To the pregnant woman who just found out her baby has a very difficult diagnosis,

At first, it stares at you- unrealistically shaking your whole world. How could it be true, there must be some mistake? Not MY baby... Not this baby kicking and doing flips right now...

How could anything be wrong?

Take a breath. Breathe. Let the adrenaline happen, let the tears happen, let the fears out. Cry, scream, hold onto your closest friend- sob- drink lots of water to replace that.. and continue to eat healthy. Continue to hold onto hope- because hope does exist.

Now, look up your diagnosis. Find out the best hospital for your baby to be at- join a support group on babycenter- and ask questions. Talk. Cry some more. Prepare yourself for a journey that will be the scariest, most fulfilling, most trying, most loving and most exhausting experience you can go through.

And know this, you are not alone.

Nevermind the people who have been where you are before, because your closest friends will be the parents that you meet at the hospital- the parents who love their children more than life itself- and the parents who talk to you like you are a person, who can relate to you in a way that the general population has a hard time computing. Nevermind your family, who may not know what to say, or may say all the wrong things. The letters you expect to get, may not show up. The support you were expecting may be a lot different than you thought it would be, but the beautiful thing is who will be there when no one else is.

You are going to hurt, and sometimes you are going to see the end of the tunnel only to watch it slip away (over and over again, for most of us). And then you will make friends, and they will lose their little ones. And you will hurt for them in a way so personal, it's going to be almost remarkable how it feels.

Then, you will get up, and you will wonder if you have the strength to make it through one more surgery, one more hospital day, one more cath lab visit, one more IV poke, even. You are going to wonder how you made it through all of that without crumbling (and sometimes you may crumble)..

But your life is going to be changed. Not for the worse. For the better.

You will know the beauty in the value of such a small life. You will see truth in it's rawest, most personal form. You will find God in the middle of the night when hope has left you without a slight trace. And then you will stand up- and keep fighting.

You will form connections to every 'special' child you see, and you find value in the life of every child.

Sometimes, a pang of jealousy will haunt you- at the life you envisioned for your 10 month old. While other babies are learning to walk, your baby may just learning to be a baby again. When you see other babies leave the hospital, you will feel a joy and elation for them, but a pang once again for your time to leave those doors.

And then you WILL leave those doors. You may leave those doors without your little one, because they are still too sick to leave. You may leave those doors without your little one, because they will never leave those doors with you. But it will be the most lifechanging experience you will ever go through- to fight. And to hope. And to know that you did all you could.

Most likely, though, you will walk out those doors with a miracle in your arms. With a smile on your face- with a conquered look. You will walk out with them, and know that they are with you. For three months, for three days, for three years, for thirty. You will stare at them, forever changed by the reward that they will bring to you- by fighting.

So for you, fight like hell. Pray like mad. Cry until there is nothing left in you to cry. Hope until the last moment. Love like you have never loved in your entire life.

It will be nothing like you expected, it will be hard, it will be beautiful. It will be your story to share with the world someday- and you can say how much value a little life can hold. A little, imperfectly perfect life.


A Heart Mom


Amy Bennett said...

Oh wow Julia - this is SO beautiful. Thank you for writing this!!!

Homeschooling Drewper said...

Oh, my!! - that brought me to tears woman!!! .... Yes, every single word is true! I am one of those "been there, done that moms". My son was given a 10 to 15% chance of survival. My lil' man is now a big man!- 15 years old! He was born at Shand's Hosp. w/a Diaphragmatic Hernia. Kristin, Breanna's Mom told me to check out your blog. Great job on your writings. Bless you sweetheart, and your beautiful child.

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