Tuesday, February 25, 2014

I wish I would have known...

Dear newly diagnosed mom (yes, you, hiding in the corner, your heart full of fear),

I know you're scared. I know your world has just been turned upside down and it will never be the same. You've probably heard of NICU's before, maybe even had friends who had babies in them for a few days, a week, maybe longer. And you probably thought that was the worst thing you could possibly imagine. But open-heart surgery on a baby? Your baby? For real? 

I've been there. In your shoes. Freaking out. 

I knew it was going to be bad. Really bad. Actually, no, that's not entirely true. I thought I knew how bad it was going to be. But, honestly, there's nothing that can quite prepare you for your baby being taken from you into an OR to have his chest cut open and returned with countless tubes and wires, seeing that tiny walnut sized heart beating through mesh. They tell you your child's broken heart will be mended by a world class surgeon. But they don't warn you about your own heart. That, as your child's heart mends, your own heart will be battered and bruised. That there will be scars left behind. That there will be no surgical cure for the breaks in your heart. Thankfully, mercifully, I did not know how bad that would be.

But what I really didn't know, and I so wish I would have, is just how great it would be. The amazingly incredible moments. The moments that would literally take my breath away from the sheer beauty of them.  The moments I would see God's own hand undeniably on my child, feel His presence in my dark hours, see His love through the doctors and nurses caring for my son.

The moment I would hold my son for the first time, and wouldn't see the tubes, the lines, the wires, but just my son
That I would always, amazingly, see just my son. Not the tubes, the wires. Just, my son.

The moment he would take his first bottle and I would think "I'm feeding him! I'm really feeding him!"

The moment, at 6 weeks old, that he would go home, finally, from the hospital.

The moment he would roll over, crawl, walk, run, jump. 
That it wouldn't matter how "late" those things would happen. That, all of the sudden, the schedule we were supposed to be on didn't matter anymore. 

The moment he would talk...and when I realized he wasn't ever going to stop.

The first day of preschool.

The moments go on and on.

So many, many amazingly incredible moments that weren't overshadowed by a broken heart and endless hospital stays. Rather, they were made more clear, more beautiful, more sweet, by what my son overcame to make it to those moments.

I wish I had known that I would be more proud than I ever thought I could be. I wish I had known that I would see my son's strength and indomitable spirit in my weakness and brokenness. That I would see my daughter become the ultimate protector, that she, too, would find her own journey in all of this. That I would see strength I never knew my husband possessed. That our marriage, put through a fire, would be strengthened. That God could bring me ever closer to Him.

Raising a medically fragile child isn't for the faint of heart. It's hard. Harder than you can possibly imagine. And none of us know how long our journeys get to be with our special children. But, oh my word, however long the journey is, is it ever amazing. I wish I had known just how incredible it would be, how my life, and my daughter's and my husband's, that they would all change for the better. That the changes in our lives would have a ripple effect out to anyone who meets my son. That the world is a better place because we chose to give our son life. 

So, I know you're scared. I get it. I remember being so scared I couldn't even bring myself to have a baby shower for my son. I was too scared to get presents that we might never use. But in the midst of the worry, let me be the first to tell you, there are good times ahead. I wish I had known going into this that the journey wouldn't all be bad and scary. That there would be great times. Amazing moments. Moments that will capture your heart, forever change it, and leave you blessed for having had a medically fragile child.

People will call you strong and think to themselves how lucky they are that they haven't had to go through what you've faced. But you'll know. You'll know in you heart that you're truly the lucky one. Lucky to get to parent an angel here on earth.

So tonight, as you fear for the future of your unborn baby, know that amidst the darkness, beautiful moments of light lay ahead. More than you can even know right now. 

Lift your head up and look for that light. 

I know you're too scared to believe that it's there.

But it is.

I promise you.



  1. What a gift. You are a brilliant writer, and have offered such loving hope and insight to many! Thanks!

  2. Hi Amy! I don't know if you remember me, I'm Ali from Hawaii and was at Rady 2011-2012 with my HLHS daughter, Veda. I regularly check out your website and so appreciate being able to follow Bodie's journey, especially his Fontan, as we start towards that next challenge. Veda is doing great, by the way. I just decided to leave a note today b/c I especially appreciated this message. I have been wanting to go on all the HLHS forums where parents who just found out about their HLHS babies go to get information, when they are freaking out & afraid. I have been wanting to post on all of them to let them know that this journey is wonderful/terrible, beautiful/brutal but it is SOOO worth it. Your words are perfect and say it so much better than I have been able to. Maybe I'll post a link to this in a few places. Would that be ok? Take care & thank you!!

    1. YES, Ali, that would be more than ok! Thank you so much for asking! And I totally remember you and sweet Veda - how wonderful to hear she's doing so well!!! what a blessing! Do you have a care page or blog for her I could follow as she heads into her Fontan?

    2. Thanks, Amy. No, although I love the HLHS blogs/care pages that are out there, I haven't taken the plunge to do one for ourselves. I was simply sending out emails during our last surgeries to the friends and family that wanted frequent undates. I can add you on there as well, if you want. We just saw our surgeon and he said she is doing so well, he thinks the Fontan won't be until summer 2015! We thought for sure it would be this year. We are happy & enjoying more hospital-free time. Take care & thanks again for a great post.

  3. Beautiful, so encouraging to see your son thriving at the end of the process! Praise be to God! My infant daughter has HLHS and I experienced all of the above. Please see our story at wwww.Pinkbowdiaries.wordpress.com and Facebook. Com/pinkbowdiaries. God bless you all!

  4. Love this Amy...beautifully written and so very, very true. We are truly the blessed ones.

  5. You are blessed. I so wish I could have held my son Miles before it was time to say goodbye. I never experienced what it was like to see him without all the tubes and blood. Our time together was only 6 days.

  6. Love the page. Our daughter was born on 1/9/15 with HLHS. Everything I see online shows a diagnosis. I'm thinking our ultrasound tech dropped the ball because nothing was detected. She is currently at Vanderbilt in the PCICU. She had the Norwood procedure when she was 6 days old. She has also had another procedure to tack her diaphragm down because the right side was permanently paralyzed from the Norwood.