The last 21 days have been very intense for our family. We lost Blake so quickly, I’m not ready to even speak about that yet, let alone put it out here. It’s been the longest 21 days of my life. It truly feels like forever. I miss her so much and it hurts so bad.

The day after we lost Blake, Jeff and I decided we would have a celebration of her life. We planned all kinds of things. With the help of our family, we were so pleased with how it turned out. We had tons of flowers, butterflies, minions (Blakey’s favorite) and yellow everywhere. There were so many pictures of her, all over the place. My Aunt, Dad, Mom and sister spoke. Then, Jeff spoke. I went last. I used to think things like that were for other people, but I realized Jeff and I both needed the opportunity to stand up and speak about our daughter.

My hope is I can use this venue (and possibly others) to keep talking about her. Just because she isn’t physically here anymore doesn’t change that she will forever be my daughter. I have a lot I want to write, eventually. For now I think I better just keep to myself, mostly. My mind is messy and I don’t think I’d be able to articulate all the things I want to say. I just don’t have the words. Instead, I thought I’d share what I said at Blake’s Celebration, along with some photos. I decided to share it here, because many of you have read along with us for the last 5 months.

A picture popped up on my computer the other day. I don’t remember searching for anything, but I looked down and it was perfect. It is the most accurate description of how I feel about my baby in the fewest words:

You are precious in every way,

The sunshine in my day;

The joy in my soul,

And the love of my life.

While thinking of this day, I realized most people get to count their life in years. I’m sure you’ve all heard the phrase, “He or She lived a long and happy life.” Blake was only physically with us for 328 days. Today would’ve been her 11 month birthday. I’d kill for a long life for her, literally. Her disease robbed us of the time we should’ve had. Long is not a word we can use when we describe Blake’s life.

A word I can use is “happy.” My daughter; my smiley, chatty, beautiful daughter did live a happy life. Whether it was watching Minions, over and over and over, or dancing to country music in the living room, she was smiling. She laughed when we tipped her upside down or her Daddy did his terrible dance moves. She loved absolutely everything about her big sister. Bath time, where she could escape the heavy weight of her broken body, was her favorite. She experienced the zoo, aquarium, the beach, so many times; camping, parks, the warmth of the sun almost daily and the freedom of a swimming pool. The taste of a million different foods; her favorites were licorice and bacon. Her Daddy sure is proud of that. She spent every single night of her life sleeping in my arms.

A couple of weeks ago, I was alone with Blake in my room. For a little while, I had a “Mama” feeling that our goodbye was coming soon. My head knew it, but my heart wouldn’t accept it. I looked at my precious daughter and I couldn’t help but burst into tears. I rarely cried in front of her, but I was overcome with love for her, gratitude for her presence and so much fear. Fear that she wouldn’t be ok, that she would be scared or hurt. She looked at me, right in my eyes- and laughed. She laughed! So, with tear filled eyes, I smiled back at her and told her how much being her Mama means to me. Then I bent over to kiss her cheek and she used all her strength to reach up and touch my face. Her muscles were weak but she was not. She was strong, so very strong. Much stronger than I could ever be. She reminded me, in that moment as she often did, that love is so much stronger than fear.

My heart is broken because I don’t get to hold her or watch her grow. I will never be the same without my youngest daughter here on earth. The hole, so deep inside of me, will never be filled. The pain I feel cannot be measured. I just brought my baby into this world and before her first birthday she had to leave. There is nothing right or fair about that. Yet I stand up here today, overflowing with gratitude that I got to have her. That I got nearly 11 beautiful months to care for, love and play with her. That she taught me more in her little life than I have ever known. Today and every day, when I see photos of my sweetheart, I smile. I am eternally grateful for the privilege of calling Blake Avery my daughter.

Blakey, you were and will always be our little sunshine. Your family will never stop being yours. I will always be your Mama, Daddy will always be yours and Kenley will forever be Big Sister. You are perfect. You are beautiful. You are so much more than we could ever have dreamed. You gave love, so pure and true. You’ve changed us in many incredible ways. You opened my heart and soul to a world I never knew. You deserved a body that didn’t fail you. My love, I am so sorry we couldn’t give that to you. We know that you are free now. You aren’t stuck in a body not good enough for you.

When you feel lonely, think of Mama giving you too many kisses, Daddy tickling you like crazy and Sister’s big snuggles. Remember what we talked about; even if we aren’t in the same place, we’re always together. We miss you and we love you so very much. Your Daddy and I promise to spend every day, for the rest of our lives, honoring you, my precious girl.

Blake spent her life using all her strength to shine, to shine brighter than any light I have ever seen. She smiled as often as her body allowed. She laughed as much as she could. She taught me that no matter the circumstances you can choose joy and absolutely nothing can stop you from loving with all your heart. 

Stop worrying. Be kind and compassionate. Make the time. Please make the time. Cherish all the little moments. Dance and sing. Do everything your body will you let you do. And just love. Love everyone you care about like it’s your last day together. The ones you love are the only thing that matters.

Please: Choose a life of joy and love for Blake.