Have you ever wished that you could go back in time and give yourself advice? I hope I'm not the only one anyway. In honor of Down syndrome awareness month, I have written a letter to myself in the year 2006 from myself in the year 2012.
Dear Evana in the year 2006,
Congratulations on the birth of your baby! I know you are feeling all sorts of emotions due to hormones, stress, and shock. You never expected to have a baby with Down syndrome at age 25, nor did you know it was even a possibility. Your emotions have you questioning lots of things. You wonder if your husband will stay with you (he will) and if Jaycee will live through all these challenges (she's still alive today). Due to the doctor's description of her, you wonder if Jaycee will even look like you or Jason. When she's a toddler, you'll find a mole on her head one day in a similar location to your own and it will change your life. Right now, you are under much stress so here is some advice.
The first thing you need to understand is that you will always, always have times when your emotions get the best of you. Right now, you believe that you haven't fully accepted Jaycee's diagnosis because things are bothering you. It will take you months before you realize that things are always going to come up that will cause you hurt or a sudden emotional reaction. The stares, comments, and cruel behavior aimed at Jaycee will always cause you pain. But, the good news is that the emotions do get less intense as time goes on.
The next thing I'm going to tell you is really important so fully digest this. Your first job is to love and nurture Jaycee, not to be her developmental specialist. You have a team of people who help care and treat Jaycee's medical conditions and delays. As part of their job, they will offer ideas on how to help her. Don't let it overwhelm you. You are her mother first and foremost. You are not her teacher, nurse, or therapist though at times you have to be all of these things. Because you are trained as a speech-language pathologist, your brain will want to automatically go into therapy mode with Jaycee. You will see areas that need worked on and you'll take it on yourself to do much of it. Whenever you get stressed about things you need to do for her or the skills you need to work on, stop and take a break. This shouldn't be your main focus as her mother because when things happen much later than expected, you blame yourself. Those times of limited success aren't your fault. Six years later you'll still be trying to convince yourself of that.
Finally, take time for yourself. Motherhood brings on much responsibility. Jaycee's heart condition and special needs have multiplied that more than you'd ever imagine. You feel an enormous amount of pressure waiting for Jaycee's first open heart surgery. I'm saying first because unfortunately there will be another one. Don't look at this first heart surgery as the endpoint of her medical problems. There will be many scares and problems coming up. You will give more of yourself than seems humanly possible. Because of that, you need to remember that you need to take care of yourself. Don't make your husband wait for months for a date night. Given your mental state most of the time, you should feel honored that he wants to spend time with you! Time away from your home responsibilities will re-energize you. Don't let yourself get so wore down before you finally submit to a break. Take them preventatively before a mental breakdown occurs.
Every time you get overwhelmed, get this letter out and reread it. Remember to laugh. Enjoy your life. Count each day as a blessing.
Sincerely, The 2012 Evana