Continuing to Inspire~ One Tough Mud Race...

Acts 20:24
However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me—the task of testifying to the good news of God’s grace.

I thought it would be good to start exercising again and running is the way I learned that helps me cope with things. Pounding the pavement, praying, singing, going to exhaustion and pushing a little further... I think "If Shaun could put up with what he had to, I can keep my legs moving a little longer."

I decided soon after he passed that I needed a goal to reach so I would keep up with running. My goal was doing a mud run. Before this, I hadn't experienced a mud run. I am addicted now. You run a set course, in my case I look for 5K's, that have obstacles thrown in. It breaks up the running, adds a new set of challenges, both physically and mentally, and is fun!

I got a team together, the SuperShaun team, to run in Shaun's honor, made up of friends, neighbors and family. We even had a cheering section. We had Joe, ,Marcy, Joyce, Me, Mike, Jeremy, Amy and Janice run. We all were at different physical levels so we did our best but came across together at the end. It was a blast. I finished 3rd overall for women, but not sure the time. The other two girls started before me so who knows what would have happened... that wasn't the point of the race though. It was to get dirty and see how far you could push yourself.   Like I said earlier, I used Shaun as my inspiration and will continue for the rest of my life.

 Slip and slide

 Mud pit

 Mud Mountain

 Supporters

I am now signed up for another mud run, LosiLu in Fredrick, MD. Shaun will continue to inspire this Momma and push me to continue fighting the good fight and racing to the end. I love you SuperShaun!!

When an athlete decides to run a marathon or race, he or she commits to serious training. Why would it be any different with our spiritual life? These passages challenge Christians to understand the Christian life as a race: a long-term commitment that is more successful when we "train" ourselves daily with Bible study, prayer, and other spiritual disciplines. Running helps me put spiritual truths to my life.  When Jesus was talking about taking up your cross and following Him, it wasn't pretty. He was spit upon, dirty, whipped, thirsty. This is how I felt during the race.  But, like He did, I kept putting one foot in front of the other, pushing to the end. I hope to inspire you too, not only to get healthy physically but also spiritually as life is the race that really matters.

2 timothy 4:7

I have fought the good fight, I have finished the race, I have kept the faith.

1 Corinthians 9:24-27
24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.  Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a man beating the air. No, I beat to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.

Music...

Music has played a vital role in much of this process with Shaun. When he was in the hospital we played music. He calmed to music of his aquarium. The first song he really connected with a song was "Row, row, row Your Boat" with our favorite teacher at UVA. She taught him that it went this way:

Row row row your boat, gently down the stream,
if an alligator comes, don't forget to scream, "AAAHHHH!!"
She would then put Shaun's hands on his cheeks and while he could he would mimic the sound and screech too. It was beautiful.

We had music therapy through Blue Ridge Hospice to try and help him feel better. Leigh is amazing. We would mix things up a lot, from playing guitar to other musical instruments  to listening to recordings and playing with colored scarves. He loved the ocean drum the most. Our favorite songs to sing to him were "Jesus Loves You," "You are my Sunshine" and "Over the Rainbow". Every time we met we sung these. He, even up to the end, loved to feel the vibrations of  someone strumming the guitar. Ms. Erin also would play the guitar for him and sing lovely songs, "10000 Reasons" by Matt Redman being one of our favorites.
Part of my healing process has happened through the continual playing of music. The songs that mean the most to me right now, here where I am are "I can only imagine", "Homesick", "I will Rise" and "Dancing with the Angels". These are amazing songs most of being in Heaven. I pray and believe that he is having a fantastic time with his sister dancing and singing with the Angels.
Shaun's swansong is "This little Light of Mine." The name says it all. He is a little light in a darkening world. His life points to Jesus. His spirit, his love, his eyes, all show of the Father up above.
"This little light of mine, I'm gonna let him shine.
This little light of mine, I'm gonna let him shine.
This little light of mine, I'm gonna let him shine.
Shine, Shine, Shine."
"Shine until Jesus comes, I'm gonna let him shine.
Shine until Jesus comes, I'm gonna let him shine.
Shine until Jesus comes, I'm gonna let him shine.
Shine, Shine, Shine!"

these days are hard...

I don't know where to start... Going through, day by day, swimming lessons with the boys, dinners, lunch, laundry, sweeping, working outside, playing and running with the kids... these things are all good, they are all needed. But when the quiet comes, my heart starts feeling the pain, the loss, the emptiness of my "Bugs." I miss him so much in those moments. Or in the moments when I look around and other mom's are holding their children. I feel the empty arms. I look back at pictures, video clips and in the recordings of my mind. I say, if I knew what I know now, how much more would I have done to make those last moments better? Would I have sent Stephen to school the days prior? Would I have let the nurses stay with him instead of me sitting up with him? I should have rocked him more, sang more to him, kissed his sweet face, memorized it more. One of the things I hate the most is that my memory is fading a little... that I don't see the image of my baby as sharp as I used to. I can't feel him give me kisses, grip my finger, or make his terridactal sounds. Yet, I do remember so much, and am so thankful for all the pictures and video clips we have together. I wish I had more of Sarah. The big boys miss Shaun so much too. Scottie at night blows kisses to his brother and then "catches" and rubbs in the kisses Shaun sends back to him. He cuddles in his "big Blankey" to be hugged by Shaun. Stephen cries most nights to sleep, missing Shaun and wishing he could have met his big sister. I have him write or draw and this seems to help some. He also has one of Shaun's blankey's and a heart made from one of his onesies.  But they know he is missing and I really don't feel like I am equipped to help them through when I am missing him so much too.

Death has become a reality to them yet they are to young to really understand it. Scott says he wants to die so he can go see Shaun in Heaven. Really he just misses his brother and doesn't know that it means he will not come back. The other night, I was in the basement after putting the boys to bed and Scott woke up. He looked around for me and couldn't find me. Then when I went to him because he was crying he told me that the thought I had died and he was alone. This was hard to swallow. He really doesn't understand. At swimming lessons, I went through our pool bag and there was the stuff we used to tape up Shaun's tube so he could get into the water. I couldn't throw it away but it is so hard to look at. The boys noticed it too and I redirected them instead of being sad, we decided Shaun must be swimming in Heaven, in a pool or a fun river hole with all the animals. Scott said he would teach him one day when he got to see him again how to blow bubbles. I love their innocence and pure love for each other. When swimming lessons were over today, Stephen lead Scottie back to me, hand in hand, smiling and laughing all the way. I know God gave me these two special kids in the middle of the others so that I would be able to make it through, and have a glimpse of what we mean to our Heavenly Father. Shaun and Sarah both finished their tasks here so quickly but really I am the lucky one to have been able to call them my children and be charged with their care for their short time. Until I see you again, sweet Children. Your mommy loves you with all my heart.

What good is it for someone to gain the whole world, yet forfeit their soul? Mark 8:36 NIV

Shaun taught me that time with people, relationship, love, those are the things that matter. Not what your ability is, what you have or don't have, its what is on the inside that counts. God is the same way. He loves you for who He created you to be. Shaun was created to touch many lives. I will do my best to see that mission through.

John 14 “Do not let your hearts be troubled. You believe in God; believe also in me. 2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”

This section of John 14 is comforting to my soul. Jesus is telling us that He has gone to prepare a place for us, His bride! I will be so excited on that day He comes back and wipes away every tear and takes away all the pain of this world. I wait in eager expectation of His return and our reunion with those gone before us. I can't wait to see Shaun and Sarah, what they look like, sound like, feel like, whole and in new bodies. I can't wait to meet their sibling, the one I lost before our pregnancy with Shaun. I can't wait, but I will. And I will do my best to make every day a good one for us left behind to finish our work, run our race, and make great memories while doing so.

25 “All this I have spoken while still with you. 26 But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Thank you, Jesus, for leaving us the Holy Spirit to guide us. Help me to be still, to listen with a willing heart, to be open to your leading. Forgive me when I am stubborn, if I am not quiet, and when I am angry. Pour out your peace upon me. Thank you for that gift. Thank you for teaching me what Your peace that surpasses understanding really is. Help me to continue to hide in Your wings. In Jesus's name, Amen.

Shaun's Memorial Garden

This weekend we created a garden in our back yard as a memorial place for reflection and remembrance. It is extra special as friends of ours have donated flowers or plants from their own gardens to plant in Shaun's garden. Grandma Mari and Papa Tim also contributed plants to this garden. I hope to get a bench for sitting and maybe a statue or bird bath also. Peter wants to build a trellised arch for it too.  I hope to use this area for time with Jesus, maybe my quiet times in the morning or sit out there when I am really missing Shaun. The boys helped me with their shovels digging, Mike helped me de-grass the area and pick up the stones, and Peter ran the tiller so the clay wouldn't be so hard for the plants to grow in.  I still need to mulch and stone the path, find the right ornaments and bench but I can't wait to have the area completed! Many of the flowering plants attract butterflies. Stephen told me the other day that the almost all white ones are angels.... I really don't think so, but I am glad he has something to hold on to. We miss you, Super Shaun!

Philippians 4:8

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

John 16:33,  I tell you these things so that in ME you might have Peace.  In the world you will have tribulation, but be of good cheer, I have overcome the world.
2 Corinthians 1:3-7
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. 6 If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. 7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.


In other news, its less than 2 weeks away from the fun Mud run 5K I am running for Shaun. Training is going well and I am looking forward to getting crazy with some great friends! June 29, here we come!

Shaun's 2ond Birthday....

We were able to have a 23 month birthday party for Shaun on May 10th. He was able to have a taste of the icing off his cake and then we shared it with the friends and family who came down and with the nurses and doctors in the PICU at University of Virginia who came to be close to our family.  Shaun wasn't able to make it to his 2ond birthday but this celebration with him was important to his mommy.

 Today, Shaun's birthday, started off with pouring down rain. I thought it was fitting since I hadn't been able to cry, God poured out Heaven's tears for me. As the day progressed, Scott and I was able to go help out with a lunch party for the 1st graders, Stephen included. Stephen loved having his little brother there with him, able to share some of what school was like, show him off to his friends, and share in games. Mommy helped serve the kids and then had a picnic with the boys in Stephen's classroom. After school, we headed to Monkey Joe's with Michael, Nicolas, Carson, Tyler, Anna, Hope, Matthew, and Abigail for some jumping fun for Shaun's birthday remembrance celebration. It poured rain again and we decided to go to McDonalds for dinner during one of the lighter breaks in the storm. At McDonalds, we had a couple of power flickers, some ordered dinner, then the power went completely out! Half had food and the other half didn't, including the Myers twins, Abby and Emily, who were able to join us. Since we had our food, I offered it to them and ran next door to Chic-filet who was also out of power. I explained our situation and they just GAVE me a whole bag of food including packs of nuggets, fries and sandwiches! JUST GAVE IT TO US!!! They definitely earned our return business. We all shared our food and no one went hungry... Reminds me of the story when Jesus fed 10,000. We even threw some away! Thank you, Jesus! We ended the night with ice cream on the way home and then the sun peeked out from the clouds...

Happy Birthday, Shaun Peter! 

We love YOU!

4 weeks....

God is doing amazing things through my little boy. He is teaching me full reliance on Him, its ok to be vonerable, patience with the big boys, how to rely on my community. He is showing me that our reach is much, much farther than we think, that one life can make a huge impact on our community, state and even world. I miss Shaun so much, not to mention that today we would be having a 2 year old birthday party for him since his birthday is on Monday. That makes the day suck. But the good still is that he is healed, in the arms of my Savior, the place I pray each of my children end up, so we can be together for eternity. This time, with Shaun's death, things have been dramatically different. When we lost Sarah, I had terrible empty arms, my world crumbled, I felt like the pits of dispare were all around me. While I miss Shaun, and I have a hole in my life that will eventually be weaved back together (but never gone) I have peace, comfort, hope. I can feel your prayers and for those I am truly grateful. Shaun, my little missionary, has put his mark on most of the continents, reached tons of countries, and has touched thousands if not millions of lives. People are donating to organizations that help disease ridden countries, companies and organizations trying to battle Mitochondrial disease, sponsoring children, pouring out love on their communities, on our family. It is amazing to see God's hands and feet work through tragedy.  I just wish it didn't take such a special spirit to cause a stirring in our hearts.
Pray for us this week, especially on Monday as first 'memory' days are hard not to share with our loved ones. We will sure miss Shaun this week. I am crying for the first time in a long time right now as I type this. It still feels like a dream and I need to wake up. Pray for my boys, that they keep loving wrecklessly, that they can keep talking about their feelings and we can be sensitive as parents for them. Pray especially for my husband, as he tries to lead our family but is broken inside.
Right before Shaun took his downturn, we as a Sunday School did Ann Voskamp's study, 1000 gifts.  This really helped my heart during this time and the time leading up to saying goodbye. One of the main things that she kept saying was "God is good and He loves me." To live Eucharisteo~thanksgiving. This changed my outlook on death (which seems to be taboo in our country), sickness, depression, and anger. If you look for something to be thankful for you will start seeing all the gifts you have near you all the time. This is where I am living. In thankfulness.

Jeremiah 29:11
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. "
Psalm 100:4

Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.

3 weeks.

Today is 3 weeks. 3 weeks since I held my baby, loved on his hands, caressed his face, eskimo kissed his nose, sang to him, rocked him, prayed over him... and all the other stuff like gave him meds, changed his trach, bathed him, combed his hair, all the normal things. I am having a hard time with the normal stuff to do, like take Stephen to baseball, school functions, or even having people over.  Everything I do reminds me that he his not here. But the really hard time is when his brothers cry that they miss him. This is what I feared the most. I feel so unequipped to handle these situations. I tell them it is ok to cry, to miss their brother. But Shaunie wouldn't want us to be sad over him. He is having a great time playing with Sarah in Heaven, seeing Jesus, playing with all the animals. Then we talk about what they might be doing, and about the fun things we remember doing with him here. This seems to help a little. I also feel guilt. This is because I can do so much more right now, I mean things I take for granted, like going to the grocery store. It makes me melt down on the inside. I haven't gone to the grocery store for months. Then I can. I wish I couldn't.  Some days are great. We get a lot done, have fun with the kids, make memories, just like I want to. I even took the boys to Stephen's "Around the World" night at school. It wasn't bad~ I just missed him. So I have started running again as a way of letting the feelings out. I am not good at it right now as it has been years since I ran but I am doing it and feeling a little stronger every day. An outlet is what I needed... I think. Time to think, or not to. Time to process things by myself, or not to. And getting in shape is a big goal... Since my Hubby is taking us (him and me) to Greece in September. This will be good. We will reestablish a relationship that has taken the back burner for too long. It is important. I look forward to it! Until we are together again... WE love you SuperShaun!!!

I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” 

Revelation 21: 2-4 NIV