The get to vs the have to

2 weeks ago Riley Rose passed away. She died surrounded by her loving parents on April 13 at 3am, while in a Texas hospital. She never made it back home. I’m sorry I didn’t update. I think I needed some time and a break. Witnessing what we are, I guess it takes it toll.  There have been so many heartbreaking stories of children fighting this disease that we’ve come to care about recently. And to tell you the truth, I have only just recently been able to put a name to something I have truly been feeling: survivor guilt. I don’t understand it in its entirety and I cannot really even describe its relevance but I do believe it is a real feeling and perhaps part of the recovery from trauma. And for me, it has partially explained my incessant pull towards following and praying for children and families who are in the thick of the fight, and are losing.

The other morning morning at church, we listened to a sermon on one of the hardest questions that could be asked: “Why does God allow Pain and Suffering?” If there is a God and He loves us, WHY? As you could imagine, there were many tears welling up in eyes all around us as well as in our own. Who hasn’t asked this question? 

Riley Rose’s mom writes a simple but powerful message here below that I wanted to share because it coincidentally struck a cord with me ad it was written same day as that mornings message at church. I think they are going to be okay. They didn't need the sermon we heard today. They are feeling it and living it and echoing it. Maybe God doesn’t “allow”....he experiences it ALL with us and promises us grace when we come through the other side. Without pain, how would we know joy. Just like without rain, there could be no rainbows. It’s the only way I can wrap my mind around any of this.

Oh and you guys, the very morning of that powerful sermon on why does god allow pain and suffering, Charlotte was among a group of preschoolers up on stage at the start of service to sing “Jesus Loves Me.” I mean, god’s timing is perfect even if we can’t understand it. I’ll try to include a video clip of her singing (for those getting this in an email and cannot click on the video then here is the link to paste into browser https://youtu.be/N-eXEZv-X-Q)

From Riley’s mom Kristin Sherman:

“About a year ago, I was talking to a friend and was running through my list: I have to do then, then I have to do that, then, and then and then………

She stopped me and said “you get to do those things”, and I paused and nodded and said, “nope you are right, I get to do this”.

I have breath and a little money and gas and a car and legs that work, I get it do all the things!

This simple shift changed my own outlook on life and it’s certainly keeping us together over the past few days.

We got to be her parents.

We got to hear her heartbeat for the first time on the ultrasound.

We got to watch her walk and stumble and fall.

We got to watch her laugh and sing and smile.

We got to hear her first words.

We got to hear her last.

We got to take care of her for the last 20 months.

We got to bath her, dress her and made sure she was safe and warm every day, up till the end of her life.

We got the privilege of sharing our faith with tens of thousands of people from all across the world.

We got to give her the very first bath.

We got to give her her very last bath.

We got to hold her as her body gave out and couldn’t take the toxic treatments any longer.

We got to be friends with thousands of “cancer parents” who like us were (and still are) seeking answers.

We sat in the room after she passed and watched as Dr. Watt cried and kissed her little head and promised no more pokes. We got the privilege of knowing that there are incredible people out there.

We got to go to several of the best institutions, the world over, and meet and learn from some of the smartest pediatric oncologists in the world.

We got to wipe our tears away, and the tears of many others.

If in all the things, and all the ways that this journey impacted our lives, if we can remember the good, we will be better. If we can remember the positive, if we can seek out God in all of this, we are better.

I miss my girl so very much, we miss our girl. The world misses her. We are broken, raw, bruised, incomplete, angry and sad. Cancer isn’t fair, and pediatric cancer is the worst. It steals so much, but we are trying to shift our perspective so that it can’t have any more.

Today we get to be with our friends in Texas.

I get to get dressed and see many, many people that loved our girl.

I get to sleep in a warm and cozy bed tonight.

Tomorrow I get to fly home and see our son.

Cancer didn’t win this fight – we did. We got the opportunity to impact the world and we did just that. Riley Rose impacted the world. Cancer asked us to do hard, horrible, horrific things and we did.

We got to do hard things.

We got to do this life.

This was the last smiling picture I took of her – she asked me to put makeup on her. I got to do my girls makeup one last time, and she smiled and laughed. I got to see her happy and fulfilled. This was Tuesday April 10th.

This is one of our favorite Michelle Jeffers photos that we love. This is just days after her diagnosis – she had already had one back surgery to remove her tumor and we were getting ready to start chemotherapy. We had cut her hair to help with not losing it all over the place. She (and we) had no idea what we were all about to face but again she was laughing and smiling and showing off.

We got to do this. We did it together with all of you, and we are grateful. We are so very grateful. The impact that our girl had, all over the world is not in vain. Her life matters. The life of every kid, every human, every person matters.

We got to do this life.