Saturday, April 28, 2012


Life is good, Ella is amazing. Everyday brings new words and facial expressions, new abilities as she discovers  more talents. Ella is getting so big, I see her everyday and if feels like she is bigger every time I see her.. Ella is 34 1/2 inches tall and weighs 25 lbs. she is 20 months. According to the old wives tale if you double a child's height when they turn 2 that is roughly the height they will be full grown. Ella still has 4 months to grow before she turns two and she is already nearly 3 ft.!! Oh my, I may have a 6ft. daughter some day :) She will be tall and beautiful! I am so grateful that she is growing so well, eating was a bit of a challenge in the beginning and still is from time to time, but over all she is doing fabulous. We purchased Ella's first medical alert bracelet. When I went online to order it, I felt sad that they had to make medical alert bracelets in a toddler size it didn't seem fair. When it came in I looked at it and didn't think it would fit it seemed so tiny, but it fit perfectly. It looks so small, it breaks my heart. It's not like I can ever forget about her heart defect, but something about having to wear a bracelet all the time feels like I'm branding her or something... like she is "tagged". It's hard to see it on her tiny yet chubby wrist. I am taking it slow, and easing her into wearing it. We are starting with wearing it when we go "out", not that we really go out much, but we like to take drives around town just to get out of the house sometimes and she would need it if we got in an accident. She doesn't like it anymore then I do, she will play with it, but if I try to put it on her wrist she cries. I have to remind myself that it doesn't define her just like her scars don't define her. I have to remember that even if their were no outward signs like blue fingers, toes, and lips, her heart would still not be whole and it would still be broken. This is life, it is going to be normal for us someday. At some point down the road maybe a tiny medical alert bracelet won't bring tears to my eyes and sadness in my heart,  maybe someday I'll be better at this whole heart mom thing. I have to try, to continue to not only except it but to embrace it. I have to be able to face it and not avoid it, other people in my life and in Ella's life will have the luxury of walking away if it is too overwhelming, they won't have to stay if they feel uncomfortable. Ella, Jon and I will never have one moment for the rest of our lives that this isn't in the forefront of our minds. I have to be strong because I want Ella to be strong. I want her to feel normal, I want her to see her medical alert bracelet and think of it as a safety device, nothing more. I want her to get excited to order a new fun color, not cry  that she has to wear one. I'm not going to pretend to know what she will feel, and I expect that she will have many many days that she feels sad, or angry, because of her limitations/daily medications etc. but I'm going to do everything in my power to help her approach life with the attitude that life is worth LIVING, that she has a second chance to live her life. I want more then anything for her to live without constant fear and feeling sorry for herself, I want her to know that she is STRONG. She has come so far and beaten so many odds, she is a fighter, a survivor! 


  1. This post is beautiful, Amy. Brought tears. I love how much you love your little girl. Ella is so blessed to have you for a mom!

  2. I am happy to hear she is doing so well. Sorry about the struggles over the bracelet. I am sure that would tug on any Mom's heart strings to need to order one. Hope she continues to do well.

  3. Long time reader, first time poster.

    My daughter is a fellow "heart baby" but she's turning 8 this year. She has worn a medic alert bracelet since she was 2 months old. We started it on her ankle and transitioned it onto her wrist.

    She refuses to go anywhere without it and it is on her 24/7. Funny story - we got her a fancy one when she was in preschool (the kind with the pink pearls) and she was wearing it all the time, as usual. Well, those aren't meant to be worn ALL THE TIME and it broke. She refused to get into the car to go home from school until I wrote on her hand "call (children's hospital)".

    It takes time and Ella will get used to it. Most people don't even see my daughter's bracelet unless they're looking for it.

  4. Ella WILL be strong because she has you for a mother, setting good examples and encouragement for her. And just a thought: What if you bought a bracelet similar to hers and wore it. Do you think she would be more fond of her bracelet, seeing that she would be just like mommy?

  5. I understand how you feel. My son has multiple food and drug allergies and has a medic alert necklace. He's 8, so it's something that he can slip inside his t-shirt when he feels uncomfortable about it, but for obvious safety reasons, a bracelet is much better for Ella. One day she will do better with it. Right now she doesn't understand and probably just wants the option to take it on and off herself, and is more frustrated that she can't.


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