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Change is inevitable in most things in life. Trauma and loss will change who you are at the core. Up until losing Madi, I mostly thought in the future. I think that is common, even as a child we think about what we will be when we grow up. I remember thinking about what I would name my children before I was even old enough to really like boys. When Madi was sick and waiting for transplant we kept our minds on the future. When we were discouraged we would think about how she would be able to do all of the things she missed out on. She would take her kids to Cedar Point again and swim again. She would be able to get dressed without taking a nap and she would not need to drag the oxygen tank around anymore. Once she had the transplant I would dream about her getting married again to a man that would value her above all things. I even had it planned that he would propose with a Tiffany ring in a Tiffany blue box (her favorite color). She was mainly focused on being an active mom and going back to school, starting a career, helping others.

But now, I find my mind in the past, I discipline myself to keep it in the present when I need to and I can’t even think about the future, except to cling to my faith and that one day we will never be separated. Although I still feel Madi with me, it is in the past that I can see her and remember her voice, her laugh, how she feels and smells. People say after loss or trauma that we have a “new normal.” I know there are no words to truly describe what life is now but there is nothing normal about this and for some reason that phrase alludes that I am static. I am anything but static, I am changING.

We took our first camping trip with Madi when she was 1, she hated the tent. If we got near the tent she would scream. It was late and rather than make the whole campground suffer we drove around until she fell asleep and then quietly tucked her into bed between Matt and I. She woke up the next morning and was happy and her fear of the tent was gone. We had many more camping trips and now we treasure those memories. We have video of teaching her to catch a frisbee, unfortunately she caught it with her face, I was holding the camera so it was all Matt’s fault. Some of my favorite memories was driving to Bull Shoals Lake in Arkansas in the pickup truck and she would wrap her arms around Matt’s arm and fall asleep. Hours were spent in the lake with our black lab, Gabe. He would spend his time piling rocks on the beach only to have Madi throw them back in and he would start over. Gabe loved the water and we would tie him to her floaty and he would pull her all over and she would laugh. We went canoeing in a river that was cold year round and Madi had fallen asleep on the cooler and we tipped a little and she fell in the water. That was not the wake up she expected or appreciated. Seth came along five years after Madi we graduated to a larger tent and cots but still went to our favorite spot. It was a time to get away from work and the world. Some of our favorite family memories have included a campfire, tent, bikes and water.

Madi told us a few days before she passed that she did not want us to be sad forever and that she wanted us to give Adi and Brenton the beautiful memories she had as a child. So we bought an RV and headed out on our first road trip to Maine. Its kind of laughable that we forgot about all of the annoyances and work that goes along with camping. But isn’t that how life is, the truly great things are always going to come with a cost? Birth comes with labor pains, children test our patience and so do vehicles (sorry Matt).

In the movie RV, Robin Williams says “if you ever want to really find out about yourself, put your family in an RV and drive.” I say if you really want to find out about yourself put yourself, husband, two kids and three dogs in an RV and travel 2 full days to your destination. There was some testing of our patience and honestly, we kind of failed. Both Matt and I did some soul searching and some praying about our attitudes.

Madi once posted that although she had to accept the limitations that her disease put on her, having joy was still a choice. I have a choice, even in my grief, to be purposeful and choose joy. That doesn’t mean I ignore my grief or loss but I can feel the difference between grieving and bitterness. I continue to pray that God will allow me to find purpose in my pain. I know that this is the only pathway to healing and away from bitterness. There were plenty of annoyances and test of patience with our own children and camping but those were not the memories that we remembered. I realized I was making the wrong choice, yes they were going to test my patience but it was worth it to have all of those wonderful memories with Adi and Brenton.

Bar Harbor Maine

The memories we made, Adi and Brenton learned that the water is really cold this far north, Brenton rode his bike without training wheels for the first time. The kids made friends with other campers, some live in their RV full time. They met families from Australia, Newfoundland, and Canada. Adi convinced a little girl at the beach that she could control the waves and she was actually really convincing. They tried lobster for the first time, we paid them 50 cents to use in the arcade but they tried it. We watched a jellyfish wash ashore in Bar Harbor, we laughed at their jokes that really are not funny but when they ask, “was that a good one?” I laugh every time. Did my heart hurt and did I cry? You bet I did, even the most perfect moments have that underlying loss. It can’t be helped and while I won’t push it away, I don’t let it steal our joy either.

Thank you Madi for challenging us to be the best version of ourselves now and to continue to find joy and move forward in our faith. It is a privilege to share you with your children, to instill the same faith that gave you peace and joy, in them. Madi shared this verse with me during her last stay at the Cleveland Clinic. She was battling for her faith and I believe she knew her reality before the doctors shared the truth.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

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