Chapter Ten: "Dear HLHS Pregnant Mom..."

Dear HLHS Pregnant Mom,

I've been thinking about you a lot.

You are where I was in October of 2015 when the tech told me to wait after doing another scan of our baby. I was blindsided. Were you? When they called me into the office to talk I had absolutely no idea that there was anything wrong. I didn't think there would be.

Maybe you just found out. Maybe you were just at the office hearing "your child has something wrong with their heart". Maybe you have had some time to contemplate, to process, to cry. Maybe you have no idea what to expect and you still go to bed terrified that your precious babies heart will decide to quit. Maybe you are in the "month"...waiting for labor to start, or to go in to be induced, and maybe you are so excited that you are pregnant one more day. That for one more day your baby is safe.

I want you to know: this sucks. It is big and scary. It time consuming. It heart breaking. It is hard.

I want you to know: this is beautiful. It is precious. It is a miracle.

I wish I could tell you what to expect. I wish I could tell you what its like when your baby is born and you sob, because you get precious few minutes before he or she is whisked away to be examined. I wish I could tell you how it feels to be in the recovery ward, listening to other babies cry, silent tears running down your face because your baby is in another hospital.

I wish I could tell you what it's like to have to trust a surgeon to operate on your babies walnut sized heart. I wish I could describe to you how anxious you will be while your baby is in surgery.

I wish I could warn you what your baby will look like after surgery...

I can tell you that it will be incredibly hard. That you will feel your Mama heart stretch and break every day afterwards as you trust doctors and nurses with the most amazing baby. You will cry, Mama, your arms will fall asleep Mama, you will ache and be tired Mama.

Your babies life, your babies story, will be Beautiful Mama, unique and precious.

Look, these surgeries, yes, hard, but oh...oh they give you time Mama, so much more time. Nine months, plus. My son is going to be four weeks old soon...four weeks that without this we wouldn't have had...how amazing. Embrace the beauty of how broken our babies are and you will learn to love them in ways you never thought possible.

If you love the same God I love Mama, know that you will grow to love Him more. You will learn how to pray silently through tears. You will learn to feel His presence as you watch nurses and doctors hover over your child's open chest, busy in the room, while you sit quietly. You will learn how to be weaker than you ever thought and in that moment of weakness, when you think you can't even be in the room with this baby who you love, who doesn't even look like your baby, you will learn what His strength can do. And you will stay there Mama. You will stay.

Everyday you will wake up and thank God for another day. Each set back will make you feel defeated, each step forward will make your heart swell, and all the times in between you will learn how to wait. And you will wait well.

Mama you are not alone. Take all these big feelings and find ways to tell other people. Share with the Doctors and nurses and janitors how you feel. Write about it. Draw about it. Call your Mama, cry with her. Text your friends, email your Pastors, draw from their strength as well...everyone wants so badly to share this burden. Let them. Share with them. You don't have to walk this alone.

You will handle things differently than I will, Mama. We are not all meant to be the same. Figure out what works for you. Don't compare. My child's story is not meant to be your story. Maybe my son will be in recovery for months, maybe yours only for weeks (I pray this is so for you).

Wrap yourself in these words. Clothe yourself with Strength and Dignity. Bring loads of tissues, you will cry. Bring loads of chap stick, hospitals have dry air. Bring tape, people will send you cards and notes to encourage you. Bring lotion, you will wash your hands more than you ever thought possible. Bring Hope, cling to it in the darkest times.

Oh Mama who is still pregnant with your HLHS baby, I see you. I know you. I was you. I am you. I am still in the middle of this battle, still fighting, missing my son. I think about you a lot, think about things I wish I had known, think of what I would tell you.

Don't plan so much. The most I know is the next 24 hours and each 24 hours is precious to me. May the next 24 be precious to you. May you be encouraged...I hope you are. I hope you know I am making it through something I thought I would never get through.

I hope you know, you and your baby, and your family, those who love you, are loved and held.

I know you know that I think about you. I think about you a lot...and I am praying for you, whoever you may be.

With all my love and hope,
An HLHS Mom