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Wish Nation

Making the Choice to Love

Lexi Scribbles & Crumbs
It's difficult to imagine what parents think when they find out their child has been born with a serious illness. Are thoughts that are just too dark and too unsettling to even consider? There must be, but who could possibly admit it?

Lexi is one blogger who is willing to share even the most difficult thoughts. The blog post you’re about to read first appeared in her Scribbles & Crumbs blog; it deals with Lexi’s emotions as she decides whether she has the strength to love a child who might not be in her life very long.

When I first heard the diagnosis, I sat in my hospital bed, the same bed in which he was delivered only hours before. A doctor from a hospital half an hour away called for me, and as he spoke over the crackled line, I scrawled the words “Total Anomalous Pulmonary Venous Return” on a hospital room service menu. After a textbook delivery, my baby was whisked away as a team worked for hours to stabilize and rush him off to another hospital. I was told to say my goodbyes as his incubator was pushed to the ambulance. He would be flown for an emergency open heart surgery just hours later. I was told they would try everything they could, but his condition was severe.

Scribbles and Crumbs Parents BlogWithin hours, every dream and every plan I had made up to that point lay in ruins around me. Part of me felt a very visceral reaction, like I wanted to stand up and scream out, “SOMEBODY SAVE MY BABY.” The other part of me, well, I just felt numb.

Fast forward to later that night. He made it through his surgery, but the surgeon was not hopeful he would recover. I stood in the dark and quiet that night, after heading back to my sleep room. I was faced with a choice. Should I distance myself from him and protect my own heart? Or should I ensure that no matter how long his life, he would never, ever be lacking for love?

I chose the latter. I couldn’t not.

And I got to give him that love for nearly seven months, and now, I love him every day after.

I learned that when we choose to love these children with fragile bodies, it’s always worth it.

We learn to take the next step by their side, promising loyalty and love to them no matter where the path may lead. We spend sleepless nights curled up in plastic hospital recliners, monitors beeping, and adrenaline pumping so that we are ready to jump up at a moment’s notice. We run on will power, faith, and a touch of insanity as we fight for their lives, as we advocate, and as we learn them like the back of our hand. We live for their smiles, their snuggles, even just a glance of their eyes our way, something that will tell us they know– they know they are loved, and they know to whom they belong. We lay our hearts and our lives down in the name of sacrificing it all for them, and we carry them for as long as we are able, whether we are blessed with decades or whether we never hold them with breath in their lungs.

And they deserve every single ounce of strength, of love, of faith, of hope, of fight that we pour out. They deserve all of our heart, because these perfect, special, fragile children give us nothing less than everything they have.

Lexi Scribbles & CrumbsIt’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.

And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, “I love you, too.” They are worth it all.

Take it from me.

Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more.

It’s a frightening thing, loving someone you could lose, but it will always be worth it. Our children are always worth it.

This is Lexi’s second Wish Nation contribution. In her first post, she shared advice for the parents of newly diagnosed children.

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Wish Nation gives you a behind-the-scenes look at Make-A-Wish®. See how wishes come together and how they change lives forever. Hear directly from those who work or volunteer here, or those who have been transformed by a wish. And learn why we are so committed to someday granting the wish of every eligible child, every year.

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