Thursday, July 31, 2014

New School year, New Outlook

I have always loved the Back to School season, and  NOT just as a mom tired of having the kids under my feet all day. Even as a kid I loved the frenzy of back to school shopping, the crisp smell of a fresh notebook, labeling all of my pencil boxes and folders, and just the feeling of a "new" me as the school year begins. My name is no longer etched on folders or pencil boxes but I love seeing my girls get ready for back to school! This school year as a mom of 3 daughters, I am determined to instill in them the excitement I have always had, and also get them thinking on what type of person they want to become this year.

Summer calls for late nights, long days in the sun, less structure and lots of playtime. We do have reading time and chores each day but I am a lot more lax on schedules, bedtimes, and daily tasks. I can tell as summer is coming to a close because the bickering begins and the kids get antsy as they have had too much " together " time and less routine. It reminds me it is time to get back on track.

This year, we have decided to incorporate a family theme into our back to school traditions. Inspired by a good friend who does this with her family, I liked the idea of focusing on a family goal. Even something I can chidingly spout out at my kids at morning drop off or remind them as they rush off to their activities. I wanted something meaningful, yet not too serious. Something they would be able to grasp and remember and recite as our family motto. So, the past few days it has been on my mind, "What type of Miller family do we need to become?"

Every family has room for growth, things to learn and attitudes to adopt. After a summer of fun and honestly a little entitlement on my kiddos' part, I really have been on the hunt for a good motto.
Here in our community and in my social media world a lot of families are going through significant trials. Several Aicardi children have been lost over the past year, a dear friend and mother of 4 has stage 3 cancer, another close friend is having significant issues in her marital life ( sadly more than one friend is in this situation), a child of a friend died suddenly and tragically, a 2 year old in our community was recently diagnosed with leukemia and has been in the hospital for weeks.. the list goes on. All of us, everywhere we turn can find others in tough situations. It is the reality of being human and when our lives seem tough too bear, there is ALWAYS someone out there suffering more. It has been a humble lesson I have had to learn as Brooke's mother and I am glad I have. It has made me grateful for the trials I have been given.

With all of this going on, I feel my children and Ryan and I need to be reminded of the wonderful life and blessings we do have. Here are just a few of the countless blessings-

We have each other! Thank goodness for a loving God who put us together in this family to learn and love.

We have a home to live in and food to eat. No real suffering for basic needs around here.

We have family, friends, a loving community, a very real support system helping us as we raise our 3 daughters.

We have a bright faith in Heavenly Father and Jesus Christ, making life full of hope and meaning.

Ryan has a good job, with good benefits, and retirement and it is stable and steady.

We live in America and all of the freedoms and blessings it affords.

Life has adapted, even when a special needs child with very serious issues is part of the deal, we have found happiness and joy.

We are all pretty healthy, even little Brookie. Crossing my fingers, everyone is stable, healthy, happy and living a good life.

This list of recognizing our blessings could take up our entire blog, but you get the idea. We are blessed. Yet sometimes it is hard to recognize these blessings when we are busy, when we feel stressed, when some have it easier, when it seems some seem people have all the luck, when we are sleep deprived (which is all too often) , when we are focusing on things that may not be the most important priorities to focus on; our world is full of voices and distractions that detract from family life.
 So this year, with all of the trials around us and issues we are facing I feel like GRATITUDE is a value I want to instill in us and our girls.

President Thomas S. Monson said it perfectly when he said,

Done, AMEN, what more can I say? The Miller Family 2014 theme is born. First on the books, and hoping this a tradition we can keep. More on Pres. Monson's tender message can be found here-
Gratitude, it seems like a no brainer! All of us need reminders to be more grateful, to give service, to recognize that we are very blessed. Always. So as we go about our lives this year I hope I can remind my girls to whine less, say thank you more, serve others, be happy with where we are now.
One goal we have is to do a monthly family service project. It may be in a bigger scale such as going to a soup kitchen or collecting toys to donate for underprivileged families, or it may be making cards for Grandma or doing a kind deed without having to be asked. I want my girls to become good, kind people. Starting now when they are little ladies seems like the best way. We are reading several books together on being a good friend, and treating others kindly. We are also focusing more on daily prayer and personal scripture study. Even Juliette and Audrey are doing daily scripture reading out of children's adapted scripture stories as part of their chores. Afterwards, we are talking about it and what they can take from each story. We may miss a day or two or 3 but having a renewed goal of becoming a better Miller person is a goal we can strive for. It can't hurt to be more focused, right?
So as I send my children off to school, even little Brooke, I am hoping they can remember to have gratitude in their hearts. It is a tough job being a mother, worrying about the little people you are helping to mold into great adults. Hopefully as we take time to have gratitude... I am one step closer of accomplishing the job.

With this I must state, I am SO grateful to be their mom!
- Brit

Monday, July 28, 2014

Things do work out

Life has a funny way of working out, even when you don't think it ever can...somehow it will.

 Four years ago Brookie and I attended the Aicardi Syndrome family conference. She was a baby and I was a shell shocked, newly crowned, special needs mom.  I remember walking in the conference room seeing many many Aicardi Syndrome girls, most in their wheel chairs and many having significant medical issues. I felt like grabbing my baby and hiding in my hotel room. But I toughened up, held it together and once again looked out at the sweet group of girls. There I saw strength, perseverance, happiness, innocence, and I was humbled. The rest of the weekend is a blur but I do remember the feeling of acceptance and love and relief that I wasn't alone was there. And bonus that I had fun!

Flash forward four years later and Brookie and I were able to attend the 2014 Aicardi Syndrome Conference this past weekend in Chicago. This time there was no running for the hills, breaking down or anxiety attacks. I was So happy to be reunited with those who " get me" , those who I have connected with online these past 4 years, these amazing role models who have become my friends. It was seriously awesome! 

Brookie and I jet setted to Chicago, with her nurse Tanya joining us on our adventure. We spent the weekend taking classes, reuniting with friends, making new ones, and Brookie had a ball playing in Aicardi child care with other girls like her. Her smile was infectious and she had lots of giggles and performed all weekend. Aside from a bad seizure Friday morning, this girl was ready to play. It was sweet! She knew she was among friends. 

I also was in the committee this year so it was fun and rewarding to help behind the scenes and even teach some classes. I still have to pinch myself that I was actually giving advice and answering questions. Oh how Brookie has changed me these last 4 years!

So while things aren't perfect, Aicardi  Syndrome is still a tough life at times and I still have SO much to learn, I feel like we are in a good place. And I am good with that. Life does have a way of working out, even when you least expect it. 

" Things will work out " - Pres. Gordon B. Hinckley 

- Brit

What a weekend, can't wait for 2016!

Wednesday, July 23, 2014

Make A Wish, trip of dreams

Have you ever felt so grateful for someone or something and your heart feels like it could burst, your eyes are permanently teary, you just are so overwhelmed, even humbled with gratitude, and  words just aren't enough?

That is how we felt as we experienced Brookie's Make A Wish trip to Walt Disney World this past February. It has been a goal of mine to blog about our amazing wish trip. I can't even do justice the amount of thanks I need to repay, or the love and gratitude I have for those that made this magical week possible. Let me just say this, " Thank you deeply, and you know who you are. This trip not only gave us the time of our lives, it gave us time to be together, laugh together, love together. That in itself was a wish to be fulfilled and you did it."


Before I had children I imagined what they would be like, what our lives would be like and all of the fun happy fuzzy easy memories we would make together. I was super naïve at how difficult yet rewarding motherhood can be and I definitely did not think I would have a child with a terminal disease. It happened to other families, stronger people, not simple old normal me. So much to my surprise when our third little bundle of pink cuteness had a scary syndrome with a grim diagnosis attached. It was rough and I have learned a lot. We all have.

 Now, fast forward a few years. Life is hard yet happy, busy but we have a system and life has adapted to our special needs sweetie pie. We are doing ok. New Year's Eve 2013 I get a phone call while changing the sheets on  my daughters' beds ( yes I was living it up that evening ha!). A wish granter from the Make A Wish Foundation was calling because someone had nominated our sweet Brookie to have her one true wish granted. Pause, silence, shock.... " What?" From there followed a sequence of events I never imagined our family being a part of. Wish granters showed up at our home with love, happiness and gifts for ALL 3 of our girls. Excited to meet our Brooke, happy for us, and ready to make her little dreams come true. It all seemed so surreal, who thinks they will have a child that will qualify for Make A Wish? It is exciting and sad at the same time. Yet here we were, my kids were beyond thrilled and Brookie, though nonverbal, was happy and giggling like crazy because she knew something was up.

Now, some people questioned us, sadly actually, and even speculated how could Brookie technically "make a wish" since she can't speak her wants and needs? Luckily, Make A Wish is for THE FAMILY TOO. They help you decide based on what makes the wish child happiest, feel most loved and will be a lasting impact on their life. Well anyone that has ever been around our lil daughter knows her cues and know what makes her happy.

 Our wish granters went around our family, asking about Brookie, seeing what cartoons and songs she liked, if she liked to be indoors, outdoors, moving, still, etc. It was cute to see the girls really know their sister even though words aren't expressed between them. Then Artemis, one of our amazing wish granters turned to Ryan and asked what he thought Brookie would want for her "one true wish". My husband, who is not emotional AT ALL, suddenly grew teary and quietly said, "to be like them" pointing to Juliette and Audrey. It was a sad, special moment and it gave the wish granters a sneak peak to the limited world our Brookie lived in. From then on it was all happiness and plans, we decided we need to make a memory with our family to savor when our littlest goes HOME, so we were off to the happiest place on earth! I still can't believe this happened for us!

Now time for the good stuff, the trip! Picked up at the crack of dawn in a huge Make A Wish limo, my kids were beside themselves. I wish our neighbors would have been up to see the craziness, they probably heard us though!

We all look so tired in this pic but we were happy! After first class service at the airport and our wish granter Chris there along with a Southwest Wish coordinator to take us to our plane, we finally were seated. Brookie was happy and my girls passed out gifts for all of the passengers- a bag with ear plugs, gum, and a note excusing Brookie for any misbehavings on our flight, for she was a Make A Wish child, and... we were on our way. It helps that my crafty friend Merri helped us make them!  Needless to say the whole flight was in love with our girls before we even took off. The generosity and love of the passengers and staff makes me teary just thinking about it. Truly this little girl is a light to the world.

On the way there Brookie and I were across the aisle from Ryan, Jules and Audi so I spent a lot of time snuggling with her as she napped and chatting to the kind lady next to us in our row. Traveling alone, she was so sweet to Brookie, helped me entertain her and asked all about her, our lives and what it was like to be a special needs mom. She looked exhausted and worn down but was pretty private about her personal life, just that she had flown to visit her ailing parents and it was a stressful time. She was headed back to her home with her husband in Florida. We talked for several hours, mostly about life with Brookie. She hugged me as we left the plane and I sighed with relief that the girls had been good and that we made it to Florida. We got off the plane and headed to the baggage claim. As we walked up to the front there stood the friend Brookie and I had made on our flight over. She was with her husband and was smiling, clearly waiting for us. He thanked me for taking care of his girl and she approached me with a big smile and happy tears, thanking me for sharing our sweet Brooke with her. Her plane ride was expected to be a sad one, as her family situation was very depressing and she felt lost. She said sitting next to us was a gift and a treat and she was so thankful to have met Brooke. I was humbled and happy. Clearly this little girl has such an impact on everyone she meets. Truly she is Brookie the Brave.

Going to fast forward a bit as rental cars and baggage claim isn't all that exciting. Where did you stay, many have asked me? Well we stayed at a place like no other, the sole reason we chose Disney World over Disneyland. We stayed at Give Kids the World (GKTW). This amazing resort only hosts wish families. They only guests that stay on the property are families with children who have life threatening diagnoses, and this magical place is run by hundreds of volunteers each week that serve our special children. It is so humbling to me that we got to stay at GKTW and someday I want to take my girls back there to serve. It was life changing. Give Kids the World is a resort like no other. Everything is complimentary from our amazing private villa, meals, late night pizza delivery, daily visit from the Gift Fairy, on site pools, horseback riding, goofy golf, fishing, carousel, massive playground, all day/night ice cream shop, character visits from all the theme parks, holidays all week long, special events, crafts activities, parties constantly happening, Audrey's personal favorite- a spa for the girls to be pampered in, the castle of dreams which I will touch on later. I could literally go on and on. We could have solely done GKTW for our entire wish trip. It was truly amazing. And to see and meet all of these families, in situations like ours, feeling like we do, and having this special week together was one of my most humbling experiences. I truly am so thankful we got to stay at Give Kids the World. It made an impact on our family that will last forever.

Now let's talk about the amazing theme parks we got to visit while on our wish trip! First day, we decided to hit Sea World Orlando! We were exhausted physically and emotionally from our traveling day so we decided to let the girls sleep in a bit, then they did horseback riding and breakfast and were off to Sea World. We love Sea World San Diego so I was anxious to see the differences between them and Orlando was awesome! It had more rides and attractions and my girls had a great time! Brookie liked the penguins and the Antarctica ride. My girls always love the dolphin show. Shamu gave Brookie some loves and we had a great day. I like Sea World as it is relaxing for Brookie. It was a good first day to ease us in to the hectic pace of a wish trip. The staff was so courteous and aware of Brooke's needs, we loved it. I am so grateful for Sea World and what they do to bring hope for wish kids.

Next day, Animal Kingdom! I have to admit, I love Disney and Magic Kingdom, but Animal Kingdom might top the list of our favorite park this trip. We had a serious blast and there was so much Brookie could participate in! We started off the morning with a safari breakfast with Mickey and Friends, It was delish and Miss Brooke loved meeting the characters. I think the character greets were her favorite part of the trip. She giggled and cooed and always won them over with her sweet smile. We loved being able to eat breakfast and meet a lot of characters at once. Juliette and Audrey are all about the autographs so they loved being able to get so many on this trip. It was a fun way to start our day!

What else did we do at Animal Kingdom? What didn't we do!? Safari rides, nature hikes, fun rides, the amazing Mt. Everest Rollercoaster Juliette, Audrey and me rode 8 times in a tow while Daddy took Brooke on a safari walk, character greets, a bird show, animals of all kinds, more rides, good food, fun, family. Such an amazing day! It is like an amazing zoo or safari park Disney- fied! We loved Animal Kingdom!

Next day, Magic Kingdom! Off to the place that epitomizes the Disney experience. My kids were so excited! We had to park and then take the monorail over the water to Magic Kingdom. That in itself was like an exciting ride to the girls, haha! The day had was just beginning. Disney World Magic Kingdom has a beautiful Cinderella Castle, even more so I think than Disneyland. Much of it is the same as it's California cousin, a few rides were missing but it was still a super fun day! Brookie really loved the character greets, we got to do so many as wish families don't wait in any lines, she loved the Winnie the Poo ride, It's a Small World and Peter Pan. It was so adorable to hear and see her literally crack up during the Winnie the Poo ride. She just loved him! It is endearing when she fully laughs, she smiles a lot but doesn't always laugh. She was really happy this day. Juliette and Audrey loved it all, but of course Space Mountain and Thunder Mountain were these little dare devils' faves. We had a jam packed fun day! We also did a character dinner with Winnie the Poo and Friends that Brookie especially loved. A neat perk for wish families that Disney offers is, all of your park photos taken by the park photographers you usually by pass because it is too expensive, are given to you on the Disney photo pass for free. So, we have over 300 pics of this amazing trip and most of them we are all in it! That fact alone is priceless! I love love love having these pictures to remind us of our wonderful time together! Disney also has a Make A Wish lounge that is kind of hidden, but it is a plush Aladdin themed room with refreshments and comfortable places to relax in. Brookie took a break there with Daddy while Mom and the big girls road the rollercoasters. Disney made our family feel so loved, so special. Brookie was like a little celebrity and the girls were like royalty. We all had a great day of laughing, riding rides, meeting characters, getting autographs and trading pins, smiling and making memories. One of the best days we have ever had together.

Next day, next stop Epcot Center and Disney Hollywood Studios! We decided to combine these days because truly between Give Kids the World activities morning and night and theme parks during the day, we were having a hard time fitting all of the fun in! We could have stayed for 2 weeks there was so much to do. But we didn't, so we made it work and had a jam packed fun day! I would love to take the girls back to Epcot as they get older, they loved it but there is so much for older kids and teens to do plus it is educational. It was a fun morning here, we road a space ride, Nemo, ate yummy food from other countries, met the FROZEN characters (bypassing a 4 hour wait, crazy people!), road Soaring Over California and more. It was a lot of fun!

We then headed over to Disney Hollywood Studios which was a really neat place. Most of the time it felt like you were walking on a movie set. There was some fun things like The Great Movie Ride, a Bugs Life play area, Star Tours (we had our own private flight), the Tower of Terror (the girls made me go on while Ryan fed Brooke lunch and I almost lost my lunch), lots of characters and fun picture spots. There was a lot of more grown up things to do here so I definitely want to be back some day. Ps a special note to Sophia the First. She was so sweet to my girls, and especially tender with Brookie. It made me cry, silly I know, to see the excitement on Brooke's little face as Sophia approached her. At home Brooke has a pediatric stander she has to stand in several times a day to help her build muscle and strength. For a long time she would cry and cry as it is tiring and hard for her. But if we turn Sophia the First on the TV, she manages to work hard and stay strong. Now she has built up to watching a whole episode while in her stander! So seeing  Brooke get to meet her hero in person was so sweet. It made my mommy heart happy.



Later that night after Brooke was asleep, I took the big girls to Magic Kingdom for one last evening of rides and rollercoasters. Daddy was wiped out from our busy day and was happy to stay. It was our last piece of Disney on this wish trip and as we road back on a ferry boat and watched the castle glowing in the night it made me cry. It was seriously such a magical time, I will be ever grateful to Disney and all they do for Make A Wish families. It was an experience of a lifetime.
The following day was our last official play day, for the next day we were leaving back to AZ. It was bittersweet I admit. The girls played a lot at GKTW this day and we did head to Universal Studios. It was cool. Lots to do, lots my girls were not old enough or Mommy was not brave enough to do, ha! But it was fun! We did the awesome Spiderman ride, Harry Potterland, Jurassic Park World, Brookie loved Dr Suess land and then we were rained out. It was a big rainstorm, luckily we had umbrellas we had purchased at Sea World!
Any rate, we headed back to the resort and played there. We went to the spa, had dinner and swim time. It was not as crazy as our previous days had been but it was nice. Knowing we were going home was also a little sad. We have had such an amazing week!

Give Kids the World has so many finishing touches to make your child's wish experience special. One of my favorite parts of Brooke's trip was placing her personal star in the Castle of Dreams. Adorning the beautiful ceilings are over 100,000 stars.. each representing a wish child that has stayed at GKTW. Brookie received her own star with her name on it and is was placed with the other special stars. It was really special. I had a humbling thought, all of those children, some still living, and some gone home to be with God. All perfect, all having lived a difficult life. But the joy they brought each and every family made a mark on this world. Their impact is so far reaching. I see it in our Brookie. She is a shining light to all who know her. Placing that star was symbolic of her journey. It was priceless. My girls were also given hand made wish pillows that they still sleep with. Everything is so special and meaningful at GKTW!

The next morning it was time to pack up, our wonderful week was coming to a close. We were so grateful, so tired, and so full of joy remembering our out of this world week! We had to use an extra suitcase to fill it with all of the gifts, Disney loot and apparel, stuffed animals, etc. that the girls were spoiled with. It is insane how much they treat your family to. It just goes on and on! My personal favorite is a Give Kids the World Candyland game. So fun! We bought t-shirts, loaded the van and checked out. We thanked everyone a million times and it still did not feel like enough. Give Kids the World is truly the neatest place we have ever had the privilege of visiting. I hope someday to be back, to give back..
Before our plane departure we had around 6 hours to fill. The front desk at GKTW suggested we make a stop to Gatorland to kill some time. I admit I was skeptical, and oh it was a little redneck but it was actually pretty fun! We got a ton of silly pictures! It was a fun thing to do before heading to the airport.

I won't go in to detail about the plane ride home, journey back to real life. For admittedly it was bittersweet and sad. Something so magical had come to an end and the feelings and experiences we had there kept us in this protective bubble. We were there, for a week, having the time of our lives TOGETHER. I will always remember how I felt my love was magnified for Ryan and the girls on this trip. The distractions of everyday life just weren't there. It was a dream come true.
The trip in itself was obviously so great, but that was not my favorite part. The theme parks, rides, busy fun, all of that was not my favorite part either. My favorite part was that for the first time since Brookie was diagnosed we did not have to worry about it. We purposely stepped back from our crazy lives and just had fun together. No therapy or doctor's appointments that week, no work or school, just us. She did have a seizure at the beginning of our trip but she overcame and the rest of the week was bliss. Crazy, fun, happy, life changing bliss. I could have stayed forever.
But I know we can't. We are back now months later and the lingering effects of her Make A Wish trip are still here. We can look back and remember how we felt. We can feel thankful. We can be so ever grateful and we are. Thank you Make A Wish, Give Kids the World, Sea World Orlando, Universal Studios and of course Walt Disney World. You made the wish of one brave little girl, and her 2 big sisters come true. We will always cherish our time there and when our star has her turn to shine in heaven we will have this trip to look back on and smile about.
 ‘But wishes are only granted in fairy tales’
And we got to live one...- Brit