I worry, it’s his heart
I contemplated getting him to the hospital today, but called the cardiologist’s office instead, and waited to hear some news. I was pumping when my phone rang from across the room. I knew it was him. The sigh he gave before he asked how I was doing was an indicator of some not so good news. Although the comparative analysis shows that the echos looked relatively the same since October, the leaking valve seems to be leaking more so than before. His heart is working harder now. The combination of his malfunctioning heart and acid reflux is contributing to his disinterest and inability to feed. His lips are bluer. He’s paler. He has a cold that doesn’t seem to go away. These are all indicators that his heart is not working as it should.
“Time for the next stage,” he tells me.
My turn to sigh. A big one.
“Okay,” I agreed, “As long as we get this figured out for my baby.”
At this point, his “yeah” wasn’t so convincing. He’s probably unconvinced himself that the Glenn Procedure (second heart surgery) will alleviate Justin’s heart problems.
To deceive my pain of the unknown, to keep the tears from falling, I start a game plan. I start thinking logically. I ask him questions.
Q: What does it mean for Justin to have the surgery so early? Why is it ideal for him to be bigger to do so?
A: The surgery will not be more difficult than when performed on a bigger, older child. But, the recovery process will be more excruciating for him. Being so young, he’ll probably be on his back more, while most of the blood with be coming from the head; the circulation will not be as efficient. He’ll have more headaches.
Q: So, you’re suspicious that it’s his heart and not something else, like something in his GI tract.
A: It’s probably a combination of both. We’ll still set up an appointment with the GI doctor.
But, I know it’s his heart. I know he knows it’s his heart.
Our conversation ends with making an appointment to meet on Monday to plan the (dreaded) next stage. My mask comes off. I’m suffocating, I need to cry. But, I have to tell Loi first. Mask goes back on. I don’t want him to feel like he needs to console me. He’s worried, too. He tries to comfort me anyway, telling me to pray that it’s not anything worse. I’m silent. Justin rustles. He’s hungry, but nibbles only an ounce. I hang up. My favorite aunt calls (perfect timing). “How are you?” she cheerily asks. Silence. Choking. “Are you ok?”
Will I ever be ok? I stared into his angelic face while holding his tiny hand, rubbing it, like it’s the last day I’ll ever get to touch him. Because I don’t know anymore.
This morning, I thought of how I wanted to throw every thing away. Things just complicate life. I was wasting time. Cleaning. My children needed affirmation that their beings were appreciated by Mommy. Justin needed to be held. Nathan needed a playmate. Couldn’t they understand that I clean because I love them? that I can’t stand that they live in a mess? It’s like a never ending battle–the laundry, the toys, the stuff.
I thought of how I just wanted to run away, just leave, to another place where my children were healthy. Where, there’s no such thing as a heart defect. Where, Justin miraculously recovers and doesn’t need the following surgeries. Where, there are no worries.
I thought of how I just want Justin to be happy. That’s all I want. Is he happy? I’m constantly pushing a bottle in his mouth. He arches in pain. His face scrunches in discomfort. He cries and I make him cry even more. He doesn’t want his medication, but I force him to take it, apologizing the entire time. He just wants to be held, comforted, loved. What am I doing to him? Does he trust that I love him? Will he/does he have trust issues?
I thought of what Nathan thinks when I tell him I can’t play with him because I’m cleaning bottles and picking up his toys and putting away the laundry. When, I’m feeding Justin, and he asks me to play with him instead, and I tell him I can’t. Does he know how much I love him? How much my heart aches because I have to share my time between him and Justin?
This Christmas, my wishes are simple. So simple. I want both my babies, alive and well, with me and Loi. At home. Not in the hospital or anywhere else. At home. I want to give them their presents, have them open it. I want to kiss them and hold them. Is this too much to ask?
I thought that when the time comes, I’d be ready. Everyone tells me it gets easier. It hasn’t. Right now, I feel like the first day we heard news of Justin’s heart defect. It’s all starting again–the crying, the planning, the disbelief. But, this time, it’s even more difficult. He’s now a person that I’ve gotten a chance to get to know in the past 4 months. He’s had conversations with me, smiled, and hugged me. His eyes, his mesmerizing eyes I waited weeks to see, I do not want to see closed again. Our time together has been too long and short at the same time. I’m not ready. I don’t want to let go again…but I know I must. I have no choice. So helpless all over again.
I know many of you have in the past or continue to go through difficult times with your loved ones. Our circumstances may be different, but the thought of losing a loved one is just so devastating to the soul. Help me. Please give me some inspiration that a better day is around the corner. I’m blind sighted and can only see today and the end, the only two certainties in life. I just need some hope even if the inevitable is true. Because I don’t want to cry. My babies need me (but, how I need them more!). As much as it hurts, I smile. I laugh. I make them smile and laugh. Because life’s too short.
Let us be happy…even if it is just for today.
December 7th, 2007 at 12:07 pm
I’ve never faced anything like you are going through. I don’t know what my limited experience can offer. But I have lost several people I have loved, I have nursed a cat I loved immensely as she died of cancer, and I sat in the intensive care unit for most of two months trying to will my dad back into health, so I do know a little bit of the pain and fear of loss.
I remember the day I gave up on my Dad. The doctors told us he wouldn’t live until morning. His kidneys were not functioning, he could not breathe on his own, his pancreas had turned on him and was literally digesting itself. I was utterly and completely helpless, and there was nothing I could do about it. I had been the one there, reading everything I could, learning everything I could, arranging for a room with a window so that he wouldn’t be disoriented by the constant light, talking to every doctor and specialist, pleading his case before the medical staff and God. At this moment, though, I wasn’t by his bedside. I was in the waiting room watching all of the relatives I hadn’t seen in years file wearily file into the room. It was like he was already gone… it was too painful to think that that moment had come.
Thing is, the truth about my dad was bigger than me, and it was greater than what I felt I could handle and what I could control. It was bigger than the doctors. The truth was that God was not done with him yet. He didn’t die that night. He didn’t die in either of the subsequent hospitalizations — not even in emergency surgery to stop the internal bleeding from an exposed artery that once again threatened his life a few weeks later.
That morning after dad pulled through, we talked to the ICU doctor. He was an amazing physician, and what he had done to save my father’s life was nothing short of perfect, but even he looked puzzled. He acknowledged that medicine wasn’t entirely responsible for my Dad’s recovery. Ultimately, Dad was in the hands of the Great Physician.
I had other really dark moments over the next several weeks. It was depressing to hand “fireworks” I made from metallic pipe cleaners from the hardware over his bed in the ICU on the 4th of July. Another time I got lost in the parking lot looking for my car and wandered in tears for 30 minutes before a man with a cart found me and drove me slowly around until I could find it. I was empty. I had nothing to give.
On one of those dark days, a woman came to me in the corridor of the ICU. She was with her partner, who assured me that she had an uncanny knack for something like prophecy. She looked at me and told me, “Your dad is going to walk out of here.” I wanted so much to believe her. I didn’t know how. But that didn’t matter. It wasn’t up to me and my faith. In the end, she was right.
When I needed them most, God brought people into my life to tell me what I needed to hear. He brought the hugs, the hope, and the strength I needed to stay there another day, doing what I needed to do.
I’ve never had the gift of prophecy, so I can’t pretend to know the future, but I do know that the God of the present is holding your precious family in His gentle hands, and he won’t let go.
December 7th, 2007 at 1:31 pm
Thank you, Nikki so much for sharing. You’re right–we cannot predict what is to happen to our little Justin. Even with the best medical technology and physicians to his advantage, only He will determine when it is time for him to go. I’ve stopped asking what if already. I’ve decided to stop myself from asking the cardiologist what to expect anymore. Every child, every person is different. No matter how well I think I’ve got it figured out, I never do. I’m surrendering all this into the hands of the “Great Physician”. There really is nothing I can do. I pray for my son to get better, but more importantly, I pray for his strength, to get through the trials that He will put him through…and for great reason. Justin is not mine to keep, I’ve realized that. His very being and presence has made such great impact, and even if he were to go, he’s served greater purpose than I ever have. But, I will not wallow in this pain of the end anymore because it is so unproductive. We’re all still living, and we must make the best of it, just as you did by hanging those fireworks over your dad’s bed.
Again, thank you for sharing. Now, I don’t feel so alone and hopeless. And, thank you for bringing into light that reason does not prevail over faith. Even that doctor could not explain your dad’s miraculous recovery.
Faith–sometimes, that’s all we need.
Thank You,
Jen
December 7th, 2007 at 7:56 pm
Jennifer
God never puts more on us than we can physically handle. We wonder at times how we can do it, but we manage. In January I lost my mother to small cell lung cancer. For 9 long months I watched her slowly and painfully slip away from me and there wasn’t anything I could do to stop it. Every chemo cycle became harder to overcome yet she chose to continue. I never left her side and at times I wondered if I could continue yet I did.
In September my mother-in-law had a stroke and 7 days later broke her hip in 3 places. She never came out of the anesthesia where she could carry on a conversation. Within 5 days she was on a feeding tube. Three weeks later she was in a permanent vegetative state. 24 hours a day, 7 days a week, either Bob or myself had to be by her side. First my mother and now my mother-in-law? WHY? Our faith was shattered yet we continued. God will not put more on you than you can physically handle.
You and Loi are special parents who have been given a special child. Justin is a gift from God. When you look into his eyes you will see those brighter days. When he squeezes your hand or smiles at you, THAT is your hope.
December 8th, 2007 at 4:30 pm
Thanks Gwen and Bob. I do agree that we are never given more than we can handle. So many people have wondered how we’ve been able to deal with Justin and his health condition, and just like you and your husband with your mothers, we just deal with it. When the time comes, we just have to deal with it. These are helpless little beings, my sons, and I can’t just turn away, no matter how much I just want to crawl into a hole, sometimes. Some people say we’re strong. But, really, it’s just commitment and obligation…and of course love–lots of it. Thanks again for sharing.
December 11th, 2007 at 10:16 am
I just read the above post, and I still can’t imagine what you guys are going through. Justin and your family are in my prayers. I have faith this will work out in the end, and that Justin and Nathan know you love them both. I’m not even religious, but you got me praying over here!