It was two years ago that Ava took her last breath. It seemed to happen so fast. We found out her tumor had grown and two days later she was gone. There were signs that she wasn’t getting better. I don’t think we wanted to see them. She wasn’t eating or drinking. There was talk of a feeding tube. She couldn’t void her bladder. Her little body was shutting down. I was so angry at her body for failing her. It wasn’t supposed to grow a tumor that would kill her. It was supposed to be healthy.
I haven’t let myself feel all the emotions that come with Ava being gone. I’m trying to remember that’s okay. That my mind will allow me to feel what I can handle. I guess right now I can’t really handle much. It just hurts so much to know she isn’t here. I can say the words but I don’t really believe them. I still feel like I’m in a dream. It didn’t happen. I will wake up and she will hug and kiss me and everything will be okay.
She finally got the baby brother she wanted, only he won’t know just how awesome she was. He will have to hear from us about her instead of getting to know her himself. This is not how it should be but this is our life now. Forever thinking of how it would have been. What funny things would she be saying? Who would be her favorite characters? Would she be looking less like a little girl and more grown up? Would she still love puzzles? The questions are never ending and I don’t have any answers to them.
I do know that she loved us and she knew how much we loved her. I can take comfort in that.
While your child starts school today, we are thinking of a sweet girl who would have been starting 1st grade. Ava loved school! She would come home each day wilth her assignments and crafts and tell me all the fun things she got to do each day. One of her favorite things about school was picking out her outfits for the week. She really was such a fashionista! She had to wear a dress every.singe.day. and a pretty bow.
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| Ava and her friend Chloe. |
She had a special friendship with two of her classmates, a little girl and little boy. It was so sweet how she would talk about her friends so much and i can imagine all the classroom fun they had!
The first day of school is a very exciting and sometimes nerve wracking time. We would love for Ava to be experiencing her first day. Of course this is sombering for us. We miss Ava so much and know that there will be many "should of" milestones that we must face without her. Take the time today to think about how lucky you are that your child is growing and you get to experience firsts with them. You know we would give anything to do that.
"It kills you to see them grow up, but I guess it would kill you quicker if they didn't."- Barbara Kingsolver.
That statement sums up so much for me. I would give anything (I mean ANYTHING) to watch Ava grow up. Her childhood was stolen from me. There is no first day of kindergarten or learning how to ride a bike. She won't get to drive a car or go on a date. There is no walking her down the aisle or watching her become a mother.
I used to be that parent that got a little heartbroken as their child grew. As we continue on without Ava I see now just how lucky parents are that get to experience each milestone with their child. Do you really wish your child would stop growing? Think about that for a minute...
Ava stopped growing and she will always be five years old. No longer here on earth with us but in heaven.
Cherish each new phase with your child and don't be sad to watch them grow. Think about just how fortunate you are to have them with you.
Ava loved birthdays. Her social calendar seemed to be filled with lots of parties and she learned fast that birthdays meant presents and cake. She loved being the "special helper" and give her friends all their presents to open. She was always so interested in what they got and how neat their new toys were. I think her favorite part of the party was watching them open her gift. Her face would light up as they opened it and she would tell them all about their present. When her friends would have a birthday she was always very specific in what to give them and she could not be talked out of what she had set her mind on for their gift. I enjoyed watching her pick gifts for others! It was fun to see what she would choose.
Now if she loved other people's birthdays so much imagnie how she felt about her own! I think her favorite birthday was last year when she turned 5. We had been in Arizona for a few months and it just so happened that her break from treatment would fall on her birthday. We came back home to Texas and threw her a huge, and I mean HUGE party!! It was the first time we could invite everyone she knew and she was the star that day.
My favorite birthday was much more low key. Ava was turning 3 and I was pregnant with her sister (they had the same due date!). We started to think about what to do for her birthday. My due date was a week before her actual birthday and we didn't want to deal with the stress of a party during an unpredictable time. It turned out Myla was born exactly one week before Ava's birthday so just the four of us celebrated with her. We took her to a restaurant (her pick) and let her order anything on the desert menu. She got a "loaded" cookie. It must have been the size of her head and covered in ice cream and chocolate sauce. The look on her face was priceless!! She was so happy to get such a yummy treat all to herself.
I look back on these memories with happiness but I am so sad that we don't get to celebrate anymore birthdays with Ava. Today she would of been six years old. We are planning to have crab (one of her favorites) and cake, something we would do if she was here. Also, at sunset we will be releasing paper lanterns just like they do in Tangled. We think she would of liked that and I hope she can see them in heaven.
Not being able to celebrate Ava's birthday with her is very difficult. It has completely changed my view on birthdays. I used to get a little sad that my *babies* were growing older with each birthday but now it really is a celebration. I know how fleeting life can be. I never would of thought Ava would only get to have 5 birthdays here on earth. I can only imagine the party she is having in heaven today.
Not being able to celebrate Ava's birthday with her is very difficult. It has completely changed my view on birthdays. I used to get a little sad that my *babies* were growing older with each birthday but now it really is a celebration. I know how fleeting life can be. I never would of thought Ava would only get to have 5 birthdays here on earth. I can only imagine the party she is having in heaven today.
Myla doesn't understand. She knows her sister is gone. Taken without any warning to her. She tells us everyday how much she misses her "sissy" and asks if we miss her too. It isn't fair that Myla doesn't get to have her big sister anymore or that she may not even remember her. The photos and videos we have of the two of them may be all she has as she gets older.
I have put off finishing our 2012 photo album. At first because I didn't have the photos printed. Then I needed to find the perfect album. Then I didn't want to sort all the photos. I knew I didn't want to do it because there will never be another year of pictures I get to see Ava's beautiful smile or those big blue eyes. But I had to do it for Myla. She kept sitting at the computer watching the screen saver of Ava's pictures. Her only way of seeing her. I spent last Saturday putting each photo of Ava from the last year into the album. It was hard but therapeutic at the same time. I'm glad Myla now has a book full of memories.
So hard to believe it has been two months since I last held Ava. Her death is much more real to me now than it was right after she passed. Someone told me that our hearts only let us take in what we can handle and each day I've been able to take in more. I'm still distracting myself as best I can but she is never far from my mind and my heart.
Everything is still so hard. I break down when I see her pictures or when Myla says how much she misses her (which she tells me at least five times a day). Our home is now quiet when it was filled with Ava's laughter. I think that is the worst. Her giggle was so sweet and loud! I miss it and her so very much.
We have noticed signs she is sending us that she is still with us. It brings comfort right now that we desperately need. I had the most wonderful dream about her on Christmas. She was in heaven with long flowing hair surrounded by light. She told me she was okay and that she loved me. Then she told me I was the best mommy in the whole wide world! It was so sweet to hear that from her again.
And because I know you miss her smile too, here is a picture of her with her daddy.
Ava loved Disney World so much! Such a fun, magical place where she could be a princess, go on rides and meet her favorite characters. Since her make a wish trip in March she kept saying how she wanted to go back. Thanks to Wish Upon a Hero and her hospice team, we were able to take her.
Ava wasn't feel well during this trip. It was the beginning of her little body starting to shut down. We didn't know that and looking back it makes sense how tired she was and how she hardly ate. She didn't want to go on rides like last time but she did love meeting all the princesses. We got to have lunch at Cinderella's castle and I think that was the highlight of her trip. They announced each princess and Ava's face was so full of excitement!
We also got a chance to meet the singer LeAnn Rimes. She works with Wish Upon a Hero and helped us wish Ava's wish. They colored a picture and Ava sang to her! It was great!
We are very happy to have had the chance to take this trip with Ava. It was a wonderful way to spend her last days with us.
I have wanted to write since Ava's passing but I couldn't find the words. Many of you have asked how our family is doing. Our hearts hurt. They don't hurt every minute of the day but the pain lingers and rises when we don't expect it to.
Discovering a present Ava hid under her bed, doing laundry and finding her last bit of dirty clothes and looking at her photos all have caused me to cry and face the loss we all feel without her.
Her funeral was beautiful. We found the prettiest pink coffin for her and she was buried with all of her favorite stuffed animals. She was dressed in all white and her head was adorned with her prettiest princess crown.
Her daddy gave the euology. He said, ..."Ava lived her life for every moment and taught us to do the same. To enjoy the cuddles and quiet times just as much as the laughs and silly moments. Ava will be forever missed but never forgotten. Her shining light is now a part of everyone who knew her and we will always treasure that in our hearts." That is just what we will do.
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| Photos coursety of Morgan Kervin Photorgraphy |
I love pictures. I love to take them and to edit them and share them. There is something about a gorgeous photo that stops me in my tracks. A really beautiful photo has the ability to transport you and your emotions. I don't think I understand that more than I do now.
I look back at photos of Ava and I want to cry and laugh at the same time. Cry because most of them were taken at a time of pure innocence. No tumor in her brain. No threat of her leaving us. Just a happy, healthy child growing and playing.
Photos now mean something else. They aren't to capture how she is growing or what she looked like when she was five. They are to capture her in case she has to leave us. They are so we can remember every detail of her smile and every light in her eyes. Someday photographs may be all we have left.
Every single photo that has been taken of Ava over these last ten months has meant the world to me. Our family has been lucky enough to have some wonderful photographers capture Ava's spirit in ways we will treasure forever.
Some families going through this same situation need help in connecting with photographers that can give them the greatest gift, memories of their fighters. That is why I'm sharing The Gold Hope Project. Their mission is bring awareness to childhood cancer through photography and along the way families get those precious memories that will last a lifetime. If you know of a photographer or fighter that would like to apply to be a part of the project, please share it with them!
Ava's glitter photo shoot was the first one from the project and we are honored she is the ambassador for TGHP. Please spread the word about this wonderful charity that means so much to us!
To see all of Ava's glitter photos, click here.
Ava's glitter photo shoot was the first one from the project and we are honored she is the ambassador for TGHP. Please spread the word about this wonderful charity that means so much to us!
To see all of Ava's glitter photos, click here.
We've been doing Flashback Friday on Ava's facebook page and I wanted to bring this over to the blog too!
Ava was just over six months in this picture. I always smile when I look at her big ole grin in this one! Hope it makes you smile too!!
Ava was invited to her school last month for a very special lunch. She and the children from her class last year were reunited. Ava loved visiting with her school friends and them telling her all about kindergarten. The smile never left her face the whole time we were there!
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updates delivered to your inbox, be sure to sign up at the bottom of the
blog under "follow by email" or "like" Ava's facebook page.*
"Hope for Ava" bracelets are now available! The proceeds from these bracelets will go directly to the Dawson family and help Ava receive a Disney vacation of her dreams!
Last fall Ava and I had so much fun back to school shopping. She was starting to form an opinion on what clothes she liked (dresses) and what she didn't (anything that was not a dress). I took her to the mall and we went to one of our favorite stores. She walked in and started thumbing through the rows of clothes, pulling out all the pretty sweater dresses and matching leggings. After my hands were full of potential new outfits, we proceeded to the fitting room. This was a new experience for both Ava and myself. Up until a certain age, you can buy your child's size and not worry about how it will fit but Ava was not at that stage anymore. She had to try her clothes on, just like me! She tried on numerous dresses, commenting how pretty they were. I let her pick her favorites because its no fun to wear clothes you don't like and we left the store. I remember this shopping trip so well because it was the first time Ava and I really shopped together. It was such a fun day and I loved experiencing it with her.
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| Ava and her favorite dress from our trip. She would wear this red dress so much and always asked for me to wash it if it was dirty! |
Fast forward to this fall. The weather has started to cool off a tad and it made me think how Ava has no clothes for fall. She's outgrown most of her things, thanks to the extra weight gain from the steroids, and I knew it would be time to buy her some new clothes. Only this time I wasn't excited about it and neither was she. She told me to go without her and I was really bummed she didn't want to shop with me like last year. I proceeded to the same store and as I was picking out dresses, I got sad...very sad. Would she like the dresses I was picking? Would she gain more weight and then not fit into them like her summer clothes?
And then, the worst thought of all...would Ava be here a few months from now to wear these clothes? Each month my anxiety grows. When doctors tell you that your child is going to die within 9-12 months and it has been 10 months since that conversation, you wonder everyday if they will be here tomorrow or next week or next month. If your time might be up with them. I don't want to think about life without Ava but I do. Those thoughts are there and they don't go away. I can push them down, but then they come back up.
I still have hope for Ava and everyday she blesses us with her smiles and laughs. She continues to show no symptoms from her brain stem tumor but we don't know what the other tumors are doing right now (hopefully shrinking). Each day brings me joy and fear but ending the day with Ava in my arms is so comforting. I can only pray to end many, many more days like that.
*If you want blog updates delivered to your inbox, be sure to sign up at the bottom of the blog under "follow by email" or "like" Ava's facebook page.*
*If you want blog updates delivered to your inbox, be sure to sign up at the bottom of the blog under "follow by email" or "like" Ava's facebook page.*
Ava loved her glitter session by The Gold Hope Project so much! What girl wouldn't love playing with glitter? I hope you enjoy these pictures as much as Ava enjoyed taking them! You can also check out a video from her session here.
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updates delivered to your inbox, be sure to sign up at the bottom of the
blog under "follow by email" or "like" Ava's facebook page.*
We are holding a Be The Match bone marrow registry event in Killeen next week. If you have been wanting to register and are local, now is your chance!
Ava is not in need of marrow, but many other people are and haven't found their match yet on the donor list. You could help a family like ours and a child like Ava!
If you would like to register and can't attend, please visit their website. A kit can be mailed to you. A few swipes inside your cheek and you can be put on the list.
Hope to see a lot of you there!
Ava got to be a model for The Gold Hope Project. This is a video from her session and a few pictures. She was so giggly for Morgan and Julie. She just LOVED playing with the glitter! If you listen closely you'll hear her sing "The Booger Song" (this is right after she picks her nose...LOL). She learned this from Dr. Etzl and he sung it for her every time she asked. She was a sight to see and I'm so happy to share it with you!
I want to thank Morgan Kervin Photography and Jewels Avenue Photgraphy for all their hard work putting this together! I know we will cherish the pictures and video of this forever!!
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updates delivered to your inbox, be sure to sign up at the bottom of the
blog under "follow by email" or "like" Ava's facebook page.*
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It's finally cooling off here in Texas so we are able to enjoy our backyard again. Ava has always loved chalk and she got a huge laugh out of this chalk that looks like dessert. It was so nice to see her outside playing!
Overall she is doing great. She is trying to walk and can crawl again. We are planning a mini trip to an indoor waterpark next month. That was one place she wanted to go all summer but we weren't able to take her for various reasons. I know we will all enjoy a weekend of playing and splashing!
She finished her 10 days of radiation last week and one cycle of temodar. She handled it very well so we will discuss her starting another chemo cycle with her doctor. We will probably get a MRI in October to check the status of the tumors. Prayers that they shrink so she can move more freely!
I know I've said this before but we couldn't get through this without your help so I just wanted to thank you all for following us during this journey. It's not a path we would have picked but it makes it just a little bit easier knowing you are there for us. Thank you.
*If you want blog
updates delivered to your inbox, be sure to sign up at the bottom of the
blog under "follow by email" or "like" Ava's facebook page.*
Overall she is doing great. She is trying to walk and can crawl again. We are planning a mini trip to an indoor waterpark next month. That was one place she wanted to go all summer but we weren't able to take her for various reasons. I know we will all enjoy a weekend of playing and splashing!
She finished her 10 days of radiation last week and one cycle of temodar. She handled it very well so we will discuss her starting another chemo cycle with her doctor. We will probably get a MRI in October to check the status of the tumors. Prayers that they shrink so she can move more freely!
I know I've said this before but we couldn't get through this without your help so I just wanted to thank you all for following us during this journey. It's not a path we would have picked but it makes it just a little bit easier knowing you are there for us. Thank you.
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