Dear mom:
The day I was born was such a happy day! As you held me in your arms, I heard you say that you never knew you could love someone as much as you already loved me. As the days went on, there was so much happiness all around us. It seemed as if I brought so much joy to everyone’s life…especially to you & dad, my cousins, grandma, auntie’s and uncle’s! As the months went on, you and daddy celebrated every milestone.
Then one day, after my first birthday, things started to change. The overwhelming love was still very present, but I saw the worry in your eyes as I struggled to develop the way everyone thought I was “supposed” to. Then after months of testing and evaluations, we all realized that it was going to take a little more work from all of us to get me to where I was “supposed” to be.
So, we found out that our journey would be a little different than we had planned for. I’m here to tell you that it’s OK, and there are a few things I need you to know as we begin this journey together.
Don’t be sad. I know this may not be the journey you had pictured in your mind, and it certainly is not the journey most are on. But it is our journey, and we are on it together. Please continue to see the positive, rather than focusing on the things I’m not doing. Sure, there are things I struggle with, but I have so many strengths and the key to my development will be identifying those strengths and building on them. If you think this is hard for you, imagine how hard it must be for me.
Be strong. No, it’s not going to be easy. I need you to search inside and find every ounce of strength that you have. This is not the time to fall apart. I need you to pull it together, hold your head up high, and come up with a plan! There is no time to feel sorry for yourself, blame yourself, live in denial, or think that we can just keep “coasting” along. The time is now. I need you to see this for what it is, and act on it. I know it seems scary right now, but together we can do this!
Fight for me. I cannot do this by myself and I need you now more than I ever will! As we walk down this road together, there will be many battles. I am counting on you to be informed, challenge & navigate the systems, get me the best care possible, and learn as much as you can about my challenges. Don’t wait. Go seek out all of the information that you possibly can and if there is a chance something could help me, please pursue it! Research all that you can find. You may have never planned on getting that “Google PHD”, but now you must. Talk to the doctor’s, therapists, professionals and other parents. Get not only first, but second & third opinions and don’t settle for less than the best!
Take care of yourself. There are so many people who love me and want to help…let them. Don’t be afraid to ask for help, you cannot take everything on alone. Find support systems, they will help you get through this. Exercise, get rest, and try to eat well. You will need all of the energy you can possibly get! Take the time out for yourself, and make sure you and dad go on dates. It is important!
Be patient. Success will not happen overnight and that’s ok. This is a process, possibly a very long process. I will do my best, but please remember I am only 2 and there are a lot of demands which have been put on me. Provide me with all of the tools I need, allow me to grow, but remember that I need to do this at my own pace. This is not an easy road, but the rewards are tremendous!
Be Pro-active! There are so many wonderful resources out there, and so many ways to access information. But please know that the information will not fall into your lap. You have got to go get it! Network everywhere, share our story whenever possible, and listen as other people tell their stories. Ask a lot of questions, you can learn something from everyone’s experience. Don’t wait for the professional’s to call you back after days have gone by, instead call them. Persistence is ok, as long as it is with a smile! That’s one of the great things about us mom, we are happy and try to always have a smile on our face!
Trust your instincts. You will realize that you are the professional when it comes to me. You will hear so many different opinions, sometimes it will be frustrating. Respectfully listen to the experts in each field, value their expertise & knowledge, but remember that ultimately no one knows me better than you do. I trust that you will do what is best for me; you need to trust yourself too!
Never, ever give up on me. Never stop believing in me, and I will continue to amaze you day after day! As you know, there are so many strengths that come along with my challenges. Please continue to recognize those strengths, know that I will never give up, and neither can you! No matter what or who I become, I will always be me ~ the same little person you fell in love with the day you brought me into this world!
I may not be able to tell you this yet, but I love you & dad so much. I appreciate everything that you are doing now, and this will determine the person I become later in life.
