2018 - In Review

By any worldly standard my 2018 would be considered a very bad year. Coming out of 2017 I was so looking forward to a “normal” year. One filled with rearing my three sons, one where we weren’t solely focusing on a child with health issues, one where we could just grow and love life! That idyllic image was quickly torn down. While I had thought that God was done bringing me through the fires, the biggest one was yet to come.

2018 brought the realization that Satan is truly walking about as a roaring lion, seeking whom he may devour (1 Peter 5:8) and I was an intended target. He had been planting seeds of anger and resentment in my heart for months. Slowly but surely he was taking my heart away from the truth of God’s word and replacing the truth with lies. I, of course, did not realize this as it was happening. I thought that I was spending my time trusting God and praying for his will. But in reality my prayers were selfish.

This year`s story begins back in 2017, though. You see, in 2017 my youngest son went through 2 open heart surgeries, a 4 month long hospital stay, and a number of other procedures. One of those procedures was getting his G-tube put in. This was one of the hardest decisions that we had to make. I resented it from the moment that they brought him back. I was so angry that God had not answered this prayer that I had been praying from before he was born. I always knew that feeding issues could be a possibility due to the severity of his CHD (congenital heart defect) and his not being able to learn the correct skills when normal babies did. Although I knew this medically and mentally, I did not believe that it would affect my son. I believed with all my heart that God was going to answer this prayer of mine. I trusted that since I prayed that Aaron would know how to eat and do it well that God was going to answer that prayer. After all, He says that when we pray, believing, we will receive (Matthew 21:22). So, I prayed. I believed. Why didn’t God answer the way I wanted to receive? This was the start to my year. I started the year angry with God and it just got worse from there.

It wasn’t just that Aaron wouldn’t eat orally. It was the throwing up and not being able to keep anything in his belly that was the worst. I don’t remember if I’ve shared this on here before, but let me tell you about our days. I would feed Aaron through his g-tube and sometime between 2 minutes to an hour he would throw it all back up. And I mean all of it. Because of this, he would not grow. He didn’t lose weight during this time, but he just wouldn’t grow. This lead to many GI (gastroenterology) visits that lead to no answers. Ultimately in April 2018 we were admitted to Children’s Hospital for “failure to thrive” as they would call it. From the moment we were admitted we felt an uneasy sense that they did not trust what we had been saying to them about our son and his health. Since we were there because our son wouldn’t gain weight, it must be our fault. We must not have been feeding him. We were essentially accused of neglecting our child and that is why he wasn’t growing. This hurt. Bad. Because let me tell you what I did all day long…

I fed a baby. I cleaned up the puke. I fed a baby. I cleaned up the puke. I fed a baby. I rejoiced that this time he didn’t puke! I fed a baby. I cleaned up the puke. I did a load of laundry. I fed a baby. I held my breath waiting for the puke. I put a baby to bed. I fed a baby after he was asleep. I cleaned up the puke an hour later. I did another load of laundry. Six times a day he would get fed, and anywhere from 2-4 of those feeds he would throw it all up.

I don’t say all of that for people to feel bad for me. I say it to show you how I handled it so very badly. Each time Aaron would throw up I would ask God “Why?”. Asking soon became yelling. I would literally lay on the floor while Aaron was throwing up in his crib and yell at God, “WHY?! HOW IS THIS GOOD!? WHY DO YOU HATE ME?!” I would cry out in anger to God. Which lead to crying out in anger at God. Which lead to just being angry. I stopped praying. I stopped expecting anything to change. I stopped believing that God cared for me or loved me. I felt  anger, betrayal, sadness, loneliness, and a myriad of other negative emotions. I couldn’t understand why God wouldn’t answer this ONE THING for me. There is a verse that hangs above Aaron’s crib that says that he (God) is able to do immeasurably more than we can ask or think (Ephesians 3:20). And I still believed that. I would sing the children’s song “He’s Able” and get angry. I knew that he was able. I knew that God just had to say one word and Aaron would stop throwing up. And because he wasn’t doing what I knew that He was able to do, therefore, He wasn’t good. Or so I was being told by Satan.

This was about the time that Jesus broke me. We had been hospitalized for the feeding issue and gone home encouraged that we finally found what was going to work for Aaron. We had done lots of tests that showed internally there was no reason for the throwing up. The only answer that we had (that I had been trying to tell the doctors all along) was that he was being overfed. He just couldn’t handle all that food. Well, we got him started on a new formula and when we got home I switched to a new company that makes real food blends. So instead of being on a toddler formula, he would actually be getting real food! I was so excited. And the transition went so smoothly. We thought that our problems had finally ended! After a few weeks on his new food he started throwing up again. Talk about heartbreak. I had been up with Aaron again with him throwing up all his food overnight and had to take the older boys to some appointments the next day. I kept getting prompted to call my dad, and I really didn’t want to do it. How could I call him and tell him how angry I was at God? How could I call him and complain about how God says he is good, but I don’t see any good. I fought it the whole way to the appointments, and finally called him on our way home. As we were saying goodbye after our conversation my dad said, “I will be praying that God will give you strength to get through this.” That simple phrase changed my heart.

I had not ever prayed for God to be with me and change my heart and give me strength. My prayer had always been, “God, fix Aaron.” “God, heal Aaron’s belly.” “God I don’t see why this is good, why are you doing this to me?” Growing up I was taught that you always pray “in the will of God” meaning, if it is God’s will then he will answer according to that will. His plan is always best. However, in this season of my life when it came to handing over that will to God I couldn’t do it. I don’t think I ever once prayed, “God, if it’s your will heal Aaron.” I demanded it. I figured since I trusted and believed that it would happen that God was going to do it. I was the most selfish parent ever. My prayer changed that day. I still pray for Aaron’s belly to get stronger so that we can one day get rid of the feeding tube altogether, but I no longer demand it of God. I now pray that God would indeed be with my heart and my mind. That I wouldn't give Satan leave to preach lies to me. That I would see Aaron’s tube as a good thing and not something that God has placed between us.

It truly is amazing how that after all the things we went through during Aaron’s first few months at that hospital how quickly I forgot. I am ashamed with how I went from trusting God as Aaron went through two open heart surgeries to accusing God of not caring for me. I still have to yield my mind and heart daily to God and the truth of His word. On the truths that I have known and learned over the years. God is good, even in the bad days. He is sovereign, even when we don’t understand why He is doing what he is doing. He still loves me, even if my life isn’t what I think it should be. He died for me and granted me salvation, and that is the greatest love I have ever known.

God sent me another trial in the midst of this trial this year. I had always dreamed of having 4 or 5 kids, and when Aaron was born with all his complications we had some very serious discussions about whether we would ever have more. After God broke me and I dealt with my sin against Him I became very content with my three boys. I was so excited to have our family complete, just the five of us. I loved so much being a boy mom. It was a few weeks later that I found out I was pregnant. I call this a trial because I was not at all expecting this, and I had a hard time with the news. We had decided. We were done. I sold all of our baby things! Although it took me a few weeks of prayer and giving our new baby to God and changing my prayer from “Why, God” (again) to “Thank you, God.” I became excited to welcome new life again into our family. God has been in it from the beginning and if He thought that we needed another one to rear, then who am I to question Him? We already can’t imagine our lives without our fourth in our home.

So, to say that the last year was the hardest in my life is not at all an exaggeration. It was hard. It was so lonely. It was scary. And I am so thankful for it. Without the year 2018 God would not have shown himself so clearly to me. He could have just left me to deal with life, but he loved me enough to pursue me and my heart. He wanted a closer relationship with me.

Here is to a new year and a new realization of who I am in Christ.  

A Roller coaster: One mom's view, one child's fight

When I was in high school theme parks were one of my favorite places to go. I especially loved the roller coasters, the higher and more twisty the better. We would ride them over and over again. The thing about roller coasters is, once you ride them multiple times you know where the next turn is going to be. You know which way to lean your body and where the bumps are. But that first time on a new roller coaster is thrilling. The thrill of not knowing when you were going to be plummeted down a hill or thrown upside down. The thrill of that first big drop at the beginning. Each turn is a new surprise.

That was then.

Today if you were to ask me how I feel about roller coasters it would be a different story. See, I went to a theme park last year, and something had changed. I didn't really love what I couldn't see in front of me. I didn't like not knowing what was ahead, I didn't like the big drop at the beginning of the ride. And although the thrill was still there, the fear was there more. (Not to mention the HUGE headache I had just after a few rides). Would I go back? Yes. There is something about the thrill that draws me to it. Would I say I love it? No. I don't love theme parks as much as I once did. 

Now I am on a new roller coaster. The roller coaster of having a sick child.
Nothing. No one. Could have ever prepared me for this roller coaster. It has been a ride that won't stop. (And won't stop until we see Jesus). 

This roller coaster started the moment that I found out I was pregnant. I was on the up side of the roller coaster. Going up higher and higher; preparing for a new baby and all the excitement that comes with that. And then came the top of the first hill, you know the moment. When you are in the very first car in the roller coaster and you are peering over the edge just waiting for the drop. Our drop came at our first ultrasound (which you know about, or you can read about in previous blogs). The fear came when I was plummeted down that first blow of hearing the words "there is something wrong with your baby's heart". I was falling, I couldn't control how fast this car was going or where the next turn was. I evened out for a bit while I prayed that there was a mistake or that God would do a miracle and heal his heart. Then out of no where the next turn came jerking me back and forth as I learned just how serious this heart condition was. I had another upward hill when he was born and went through his first surgery so well. Just as soon as the hill started, it stopped. Flying down another scary drop as I waited 14 hours in a waiting room while he had his 2nd surgery. After a few more bumps and turns I was sure the ride was coming to a stop. Ever ridden one of those? The ride is finally stopping when out of no where another big hill is before your eyes. Up and up I ride again. not knowing what's on the other side. At this point I was home. Home with my family and I thought home to stay. That's when I got to the top of that hill; looking down, yet again, at a scary prospect. A whole other set of bumps and turns and twists that I couldn't see the end of. And here I am. riding these bumps and turns not knowing when I will have our next respite. Knowing that, at any minute, the ride could take a huge turn and throw me in a different direction. 

All I can do during this ride is hang on. 
And all I have to hang on to is truth. 

Truth that the One who created my son loves him more than I ever could. 
Truth that there is no twist and turn in my life that was not perfectly placed there by the Creator himself. 
Truth that this roller coaster I am on will be done one day, and although I can't see that day I know it is coming! 
Truth that I need to use every moment that I have in every situation that I am in to bring glory to God. 

(Those truths are really easy to type out...NOT easy to actually live out)

Here's to the next few bumps and drops and turns and twists. May I ever be looking up. 

Dear Mom judging me from afar...

Dear Mom to that perfectly healthy child,

 You may know me, or you may not. 

We are possibly friends; or we are just seeing each other in a public place. 

And when you see me feeding my baby a french fry or a chip you are probably judging me. 

But what you may not know is that up until this point my child has not eaten anything. 

What you do not see under his clothes is a feeding tube that he has been pumped into for most of his life. You do not know the struggle it has been inside our house to get him to even put food to his mouth. 

You share all of your  healthy, freshly made baby foods and how your child will eat anything you put to his mouth. 

I see sadness, longing, a desire for my baby to be able to eat like that. 

You see a mom who is maybe lazy in her parenting, a mom who just goes to fast food and doesn't care what she feeds her child. 

But know that I am there because my child is on strict orders from his doctor to not lose any weight, he needs to gain all that he can. So, if a french fry is going to help him bulk up a little, then that's what I'm going to feed him! 

You may know me, we may be friends. 

But please don't think that you know the struggle. The fear of your child not wanting to eat. The pain it is to see him struggle with just a bite. The sadness that comes with turning on that pump one more time because he didn't drink enough from his bottle again. 

Let's rejoice together in the little things of parenting! 

Let's celebrate our children and rear them to love, respect, and honor others.

Sincerely, A Mom to a CHD survivor and tubie owner

Sitting in the Dark

     I really wish I could describe to you what it feels like to sit in a dark room 

and watch your child's heart beat on the screen. 

I did that today. 

And as I sat there tears came to my eyes. 

I wished I could put into words what I was feeling and seeing.

There was fear, of course. Fear that maybe something would be seriously wrong, fear that his heart would not be functioning the way it should be.

There was excitement. It's amazing to watch what God has created. And it is also amazing what he has enabled man to do so that my son can be living right now. 

There was sadness. It is SO HARD having to watch your child go through something hard. It makes my heart so sad to think about all that he will live with the rest of his life. 

There was joy. Such joy in seeing the way God has brought us through so far, and joy to know that we can trust him in the future.

There was confusion. No matter how many echos I see, I am still SO lost at what goes where and what I am looking at (although I am much better at it now than a year ago).

As my emotions ran wild, I tried to remember all I was seeing. 

The room is dark, all the lights are off and the blinds are closed. 

My son, laying on a huge bed and sedated so he wouldn't move. 

The machine that the technician uses to take all the crazy pictures from every angle imaginable.

The screen that shows his heart just beating away.

The technician (I always watch their faces to try and read what they are thinking).

Then there is the time when the tech leaves and you sit there waiting for the cardiologist to look things over. They check to make sure they got all the pictures needed to get an accurate view of the function of the heart. You sit there and wonder what is taking so long. Why aren't they coming right in and saying everything is fine? What are they looking at so closely? 

When the doctor comes in they usually want to take a look themselves. So you wait some more. And this time, you try to read the cardiologists face. What are they thinking? Is something wrong? 

In our case today, we got such sweet news. Heart function is great, it is strong, and doing what it needs to do. We have nothing to worry about. 

I know that this won't always be the case. My son will always live with heart failure. He will never have a whole heart. There is always the chance that something will stop working right. There will be a day when we walk away from an echo with not so good news. And when that day comes I pray that I will continue to say that God is good. 

We give all glory to God for our echo today. He is the giver of life and he sustains life.

I don't know if this was a very clear picture or if this made much sense, 

but it was so on my heart today so here it will stay! 

Seasons (of life)

Have you ever wondered why you are in the season of life you are in? What could God possibly have to teach me through this?

No? 
Just me? 

Well, that is the season I am in now. The season of "Why do I have to go through this season".

Those that know me know that I am a people person. I love having people into my home, I love meeting people places, I love going to church with my church family, I love just getting out and doing stuff with my boys.

Cold and flu season with an already sick baby changes life. 

I have never been a germ-a-phobe. Having a baby that could be hospitalized because of a cold has kind of changed me a little on that.

I have always loved working with kids. Ever since I was young I enjoyed working with those younger than me. I can't do that now. I don't get to do something that I love to do because I love my son more. 

I hate having to tell my older two that they can't play with their little brother because they have runny noses.

I guess what I'm getting at is why? Why does someone like me, a people person, have to go through this? Having a baby go through what our youngest has gone through was easy for me to trust God. This season? This time of having to stay home and not see people and keep people away from the baby is HARD! 
What does God need to teach me by keeping me cooped up in my home with my three crazy boys (and a husband who works from home). 

It's amazing how it is so easy to trust God with the big things and so hard to trust him with the little things. 

I know that I need to just be thankful. And I am! I am so thankful that I have 3 boys to raise to be great men. I am thankful that my husband can work from home and help me out during the day. I am thankful for our third-born and all he's been through and that God has seen him through his rough start to life. I am thankful for our home. I am thankful for my Bible study (so I can get out of the house!). 

I know that it is going to be a long winter if I just complain the whole time. 

I will choose to be thankful. 
I will choose to be joyful.
I will choose to love God first then my husband then my boys.
I will choose to enjoy this season of life. 
I will choose to praise and not to pout.

HOME

Home.
Such a small four-letter word, but meaning oh so much more at this stage in my life.

I never called Wisconsin my home. I was born and raised in Minnesota, so a Minnesota girl I was always going to be. If I had to live in Wisconsin I'd do it with part of my heart one state away.

And then there was that moment when my home was taken away.
Oh, the building was still standing and the yard was still in tact. The rooms were waiting to be occupied.
When we had to say bye to our home 5 months ago we didn't know how long we would be gone. We assumed a month, thought it may be more. But never dreamed that it would be 5 months away.
I came home one time in those 5 months just for a short weekend (to change out my winter clothes that I had in my suitcase for summer ones). That weekend I got a taste of just what I was missing.
I sat in my backyard by the fire and watched my boys play. I listened to the quite. I looked out on the rolling fields that surround our home. It was wonderful, peaceful.
Yet there was something missing. Someone missing. Our baby was still in the hospital, so I couldn't fully commit to being home. I couldn't enjoy it fully.
We went back to Milwaukee and lived our lives there. Always knowing that we'd be home someday, but never dreaming about our life when we did. Fear made it so that I wouldn't think too much on home. I was scared of caring for our new baby who just endured life-altering surgeries. Scared that the older boys would hold this time against us. Scared that I just wouldn't be able to do it. Scared that home wouldn't be the same and wouldn't be what I dared to dream that it could be.
That last fear came true.
Home has changed.
We are now a family of five. We have been so blessed to welcome Aaron into our home. It is like he has always been here.
Home is so much sweeter. The little things become so much more important. Like playing with my boys on the swing set instead of just having them go out by themselves. Like reading that book one more time. Like meal planning and cooking those meals.
I cannot even recall a time when Aaron wasn't part of our family. He just fits. And it's truly been amazing being home.
I never knew how much I would miss it until it was gone. I never knew how sweet it could be until I couldn't have it anymore.

Contentment, I have found, is not something that you can buy. It is found when you are truly thankful for what you have.

Home will never be the same. And I am so thankful for that.

Last Sunday my pastor asked if there was ever a time that you missed home. And of course, it being our first Sunday back I started crying. He then got to share all about Heaven. Our eternal home. I pray that now I will not become too focused on my earthly home that I get my focus off our Heavenly home. If this was so much sweeter to come home to, I cannot imagine what our eternal home is going to be. How sweet it will be there. How much it will just feel like we were always supposed to be there all together.

This is my home. It will never grace the pages of a magazine, or even be fancy enough to take pictures of the inside. It will never be as clean as it should be. It will never have every single thing in its place. But, it will be home. It will be a safe place. It will always have its doors open to company. It will always have love inside.

Northern Wisconsin will be my resting place. It's beautiful here, you really should come see it. (Seriously, any time. I love visitors! - Just maybe give me a 10 min warning so I'm not still in my pajamas. Hey, I've got three boys, what do you expect?!)

Missing the Mundane

Mundane: lacking interest or excitement, dull

A while ago I was part of a Bible study where we read a book all about living through all the mundane things in life and doing it for God's glory. That even being "just a mom" can be done to glorify God. I believed it and I tried to practice it. But the mundane life, by definition, is just dull. The world wants us to think that we need more. More than where God has us, more than what God has given us.

Having lived in a hospital the last 4 months has made me really miss those mundane moments of just being mom.

I really cannot wait to...

  go grocery shopping
  send my boys outside to play
  do a sink full of dishes
  clean up toys that my boys have played with
  sit in my backyard
  feed a baby (without having to tell someone how much he ate)
  show off my new (not so new) baby boy
  make a meal
  do a house project
  sleep in my own bed
  have a campfire

My list could go on.

I know that God has a purpose and plan for these last few months, and I know that I may never know what that purpose was. But if I will have a big take-a-way from this time it will be to enjoy the mundane. Not just get through it, but really enjoy it. Because you never know when it will go away. You never know what will happen tomorrow or in a week or a year and you'll be begging for those mundane moments al over again. I know I am.

Now, once we get home and I actually have 3 boys to chase around and get in order and make food for and do laundry for and help steer them in the direction of being kind to one another, I know that I am going to forget. I will forget this moment right now sitting in a family lounge in the hospital as my baby has another surgery. I will forget this feeling of desperately wanting the mundane. So remind me, when you see me complain or whine, remind me where I was a few months ago.

But for now, I cannot WAIT to go back to my mundane life of being wife and mommy!