Annie’s daughter, Mikyla, has Rett Syndrome, a neurodevelopmental disorder that affects only girls. You can read more about what Rett Syndrome is here…. but, some of the more noticeable symptoms are loss of purposeful movement of the hands and the ability to speak. Mikyla’s parents, Robert and Annie, have worked tirelessly advocating for their daughter and other girls with Rett Syndrome, and created a non-profit that raises money to fund research to find a cure….. www.mikyla-cure.org. You can go there to learn more about Mikyla, about Rett, and to donate to help make the cure happen for these girls and their families.
You can see more images from my day with Annie and Mikyla here.
While I generally try to make sure that the length of the notes allow them to be read in the image, itself…every once in awhile, the words overflow. I get that. It is why I can’t use twitter. 140 characters? Pssh. Please. And I would never limit someone pouring their hearts into sharing their story, so I have transcribed Sarah’s note below. – melodee
My beautiful little girl – You will never know what you mean to me and daddy. You are what keeps me going in the morning. Your smile reminds me so much of your brother. I know he picked you for us and I know that every day he watches over you and protects you. He loves you just as much as daddy and I. I want you to know you have the world at your fingertips. You are so smart at 9 months and I know you will go sooo far and me and your dad will be there every step of the way, rooting you on! Never give up on your dreams and NEVER settle. You truly have blessed me. Thank you for letting me be your mom!
“I’ll love you forever, I’ll like you for always, forever and ever my baby you’ll be.”
Love, Mom
Dear God – I’ll never understand why you took my baby boy from me so soon. My heart is broken and my world was turned upside down. I miss my baby Kaden so badly every single day! I still love you and still believe, but it is so hard to accept that this is a part of your “plan”! What makes you think I am strong enough for this?? Thank you for Lexie, though. She makes my hard days a tad better!
My Loving Husband – Thank you for being my rock through this journey. I don’t know where I’d be without you. I want you to know that I don’t blame you for what happened and never will. You are an amazing father and husband. I look forward to continuing our life together! Thank you for everything. I love you forever and ever and a day, I PROMISE!!
My family – I can never thank you enough for your love and support. I know your hearts hurt too! I am so glad I can count on you all through thick and thin! We may be a tad crazy at times but at least we are crazy together!
My Bubba Man Kaden – I MISS YOU!! Thank you for blessing me with 9 months of absolute joy and love. Your spirit and memory will live on, in not only mine and daddy’s hearts, but in the hearts of the so many people that love you. Losing you was, by far, one of the worst things I have ever experienced, yet I have learned to live and love every day of my life to the fullest, to always be care fee and happy like you, because you never know when it could end. Thank you for teaching me how to be a mommy and for sending me your beautiful sister! I get up and keep going in the morning for the two of you. I want to make you proud of me! Please tell your Aunt Melissa and Uncle Steven that we love them and miss them, too! I can’t wait until the day that I can wrap my arms around you, kiss your adorable cheeks, and hear your giggle! Until that day, please watch over your dad and I, protect your sister, and send us all angel kisses. I love you more than life. *Bonk*
Never in my life did I expect this to happen to me. I was a 22 year old mother of one precious little boy named Kaden. He was born on Febuary 26th 2009. My husband Andrew and I had been married 5 months, He is in the U.S. Navy and he left two months prior on his first deployment. Andrew wasn’t home for Kadens birth, he first got word at 4 in the morning when my water broke via a very frantic text message to his email. We kept in contact throughout the day, until Kaden was born at 4 p.m. Andrew got to see his son for the first time on a computer screen. We got to talk for a few minutes and I continued to send him pictures. Andrew didn’t return home until Kaden was almost 5 months old. They met for the first time on a pier in San Diego on the 2nd of July 2009. Kaden & Andrew where just in love, Andrew made Kaden a build a bear monkey with a recording of his voice in it and I played it every day for Kaden so when Andrew returned home Kaden knew his voice instantly. We spent the next few months getting into the groove of being a family. Andrew was commuting from Hemet to San Diego every day for work but when he came home he would give Kaden his bath and put him to bed almost every night. We were blessed with 5 amazing months as a family. On December 12th 2009 our lives where turned upside down when we tragically lost our precious baby boy. Kaden & Andrew where at home playing on the bed together, when Kaden pushed against the screen to an open 2nd story window and fell. Andrew tried to catch him but couldn’t react fast enough. Kaden passed away a few hours later. Our whole family and closest friends (25+) people where with us in the waiting room that night. Our lives have been forever changed, Andrew and I have gone through many challenges, and a lot of pain in the past year and a half but are somehow continuing to work through our loss together as neither of us could imagine going through this without the other. Two months after we lost our first child, our beautiful little boy we learned that I was pregnant again. Lexie Ann was born on October 5th 2010. She looks a lot like her brother and even acts like him sometimes too. We are blessed to have two beautiful children and even though we will always miss kaden, and will always feel a missing piece in our hearts every day we try to continue on for him. We keep kadens memory alive for his sister, we tell her about him every day and show her pictures of him too. We never expected to go through such a loss, we never even realized that something like this could happen, but it can. We both hope that through our loss we can continue to grow as a family and help others who have lost their children & educate parents on window safety, since we have learned it isn’t always a concern many people think of. Kaden is very big part of our lives, the 9 months he was here he taught us a lot. He will always live in the hearts of those who loved him, his memory will never be forgotten. As my favorite saying goes, “Though he walks with the angels in heaven, He lives forever in our hearts!”
Hey everyone, Melodee here. There have been some changes, both in life, and with this project, that had me thinking that the project was coming to an end. Two days ago, the option was presented for me to continue with the project on my own, instead of seeing it end. I spent the rest of the night turning it over and over in my head. I love this project. I think it has real heart and purpose. But it wasn’t started on my own, and moving forward alone would not be the same. That was the emotional side of it. Aside from that, there was the practical….do I even have the time to continue this project, and give it the attention it deserves? Three in the morning, and my mind was still spinning. I do that. I wish I could pause my brain like I can pause the tv. That would be awesome.
Anyway, I woke up, and checked my email from my phone, as usual, and I had a message from someone, regarding Notes Girls Write. She wanted to talk to me about Jessica’s note about losing her daughter, Aliyah, at only 11 days old.
She said….
I was reading this particular note on the website and it just hit home. I had a child with that same condition and this is the first time I reach out to talk to another mother about it. Do you think she would be willing to talk about it or would it be too much to ask? If not, I understand and thank you again for taking the time to respond.
I responded, and she sent me another message, that said….
Thanks so much. She can just contact me through facebook if she would like. If not, please let her know that I am also very sorry for her loss. (Big HUG) I know that nothing can replace our precious little angels. I give her credit for being able to write her note.
My situation was a little different because I was young at the time and my family was so strict. I’ve never been able to talk about it freely. And just the thought of doing so brings tears to my eyes. It was just inspiring. Thought she should know.
When I wrote to Jessica about the message, she responded with…..
Thanks for forwarding the message. What a sweet lady. I have no problem talking about my daughter I mean, sometimes I get choked up but I love keeping her memory alive…only within the last couple years have I really opened up about it…and writing that note helped. Thank you for giving me that opportunity.
And just like that, it became a lot more clear what I should do. Olivia, your message came at the perfect time. Proving again what I have known since the beginning of this project……our words matter. Writing them out allows our experiences to affect others’ lives as well. I have gotten so many emails from people, mentioning specific notes, and how they affected them. I am not ready to let this project go.
With that said….it is now a one man show, so it may take me a bit longer to get back to you, and the marathon updates of a new note a day, are probably a thing of the past….but I am going to do my best. So, it is game on! I have several people lined up to photograph, and if you would like to share a note, or know anyone that would, contact me at notesgirlswrite@gmail.com.
I was hoping to find a nice video of Fred Astaire and Ginger Rogers performing this, but I didn’t find what I was looking for. The Diana Krall version works, too. Some of the lyrics, for those of you that are not familiar…..
Nothing’s impossible I have found, For when my chin is on the ground, I pick myself up, Dust myself off, Start All over again.
Don’t lose your confidence if you slip Be grateful for a pleasant trip, And pick yourself up, Dust yourself off, Start all over again.
Annie’s daughter, Mikyla, has Rett Syndrome, a neurodevelopmental disorder that affects only girls. You can read more about what Rett Syndrome is here…. but, some of the more noticeable symptoms are loss of purposeful movement of the hands and the ability to speak. Mikyla’s parents, Robert and Annie, have worked tirelessly advocating for their daughter and other girls with Rett Syndrome, and created a non-profit that raises money to fund research to find a cure….. www.mikyla-cure.org. You can go there to learn more about Mikyla, about Rett, and to donate to help make the cure happen for these girls and their families.
