When I first found out Alyssa had a severe heart defect, my second emotion was fear. My first was disbelief. How did this happen? To me? To her? What does this mean for our future? Where do we go from here?
How are you not fearful when your child is sick or dying? All I wanted to do was protect her, take the pain/ itching away, tell her it would be okay….tell myself it would be okay. This is not how life was supposed to go!!
That first day (Alyssa was nine hours old) when we found out there was a problem with our beautiful daughter, was the beginning of a long road for us. Fear was one of the many emotions I felt.
Fear can overtake you, paralyze you, blind you, suffocate you. I never stated my fears out loud (maybe once in awhile to my husband) but it lived in me every day…deep in the pit of my stomach. Hanging heavy on my heart.
When we were in the hospital, I was on “automatic mode.” I did what needed to be done to make sure Alyssa was as comfortable as possible. It wasn’t until I was alone or when everyone was asleep that I allowed myself to go “there.” To that place of fear.
It is amazing in a way how my body protected me. I couldn’t fathom that things could get worse. And I always believed that things would get better. I had to. This was my child! This was our life (lives)!
I was fearful most of the time when things were uncertain. And there is so much uncertainty. It would be so nice if I could always be in control. I wish life worked that way! Some fear is normal, but it is so important to have support. Someone you can cry with. Someone who will be there for you no matter what. No one knows what the future will be for any of us. Try not to think too far ahead.
Remember…take one day at a time, one moment at a time, one breath at a time. What we are all living is horror. It is important to do what you and your family need to keep going. It is so important to breathe!!!
There came a time, after Alyssa died, my husband and I went to talk to the neurosurgeon that did her last surgery. She had died in surgery and I had a list of questions two pages long. I was going to prove that this doctor “killed” her. After our meeting I walked away and realized that all of “this”….her surgery, her life, her sickness was out of my control. At that moment I had to surrender to the fact that a divine decision had been made and even though I didn’t like it, and I could kick and scream at the unfairness of it all, it was done. There was no turning back!
So, here I am 12 ½ years later. I am still standing. I am even…dare I say it?.. happy. I didn’t know my own strength and what I could survive until I came out the other side. I had to let go of a lot of fear and try and live each day and be grateful and know that I have been through the worst. And I survived!