What I write tonight is real and honest. It could be considered ungrateful and upset people, though I sincerely hope I will not. Especially those who have lost a child. Oh how my heart aches for those people and I hope and pray for them. I hope I can express myself adequately enough to explain my emotions.
I am not the same person as I was.
I feel like I am a better person in a lot of ways, but I also feel like I am different in ways that I don’t really like. Solemn comes to mind.
Ruby was born. Pure Joy. Ruby had a heart defect. Utter Sadness. Ruby needed surgery. Total Devastation. But people prayed. We prayed. We got through it and Ruby did as well, with flying colors. My relationship with my family, friends, and most importantly with Heavenly Father became so very wonderful and treasured and I needed each and every one of those people. I felt peace. I felt happiness. I cherished my family so much more than ever knowing that things could change so quickly in the “heart world”. There was a lot of joy, but there was also a lurking fear, always waiting to pounce in the quiet hours of night. Mostly when I was alone. The fear of losing her. The fear of how on earth we would handle that, how could my other three children live without their favorite person in the whole world. I emphasize the peace we felt so often because it was so real. It was so real. I could NEVER deny how blessed we were during Ruby’s first 6 months of life and how we are continually blessed.
I met other families going through similar situations. And then I heard story after story of tragic loss. So many triumphant and happy stories, but always, always ones of great sadness. The research I did was much the same. You run into hope, only to also run into tragedy. I allowed myself to imagine those places of sadness many, many times. I still do far too often.
Things worked out with Ruby. We are so so so blessed to have her. It is the greatest relief and we are soaking up our time with her. She is our sweet miracle and our family is closer because of it. It is so nice not to be worried when she cries for longer than a minute. So amazing she’s healed and rolling all over these days. So wonderful to hear my kids pray and thank Heavenly Father that Ruby is doing so well.
Then why do I often feel sad?
I have my baby. I have my miracle. We had an outpouring of love from so many people. Even strangers. Things worked out. We were blessed as much as we possibly could be. What on Earth could I be sad about? How ungrateful could I possibly get? What is my problem?!
Basically for 7 months, life was not normal. Weekly doctor visits. Echocardiograms, blood draws, EKG’s, weight checks. Is she gaining enough? Is she eating enough? Is she too sweaty? Is she turning blue? Don’t let her cry too long, she could have a blue spell and surgery moved up. Will she need medicines? Will she need oxygen before surgery? So many questions. So much “waiting it out”. When will surgery be? Will she only need one? Will she survive even one? I even went so far as to imagine some purchased item lasting through her surgery—for instance a large bag of flour or new makeup. Thinking, “If we lose her, I will still be using this after. And that will make me sad, using something that we had when she was alive.” I sound like I was a crazy person, don’t I? But apart from those fleeting moments of fear and sadness, I feel like we were so blessed to handle and enjoy life.
Why then, when life was so crazy and unpredictable, did I manage fine? Why was it that when I feared I would lose by baby, I could be strong and have faith that things would be ok no matter what the outcome?
Why do I get to keep my baby when someone else has empty arms ? My life is normal and blessed and full of wonderful things. It just doesn’t make sense. It seems backwards. How can I not constantly be shouting for joy at the outcome of our trial? Please know that I really am so overjoyed and immensely happy with Ruby’s outcome after surgery. It brings me to tears just thinking of how blessed we are to have her.
I brought up this subject on the private Facebook group of heart families tonight. I was so nervous to click “post”. So worried I would upset someone who has lost a baby. I was met with such love and understanding. So many of the moms felt similar emotions. Sad for no “good” reason. Many mentioned PTSD. Some mentioned survivor’s guilt. How thankful I am that I have those wonderful people who are so empathetic—and yes, even some who have lost their child responded so kindly and with understanding. Isn’t that one great thing about trials? To be able to help one another because you really do get it?
I think another problem of mine is that I thought after her surgery, if she didn’t have valve work done, that we would be free and clear. I didn’t even think about the worry I’d still have. My heart sank when I read recently that other long-term problems can happen with Tetralogy of Fallot even after repaired. I selectively chose to not remember that part when we very first met with the cardiologist, because my husband remembers them saying similar things and I do not.
It hit me so hard one night when I was talking to Dillon. I will always worry about her! She will hopefully be totally fine for the rest of her life and I’m sure we will continue to be blessed with peace. She might never need surgery again. She will see a cardiologist every year for the rest of her life. That way, if things change, they will catch it hopefully in time to treat it with medicine or heart caths rather than another open heart surgery. But what if she’s playing somewhere and falls far, and hard? They told us no contact sports or anything that could make a strong impact force. But then I hear that Shaun White was born with Tetralogy of Fallot, like Ruby, and look at him!! So hopeful. And really, I worry about all of my kids. Thinking so often of families longing for one of their children has really opened my eyes. So I need to just let go and trust Heavenly Father. Because life can change in an instant for anyone. Not just a baby with a CHD. So I need to remember to enjoy life and live it. With love and joy and yes, even the emotions I’d rather not feel because they will probably help me be a better person if I don’t let them paralyze me.
I guess my point is this: it’s hard to return to normal. It’s hard to go back to “normal” life, as silly as that may sound. There are demands and expectations that start right up where you left them. And they are in full swing around here. And though I am extremely happy that we are back to living normal, it’s interesting to adjust to it and I hate feeling sad when I feel I have no reason to be. Is it strange to say how happy I am and how sad I am, at the same time?