As a first-time Mom, I was all consumed with what I wanted my idea of motherhood to look like. I envisioned my “happy, healthy” family on vacation, playing in the backyard, cheering on my son or daughters school activities, as we all do when we find out we are having a child, especially first-time Moms.
But all those ideas quickly vanished the moment I found out my son was born with a congenital heart defect. I couldn’t get past the idea of him having open heart surgery at 6 months old or having a scar on his chest the rest of his life!
Until the “real” news came when we discovered he had Trisomy 21…Down Syndrome!
Wow, now that felt like a wrecking ball to the stomach! Down Syndrome!
Seriously, how does one prepare for being told your child will have a disability for the rest of their life? I was still dealing with the emotions from my son’s heart issues and all that would entail, now there is something else? Honestly, it was too much. He had tubes everywhere, and alarms going off every time you held him wrong. We were in crisis mode!
So happiness was not the first emotion that came over me. Scared was the immediate emotion that filled me. Making sure my son was going to live was the only priority for my husband and I at the time, as well as will I be able to care for this fragile baby when we leave this hospital?
But you know what? We did. We made it through hospital visits, NG tubes, surgeries, therapy appointments, nurse visits and ER visits!
Even now that he is 13 years old, healthy and thriving. Even though we get to enjoy family vacations, swimming in our pool, cheering on my son at Special Olympics swim meets or watching him sing at school chorus recitals like I envisioned our life is different!
“I am a different person now“.
I had different dreams before my son was born, of course!
I saw my friends staying up late at night, enjoying their drinks by the firepit, while their kids were running around in the front yard playing tag.
Now: I need to get my son home by a certain time or he will NEVER go to sleep!
Letting their kids go to the movies by themselves.
Now: My son is not ready to go to the movies without some adult present.
Going out to lunch by themselves.
Now: I take my son with a friend and sit at another table and watch closely.
So yes my life is different. Yes I lost myself and became someone new.
This new person is exhausted, frustrated, and overwhelmed!
This new person wishes she would just be able to get a full night sleep, or just be able to sleep in on a Saturday!
This new person wishes that things would come a little easier for her child!
But this new person is absolutely proud of him and loves him more then words can say, and would do anything and everything for him.
So no this wasn’t what I envisioned or planned, but I know this much… I wouldn’t change my life for the world! I have the best life with an amazing son, who loves me unconditionally! So….
So I am happy with my orange juice and all that comes with that! I may from time to time throw a few splashes of vodka in it, but at least that orange juice is mine, and I am super proud of it!
Life isn’t perfect, but there sure are some perfect moments in life, and it’s all up to you on how you want to enjoy them!