Holding my sweet Gabe.

As I sat today, holding my son, I couldn't help but feel an immense amount of pain.

The hard part about weaning off of the medication for anti-depressants... is that I can once again feel things deeply... But it is also the most beautiful part.

For the past months, I've been in a fog- able to avoid the painful feeling when I think of the moments that I have been missing out on with Gabe in the hospital. But now that the drugs are out of my system, nearly entirely- there is no covering up what I should have been dealing with this whole time.

I hold my son in my arms. His body is stiff, limp, but warm. His hair has been washed today, something that he hasn't had done often enough since his surgery two months ago. His eyes are partially open, but there is no life in them, they stare forward into his eyelids and a thick goop of eye protectant is in them to keep them from being dry, or worse yet, getting infected.

I hold his hand in mine, kissing his tiny fingers which are no longer swollen and finally resemble the little fingers I have held so many times in mine. There are two bumps of dried blood on his hand from where he has had attempted IV's. I turn his hand over to inspect the other side, as I always do, and see a painful looking bruise with skin that is slightly torn. I immediately ask why this is there, but of course I know it's from another line that had gone bad. His body has lost most of the fluid that he had retained once, but his body is one giant bruise still, from the EPI he had administered a few days ago when he nearly crashed again. EPI is a powerful drug, but it is also difficult on the tissue. His chest and arms are covered in a bruise, and worse yet they are hard.

Hard like his cheeks have been for the past weeks. It's called a blood bruise, and it's almost all over his entire body... It feels like the bone has expanded through the tissue, like he is solid... It feels painful. I know he doesn't feel pain, he is so sedated and paralyzed that there is no way he could, but I remember what this bruise is like. Nicholas had a bruise on his knee similar to this that lasted almost a year. Blood bruises are terrible.

I stroke his hair over and over and whisper in his ear how much love him. I don't want to cry, I hate crying in front of anyone, but especially medical people who feel the need to reassure you- or to avoid you entirely.

But the tears flow out silently. I feel so helpless, as I have for much of this journey. They fall all over my arms and I can't stop them. I try to sniff them back, to stop myself, but I am also so glad that I remember... I remember finally how much I truly do miss him. And that is a blessing for me.

I lean down and put my forehead against Gabe's tiny forehead and tears continue, so I start to sing to him the song I have sang often to both of my boys. "Oh, how He loves us, oh, how He loves us... How He loves us, oh..." And sniffle some more.

I hope that Gabe can somehow feel me here. That he still wants to fight for life.. for us. But I can't help but wonder if he will make it out of the next surgery. He doesn't look ready for a surgery. He doesn't look ready for much of anything, really.. But I know it is his only chance to wake up again. And win or lose, it needs to happen.

Dr. Marx comes in and reassures me. "I am so sorry, I talked to Nick about the bi-ventricular repair, but his ventricle just hasn't grown as much as it appeared to have before. We are going to fix him up and get him on track." I nod, but avoid his eyes because I hate the idea that my eye makeup is scattered down my face- even though I've managed to suppress the tears. "It's been too long." He says. This chokes me up and I have to force the tears back down.

"He turned 9 months old a couple of days ago, you know. We brought him in when he was seven- (choke back another tear)- months old." He pats me gently on the back.

"We will get him on track." He says.

"I hope so." I say.

It's hard to say anything, really, because the reality is that all I want to do is to scoop Gabe up and lay him on my chest like I always have before this. To hold him close to me, and to sing to him. To rock him, to bounce him. Anything he wanted, I would do.

I talk to the nurse for quite a while after this, telling her all about Gabe, as my memories are no longer fuzzy but clear and fresh. I lay my hand on his heart and feel it beating.

"He just beams at Judah, every time he looks at him." I say. "He stares at us, almost like he is concentrating on something important, but Judah makes him grin... The sweetest grin I have ever seen." I say. And it's true.

Judah's grin is so beautiful, contagious. But Gabe's grin (and I will deny I ever said this or posted it) is lifechanging. It is so beautiful and sweet- like the taste of freshly plucked honeysuckles. Gabe's grin, is enchanting.

And tears roll down my cheeks again.

What I would give for one of those grins. Or even for him to look at me, with his sparkly grey eyes.

Though the pain is sharper, the memories are too. And I love that part of this medicine wean.

Tomorrow is terrifying, but so hopeful. I know that God has Gabe in the palm of his hands, but I would like it very much if God wouldn't mind letting me hold onto Gabe for him for a while.

Gabe, a little touch of heaven in our earth.

I brush his hair back and kiss his forehead. I wish I could rock him, but the amount of tubes and hoses and IV's attached to him makes it very much impossible. So I just put my hand on his heart again and memorize the feeling of that moment, the feeling of his heart beating on my fingertips, his warmth on my hand... and knowing that his heart is beating strongly, fighting hard.


Mandy said...

Julia, your writing is beautiful. Thank you for bringing us into Gabe's hospital room. I can relate to so much of what you're going through. The Lord has given us such gifts in our boys, and I do pray that you get to take your sweet little guy home soon. I am so thankful for your trust in the Lord. He is so worthy of it. :-)

Amy Bennett said...

Julia, this is so heartbreakingly beautiful. I want you to know how closely I hold you, Gabe, and your whole family. We are praying for you every day. Praying for a great surgery and a hopeful future for your beautiful boy. Heart Hugs.

jenn mongeau said...

Julia & nick- Joshua and I are both praying for baby gabe and for a fast recovery. I was told many times after our loss not to lose faith. Although I did not see it then. I certainly do now. I never thought id see the day where id be passing that advice on. You are truly inspiring parents and gabe knows that. He feels your love and support as he did before you met him. No one is guarenteed tommorow however gave is strong and I'm going to count on faith myself. It will be the first time since my loss. Jenn& josh

Kristin Hankins said...

He knows you're there. :)

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