Biking a mountain to normal.....

Lately I have been working through an internal battle. As a Mom everyday is exhausting. I realize because of some of the choices I have made my life is crazier than most. I chose to let all three of my children play soccer. I chose to let my oldest play select soccer that includes some travel. I chose to let my son try out for the Olympic Developmental Program for soccer, knowing he might make it and my life changes forever. But what kind of mini humans would I be raising if life were easy and simple.

However, I did not choose for Jack to be sick off and on his first three years of life. I did not choose for his ears not to drain, his tonsils to be too big and his adenoid to be such a nuisance. From 11 months old to three years old I surrendered him to a surgeon three times. Ten weeks after Jack's last surgery Madelynn required her open heart surgery. I know with 100% certainty I did not choose for Madelynn to be born with a congenital heart defect. Nothing about the last ten years has been easy and simple.

Jack has no tonsils or adenoid. He has scar tissue in his ears from multiple sets of tubes. Yet despite his imperfections I have almost forgot about those days. He was so young he doesn't remember them. If he does he has never talked about them. 

However with Madelynn her story is different. Madelynn was born with a congenital heart defect for which there is no cure. The last few weeks I have read or heard that line "there is no cure" more times than I care to remember. Madelynn's heart has been repaired. A repair is not a cure. For the last few years I have treated her repair as a cure. I have treasured her leaps and bounds forward and almost forgot about those horrible days eight years ago. One of my reality checks came when one of her doctors told me until she reaches puberty he is not comfortable releasing her. I have read so many stories about CHD survivors lives change as they mature.

In an effort to try and savor what we have today, we left town for our annual Thanksgiving Exit. I did not want my life to be consumed by what could be. It is exhausting just trying to be a parent. To be a parent of children with medical needs some days is too overwhelming. We have created a tradition during our Thanksgiving Exit that we ride to the beach by bike. When she was younger Madelynn would ride by bike seat attached to the tandem bike Phil and I would ride. In recent years Madelynn attempted the ride on her own bike, the first year, with training wheels.

I have never been more stressed about a bike ride in my entire life. Round trip it is just under three miles. For a 7 and 8 years old that is a haul. Her first attempt did not go as expected. We had to tie her bike to another to pull her the last few blocks home. This year Madelynn completed the entire round trip. She didn't even need help climbing up the draw bridge and over to the beach. I was so proud of her. When we were ready to leave the beach and made it to the top of the drawbridge again I made her stop and take a selfie with me.

If at some point down the road her body matures and her heart cannot handle the change I want her to know she did it. She climbed a mountain and made it down the other side. I want her to remember and see that I have proof she is a fighter. I know that her open heart surgery is not a cure. I know that as her body matures her heart and missing part of her aorta may not be able to handle it. Sometimes I hate being reminded that life cannot be normal. However, I have proof that just for a little while it was. 

TTFN~

When the stars come full circle......

When I was in my second year of college I made a decision to change roommates. It was the best decision I ever made for so many reasons. My new roommate was wonderful, such a beautiful person inside and out. She loved the stars. We had them on the ceiling. When the school year was over she took a few of those glow in the dark stars on a piece of paper and wrote, "The God who named the million stars knows your name and He loves you more than all of them combined. To this day I still have that piece of paper.

Currently we are travelling home from our annual Thanksgiving Exit. Most of you know Thanksgiving is my favorite holiday. Madelynn came home from the hospital a few days before Thanksgiving after Open Heart Surgery in 2008 and in 2009 was the first time we could take her out of the state. Today we are traveling home from this annual trip. We decided we would explore someplace we had never been so we stopped at Tybee Island, GA.

After dinner even though it was dark, we walked down to the beach. I am not going to lie it was so dark it scared me. You could not see your feet in front of you. The area was so uncommercialized it was a flat out black out. We made our way to the pathway and bridge to cross over the dunes and onto the beach. All the sudden in the darkness I looked up up. The sky was a satin black blanket filled with jewels that sparkled. I had never seen so many stars in the sky. I could have laid in the sand for hours trying to count the stars. Even though the kids and Phil were there it was as if the world had stopped. I could barely hear the ocean and I was standing right in front of it.

During that deafening silence I thought of my old roommate and her wise words. I can't tell you why I was so struck by her note so many years ago. But tonight I lived it in the beautiful darkness. As we are regularly reminded of Madelynn's journey coming full circle and being able to enjoy events at one point we never thought possible, tonight I lived my friends words. I know I am loved more than all of those stars combined. But when you see all of the stars and you are one little speck in this great big world it is a great reminder.

Hoping for some sunrise pictures in the morning.

TTFN~