I heard a song on the radio this week by Braid Paisley called, Letter to Me (click to hear). With Emma's D-Day (diagnosis day) approaching on March 25th, it made me start to think about what I wish I would have known then...compared to what I know now. So much was running through my mind and I thought it might be therapeutic for me to do this every year by writing a letter to remind me what I wished I would have know (good and bad). I also hope that by writing these letters it might reach someone who could use the info that I wished I would have known......
Dear Me.....
On March 24, 2015 your precious baby will start to have seizures at 4 days old. Don't be afraid....stay calm you don't want to scare Ava because she is adjusting too. When you get to Primary Children's Hospital they will admit her and run a million different tests. When they finally do an MRI you will receive the most devastating news in your whole life....your sweet baby girl may not live to see her first bday, she will never smile, walk, sit up, talk, or show any emotion. She will be severely developmentally delayed (stopping development between 3-5 months of age). When you are being told of her diagnosis of Lissencephaly be strong because Emma will write her own story she is going to move mountains. Her goals are just shifted and aren't the same as Ava's goal. Her milestones are now inch-stones and are going to be very hard for her to reach but she is going to be in Early Intervention soon and she will accept therapy and do a great job. When they ask you to consider quality of life and signing a DNR just breathe you will get through this. The Drs. that you have in your corner are absolutely amazing and will care for Emma as if she was their own child.
Birth to 2 years will be full of ups and downs, millions of heartbreaking moments, and decisions you will not want to make! However, there will be so many amazing moments...Emma will smile, she will laugh, she will sit up for about 1 min at a time. Emma will not only teach you so much in your life but she will teach the world. She will touch so many people and they will reach out to you showing their support. You will never be alone but you will feel alone at times but just remember you have so many people supporting and cheering you on.
Don't give up on medicaid and SSI they will fight you and say she is not complex enough (OMG can you believe that not complex enough). Anyways keep fighting show the world that they messed with the wrong mama bear and keep fighting for everything Emma deserves.
Be ready you are going to meet some of your best friends on this new journey, friends who will find you through social media and you will help each other more than you could have ever imagined. You will share so many inch-stones with them but you will also share so much heartache as illness can take over as well as death and you will cry as if you have lost your own child because you know at any moment that could be you. You may never meet these incredible people, but man are they your biggest support system and medical advice lifeline.
Be as open as you can with Ava, explain everything to her (except life expectancy because nothing is set in stone and no one knows everything). She is a smart little girl and she needs to understand that her sister is not "typical". She will want to attend every dr appt and thats ok she is in this "new normal" too. She hurts too and she is scared too. You will hear her whisper to Emma on occasion please don't ever die, this will shake you up because the one thing that you decided to keep away from Ava is Emma's life expectancy, but as I mentioned she is smart. You will grieve the fact that your two girls will not run together, play barbies together, have a tea party together....but let me tell you, they WILL it will just look different than you imagined and that's ok. Your two precious girls will be the best of friends and adore each other. Ava will be her biggest cheerleader and teacher.
Don't be afraid to start a blog, facebook page and instagram account because this will help not only you but others so much. This is the best way to help share knowledge about Emma and Lissencephaly. Be Emma's voice help her to share her journey to help create awareness about a diagnosis that is so very rare (1 in 100,000).
At 5 months Emma will start with a new seizure and it will be so devastating because it will be hard for you to find a med that works to get them stopped. But that is ok because it will lead you to the best decision that you guys will have to make....CBD oil. Yes! since she failed so many meds she will finally have the option to try it. It will be the best decision that you will make so far up to this point. Emma wont start to smile, or laugh, or excel in therapy until CBD oil is in her life. On a side note she will be seizure free for about a year on the oil. I wish I knew to never change your oil brand cause we will not see the same effects that we seen with Charolette's Web (this was a hard lesson).
In Oct. 2016 you will get the biggest gut feeling that Emma needs a swallow study and go with it you will save her life. Emma will get a G-Tube and I know it seems like a huge regression step but it's not I promise. It will also help later when you decide she needs to start the ketogenic diet in May of 2017.
Emma is a miracle, Emma's eye can tell you more than words could ever say. Emma will continue to surprise you everyday. Yes, you will cry everyday mourning the child that you thought you'd have but then she will get so close to rolling over you stop in your tracks and start cheering as loud as you can and forget the tears that were just flooding your eyes. Every time you see someone the same age as Emma you will get emotional but remember she wasn't suppose to develop passed 3-5 months of age. At her 2 year Evaluation with early intervention she will be at 4-5 months with her gross motor skills and at 11 months socially. She is progressing just at her own pace and all we can do is celebrate that because she is working harder than any "typical" kid her age. You are going to use words and medical vocabulary that you never knew existed, you are going to become a nurse, you are going to learn about epilepsy in a way you never imagined. Watching a child play will a toy you are going to breakdown every skill that was required for that to happen (you will find yourself doing this many times and laugh). You are going to change the way you look at the world and that's ok because it is going to make you a better person.
Embrace every moment you have with Emma and never regret any choices or decisions you make because getting stuck in that regret isn't good for anyone. Just move forward learn from it and know you are always making the decision you felt was right at that moment. You were given the best gift in the world by becoming the parent of two incredible and beautiful girls....EMBRACE IT!
Love: Me
Dear Me.....
On March 24, 2015 your precious baby will start to have seizures at 4 days old. Don't be afraid....stay calm you don't want to scare Ava because she is adjusting too. When you get to Primary Children's Hospital they will admit her and run a million different tests. When they finally do an MRI you will receive the most devastating news in your whole life....your sweet baby girl may not live to see her first bday, she will never smile, walk, sit up, talk, or show any emotion. She will be severely developmentally delayed (stopping development between 3-5 months of age). When you are being told of her diagnosis of Lissencephaly be strong because Emma will write her own story she is going to move mountains. Her goals are just shifted and aren't the same as Ava's goal. Her milestones are now inch-stones and are going to be very hard for her to reach but she is going to be in Early Intervention soon and she will accept therapy and do a great job. When they ask you to consider quality of life and signing a DNR just breathe you will get through this. The Drs. that you have in your corner are absolutely amazing and will care for Emma as if she was their own child.
Don't give up on medicaid and SSI they will fight you and say she is not complex enough (OMG can you believe that not complex enough). Anyways keep fighting show the world that they messed with the wrong mama bear and keep fighting for everything Emma deserves.Be ready you are going to meet some of your best friends on this new journey, friends who will find you through social media and you will help each other more than you could have ever imagined. You will share so many inch-stones with them but you will also share so much heartache as illness can take over as well as death and you will cry as if you have lost your own child because you know at any moment that could be you. You may never meet these incredible people, but man are they your biggest support system and medical advice lifeline.
Be as open as you can with Ava, explain everything to her (except life expectancy because nothing is set in stone and no one knows everything). She is a smart little girl and she needs to understand that her sister is not "typical". She will want to attend every dr appt and thats ok she is in this "new normal" too. She hurts too and she is scared too. You will hear her whisper to Emma on occasion please don't ever die, this will shake you up because the one thing that you decided to keep away from Ava is Emma's life expectancy, but as I mentioned she is smart. You will grieve the fact that your two girls will not run together, play barbies together, have a tea party together....but let me tell you, they WILL it will just look different than you imagined and that's ok. Your two precious girls will be the best of friends and adore each other. Ava will be her biggest cheerleader and teacher.Don't be afraid to start a blog, facebook page and instagram account because this will help not only you but others so much. This is the best way to help share knowledge about Emma and Lissencephaly. Be Emma's voice help her to share her journey to help create awareness about a diagnosis that is so very rare (1 in 100,000).
At 5 months Emma will start with a new seizure and it will be so devastating because it will be hard for you to find a med that works to get them stopped. But that is ok because it will lead you to the best decision that you guys will have to make....CBD oil. Yes! since she failed so many meds she will finally have the option to try it. It will be the best decision that you will make so far up to this point. Emma wont start to smile, or laugh, or excel in therapy until CBD oil is in her life. On a side note she will be seizure free for about a year on the oil. I wish I knew to never change your oil brand cause we will not see the same effects that we seen with Charolette's Web (this was a hard lesson).In Oct. 2016 you will get the biggest gut feeling that Emma needs a swallow study and go with it you will save her life. Emma will get a G-Tube and I know it seems like a huge regression step but it's not I promise. It will also help later when you decide she needs to start the ketogenic diet in May of 2017.
Emma is a miracle, Emma's eye can tell you more than words could ever say. Emma will continue to surprise you everyday. Yes, you will cry everyday mourning the child that you thought you'd have but then she will get so close to rolling over you stop in your tracks and start cheering as loud as you can and forget the tears that were just flooding your eyes. Every time you see someone the same age as Emma you will get emotional but remember she wasn't suppose to develop passed 3-5 months of age. At her 2 year Evaluation with early intervention she will be at 4-5 months with her gross motor skills and at 11 months socially. She is progressing just at her own pace and all we can do is celebrate that because she is working harder than any "typical" kid her age. You are going to use words and medical vocabulary that you never knew existed, you are going to become a nurse, you are going to learn about epilepsy in a way you never imagined. Watching a child play will a toy you are going to breakdown every skill that was required for that to happen (you will find yourself doing this many times and laugh). You are going to change the way you look at the world and that's ok because it is going to make you a better person.Embrace every moment you have with Emma and never regret any choices or decisions you make because getting stuck in that regret isn't good for anyone. Just move forward learn from it and know you are always making the decision you felt was right at that moment. You were given the best gift in the world by becoming the parent of two incredible and beautiful girls....EMBRACE IT!
Love: Me
