Jessica

 

Jessica and Madi had a very special connection. When Jessica came on our Disney trip with us, they made fast friends. We all had a great time. By the time Jessica came back to visit just a few months later, Madi’s health had seriously declined. Madi could no longer articulate her words, she couldn’t walk, and sleeping was little more than an illusive dream. Jessica gave her all her medicines, helped her sleep at night, and miraculously understood everything she said. When Madi would wake up in the night, Jessica would rub her back and gently help her back to sleep. Jessica was amazing, and I think that a special and unique bond was formed through this service.

 

When Jessica got the call that Madi had passed away, it was very hard for her. She wrote a letter to Madi and has allowed me to share it here. Jessica also worked very hard on a dance solo that she dedicated to Madi.

Click here to see Jessica's dance solo.

Regarding her solo she wrote:

"Angie and Jay, I can't even explain in words the feeling I get when I do that dance for Madi. It feels like she is right there with me. The purple hair piece is my little piece of her I have to remind me why I love this routine so much. I dance for her now and she gives me strength. I couldn't have done it without her (especially with some injuries). Every time I perform that the pain goes away. She was incredible, and I only hope to continue to inspire others through her incredible story. Thanks for all of the compliments!! That dance doesn't even do it justice compared to everything she went through. But it is my way of coping with it all, and it's my way of connecting with her still."

I love you, Jess.

The Letter:

November 8, 2011 8:45 am 

Dear Madi, 

You passed away this morning at about 3a.m. You were a fighter. One thing I've learned through all of this is that we all have a purpose while we're here on earth. You definitely fulfilled your purpose here. You are now with Heavenly Father who missed you so much. He loves you without end and I know he loves me too. Death ends a life Madi, not a relationship. I know I will see you again. You have taught me so much about life and living for a purpose. I promise I will live a righteous life so I will be able to live with you again. My life is going to be different now. I will love more, dance harder, serve others, and live my life to the fullest because you taught me how precious life is. We can't take any of it for granted. I am so grateful for the time I got to spend with you. You are my little angel. I know that you aren't in pain anymore. I really think that is what brings peace to my heart. The cancer was too strong for your fragile body. But everything's okay now. After drill this morning I had a text from my dad saying, "Call me." I knew something was wrong so I called him immediately. He told me what happened and that you had passed away peacefully in your sleep. I had my team around me, comforting me. I couldn't go to school so I went home. Driving home I could literally feel your arms around me. I love you Madi. These passed few days have been pretty stormy and windy here. But, today everything feels calm. As I look out the window, there is so much peace in the way everything stands still. It is a beautiful morning. I can feel you sweet little spirit. 

The night before you passed I texted your mom and said, "Give her a kiss for me". My mom and dad had just told me that the doctors were going to take you off your medication and you would not have much time left. It was hard to hear but I knew deep down that this would be for the better. What makes your passing so comforting is knowing your aren't in pain anymore. You are in the loving arms of our Heavenly Father and you are completely at peace. Knowing that makes me at peace too. You're story has touched and inspired many lives. I will never forget the memories we made together. You will forever be apart of my life even though you are physically no longer here. Thank you for being such an example to me Madi. I know that when I pray and ask my Heavenly Father for blessings that it will be you who he sends down to help me. You are my guardian angel. 

I love you with all of my heart Madi.

Your cousin, 

Jessica

Christmas Card

Christmas Card and Letter

For those who did not receive our Christmas card I am including it here with the letter I sent out. The picture and card were done by my friend, the very talented Kim Ence with 1000 Words Photography. The picture was taken only 10 days before Madi passed and I am forever grateful to Kim for making that happen for us.

Douglas Christmas Letter 2011

Looking back through this year is a very difficult task. We started out the year with a wonderful and perfect little family and ended it just a bit broken. Madi, our three-year old, was diagnosed with DIPG, a rare terminal brain cancer. She passed away on November 8^th, less than 8 months after she was diagnosed and six weeks before Christmas.

For the first time in three years, Madi will not be with us for Christmas this year. She will miss fun times with friends and family. She will miss all the gift giving and Christmas morning presents. She will miss the carolers, Santa and Christmas specials. She will miss the spirit of love and charity that abounds this time of year. And she will miss a season of celebrating the birth of our Savior Jesus Christ.

 In looking back over those things that Madi will not be able to experience this Christmas season, we find comfort in knowing that Madi did not miss Christmas. She had Christmas all year long. She had friends and family make trips to see her, spend time with her, and keep her laughing and smiling. She certainly didn’t miss out on gift-giving. Presents came from family, from friends, and even from perfect strangers. They were delivered in person, by mail, or simply dropped off on our doorstep. Madi had more presents this year than could fit in Santa’s sleigh. Through the Make-a-Wish foundation, she got to sit on Santa’s lap at the “Give Kids the World” Village. Friends and classmates would visit her preschool and sing songs to her. And since one of her favorite movies was “The Nightmare Before Christmas”, she even got to watch Christmas specials. Madi had people all over the world showing her charity. They prayed and fasted for her, they brought her meals, did yard work, sent her on dream vacations, and donated or raised money for her. And we rejoiced in the birth of our Savior all year long. We talked about His life and the miracles He performed. We talked about His death and resurrection. We celebrated His message of hope and of eternal life and gave thanks for His atonement that makes it possible for our broken family to be whole again.

 This Christmas, our hearts are filled with gratitude. We give thanks to family, friends, coworkers, acquaintances and perfect strangers who made it possible. It was a wonder to watch the spirit of love and charity abound all year long. We are so blessed.

Our hope is that every year can be spent celebrating Christmas all year long. You have shown us how this is done, and we hope to pay it forward. May your hearts be filled with the Christmas spirit this season and throughout the New Year!

Christmas

Thank goodness for the Christmas season, with its hustle and bustle and messages of joy and hope. There are so many parties and so many things to get done that there isn’t time to be sad.  And all our stuff had to be done by the 18^th because we were spending Christmas in Utah this year. My parents and older brother moved to Utah a few years ago. Jay and I usually spend the holidays with the Douglas family because they are so close. It had been a few years since we had Christmas with my parents and even longer since we tried to get all the siblings together. I had asked the Hammond Family to do Christmas in Utah this year because I was afraid that it would be Madi’s last Christmas. Although Madi did not make it until Christmas, I was so happy to have my family together for the holidays.

We had such a good time. We went ice skating and played games. I was able to go through the temple with family members that I hadn’t been through with since my wedding. The Celestial Room at Mount Timpanogos Temple was filled with bright purple stained-glass squares on the windows and rainbows splashed all over the floor because of the crystal chandelier. It felt like Madi was saying a quick hello. We visited Temple Square to see the lights and had the fortune to run into Jay’s sister, Jolanta, who is serving her mission on Temple Square.

The highlight of the trip, however, had to be the impromptu Pajama Christmas Eve Talent Show. We had 30 minutes to prepare whatever we wanted. We ended up with a magic show, a juggling show, a hanky dance, a poetry reading, a line dance, a comedy routine, a hip hop dance, three songs sung, the guitar played, and a few piano pieces. I think we were all a little amazed at the amount of talent we summoned in 30 minutes. The night ended with a special tribute to Madi by Jessica who did an amazing piano piece written by her Uncle Rick.

Click here to see Jessica’s performance (starts at 1:48).

I found out later that my mom had written a poem for Madi. Not that reading her poem should have replaced her hanky dance, but should have been added to the talent night for sure.

I Thought I Would Go First

By

Toni Hammond

I thought I would go first

I didn’t want to say goodbye

Empty bed, empty chair,

Abandoned shoes, dresses and bows

Empty lap

I thought I would go first

I would greet her in white,

With open arms, showing the way

Now my little one will be in the light

That I will follow home.

I thought I would go first

These old creaking bones

This memory slow in coming

This body misshapen by this life -- used up

Hers is supple, beautiful, sweet, just three

Yes, she is stubborn, I’ll miss that most of all

Run by self determination

She would have it her way

This is not my way

I thought I would go first

I love my family and it was hard to leave them. We all made a pact that we would do our best to all end up in Atlanta.

Week Four

December 3^rd, 2011

After we got back from the cruise, we realized we had to get back to reality. We had to figure out how to live our new life, without Madi and hospitals and medicines. Our new life is so different. We only have two kids. We only have a few things to do each day and they are not life threatening. We only have boys.

I know lots of people with large families. Jay and I both come from large families. Most of them will tell you the same thing. Going from two to three children is the hardest. After that it really doesn’t matter how many you have. Well I can tell you that going from three children to two is the opposite. There is so little to do. At a time when I would like to be busy, my life seems so slow. I don’t have to worry about if Derek will wake up from his nap in time to pick Madi up from preschool. Trey (our kindergartener) is now in school all day and rides the bus home. After some craziness at school with the bus driver and a letter from our attorney, he can now get off the bus without me being there. So I don’t worry about him at all. Towards the end of her life, Madi was so needy. I am suddenly left with an eerily quiet house. I am sure Jay wonders why the house isn’t clean with dinner on the table when he comes home, but that was never a time issue as much as a motivation issue. But honestly the house is a little cleaner and dinner is on more often than before.

I used to pick up princess stuff, and tiaras, and plastic shoes, and nail polish. Now it’s balls, and swords, and Star Wars stuff. Now we are all boy. Don’t get me wrong. I love boys. I have always loved boys. When I was younger I wished I was a boy. I had two older brothers who I followed everywhere. I was such a tom boy. I would not let my mom put a dress on me. As I grew older, I had lots of friends that were boys. I loved how competitive they were with no drama. Trash talking didn’t hurt anyone’s feelings.  Even when I was getting married my guy friends asked if I was going to make them squeeze into a bridesmaid dress. I think they would have for me. They are awesome. I did not get married until I was 29, a tragedy to my religious community and my parents. In my twenties my parents worried that I would never get married. My mom once said to me, trying her best to help, “I think that the reason boys don’t like you (for the record, boys did like me and I had boyfriends, but if you are not married something must be wrong) is that they think they are gay when they are with you.” My mom says some funny things but this is my favorite. I know she just thought I could be a little more feminine. I dreamed of getting married and having all boys. In fact, I told many people that I wanted nine boys so I could have my own baseball team. When I didn’t get married at 21 like I thought I would, I decided to settle for a basketball team.

While these things are all true, it is a little slanted. I love my girlfriends and my sister. I have girlfriends that have been my best friends since elementary school and they are amazing. I don’t know what I would do without all my girls, girls’ night out, and girls’ weekends away. Y’all know I love you. And while I would’ve been happy with all boys, a few girls thrown in would be perfect. Actually, before I was pregnant with Madi I bought a blessing dress that I fell in love with. On the day of my sonogram when I was pregnant with Madi, I was hoping for a girl. I didn’t know I was getting a sonogram that day so Jay was not with me. The tech asked if I wanted to know the sex and when I said yes (only crazies wait until birth to find out ;)) she told me it was a girl. I cried tears of joy.

I decided that two people needed to know this news right away: Jay and Grandma Becky. Grandma Becky had two girls and then five straight boys. After about two boys, she was ready for a girl. In fact, each boy was called Molly until the day they were born. (Eventually she got a dog named Molly.) Then her first two grandchildren were boys. She thought it would never end. I went to the store and bought two huge balloons that said, “It’s a girl!” on them. I took one to Jay’s office and asked a secretary if she would deliver the balloon to his office while I waited around the corner. I had talked to Jay after my appointment but didn’t tell him I knew because I wanted to surprise him. The secretary delivered the balloon while I waited in the hall. Jay told her that she must be mistaken; that balloon could not be his. The secretary went white and did not know what to do. I busted in the office and said, “What do you mean it’s not yours?” We all had a good laugh about that one; well…maybe not the secretary. Then I delivered a second balloon to a very happy Grandma Becky.

After Madi was born, she made sure that I grew to love all things girl. She would not let me dress her in pants. She always wanted a skirt or dress. And it had to twirl. She would swish side to side and if it didn’t swing and rise up, it was not good enough. Satin and taffeta were better. She had to have her nails done, and she had to be FULLY accessorized before leaving the house: hair bow or tiara, ring, necklace, bracelet, watch, earrings, lip gloss. Half the time she looked like a dress up box attacked her, but what’s a loving mom to do? When I dressed Madi for her viewing, you better believe she had on a satin dress that twirled, a ring, a necklace, a tiara, earrings, a bracelet, lip gloss, and her nails were done.

After I got back from the cruise, we retrieved our boys (it’s “the boys” now instead of “the kids”) and went home. It was time to put all the girl stuff away. I have only boys. Everything girl reminds me of Madi. I sat on the couch reading and Jay wrestled with the boys on the floor. I watched them, so happy to have the boys and an awesome dad that plays with them, but yet so sad. I felt out numbered. I felt like somehow, some of the girl in me had died (there wasn’t a ton of it to begin with).



Notice the princess night light in the wall? I can't take it out.