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!