07/24/2014 11:09 am ET Updated Dec 06, 2017

A Letter to Myself Two Years Ago

A letter to myself, pre-baby and pre-Tuberous Sclerosis Mom:

You have no clue what life has in store for you. Currently, your mind can only think of marriage, career, houses and where you will be going to dinner tonight. You think you love your husband right now, but you have no clue how much your definition of love will change. When your daughter is placed in his arms for the first time, not until then, will you know what true love is. Your love for him will be indescribable in that moment. It will intensify as you see him give his everything to you and your perfect, tiny, little baby.


After the new baby fog wears off, you will feel like you aren't doing a good job. Your heart will drop when she chokes while nursing. You will think you are doing it all wrong. You will cry the first time she has shots. You will feel like an inadequate mother when you feel like sleeping instead of rushing to her side when she wakes up every 30 minutes. You're a good mother and you're a tired mother as well. It's OK to be both.

You will be thrown a curve ball after five months of learning your new life as mother. Just as you think you're getting the hang of things, your life will take an unexpected turn. You will think life as you know it is ending... but this is not true. Hold on, you will make it, life is not over, your life is actually just beginning. A medical term will be thrown at you while doctors look at you with blank faces. The room will start to spin and your heart will feel as if it's being ripped out of your chest. Your first instinct will be to grab your daughter off that hospital bed and run far away. But you won't, you are much stronger than that. At the time you will not feel strong, but you are. Again, just hold on. Hold on tightly to your husband, your daughter and your faith. Those things will carry you through your new journey.


This journey will not end, it will forever be a part of your new life. I know this isn't the life you had wished for, but there will be things that come out of this journey that you could have never dreamed of. You will find a different, more powerful, more loving woman deep down inside. You will find a woman who has more determination than ever imaginable. You will learn big medical words and be able to throw them around like you have been in medical school. You will be able to administer meds to a fussy baby who is determined to spit them out everywhere. You will find the wisdom to make very hard decisions concerning the health of your child. You will open your heart to a new set of family members. You will not be related to them by blood, but you will be related to them through the joys, heartaches, fears and accomplishments that this disease brings.


I know all of this may seem like too much, or like an awful nightmare. But I promise you -- you can do this! You will learn so much about yourself through this journey. You will forever be growing into a woman of strength. Just hold on. Hold on tightly and don't give up when times get rough. Dig deep down and hold onto the love you have for your child and your husband. That will carry you through on the days of despair.

Hold on. Don't give up. Lean on your faith. Love like you never thought possible.

You've got this. This does not have you.