A phrase that cuts deeper than anything else, the phrase that I despise the MOST, "God has a bigger plan for Annabelle and we have to trust him."
Well.
My god also gave me a huge heart that swells with compassion, a brain that knows how to fight and intuition that guides my mothers instinct to protect my child. To tell me that my daughter is being tortured and suffering as part of a sacrifice for others and bigger picture - is insulting to all the powers I have as a mother to help her.
Those thoughts will never change.
Today. Annabelle is thriving for the first time in her life. She's growing, she's talking, she's laughing and eager to learn. We are enrolling her into school when we never thought we would. She begins gymnastics and dance class this week. We are planning her FORTH birthday when doctors weren't sure we would make it to her second. During a whirlwind of four short (felt like an eternity) years, our family has grown and learned so much.
We are fluent in most medical conversations.
We have visited more hospitals and universities than I ever believed.
Annabelle has shaped our family into the most humble, christian, selfless family we could ever become.
During the stormiest of days, weeks and even months, believe it or not - God was using Annabelle for a bigger purpose. Yes, now that the dust has settled, I can see it clearly.
Without the long journey Annabelle has taken us on, or the hundreds of procedures she has endured - we may have never been able to help her and make her as happy as she is today. Had it not been for all those sleepless nights, her doctors and I may have never found the right answers on the internet at 3:30am. Without every. single. freaking. slammed. door, we may have never been led thru the threshold of Cincinnati Children's Hospital where they are saving Annabelle.
Annabelle has made an impact on hundreds of people's lives. I cannot tell you the gratitude and joy that fills our hearts to hear each and every story that people share from Annabelle's inspiration. The ability to help other parents that may also be walking our similar frustrating path, is a gift that I never knew I could offer. To ease the pain, worry and frustration from another parents mind because I have been in their shoes is a priceless opportunity - one that Annabelle shaped FOR me. Annabelle is bringing awareness to a community that may have never heard of such diseases as hers. She is making new friends left and right and touching the hearts of people everywhere. Just recently we received a message from someone in Hawaii that reached out simply to say they were praying for us, although we have never met. Absolutely amazing. What a gift to touch so many - what a gift to show others what true courage, strength and love looks like thru the eyes of an almost 4-year old little girl.
I believe Annabelle is healing. I believe her body is recovering from years of battle where her body tried it's hardest to give up but she simply wouldn't stop fighting. I believe we have finally landed the right doctors and team that are placing Annabelle's best interest and quality of life into forefront and will continue to fight for her continued progress.
I do not believe we are out of the woods and I am not ignorant enough to think Annabelle will ever live a 'perfectly-normal' life by the textbook. She will always wear a feeding tube. She will forever be scared across her body from the multiple surgeries. Her GI system will forever remain frail and damaged from the disease. She will continue to undergo routine surgeries and biopsys every 16 weeks until who knows when.
But when it comes to our families definition of 'perfectly normal', we are just about as close as we could have ever prayed! With the right outfit, hairbows and attitude - on the right day she has enough strength - Annabelle just may pass you in the grocery store or local park and you may never look twice at her differences from others. THAT is our definition of normal. A day when no one else notices her differences. A day when she doesn't feel different from her peers.
My god also gave me a huge heart that swells with compassion, a brain that knows how to fight and intuition that guides my mothers instinct to protect my child. To tell me that my daughter is being tortured and suffering as part of a sacrifice for others and bigger picture - is insulting to all the powers I have as a mother to help her.
Those thoughts will never change.
Today. Annabelle is thriving for the first time in her life. She's growing, she's talking, she's laughing and eager to learn. We are enrolling her into school when we never thought we would. She begins gymnastics and dance class this week. We are planning her FORTH birthday when doctors weren't sure we would make it to her second. During a whirlwind of four short (felt like an eternity) years, our family has grown and learned so much.
We are fluent in most medical conversations.
We have visited more hospitals and universities than I ever believed.
Annabelle has shaped our family into the most humble, christian, selfless family we could ever become.
During the stormiest of days, weeks and even months, believe it or not - God was using Annabelle for a bigger purpose. Yes, now that the dust has settled, I can see it clearly.
Without the long journey Annabelle has taken us on, or the hundreds of procedures she has endured - we may have never been able to help her and make her as happy as she is today. Had it not been for all those sleepless nights, her doctors and I may have never found the right answers on the internet at 3:30am. Without every. single. freaking. slammed. door, we may have never been led thru the threshold of Cincinnati Children's Hospital where they are saving Annabelle.
Annabelle has made an impact on hundreds of people's lives. I cannot tell you the gratitude and joy that fills our hearts to hear each and every story that people share from Annabelle's inspiration. The ability to help other parents that may also be walking our similar frustrating path, is a gift that I never knew I could offer. To ease the pain, worry and frustration from another parents mind because I have been in their shoes is a priceless opportunity - one that Annabelle shaped FOR me. Annabelle is bringing awareness to a community that may have never heard of such diseases as hers. She is making new friends left and right and touching the hearts of people everywhere. Just recently we received a message from someone in Hawaii that reached out simply to say they were praying for us, although we have never met. Absolutely amazing. What a gift to touch so many - what a gift to show others what true courage, strength and love looks like thru the eyes of an almost 4-year old little girl.
I believe Annabelle is healing. I believe her body is recovering from years of battle where her body tried it's hardest to give up but she simply wouldn't stop fighting. I believe we have finally landed the right doctors and team that are placing Annabelle's best interest and quality of life into forefront and will continue to fight for her continued progress.
I do not believe we are out of the woods and I am not ignorant enough to think Annabelle will ever live a 'perfectly-normal' life by the textbook. She will always wear a feeding tube. She will forever be scared across her body from the multiple surgeries. Her GI system will forever remain frail and damaged from the disease. She will continue to undergo routine surgeries and biopsys every 16 weeks until who knows when.
But when it comes to our families definition of 'perfectly normal', we are just about as close as we could have ever prayed! With the right outfit, hairbows and attitude - on the right day she has enough strength - Annabelle just may pass you in the grocery store or local park and you may never look twice at her differences from others. THAT is our definition of normal. A day when no one else notices her differences. A day when she doesn't feel different from her peers.
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