reflecting on 2018

I was recently asked by a close group of friends to reflect on 2018, remembering highs and lows, as we anticipate the new year. To which I promptly replied, pass! As soon as they suggested we do this I knew I couldn't, and I wanted to leave the room. At first I didn't even want to stay for the conversation because I knew that hearing from them all would force me to think about my own life as I related with them. As we went around the table and I listened to my friends share their deepest reflections, I was so touched. We have all had such different life circumstances, yet could relate to each other so personally on the emotional level. We all have highs and lows. We all feel deeply. We all have fear. We are all juggling a million things. I felt incredibly bad passing on my turn. It was not that didn't want to share. I was not afraid to talk with these women. If I'm going to dive into something, this is the group of people I would want to do it with! The thing is that I am not ready to reflect on this year. I might not ever be. These last five years have been incredibly difficult. Two of those years were actually great while being difficult. The rest, I have either blocked out, forgotten or am trying to forget. The worst part is that those years include both of my daughters first years. 

As a parent of kids with medical diagnosis you have to be strong, you have to be brave, you have to have everything put together. But on the inside, I'm a mess. It's like how Maelyn looks totally normal on the outside, but inside her chest is a total mess. Well on the outside I look like a totally normal mom, but on the inside I feel like a mess of emotional scars. But luckily I realize that, aren't we all? This whole adulting thing is kind of a scam... I think, on the inside, we are all actually still kids just trying to figure out what we are doing and how to raise other kids. 

So, if I truly reflect on my year, I see how I struggled to make it. This year was consumed by preparing for surgery, going through the recovery, and then trying to be normal again. And I, as the mom, probably did a fine job on the outside, but on the inside I have a lot of scars that I am not ready to deal with. Did you know that there is such as thing as caregiver PTSD? Well it's very real and probably more common than people think. I will have to write a whole other post on that topic. But that is why I can not reflect on this year. It is too hard. Moving forward is already harder than I expected it to be. I'm not ready to look back.

Just before writing this I was sitting at my desk, stitching together a mini heart pillow for Koko the lovie. Maelyn has been saying that Koko is sick now and has been bandaging her up and trying to help her feel better. Koko has spent extra time in bed and Maelyn said that she thinks Koko needs a little heart pillow just like the one she got at the hospital to help her feel better. Of course I said I can help you with that!, hoping this means that Maelyn is processing what she went through.  As I was finishing the pillow I realized I was sad but relieved that Koko is sick. Maybe once Koko is all better I can start to heal too. 

When we are weak

Why is it that we always seem to be challenged in the places that we are most uncomfortable? Those who love to work seem to be the ones who loose their jobs and are forced to rest. Those who fear death loose someone close to them and are left to face the loss. Those who are the healthiest get the devastating diagnosis and have to fight to regain their health. This isn't always the case, but doesn't it usually feel like it? 

In my case, I hate moving. I grew up in one house and never moved until I went to college. I always wanted the same thing when I had a family. Buy one house that suited our needs and never move. Do you know how many different addresses I have used since my freshman year of college? Eleven. (It's only been 14 years) I still to this day have nightmares about moving. I told Tim this morning that I woke up in a bad mood because I was having a dream that I was planning another move and was stressed about it! Every move stressed me out. Most of them I hated and I cried, a lot. Most of those were moves that were not my choice, or were partially my choice but I went kicking and screaming. Some of them were happy moves that didn't make me cry, but still stressed me out. But each one of those addresses taught me a lesson. Some big lessons, some small. Each time I felt pushed, pulled and stretched. I don't think I'll ever look back and say that I appreciate those lessons, but honestly they have made me who I am today, and that I do appreciate. 

Before we moved to Colorado our church preached a series called something like stepping out of the boat. Talking about Jesus calling Peter out onto the water (Matthew 14:25-33). Talking about getting uncomfortable for God. Saying yes to things that are hard. Doing thing that are part of our weakness. So when the opportunity to move to Colorado came up, we prayed about it, felt it was God calling us to step out of the boat in faith. We knew it would be hard, we didn't know why Colorado, why so far, why that timing. (This would be the move that I went kicking and screaming.) God wanted us to be okay with being uncomfortable, to practice letting him use our weakness. Because He knew a bigger challenge was up ahead. 

One year and three weeks after we made the big move to Colorado our baby was diagnosed with one of the most severe heart defects out there. At first we were told she would not live. That was so hard to hear, but, I hate to admit this, at that time, I was slightly relieved. I told God that I would rather he take her to heaven than have a medically needy child. I did not think I could handle all that she would need medically. I knew I was weak. I did not want to have to walk through surgeries. I did not want to have to see doctor after doctor. I wanted healthy kids! But life challenged me further, she didn't die, she was born with half a heart. And I am so thankful. I am weak. I am uncomfortable. I do hate her appointments. Surgeries have been nightmares for me. (Literally, I still do have nightmares.) But I have grown. I have learned lessons. I have been stretched and pushed and pulled and most importantly, loved. My kids are love. I still feel like I can't be a mom to medically needy kids, but by the grace, strength and power of my God, I can. I can because my kids are who they are and they embrace it and run with it and they love me as much as I love them. Actually I tell them that I love them more than they love me, but who's keeping track?

Can I encourage you to something? Step out of the boat. It will be hard but it will be worth it. Step out of the boat, choose get uncomfortable, before you get pushed out of the boat. Life happens. Hardship and trials will come your way. Life knows where you are weak and it will push your buttons, so before the unavoidable happens, grow yourself. I can't promise it will be fun or pretty, but I promise you will be blessed by it. So, what's your weakness? What are you afraid of? 

Here is one way you might be able to try this. Who makes you uncomfortable, who are you afraid to get close to because their life is just too much for you to handle? When you read my stories, are you overwhelmed? Does it make you uncomfortable to put yourself in my shoes? What if you befriended someone who is different from you, or who is going through something that scares you? What if you choose to empathize? What if you stop comparing yourself or your story, and start relating with them? Dive out of the boat into uncomfortable, I promise it will be worth it. You will realize that when you are weak, you find a strength inside of yourself that isn't yours (2 Corinthians 12:9-10). 

The Joy in the morning

Have I told you about Nora's middle name? Our boys have family names as middle names. So we had two family names picked out for girl middle names before we had any girls. Lyn and Aletta. The day that we found out about Maelyn's heart we changed her name from Nora Lyn to Maelyn Aletta. The Lord told us that her name was not to be Nora. And we thought that this was going to be our last baby so we figured this way we could use both middle names and be done. After Maelyn was born, we were done having kids, but I always thought about Nora. (Read Meeting Nora). I still thought about baby names, actually I still do. Is that weird? A little, it's okay. But at the time, as I thought about the concept of Nora, I wondered to the Lord what her middle name would be if it wasn't Lyn. And as Maelyn grew, and we walked through surgery and recovery and physical therapy, the Lord kept putting Nora on my mind. I don't remember exactly when but He told me that her middle name was supposed to be Joy. Joy was to come after all of the sorrow (John 16:20). After nights of crying over Maelyn's heart, Joy would come in the morning (Psalm 30:5). The Joy of the Lord was the strength  that got us through (psalm 28:7). Nora is the walking symbol of all of this. Her name means the Light and the Joy of the Lord. 

My mommy heart broke when I was told that Maelyn's heart was broken. Maelyn is truly perfect. She is who God made her to be. In the eyes of both her earthly father and her heavenly father she is perfect and there is nothing wrong with her. Even in her own eyes, she is healthy and great, and I pray that she always views herself as perfect and special. But as a mother, having a child from your womb be born imperfect, broken, not as she should be, and needing painful interventions, it is indescribably difficult. Knowing that my baby came from my body. Just knowing that she will have a different life. Knowing that she will never be healed. Watching her fight for life. Watching her miss milestones. Watching her struggle with different things. Waiting for things to get better, but knowing she will never be fully healed. All of these things were crushing my heart and my joy. But the Lord had a plan. When Maelyn was a year and a half old Nora Joy came to be. The Lord was fulfilling his promise.

Eleanora Joy is about to turn one. Watching her grow this year has been so healing. Her first year has been pretty much the opposite of Maelyn's first year. Nora has been perfectly healthy. She has hit milestones early. She has been loud and active. Nora is so full of love and joy. She wants to be one of the big kids. She is the perfect little sister for her siblings and completes our crazy little family so well. Nora loves her siblings so much and is so incredibly loved by them. We could not imagine life without her. She has brought a joy to our life that we didn't know we were missing. Nora has been slowly healing my mommy heart just by being her. I believe she has also helped Ben, Micah and Maelyn heal from the difficult year we had after Maelyn was born. God is so good to have planned all of this in advance and blessed us with Nora. She really brings us light and joy everyday.

I am a heart mom.

I've been trying to sit down to write this post for a long time but I haven't been able to find the words. Then I think, ok I'll just post an update about Maelyn, but realize I can't do that without writing this first. "Heart mom" is the term used in the congenital heart defect community for the mothers of children with heart defects. This community has other terms such as heart warrior for those living with heart defects and heart dad. Well, I've really been wrestling with my identity as a heart mom. I don't want it and I don't want it to define me, but yet it does. The day we found out about Maelyn's heart my life changed, my title changed. I didn't feel ready, but I never will be. I felt totally overwhelmed, but I still do. I still fall asleep thinking about my heart child. I still wake up thinking about my heart child. The future is still so unknown, but each day is a victory. 

It's one thing to be a heart mom at home; scheduling, monitoring vitals, managing medication, juggling kids, keeping everyone healthy. It's another thing to be a heart mom at a doctors office or hospital; advocating, translating, holding and protecting. It's another thing to be a heart mom out in public; watching closely, avoiding injury and sickness, explaining, yes those are surgical scars, no please don't touch my child, she might look cold, but she's not, if she says she's dizzy, she is, don't push her. One thing that has been really hard about being a heart mom is meeting new people. It has been nearly impossible to meet people and not tell them that I am a heart mom. Because when one mom meets another mom, the first thing we talk about is our kids and when I talk about my kids it inevitably comes up that Micah has a metabolic condition and isn't supposed to eat sugar and, oh yeah, my daughter has half a heart. At that point things always get awkward, and that is when I get frustrated that this heart life defines us. There is so much more to Maelyn than her broken heart, and there is so much more to me than having kids with medical needs, but it is a huge part of our lives. I've only been a heart mom for three and a half years but it feels like a whole life time. 

I am a heart mom. I've thought about burying my child more times that anyone ever should.  I've handed her off to be sawed open, twice. I've seen her scream in overwhelming pain and fear. I've looked into her eyes and not seen her in there. I've seen her stare back at me with no expression but pain in her eyes. I've held her while doctors and nurses did things to her that she did not approve of. I've had to tell her, it's ok, when I really didn't believe it myself. I've seen her question her safety with me. I've cried for her and with her in ways that have touched my soul in a place that I didn't even know existed. I've held her like a baby while she sobbed because she didn't understand what was happening to her. 

I'm a heart mom. I know my way around a hospital room. I know more about the heart than I ever thought I would. I own and can use more medical equipment than I ever thought I would. I have a bond with my heart child that is so close I can't even explain it. We have walked through it together, every step. Every single one of the many appointments, we have kept each other company and held each others hands. We have both comforted each other. We have spent nights snuggled up together watching movies in a hospital bed. We've spent more time singing in the car together. We've laughed and cried in the bathroom more times than I care to remember. We've played 'doctor Maelyn' and 'mommy Maelyn'. We've danced. We know each other in a way that is almost weird. I feel bad that I don't have the same relationship with my other kids, but at the same time I'm grateful that I didn't have to form the same relationship with them. Through it all we've been so blessed.

Being a heart mom isn't easy, and it never will be. Even when Maelyn is an adult and fully in charge of her own life and health care, I will still worry. I am the one who remembers what it was like to hear her diagnosis for the first time. I am the one who fought for my unborn baby. I am the one who took her to the hospital every other day after she was born. I will remember all of the hard appointments. I will remember the surgeries and  recoveries, when she will forget. I will forever be a heart mom. 

Here is THE thing though. I realized today, as I was fighting against letting my heart mom title define me, it's ok to let it define me, it does define me. Because this life is the only life we get, and this is the life that God gave us. God chose my family to be one of the many heart families out there. I've been struggling with that concept for almost 4 years. I've prayed daily for God to take that away and to heal Maelyn completely. But God has a much bigger and much better plan for us and I trust that. I look back over the last four years and God has been so incredibly faithful in sustaining Maelyn. That is the real story here. Through all of this, God was walking with us and holding our hands too. Every appointment. Every scary moment. Every owie. Every tear. God was there. He cried with us. He laughed with us. And he will continue to walk us through this life that lays ahead of us. Jesus has been our only strength, and that will never change

I started this blog when we moved to Colorado in order to update friends and family on our life but it quickly became much more. This blog is the story of my life as a heart mom. It is where I have written the cries of my heart and processed the complications of life. It is not really about the kids, it's about me. I am a heart mom.

As for Maelyn... She is 7 weeks post exracardiac Fontan procedure (aka open heart surgery) and she is doing amazing! After an extra stay at Hershey Medical Center due to fluid in her chest pressing on her lungs, she has been recovering fast and well. She is now better than before surgery! Her oxygen is in the mid %90's! She is acting like a normal three year old. She has the energy now that she never had before. She can keep up with her brothers, running around the house and playing tag. She is eating great again, she is independent again, she is her silly sassy imaginative self. She is in a sweet spot right now. She is just about recovered, the pain is gone, the weather is getting to be the best type for her, not too hot not too cold, she isn't sick, she is starting to forget the bad parts of the hospital stays. Next week will be her 8 week post op appointment. Hopefully she will get off the lasix and just be on her normal asprin. After that appointment we are going to need to enjoy this sweet spot she is in! We don't know how long she will feel this good. We don't know if winter will still be as hard on her as it was last year. It should be better but the cold dry air will always be more difficult for her than it is for us. We don't know how long her body will be able to function efficiently with this new circulation. At some point in her life her other organs can be affected and her heart can start to do some weird things to compensate. 

Everyday is a new day, a new challenge, a new blessing, a new victory. This is the heart life.