shared and rejoiced for the successful memories & moments these precious children got to take home. I was moved.  I remember hearing that it cost $500 per child to attend camp for a week. I knew that this amount of money had to come from somewhere to ensure that many many other children could attend camp the following year. I approached Chris Scott who was and is still the Amazing Director of the camp and suggested the idea of a fundraiser event or a 'Night to Remember' where we could successfully obtain finances for the camp via donation from those in the community.  I knew that if people heard about the camp and its mission, they would lend their support.  Thankfully, she was just as excited about it as I was.  I got hard to work writing letters & contacting restaurants in town seeking dessert donations for a coffee/dessert evening in which we would share the mission of the camp and the success of the previous year.  The first year was a tad hairy as most first events are... I remember hand making starfish favors for each person in attendance.  I remember email's back and forth to generous businesses in town regarding coffee & desserts they would willingly give us. I remember the Pastry Chef from Orso/Glacier Brewhouse making a dessert special for us and even giving me his baking pans on loan until I could return them the next day.  I remember running around town with my sister Jaime collecting desserts the hours before the first Night to Remember was set to debut. I continued on helping with the Night to Remember for the next few years, mostly just providing desserts as others came up with ideas for making it bigger and better.  In 2010, I was unable to be a part of the Night to Remember in any way as I had just been released from the hospital after a six week stay following brain surgery to remove a Hemangioblastoma from my brain stem.  My recovery was just beginning as I was learning to walk, talk and swallow all over.

Last night, Chris, paid tribute to me for my vision of Night to Remember.  I am humbled that she did this, but I am truly in awe of how this event has morphed into an incredible evening where people can gather together and commit to an exciting and rewarding organization that is radically changing the lives of those it comes in contact with.

Royal Family Kids Camp is all over the United States.  I borrowed this from their website ( so that you could see what they are about. PS They are incredible!



Every foster child, ages 6-12, experiences a life-changing camp, club and mentor.


Create life-changing moments for children of abuse.


Mobilize the faith community to confront child abuse.


Launch and sustain camps, clubs and mentors.


  • Treat People Royally
  • Keep Moving Forward
  • Make Moments Matter

The beautiful blown glass starfish that Royal Family gave to me. Amazing!!!! It is beautiful and I love that it will remind me of the Starfish story.

Invitation & Schedule of Events for the Night to Remember

RFKC Director Chris Scott, sharing about camp

I mentioned the starfish earlier and this story is one that Chris shared with me many years ago when sharing about Royal Family Kids Camp. I hope it blesses you and it helps you to see the parallel between God rescuing us and us rescuing these precious kids.


Starfish Story
A young girl was walking along a beach upon which thousands of starfish had been washed up during a terrible storm. When she came to each starfish, she would pick it up, and throw it back into the ocean. People watched her with amusement.
She had been doing this for some time when a man approached her and said, “Little girl, why are you doing this? Look at this beach! You can’t save all these starfish. You can’t begin to make a difference!”
The girl seemed crushed, suddenly deflated. But after a few moments, she bent down, picked up another starfish, and hurled it as far as she could into the ocean. Then she looked up at the man and replied, “Well, I made a difference to that one!”
The old man looked at the girl inquisitively and thought about what she had done and said. Inspired, he joined the little girl in throwing starfish back into the sea. Soon others joined, and all the starfish were saved.
— Adapted from The Star Thrower
by Loren C. Eiseley

Monday, March 09, 2015

Mokapu Beach Pictures by Mariah Milan

As promised... here is the link to Mariah's pictures...Once I have the originals in my hands, I will be sure to share..until then.. check out this teaser....

Thank you so much Mariah! You captured a milestone for me! I LOVE pictures and these are fabulous!

I absolutely LOVE the ones of my boys!!! What photogenic kids they are!  

It is hard to think back 5 years and to be so unsure about the future.  By March 9th, I was still in ICU. I am thankful my sister Jaime took such diligent notes so that I can go back and reread and remember all that I have to be thankful for.  On March 5, 2010, I had completed some PT...I say some because at that point I was only able to walk for 70 feet. I did a Google  search on 70 feet to show you that distance and I came up with the length of Rapunzel's hair from the Disney movie Tangled.  During the afternoon of the 9th, I also had my stomach tube placed.  I still remember this procedure even though I was medicated and I definitely will never forget my first day recovering from it. I am sure my Mom and Darren wont either!  Out of the various procedures, tests and assessments that I endured during my 6 week stay, I must say that this was one of the worst.  I remember Dr. Peach coming in and telling me about the procedure, I remember my family discussing the importance of a permanent feeding tube, I remember my feelings and fears about what a feeding tube meant for me.

My PEG tube - had it for over a year & so glad to get rid of it

Dinner time when I came home... my meal Jevity, Zach & Darren ate real food, 
Kadin was doing a bottle & baby food - 

My food - Jevity

My meds - compared to what I was on in the hospital, this was a major downgrade

I always asked for soda... one day while in Rehab, Dr. Kralick obliged and wrote an order for Dr. Pepper (my favorite) to be given to me in my tube... I even burped Dr. Pepper burps.... it was wonderful :0)

I take some time around my Brain Birthday to reread all the daily logs, emails, cards & prayers that were collected for me during those long 6 weeks. I think it helps me to keep perspective. Its TOO EASY to forget the experience once its past.  I don't remember all the minute details anymore, just the big bold points. Overall. I am so thankful and blessed to have endured this. I count myself lucky.  May God continue to be present in my journey, all the days of my life.


Sunday, March 08, 2015

Happy 5th Birthday..already?????

Okay so I am a little delayed at getting this up.. but, I have a great reason.  On the 25th of February, I celebrated my 5th Brain Birthday.  I could say there were balloons and cake but nope, we chose to celebrate a different way... with sand, sun and surf.  The day after my bellybutton birthday, we headed to Maui for 10 fabulous days. While there; we explored, splashed, laughed, and played.  On my actual Brain Birthday, we met up with a wonderful local Maui photographer to capture the moment. I will be sure to share more about this as it becomes available.  Here's some photos I took of the fun we had....

So beyond blessed to be part of it all.  Hawaii was a dream that Darren and I talked about after my surgery and we wondered if we could ever manage it.  I'd say we ROCKED it!!!!

Thank you Lord for your healing grace and surrounding me with such beauty to enjoy!

Love my boys (all 3 of them) more than I could ever say.