Thank you for the taking the time to read my blog. This experience that I share with my child is one that I’d like for all to read to gain better insight into the life of a mother who helps fight for her child’s life.

This journey that I share with my child is full of ups and downs, highs and lows. There are moments when I want to find blame, be angry, think irrationally to help erase the pain I have from seeing my child suffer. But, as I stated in many of my posts, I believe this child was given to me for a reason, things that happen to him are meant to be, that despite the pain that I feel for him, I blame no one. He is a gift, a miracle, a life that has changed me and my husband for the better. I’ve said before, I would not change him for the world.

Sometimes, I blame myself because I’m his mother; he came from me, my body, my genes. I help created him. I carried him. Anything I ate or did affected him. So, it is difficult not to feel the guilt when I see my child suffering. It’s hard to detach myself from my child’s pain knowing that he came from me.

Obviously, my child would have died if I had decided not to have him undergo surgery. I’m an educated, 27 year old woman. I am raising 2 young boys, have had a career up to Justin’s birth, continue to educate myself about my son’s condition and treatment, learned much of the medical terminology related to his condition to the point where doctors and nurses think I’m in the medical field. Anyone who meets me will not take me for a fool. I make sure of it. So, given all this, believe me when I say, I know my son would have died if I had not given surgery a chance.

In my moments of weakness, I may think irrationality, a little crazy, even, like when I said,

“I thought, what if we hadn’t even gone through with the first surgery, would his heart have healed on its own? ”

But, if you would have read on, you would have found me also saying:

“Eventually, I got over my self loathing and pitying and opened up my eyes. Things really do happen for reason. I was meant to learn of his condition early on to allow myself time to get over the shock and mourning so that I could concentrate on his care after he was born.”

I even commended the doctor who had diagnosed my son in the first place:

“Truth is, the things happened. I found out of Justin’s heart condition without great effort at a routine ultrasound. I was led to an amazingly talented cardiologist who diagnosed Justin almost to the tee. I was allowed time to prepare–physically, mentally, emotionally. With those events occurring the way it did makes me believe that any other path was non-existent. Regardless of how Justin’s multiple heart defects came to be, his life on this earth with Loi and me was meant to be.”

I have met some of the most brilliant doctors and nurses during my journey that I cannot gush enough about. I am dedicating a future blog to them all. But, let’s face reality, not all doctors and nurses are made the same. The fact that they all have an M.D. after their names do not mean they all have the same knowledge, insight, compassion, understanding, and greatness. I choke up when I think of the brilliance (and I see lights surrounding this word as I type it) that my family and I have been surrounded by throughout this journey. I cannot stress how fortunate I feel to have Dr. Rebolledo (cardiologist who diagnosed my son in utero), Dr. Batra and Dr. Bar-Cohen (electrophysiologists who helped us in such a crucial time in Justin’s life…meaning life or death for him), Dr. Starnes (the surgeon who kept Justin on the bypass for only 30 minutes while performing the Glenn), Dr. Wells (the surgeon who assisted in Justin’s surgeries, but continued to make crucial decisions for the aftercare), Dr. Yu (pediatrician who knows more than any pediatrician should know)…the list goes on.

I will say this again: I am surrounded by greatness. And, never once have I blamed a doctor for my son’s condition or what has happened to him. My husband and I have come to a point in our journey where we KNOW these things will happen no matter how carefully we plan…it is just meant to be.

My experience with all the doctors and nurses and surgeons that I’ve met is that there are those who are more compassionate than others. There are those who recognize that my child is a person who feels pain regardless of whether he remembers it or not. There are those who are a little bit more willing to take the time to figure out why my child cries than just shoot narcotics through his IV to “make him feel comfortable.” There are those who are a little bit more experienced, careful, thoughtful than others.

You know what, I know these medical professionals are not out to deliberately harm my child, to make things worse for my child. But, you’re right, these physicians and nurses are not GOD, they do NOT have all the answers. And, their decisions for my son will always vary depending on what they each feel is best for my son from a medical standpoint, based on their own limited knowledge.

But, Justin is not their son, he’s mine. I will worry how that needle, that prick, the way they pick him up and talk to him will affect his psychological development. I will worry that they’re not giving him enough attention and forget about him or not know his medical history enough to make the best decisions for him because there are too many other patients under their care. I will worry if they actually care about my child’s well being or if he’s just another job that they’re making money off of.

Girl, this is reality. I’m no naive little one, let me tell you. If we were living in utopia, then these worries would not exist. But, I’ve talked to enough doctors and nurses, I’ve seen enough in action to know they do not all care for my child the way that my child deserves to be cared for because they’re just too busy, too inexperienced, or too caught up in their own ways to listen to what a mother’s got to say.

There’s so much to say. Being in the hospital and meeting with as many specialists as I have really has opened my eyes up to the health care system.

But, girl, thanks for wishing me luck. Truth is, we don’t need it because we believe in prayer. We believe in things happening for a reason. We believe that regardless of how much we plan there are things absolutely out of our control. Ultimately, it is up to the Great Physician how our Justin’s life will progress.

I hope that you will continue to join us in our journey to gain further insight and a little more compassion. Our Justin has given us so much, and we just want to share a little of what he’s given us with all of you. Our life with him is not perfect. But, he is a blessing. He’s taught me to love the little things in life. If you read my past posts, you’ll understand more…

Take care.

Hold onto hope and faith right now!

As always, your words are beautiful. Thanks for sharing your thoughts.