Retreating After Diagnosis

retreat(v): withdraw from enemy forces as a result of their superior power or after a defeat.move back or withdraw.

The blow you take when you first hear those words is often deafening. It takes a little while to sink in. You find yourself crying, thinking, researching, aching, and walking around in a fog. You begin to pull back because the things that used to be so normal just hurt. For me, it was my baby. The very life that was growing inside of me was broken and in for a bigger fight than most of us will ever know. Nothing made sense anymore. My whole world was upside down. I'd just been attacked by those enemy forces. They stripped me of my normal and left me defeated with these simple words...your baby has HLHS.

Talks of "options" began and I'd retreat

I watched my friends have their babies and I'd retreat

I would hear people complain and I'd retreat

When I got asked to do things I'd retreat

People would ask me how I'm doing and I'd retreat

I was confused and broken. I'd always been patient and understanding, but now I was struggling. I couldn't have normal conversations anymore. I didn't know how to answer questions. I couldn't listen to the constant entitlement of people. I couldn't stand to hear people complain about getting stuck in traffic or having a "bad" day. I couldn't bear hearing moms complain about their baby's runny nose or shots.

I felt selfish and mean and cold hearted so I'd retreat.

I didn't recognize this new me. I tried so hard to have empathy. I knew these problems were real and hard for people, but I had new perspective. I had a new weight to carry.

I didn't want people to see me broken and trying to piece my life back together. I didn't want to put that weight on anyone. I could feel people pulling away and the tug on my heart to try to salvage relationships, but all of my strength and energy was being used to remember to breathe, to keep my life together, to hold it together for my family. I tried.

I wanted so badly to be a listening ear and a good friend, but what they didn't understand is I would sit in a million hours in traffic, get the wrong order every time, be stuck in the rain for the rest of my life, deal with a cold, or stay up with a sleepy baby all night just to make his heart whole, to stop them from cutting into his chest. I beg for him to grow old enough to break the window with his baseball or get in trouble at school. I would GLADLY take the diagnosis for myself just so he didn't have to. I could handle it if it was me. I could survive and move on, but I feel helpless to save his little heart so I retreat. I sit in my house and pray and cry and just try to hold on.

BUT in my retreat I've learned some things I'd like to share with you.

1. It's ok to cry. In fact, it's necessary. Allow yourself to feel, it reminds you that you are human and that you love.
2. True friends are still there. They check in, they lend a listening ear, they remind you that there is light in the world, they pray for you, and they remind you that YOU are still in there.
3. Rest! When you don't have the strength anymore, stop and rest in the grace. God did not ask you to fight this battle so take some deep breaths and allow yourself to rest.
4. You are not alone. There are people who get it. There are people who have walked this path ahead of you and are more than willing to love you and support your through it. DO NOT undervalue these people. They become your lifeline.
5. It's ok not to do everything. Sometimes just getting through the day without having a complete meltdown is a HUGE accomplishment. The dishes may sit in the sink and the house may stay a little unkempt, but that is OK.
6. You are UNBELIEVABLY loved. People from all walks of life and all over the world have surrounded me with love. The support I have been shown is incredible. The prayers are felt and my heart is warm.
7. Don't beat yourself up. This is HARD. Allow it to be. Don't try to control everything or try to keep it together all the time. It's messy. You are allowed to be broken.
8. It's ok to laugh. Sometimes it feels weird, but being happy is ok too. It's actually really good. There is so much joy in life and so much to smile about so try to focus on those things daily.
9. They are trying. No, most people do not understand, but they are trying. They want to love and support you in the best way possible, but they just aren't sure how. Be patient, hear love, and don't turn them away.
10. You are NEW. Welcome to this new life. You are about to love deeper than you ever imagined, feel more than you ever thought possible, and pray harder than you ever have. This is your new beautiful life. Embrace it and love it. Each second is a new chance to love, grow, and share <3 and a bonus
11. Retreat. Not forever, but for a bit. You need it. You need some time of reflection, prayer, and understanding. Allow yourself to be alone for a bit and figure out this new life. Learn to love and appreciate it and awaken with new perspective. It will be hard, but you are not alone.

But I Can't Decide What to Wear: Controlling the Controllable

It's like you are falling down a long dark tunnel. You are desperately trying to grab onto anything you can grip just to steady yourself. Things are moving around you in quick blurs and nothing makes sense anymore. You are tumbling quickly and waiting to hit the bottom, but it doesn't come. You just keep falling. That's what this feels like. In that moment of diagnosis it's like you've been pushed into that winding, spiraling, never ending tunnel.

That doesn't happen to normal people. It's just in the movies or the news...not my life. But here you are falling, like Alice to Wonderland, frantically trying to control something, anything.

If you are anything like me, you thrive on control and planning. You make to do lists and you go forth with great detail. The most difficult part of this journey for you right now may be the loss of control, the wait, the unpredictability. Everyone tells you to take it one step at a time, but that is way harder that it seems. WAY! so you start to focus on the "trivial things"...the things you CAN control.

On the day of big appointments you obsess over what you will wear and how you'll do your hair because you can control that. You endlessly pour yourself into tiny details like facebook pages and writing down questions because those are within your power. You stress over billing and insurance because of the instant gratification of knowing RIGHT NOW.

To people on the outside we may look a little lost. How could we be focused on clothes in a time like this? BUT I see you mama. I see you just trying to pour a little normalcy back in the mix. I see you focusing on what your mind can actually wrap itself around. I see that for just one moment you want to turn off the quickly moving mess of life and PICK A STINKING SHOE! But to the world we say don't be fooled. Those unanswered questions, those moments of chaos, those uncontrollable things they still haunt us.

I get it and it's totally ok! No one is here to tell us how to handle the chaos. We do it the best way we know how (through kicking, screaming, and tantrum throwing. The good old "adult way"😉) But really. We cry, we obsess, we meticulously plan what we can because it feels good to have a little stability.

So go ahead and be the mom who sits on etsy and plans every tiny sock and leg warmer you'll put on his little feet. You're allowed :) Embrace those moments where you find a branch to stop your downward tumble for a little while. We all get it. And in those moments when you begin to fall again, try to enjoy the ride. It's messy and scary, but you'll look back in awe of the strength you carved out in yourself.