Friday March 27 2015
A lot has happened since the last update. While we've made regular updates, we've had an issue with our provider where some of those updates haven't been posted. I'm creating a completely new site and will be adding this as a sub-site there.
2014 was a crazy busy year for us and saw many ups and downs with not only Isabella's health, but our own as well. We went to Las Vegas and made fabulous new friends. Isabella was introduced to the world of Elvis by a very talented tribute artist named Tyler James. He's the headline show on the First Street Stage on Fremont Street. We also made friends with our hotel VIP staff at the Palazzo. I'll be creating dedicated pages for both the Palazzo experience and the Tyler James experience.
We've started a gofundme campaign to help with the down payment on a wheelchair accessible van in which to transport Isabella. She's simply grown too big to try and transfer from her chair to a car seat in our 10 yr old SUV. We were approved for financing but have to come up with 10% down. You can see Isabella's gofundme campaign here:
Friday June 28 2013
Isabella is so excited today! Daddy says I get to go to Orcas Island this weekend to see the whales! Daddy also says I get to meet one of the nicest people he's ever met this weekend. Her name is Mamie and she owns Boardwalk on the Water, absolutely wonderful cottages on the water! We're going to stay two whole days! Visit both sites for complete photos and information! Boardwalk on the Water site 1 and Boardwalk on the Water site 2.
Friday April 5 2013
Only 7 more days until we step on our flight for our vacation back home. Isabella feels better, but she isn't well yet. She was asleep for two hours and woke up coughing. We have to keep the house at 66 degrees.
The past week, life has given us a slap in the face and a warning: a wake-up call if you will…life has said “don’t become complacent”…
We can never become complacent. Feeling safe doesn’t necessarily mean we are safe. Events beyond our control have forever changed the way we live and act in our daily lives. Many of the things we took for granted have been inexorably modified, and we are forced to adapt our once comfortable routines to accommodate the changes. We are on edge and very concerned, and worry that any change could be the precursor we have been dreading. We plan our activities with greater detail, and try to plan for the unexpected. We want to be prepared, but we aren’t prophets and can’t see the future. When Isabella is doing well, when we feel confident she is stable, we often forget things are subject to change and can become precarious in an instant.Thursday April 4 2013
Isabella has been quite ill the past week. Thursday through Tuesday she fought fever of up to 103.9 degrees. Acetaminophen and Ibuprofen helped keep it under control. She has felt really lousy and has been in mommy and daddy's lap a lot. Issy felt really crummy, but the kids in her class are so caring! They sent Isabella an email with pictures that they miss her. Isabella loved to see the photos and daddy printed them out so that she can look at them anytime she wants!
Isabella Feeling really crummy!
Isabella's Class at school telling her to get well and that they miss her! Once I get permission from parents, I can add the unedited photos that show the classmates!
Happy 7th Birthday Isabella! 1-30-2013
Five and a half years. A breath in time, yet also an eternity. Can it really be that 1954 nights and days have passed since we last heard your angelic voice? 168,825,600 seconds – 2,813,760 minutes, 46,896 hours, 279 weeks however you want to sum it up, it seems like yesterday.
How can mommy and daddy ever put into words the pure joy you have brought into our lives over these past seven years? How could I ever tell you exactly what you mean to us and explain the incredible journey we have shared together? Our lives have been magical, tragic, sad and happy since you came into our lives seven years ago today. Just like the best scenes from favorite movies, the memories we have shared play in my mind over and over with such clarity.
Many worries and questions: wondering if you would ever be able to walk, talk, have friends, go to the prom..have been answered thus far in our amazing journey. When you first got sick, you were so little and none of us could imagine what your abilities would become. None of us understood or could even imagine the amazingly beautiful, intelligent, kind and loving seven-year-old little girl that you are today.
All of those moments of fear. We loved you and photographed every bit of you…every face, every outfit, every day…we lived with fear. We lived with the what-ifs and the whens? What if this happens and when will this happen? As days turned into years, you achieved many many abilities. One day, there was an amazing moment of clarity…no parent knows who their child will grow up to be. No parent knows when their child will walk, or talk, or if they will go to prom, or college or get married. Parents can only hope. So that’s what we did…we have hoped. We have worked and pushed and fought for you. We love you for who you are.
When you got sick, everyone saw disabilities and differences. If only everyone could have seen you then as you are today, we would all have seen you just as you were meant to be.. perfect.
You are more loving than any seven-year-old I know. You are kind and caring, love unconditionally and live fully. You are beyond perfection. Your joy is infectious and your laughter contagious and your desire to learn is amazing. Even though we have been on this journey together, we promise you that we have learned more from you these past five and a half years than you will ever learn from us.
We are changed. We are better because of you. Each moment and each day that passes is better than the one before... and while some days may not be easy, each day is filled with life and love and laughter. Each day that is filled with time spent with you is the greatest gift we could wish for. Time is passing fast, but we are trying to hang on and enjoy each moment of this roller coaster ride of life….with its twists and turns and ups and downs. Anytime it all seems too much, when we don’t think we can take it anymore, we think of you, we look at you, and you smile. With that smile, each moment of pain, every bit of fear, worry and thought of ‘special needs’ disappears. Even though those early darker days of your illness are what make today brighter, they seem so far in the past. We don’t think of ‘special needs’, we think of you… of Isabella. Yes your condition is part of you, but it’s what makes you who you are.
Five and a half years has brought love, acceptance, courage and new friends into our lives. No matter where we go, people know you…they know you by name. As you progress through life, you will inspire people. People will change their majors to Special Education because of you. People have and will become more understanding and accepting because of you. We know..we’ve experienced it first-hand. You have turned us into the persons we are supposed to be.
You bring opportunities that we never imagined possible the first time we held you in our arms. Life-long friendships have been made because of you. Hearts melt and opinions change with every precious beautiful smile and contagious laugh.
Even though you have an illness, it doesn’t define who you are or who you will grow up to be…You are Isabella…OUR Isabella.
We will never treat you different, expect less of you or stop pushing you to try harder. We will never allow anyone to disrespect you. We will always encourage you, respect you, be your biggest fans, your advocates and your supporters. We will always hope for a brighter, more accepting tomorrow. Above all, we will always love you for who you are…our amazing beautiful, intelligent, fun-loving daughter with mysterious designer DNA and genes.
Our journey has been filled with the most incredible memories and some of the most amazing moments of our lives, and we look forward to each and every moment of our future. You are exactly who you were meant to be and we have no doubt that you will have the most incredible impact in the lives of many.
Love – Mommy and Daddy
Christmas Eve 2012
Merry Christmas! Thanks to our family and friends! A special thanks to our friends Meredith, Linh, and Jeannette at Make-A-Wish Alaska & Washington for having such a huge impact on our lives. We firmly believe that Isabella's Wish trip re-awakened her sense of discovery, and it has blossomed in so many ways! Before her Wish trip, she didn't really like change or variation from routine and the same old thing. Today, a little over 9 months since her Wish, Isabella is constantly looking to see what's coming around the next corner, behind the next door, on the next page, or passing on the road.
This is the first Christmas since becoming sick that Isabella has had any interest in opening presents or seeing what's inside. Isabella opened a few presents today, and you should have seen her excitement! We are posting videos so that you can see firsthand! It is the first Christmas in a very long time that we've truly enjoyed.
On Wednesday 12/19, daddy joined Make-A-Wish Washington and Radio Disney for an interview and gave a first-hand perspective about the importance of Make-A-Wish trips and how they can have an amazing positive impact on the Wish child and family. Did you know that there are local Make-A-Wish chapters that cover every state and grant wishes to the local Wish kids? Daddy will post the audio interview on this site once the final copy becomes available.
When we wrapped up the Radio Disney interview, they sent home a little bag of trinkets for Isabella. The one she loved the most was in the photos below. (Yes, there IS one of mommy, but she threatened to beat daddy to death if he posted it!)
October 11, 2012
Mommy and Daddy took Issy on her first camping trip. We went just 5 miles south of the Canadian border to Blaine Washington. Isabella loved it! We were sitting outside in our chairs. A leaf comes gliding down right in front of Isabella's face. She looks up in wonderment and amazement and grins as the leaves fall all around her....priceless...already worth every penny and every second of blood, sweat and tears.
Isabella's first campfire.
September 16, 2012
My gramma Cindy is here! TODAY IS MY MOMMY'S BIRTHDAY! HaPpY BiRtHdAy Mommy!
Here is a letter that I wrote for my Mommy's Birthday.
I love you so much. I love your smile, your laugh, your comforting hugs, and hearing your sing-song voice every morning, day and night. I wish I could talk to you….ask you questions about everything, or just chat like you do with sissy.
I remember everything. I remember every year on my birthday, I have received so many cards with hand-written words of love. I cherish every one of them. I can’t tuck them away into drawers, books, bibles or other nooks around the house, but I do tuck them away…into the corners of my memory. You often tell daddy that you wonder what I’m thinking when I smile and grin. I am remembering, each and every word you have written and said, every song you have sang, every tear you have cried, every hug that you’ve given me, and every moment of love.
There are so many reasons that I love you, but here are a very, very few. You gave me life. You feed me, dress me and bathe me. You take care of my health. You give me independence and let me be independent in my own little way. You encourage my curiosity. You are faithful. Your hugs are the most joyful feeling in the whole wide world. The sound of your voice has and always will be comforting. When I wake up every morning and you come into my room, it’s like watching the sun rise over your face. I love spending time with you because you are my world. You are beautiful inside and outside. You love me so much and have never made me feel like a burden. You are constantly reading to me and letting me learn something new. You are there for me when I need you most…I always need you.
I really don’t think people realize all the hard work and dedication you put into our family…your unconditional love, everything you do for us, every tear you have dried and cried, every encouraging word, every sleepless night, and every heartache and moment of happiness along the way. You put your life on hold for me, and I love you.
You are an amazing mother and and I love you more and more with every breath that I take.
Happy Birthday Mommy!
August 25, 2012
Sorry for the delayed updates. We've been very busy the past 6 weeks! Daddy and Mommy have been going to the gym regularly. Daddy's goal is to lose 100lbs. He's already lost 17 and Mommy has lost 11.
Isabella Lost her FIRST TOOTH Aug 18th!
Mommy, daddy and Isabella went to town to run some errands. Just before we left the house, Isabella had all her teeth. We are driving, daddy looks back at a stoplight to see this. Mommy says "suns a @#$%, SHE LOST HER FIRST TOOTH!"... now..where IS it? Mommy said she would dig through diapers to find it. It wasn't in the car seat, so we assumed Isabella swallowed it. (You know what they say about assume...) Daddy wasn't too bright.. when we got home, he found it in Isabella's chair and promptly announced it to everyone. Now mommy won't have to dig through diapers.
July 11, 2012
is in Chicago this week. Everyone is well now. Last week, July 1 -
July 7 was crazy. Daddy had food poisoning, and a virus. Mommy and
Isabella had a virus. Everyone was sick for the 4th of July. That's
okay, because our neighborhood sounded like a war zone. Daddy was
starting to think some of the neighbors mortgaged their house and bought
fireworks. We sat upstairs after Issy went to sleep and opened the
blinds and watched all the fireworks around the neighborhoods. Much
better than fighting crowds at the huge public displays.
Issy with a horse at Country Village Shops in Bothell, WA. Amazing what she loves and what can make her smile!
June 23, 2012 - June 30, 2012
One of the saddest weeks of our lives.
Daddy's brother, Issy's Uncle Tony was killed on Saturday June 23, 2012 in Ore City, Texas. He had just left his house to go on a motorcycle ride and was only 1/2 mile away from home when he was hit head-on by a truck. He and his family had just moved to Ore City a little over one week before.
Visit the Tony Pyle Memorial page. Tony will live at IssysWorld forever.
Tony and Isabella when she was just a few months old. One of our favorite pictures.
Pictures from our trip to Silverwood Theme Park in Idaho. More coming.
This has been an exciting weekend. We took a trip to Silverwood Theme Park just north of Coeur d'Alene Idaho. It was a 6 hour drive, but it was a fun-filled day. We all had a blast. Pictures should be up by mid-week.
Isabella made daddy a Fathers Day card at school. She and mommy kept it secret and gave it to daddy on Sunday! Daddy loved it!
Make-A-Wish is honoring wish dads this month for their tremendous strength and courage. Today they posted Issy and daddy! Read all three entries -
Issy and Daddy - June 2012
The Card Issy made Daddy.
My bubby Kaleb is flying to see me! I am so excited!
I graduate from kindergarten next Tuesday! I will be in First Grade!
Make-A-Wish Alaska and Washington posted my story on their website! Check it out!
Lots of Exciting new announcements coming to IssysWorld this week!
On Thursday 6/14, my bubby Kaleb will be here. Then for the weekend we get to go to Silverwood Park! We get to go stay Cedar Mountain Farm Bed and Breakfast. It's a real farm with horses, and sheep and animals! Visit back here next week to see the write up and pictures of our trip! I can't wait!
Check out Crops of LUV! They are a great organization! They make scrapbooks of Wish trips for the kids! Check out our "Links to MORE Friends" tab for more info!
Something else very special is happening for Father's day too! Check back next week to find out what! But sshh! It's a surprise and I don't want daddy to know!
Something exciting is coming to IssysWorld! Check back next week to find out what!
Lots of exciting news has happened the past couple of weeks. Isabella was very sick for three weeks and finally got well!
This has been a very long past couple of weeks. Isabella got really sick on Thursday 5/17. The rest of us caught it the next few days. We have all been drained this week. Isabella seems to be on the mend, but we'll watch her closely. Thank goodness for the long weekend. Nanny Nicole came and helped out a couple of days this week, which really helped Tina get the rest she needed to start fighting off this cold. Thanks to all of you who have visited and signed the guestbook! I've created a new generic email address for guestbook use, so now, no one has a valid excuse for not signing the guestbook! Check back here for big news coming up the next couple of weeks. I will post it here!
Took Isabella to see Sesame Street Live on Sunday. She loved it so!
Sunday 5/13/2012 - HAPPY MOTHERS DAY
For My Mommy and All Mothers out there...you are special, loved and appreciated.
The stories we’ve read in books and the ones written in my heart.
I can’t tell them to you, but look at my face and you can see them.
The daily routines that have turned into years and the new ones we have invented along the way.
My mother’s daughter, different from her, and yet the same.
And I can’t think of anyone else I’d rather be.
I love you mommy.
We went for a walk to our neighborhood park yesterday. Isabella loves to slide, and we thought we'd take some pictures and share them with you. Click on the "Isabella Sliding" tab above to view all the pics!
Isabella was so excited today (so were mommy and daddy)! Daddy finished her swing, and she loves it!
There aren't really any adaptive swings out there that are really affordable, and none that really met our needs. We didn't need a huge play set because Isabella only swings, and she likes to slide as well, so we'll add a slide later. I designed and built a swing set that will last for years. Here are a couple of pictures, and you can watch the video on YouTube here!
Today was a special day. Isabella got to go and actually meet some of the people behind the Wishes.
We wanted to pay a visit and say "Thanks!" to some of the "Wizards behind the curtain' of Make-A-Wish. Isabella was pretty excited about her visit, and didn't know exactly what to think about all of the buzz her presence in the Make-A-Wish Alaska and Washington offices created. Many thanks to Meredith, Jeannette, Lindsay, Linh, Juli, Jessica and the rest of the Make-A-Wish team for taking time out of busy schedules to welcome us and show us around!
We want to say "Thank you! Thank you! Thank YOU! To all of those who have written us. It definitely makes a difference and helps feed our spirits! Please, keep the emails coming!
Lots has been going on today. IssysDad was back to work. This afternoon Mommy and Daddy worked on Isabella's swing set. Angles were calculated, drawn, and out came the miter saw. Many cuts were made, and all the 4x4 A-Frame supports are cut. Once the swing seat gets here, we can drill the holes for the seat supports. We'll also do final assembly then too!
Please go to the Angel Mosaic and vote for Isabella's Photo's (there are two, both are on our Mosaic Tab to the left). The pixels with the highest number of votes get featured in the GKTW newsletter!
IssysDad can't sleep. So I'm up in the wee hours posting tons of great news and updating the site!
Thursday 4/19/2012 - Today Is my Sissy's Birthday.
Here is one of the reasons that I love her! My Sissy plays with me, and loves me, and makes me laugh!
Something magical is going to happen today. Stay tuned to find out what!
Tuesday 3/20/2012 - Notes from Monday 3/19/2012