Princess Sophia

Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

Greeting cards or lack thereof

So my little one will be one year old (time flies!!) on Saturday. My mom and I were at the store choosing greeting cards for birthdays coming up for various family members and I think, hey, I should get a card for Sophia's birthday. I mean, don't we always give a card for someone's birthday, especially family, especially a child? Sounds reasonable, right? So now, I'm kinda excited about it. Choosing my very first card for my child. A milestone of sorts. I wander over to the kids section and find a few related to first birthdays--you know, the ones with a magnet attached, or paper crown to punch out, or sticker sheets. But those greetings are short and easy, nothing like the sentiment I have in mind. So I go to the other part, the section for daughters. Yes, this must be the spot. I see cards with long writing, poems even, and this is promising. I spot a cute one, with a little girl playing outside. Well now, Sophia will never play outside so that doesn't seem quite right. I put it back and open another. It tells of praise for a daughter growing so fast with parents so proud. Well, yes, this is how I feel. But, then it goes on to say that the pride is from the daughter making good choices. Sophia will never make choices, of any kind, good or bad. On to the next card. A daughter with years ahead of her and parents so excited to see what is in store. Um, no, this is certainly not the card for Sophia. Her future is one of uncertainty: when will her muscles tighten and stop working? When will she require oxygen? When will we know its time for the funeral plans? What to do when she has built up a tolerance to her pain and seizure medications?
Turns out, Hallmark has left a group out of its greeting card collection. Parents with dying children celebrating a birthday. A birthday much more special than all the rest because it may very well be the last. A birthday celebrated by a party that, while meticulously planned, will hold no meaning whatsoever to the child. A birthday party held for a sweet, innocent, precious little girl that in reality, is actually for her parents. Because her mommy dreamed of the day she would plan such an event. And now though circumstances have changed, her mommy refuses to let go of some dreams that she can still make happen. So there will be no greeting card. But there will be a party! And there will be a cake, presents, decorations. We will celebrate with family and friends because we have been blessed. An angel is here on Earth with us, for just a short time. A beautiful baby girl named Sophia Grace. She is the love of my life. She is my everything, my entire world. And even if Hallmark did remember to make cards for dying children celebrating their birthday, it would never be able to express my feelings for Sophia. There are no words big enough, strong enough, or meaningful enough to define this love. I celebrate Sophia's life every day, every hour, every minute. And for that, we do not need a greeting card.

26 comments:

  1. I think I see the card you’re searching for...it has a beautiful child in the arms of her "angel keeper" facing a glorious sunrise…the colors in the sky celebrate the day Sophie entered your world.

    It's blank inside because there are no words that one could print that could ever express the joy, the pain, the celebration of life, the anxiety of uncertainty…except for the “angel keepers” … and only they can fill in the blanks for their angel like none other could ever fathom.

    Keep your eyes on the sunrise, sweetie, everyday is a gift...you are a wonderful angel keeper!

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