Monday, May 23, 2016

The Blog I Didn't Want to Write

"I'm so confused. I know I heard you loud and clear. So I followed through and somehow I ended up here. I don't wanna think... I may never understand how my broken heart is a part of your plan. When I try to pray, all I got is hurt and these four words... Thy Will Be Done." -Hillary Scott

These lyrics hit me like a ton of bricks the first time I heard them because they describe my struggle so well. Neither of our boys were unplanned. They were not accidents. They were both conceived out of prayer and obedience. I heard God clearly say "NOW" for both of them. They weren't my plan, although they were my hope. They were His. I was hesitant and nervous both times for very different reasons. When we decided to trust God and try for our second baby, Noah, our lives were untouched by terrible realities like disease and death. We just weren't sure if we could handle having two children. Things were going so well with it just being us and our daughter. Should we really rock the boat? What if having 2 children was way harder than we thought it would be? We were comfortable. We were in very familiar territory and trying for a second baby was a really hard decision for us but when God said move, we moved. I literally remember the moment. And just like that we were no longer a family of 3, we were a family of 4.

After we lost Noah, the thought of having another baby was terrifying. We knew the risks... congenital heart disease as complex as Noah's increased our risk of having another heart baby even though there was never any identifiable cause for his particular defects. Before you ever have a heart baby your risk of having one is less than 1%. After you've had one, depending on lots of factors, your risk increases to somewhere around 5%. Well once you've experienced 0.8%, 5% (over 5x more likely) sounds like a guarantee. But then add in the fact that not only did we have a baby that had congenital heart disease we had a baby that died unexplainably from this awful disease (also a 5% likelihood). So to say we were scared was well... a joke. Scared is a petty word in comparison to the genuine fear we really felt. But we love our children and we knew that we never wanted our daughter to be an only child (here on this earth). We also knew that we couldn't let fear rule our lives. The enemy didn't get to steal our son, our joy, and our future. No way. But most importantly we knew that no matter what Noah's heart looked like or what his journey was like, we wouldn't have traded one single second of the life we had with him. He filled our hearts with more love, joy,  and hope than could ever be explained. So we would try again... we would bring another beautiful baby into this world if the Lord should allow. We prayed, we trusted, we listened and just like that we were no longer a family of 4 but 5.

I kept our pregnancy with Isaiah to myself for much longer than I did with our other two children. I needed to safeguard my heart. I couldn't hear the "noise" that comes with a pregnancy announcement. I couldn't handle much in the beginning and I had to constantly submit my fears to the Lord. Once you carry a medically fragile baby, you step out of the blissfully ignorant pregnancy bubble most new moms live in (heck, you don't step out of it... yours was popped a long time ago and it won't ever come back) and you enter into this place of fear and uncertainty about your child's future. You know there is no guarantee that you will get to keep the baby. You know that there is no guarantee your child will be healthy. Once you have experienced the loss of a child, all of your senses are keenly aware that at any moment your life could change for the worse again. You brace yourself for the bad and beg God to please protect your child and you from ever having to live through a nightmare like that again. You just want "normal" but you are so aware of the reality that normal may not be God's plan for you.

Pregnancy after disease or after loss requires, in my opinion, the kind of faith and strength that can only come from the Lord. It has the potential to wreck you and if you don't have a firm hold on the One who holds all things you can very quickly spiral into a constant state of worry and anxiety. I chose very early on to trust in a few things.... 1) God loves me and my child. 2) Nothing could get to Isaiah without first going through God's hands. 3) God carried me through Noah's diagnosis, surgery, and death and has continued to carry me through the time I've spent without him. He would carry me through this pregnancy as well.

Once we got to a point in the pregnancy where my joy about having another sweet baby far outweighed my fear, I made it public. I asked for prayers. I needed people to know. I needed something to share and to look forward to. And praise the Lord all of our tests were coming back perfectly for our little Isaiah. Our genetic testing was normal. Our anatomy scan (where we found out about Noah's congenital heart defects) was perfectly normal. Our first fetal echocardiogram with Noah's cardiologist was beautiful. I shared all of this with everyone and I had faith that we were in the clear. We would go back for a follow up echo a month or so later and that would be the end of it... we'd then ride the happy wave of a normal, healthy pregnancy all the way to his birth. I think most of you can see where this is going...

Let me start off by saying that I have hesitated in telling this part of our story for many reasons. I have struggled with asking for prayers. I have struggled with God wanting me to share this. I have flat out told him NO on numerous occasions. I'll explain.

During our second fetal echo, at 28 weeks pregnant, our cardiologist found a moderately sized ventricular septal defect in Isaiah's heart. This is a hole between the bottom two chambers of his heart and there are many ways it could go. The best case scenario - it closes in utero. But if that doesn't happen, depending on it's size after birth, it can either close on it's own without any intervention usually by the first birthday,  it can be so small that it never causes any issue despite remaining open, it can cause his heart to go into heart failure that could be managed with medication while we wait for it to close, or it could not close, cause major problems, and be a reason for open heart surgery.

When Isaiah's heart went from being perfectly normal to having a defect my first response was not some big gesture of faith... it was "NO! Not him. Not me. Not again. I don't want this. I'm not doing this again. This isn't fair. This isn't okay. No. No. NO!"  Now, part of the reason I was very hesitant to make this knowledge public is because ventricular septal defects are incredibly common. They are, in fact, the most common congenital heart defect.  Another world, a different universe entirely, than the extremely rare and complex nature of Noah's heart defects. But still... for a heart mom pregnant with a child after the heart baby... you want no part in the heart world again. You just want normal. I wanted no part of being a second time heart mom. None. I also didn't want to hear "oh so and so had that and they're fine..." or the flip side "so and so had that and had to have open heart surgery to repair it". I didn't want to hear anything at all because I just wanted it to go away.

I couldn't hear God in the beginning. I couldn't see his plan. I couldn't understand why we had to walk down another version of a heart journey. When He told me that it was time to try for our third baby he very clearly showed me the scripture "Behold I am doing a NEW thing. (Isaiah 43:19)". I was angry because I felt like He was going back on His promise to me. I felt betrayed. I listened to you Lord. I trusted you Lord. Now this?

I was also very hesitant to share this new development because the very last thing I want is for anyone to say "Poor Angela and Daniel... they just can't catch a break." I don't want the pity. I don't want the worry. I don't want projected fears. I don't want anyone to have another reason to need to add me to their prayer list at night. Losing Noah was quite enough for my entire lifetime.

But over and over again I've heard or felt God's tug on me to share. I've either ignored it or argued it away in the past but today after a particularly powerful message in church I knew God was speaking right to me. Who am I benefitting by keeping this story to myself? How can I share the gigantic hope and faith God himself has placed in me if I sit quietly and refuse to share how this experience is changing me? How am I acting in faith and waiting expectantly on the Lord to move in my favor if I won't tell anyone until he's already fixed it? My story didn't end with Noah. My journey of learning who God is and how He loves and comforts is not just for me. It's not about me. I am a vessel. I have a calling. I have an obligation to spread His truth and to inspire faith in others through the paths He has set my feet on. And if I don't then I'm being disobedient to His call on my life. Okay... Okay... Okay, God. I hear you. I'm listening now. Once again you're telling me to move so I'll move. (But I really don't want to...)

So here we are, 10 weeks post Isaiah's diagnosis, and it has been a roller coaster. I have felt moments of extreme fear but the peace of God has covered me throughout this waiting period. We have had a few more echocardiograms since that first one and each have shown a relatively unchanged VSD. I have prayed on hands and knees, with faith and expectancy, in Jesus' name before each and every visit (and every day in between) for spontaneous, in utero healing. As of the last echo a few weeks ago that had not happened.

Do I still believe that if it is God's will the VSD will close in utero before he's born? (any day now)... absolutely! But the key is, if it is God's will. I believe with all of my heart that the Lord is going to heal Isaiah's VSD. I believe he will never require cardiac medications or surgery. I believe he will be perfect and whole without defect. I believe all of this because I know God is for me and for Isaiah. I believe Isaiah's story will be entirely different than Noah's. I believe all of this because I know God is good and faithful. I still believe in His healing and in miracles. But I also know that even if He doesn't... He is still good. He still loves us. He still has a good plan for Isaiah's life.

But that's the thing about God's plan... He doesn't ask for your opinion. He doesn't change it because you want Him to. He holds all of the cards and he just wants us to trust Him with the deck. He holds you close and whispers "I know..." when you fight against what He's doing in your life with everything you have in you. He strokes your head and calms your fears just like a good parent does when you cry out to Him brokenheartedly because you just can't handle one more thing. You tell Him you can't do this... and He tells you "then let me... I will sustain you. I won't let you go."

We have a job and that is to trust Him. So I do... but that doesn't mean it's perfect, flawless trust or even that it's pretty. It's not. It's a constant struggle, a tug of war between my need for control over my own life and his sovereign plan. It's a mess. But it's real faith and real trust and it's building hope in me that I couldn't have found on my own. So even though I still don't want this... I do want what God wants for me and for Isaiah. And even though it's so easy for me to just say no way, I'm not doing this... I'm not going to be a second time heart mom... if that's His will for me, then I surrender to it. If I've learned anything from Noah's life and death it is that this life I've been given, the paths I've been put on, they are guided by His hand... they are for His purpose and His glory and I will be more than cared for along the way. I believe Isaiah's heart will be completely normal when he is born. I believe God's hand is on his life. I will wait with expectancy. I will wait for God to move.

But if not... He is still good. He is always good.

***Your prayers for a perfectly healthy baby boy and a safe labor and delivery are much appreciated and very welcome, even if I do wish you didn't need another reason to pray for us. Thank you all from the bottom of my heart.***

Wednesday, January 6, 2016

The Big Stuff

Some days with my little girl are so refreshing because she doesn't know that the little things really are the biggest. She doesn't know that sitting on her Frozen blanket on the back patio during this surprisingly beautiful day while she munches on cheese and crackers and yells "This is the BEST PICNIC EVER!!!" is healing pieces of my soul. She just knows its fun and that I'm happy and it breaks my heart and fills it at the same time because she knows it really matters that I'm happy. She's seen me sad. She's seen me broken. She's seen way too much for a 3 year old little girl and still there's so much more I'll have to tell her one day.

She asks about him often. The beautiful thing about a child her age is the way she processes this great loss in her life. It's not all at once. It's not even every day or every week. It comes and goes. But when it comes it comes hard. It comes like this.... she starts humming a song that she doesn't really know but she likes it. It turns out to be "Hush Little Baby" and as I start to fill in the words for her she cries. She cries because sometimes songs that she knows are lullabies and books about babies hit her where it really hurts... and she misses him. The tiny little baby brother that she barely got to know. She misses him deeply. And she asks the hard questions. The ones I have no answers for. The ones that say "Why isn't he ever coming back?" She says things like "But I don't want Noah to live in Heaven" and every single part of me breaks. Because I DON'T EITHER. So I tell her I know and that I love her and that Jesus loves her and he loves Noah... and that Noah's okay... better than okay where he is. And I promise her with all of me that one day we'll see him again. And I see the light glimmer in her eyes and the hope dance in her soul and I know that even that sentence alone crushes me. Because there's only one way to get to Heaven and in all honestly I can't handle the thought of that right now. So I whisper my prayer to God to please not let that be until we're old and gray. One day... but no time soon. It's all such a hard mess sometimes.

It's incredible though because it's been almost year since he left us and she still remembers so much. Her memory is such a blessing to me. She remembers things about him like it was yesterday. Of course I do too but her memories are not full of sadness like mine are. They are full of joy and love and all things baby related. She speaks in present tense when she shares her memories and they touch the places in my heart that need to be touched even when tears are the result. I hope she always remembers him because soon she'll have a new baby brother. She's moved on from being bummed because she really wanted a sister to dress up like a baby doll to being so proud. She says "Mommy, do you know that now I have two baby brothers?!" and that bittersweet pang comes over me again. Yes, she has two baby brothers. I have two sons. Both of them feel so far away though sometimes. Even though one bounces around in my belly... I have lost all innocence and I know even though he is fully mine, he is also fully God's. And my mantra rolls off of my lips again... "I don't understand, Lord, but I trust you and I'm so thankful that I get to be their mommy."

Today I accidentally threw one of my dog's ropes into the tree. It's too high up for me to reach and the tree branch is too sturdy for me to shake it down. There were three other toys right next to him in the grass but he wanted the rope in the tree. The unreachable one. The one that he just couldn't have anymore. He barked and cried relentlessly, with no intention of giving up on the hope that his rope would be recovered. I just watched him and it felt so strangely familiar to me. It felt like me in the early months after losing Noah. It felt like watching myself beg God to just give him back to me. I didn't want anything else. I could barely see anything else around me. It's hard to see where I was and where I am now. It's hard because those early memories are so painful but it's also hard because because I sometimes feel so far removed from it now. I continue to watch him and he finally gives up on it, but rather than slump away defeated he runs in the other direction to the other toy that he loves equally as much. And I hope I'm doing the same but sometimes I'm not sure. Sometimes it all feels like defeat. It feels like maybe I just didn't have a choice but to move forward. I never want to feel like I'm leaving him behind because I'm not... he is in every step I make. He's the very beat of my heart. He's never lost to me but he is so unreachable.

Time passes and you just realize that you can scream and fight hopelessly or you can stop and look around at everything else you have. The sun still shines even when you don't understand how it could. The laughter still fills your home with the sound of the voice that you loved the most in the world before the little boy with the perfect lips came along and tied up the place in your heart for the little one you love the most. Life is still so beautiful and so good. So you stop and you run in the other direction... never forgetting for a second about the rope in the tree... You run with arms wide open to the blessings around you. You choose joy. You choose to continue to see the good. Noah will still be there when the time comes for me to go to him. But she's here now... and there's a little boy growing inside of me... and above all else, I trust Him. Sometimes thats all you can do. Even when it feels like the littlest step, you realize God says that in His eyes that little step toward Him, toward joy, is the really big stuff.