Infant Loss & Grieving

“Sometimes Death Isn’t The Worst Thing”

healing / August 11, 2016 /

I went in for a follow up fetal echocardiogram  for my heart healthy rainbow last week. The conversation started with what happened to my angel, and the rest of the appointment was spent talking about Ryan (as all my specialty appointments usually do).

Today was my first time meeting this cardiologist in the practice- and I saw a little spark in his eye when I mention Ryan was diagnosed with complete Shone’s Syndrome. We spent the rest of the appointment taking about Shone’s and about Ryan. I feel like I have been searching for this doctor since the day I lost my son almost a year ago- someone to finally give me the answers I’ve so desperately been searching for.  Someone to answer all my questions that had been left to float around in the universe unanswered… because no one else knew.  This doctor KNEW!

He told me that Shone’s Syndrome is a miserable diagnosis and that there is no real effective treatment that “fixes” the heart.  The each surgery is a “let’s hope this works” kind of surgery, and that there is no end results of a healthy heart.  He told me that my baby would have suffered day after day, spent most of his life in the hospital, and would have had several other complications; he would have been in pain, and in the end (whenever the end was) after all the surgeries, medications, therapies, he wouldn’t have survived.  This diagnosis isn’t an “if”… but “when”.  So I had done my research.  I knew this was a nasty diagnosis, I could figure out on my own that there was no real life expectancy.  But a mother always has hope in her heart.

Finally he told me something that I had been feeling in my heart but never said out loud: “sometimes death is not the worst thing.”… for some reason in my heart I knew he was right; coming from him confirmed my feelings… My fear… 

I was ready to fight for Ryan, I was ready to be his warrior, his voice, his guardian. I was ready to give up my life to save his… But I could never have saved him from the pain- the physical pain, the mental pain, the emotional pain that comes along with being a medically fragile child.  The pain that breaks my heart just thinking about.

It will be one year since he has been gone on August 27 and I still cry several times a day… But I find comfort that my sweet sweet baby isn’t suffering.  That the Lord felt he was too perfect for earth… too perfect to have to suffer the terrible brokenness of his own heart.

I can breathe because Ryan does not suffer.