Monday, February 15, 2010

Emily's First Valentine's Day

Emily celebrated her first Valentine's Day yesterday. It's one of my favorite holidays so I always made it special for Rachel and tried to do the same for Emily. She got a few presents from us, her grandparents, and aunts and uncles (just a little spoiled). But I think her favorite was going to the park to ride the train and feed the ducks. It's the most engaged she's been for all of it. We really enjoyed watching her have so much fun. She would've loved the swings and slides but our trip was cut short by the rain.

"Papa, where's the train?"

Tuesday, February 9, 2010

Emily, Cade & Callie Keep us Busy

These past couple of weeks I haven't written much about Emily. She is doing great and is keeping us very busy. The week that Rachel was in the hospital she was passed around from family member to family member. Michael and I managed to spend some time with her here and there but overall she wasn't able to be with us. She did spend some time at the hospital and got to see Rachel but I don't think it registered to her that it was Rach because she was sedated at the time. It's a blessing that Em doesn't know what's going on but I do wish she was going to be able to remember her sister from her own memories. We got a portrait of Rachel as a gift at the funeral and she will talk to it from time to time so we think she still recognizes her. I don't know how long she'll do that. She wanders around like she's lonely. She's been clingy and wants my attention all day.

She has been getting lots of cousin time which helps with the loneliness, for me too. We've been spending a lot of time with Cade & Callie and they help us so much. Callie has decided that I'm one of her favorite people so she always wants to talk to and be with "Mayme". I think she knows I need her!

For the most part, Emily is a happy 11 month who is content to run, play, and explore. This has been a huge blessing for us because it keeps us busy! She has decided that she can yell at us now. She yells in gibberish and waves her finger at us when she's trying to make a point. We try to teach her not to yell but mostly we just laugh at her because it's soo cute! :) She also loves to eat which is refreshing after having a kid with a feeding tube! I'm still trying to get used to just having a normal child and eating is still a constant worry so I'm glad she likes to do it.

Now that we just have Emily, it is a bigger adjustment than we thought it would be to just be "normal". I was used to at least 5 appointments a week and now we have none. Emily and I have to find random things to get done around town and at the house to occupy our time. I imagine it will get easier as time goes by. Emily should have been named Hope because she gives us so much of it. In a time when we're feeling pretty sad, she manages to keep us smiling and laughing all day long. What a gift from someone so small! I am thankful that we have her because she brightens our days.

Wednesday, February 3, 2010

Thank You

I would really like to thank everyone for all of their support over the past few weeks. The calls, facebook messages, food, texts, blog comments, flowers, and visits have meant more than you could know. We have felt such an outpouring of love, prayers, and support that have really helped lift us up. The donations have been pouring in for Rachel's fund and it is incredibly encouraging that someone so young could have such an impact! A lot of people who came through the line said to me that they didn't know what to say. There really isn't anything that I expected to hear but I do hope that Rachel will never be forgotten. After seeing the turnout at both the visitation and the funeral and also the cards coming in from all over, I know that she won't be! That makes me feel like even though she didn't have a long life, she was able to do what most people hope to accomplish in many decades- make a lasting impression.

I want to say some special thanks to everyone who helped with the services. I was very proud of our mothers because they were able to read tributes to Rachel at the rosary. By the way, many of you have asked for the name of the song we played. It was One More Day by Rocketclub. For those of you who haven't heard it, it will make you cry but it was too fitting not to play it. I'm so grateful that two of my aunts could come and do the readings for the funeral. My cousins Abby and Natalie also helped out at the funeral. You guys did great! K.P. and the lifeteen band did an outstanding job with the music and the service was more beautiful than I had hoped it would be. Fr. Tony wrote a touching homily and my great uncle Ed said the mass. Thanks Ed for all of your help, even the cleaning! We were surrounded by lots of loving family and friends who traveled from all over to come and be with us. Y'all will never know how much it meant that you could be there. We also felt lots of love and support from those of you who couldn't make it. Family is a great source of strength in times like these and your support helps us carry on with our heads held high.


This is the eulogy that my brother Travis read at the funeral. He did an awesome job and it meant a lot that he was able to get up and do it.

Eulogy for Rachel
For those of you who don’t know me, I am Rachel’s Uncle Travis. On behalf of our families I would like to share just a little bit about the Rachel we knew and loved. She was born on October 9, 2006 in Panama City, FL, the first granddaughter on both sides of the family. When she was just eight months old, her daddy was deployed to Iraq for 6 months. Rachel and her mommy became constant companions, and like all the girls in our family she learned to be a good shopper. She was content to just stroll around the mall for hours.
Rachel was also a daddy’s girl, and when he returned from Iraq it was like he had never left – there was no readjustment period. She became his Best Buy buddy. She could spot the sign from miles away, and would say “Buy Daddy.” She never passed up a chance to go shopping for a new movie. Watching movies, especially Bolt, and episodes of the Wiggles was her favorite thing to do. When she had days where she didn’t feel well, you could find her sitting in her daddy’s lap with her blanket watching TV. Her daddy also let her play the drums while he played Rock Band on the Playstation.
Rachel loved her grandparents. The first thing she requested when she visited her Papa Jost was “pop-pop” and since she had Papa just right where she wanted him, she would sit on his lap watching movies and eating popcorn for hours. GJ –as she called her Grandma Jost - became known as the “Granny Nanny” when she moved to Houston for six weeks to care for little Emily while Rachel underwent radiation treatments. When mommy got tough, G-J always came through.
Grandpa and Grandma Krug have a tree swing that she would spend hours on. “More wing,” was a phrase they heard so often that Grandpa would have to pretend the swing was broken. To which she would reply with confidence, “Bampa, fix it.” Gamma, as she called Grandma Krug, enjoyed reading to her since she was the only grandchild that would sit still long enough to finish a book. Rachel was able to meet one of her great-great grandmothers and she is survived by two great grandmothers and two great grandfathers.
Rachel also enjoyed visits from her aunts and uncles myself, Robyn, Anna, Shane, Tyler, Becky and Sony. It was often us who experienced her cuddly, sweet side. Rach wasn’t much of a cuddler but when she did, she would melt your heart. Her cousins Cade and Callie could always entertain her and she was fond of saying, “Cade naughty,” and “Cawie silly.” At thanksgiving I asked if she wanted to hold my baby, to which she replied yes with a nod. Not the reaction I expected, but she loved holding Bryson. When her sister, Emily, was born she realized she was going to have to share her mom and dad and that didn’t always go over very well. In recent months she had decided that Emily wasn’t so bad and they would play together. Rach was on her way to being a great big sister.
From the time she was a little baby she had a little stuffed animal we nicknamed “Sweetie” that had to go everywhere with her. Over the years she added a stuffed Hippo, a collection of lipsticks, a spoon and cup, a butterfly blanket, and a Hello Kitty purse. She didn’t carry around just one of these things; she carried them all and she knew if she dropped one. She loved play dough and riding in her wagon.
At the age of 14 months Rachel was diagnosed with a very rare and aggressive form of brain cancer. Her illness was discovered the day after Christmas, two years ago. The doctor’s initial response to Amy and Michael’s question of “how long do we have” was do you want days, months or years? I will always remember lying awake that night and many nights since. But God heard our prayers and he granted us the miracle of the last two years. The first time they reviewed her scans at MD Anderson, they asked if she could walk and were stunned by the little girl running around, giggling, and talking up a storm. At Santa Rosa they began to call her their “miracle girl.” She didn’t just survive, but she lived as a normal little girl. As it became clear that she was going to leave us, a parade of nurses, doctors, therapists, and other hospital staff came to her hospital room to say good-bye. It was amazing to witness the affect this little girl had on all those who cared for her.
Amy kept a blog of Rachel’s progress and many followed it – even people we will never meet. It is incredible to read how Rachel touched their lives with her feisty spirit and big smile. It comforts us to know that her doctors at Santa Rosa in San Antonio and MD Anderson in Houston will use her case and treatment plan to help other children who suffer from this same disease.
Rachel was blessed with the best parents in the world. They might not always have patience with each other, but they had endless patience with Rachel. When she would throw up, which she did multiple times a day, Amy and Michael would patiently change her clothes and get out the little green machine. Amy’s days revolved around Rachel’s clinic appointments and physical therapy sessions. They administered her chemo treatments, or "memo" as Rachel would call them, at home, and advocated the best care for their little girl. When they would drive past a Walgreens, she would say, “Need medcin mommy.” They also blessed her with a little sister when the thought of having a baby would be the last thing most people would take on during this time. You can see a bit of Rach in little Em. It’s because of Amy and Michael that Rachel experienced more in three years than most children experience in a lifetime. They have witnessed by their strong faith how to love unselfishly.
We want to thank the medical professionals, the church community of Sts. Peter and Paul, the community of New Braunfels, the United States Air Force and all of our friends and family for the prayers and expressions of support over the last two years. You will never know how much it has meant to us. Rachel taught us so much more than we taught her. She taught us how to live each day to its fullest, to enjoy just being together as family, to rely on our faith and the community in times of trial and suffering, to hope for a miracle, and to be thankful for the little things. As we say good-bye to Rachel today, she takes with her a piece of our hearts until we see her again someday in Heaven. She will be the little girl with the big smile, holding lots of stuff. We love you Rachel, and we always will.