Sweet Sam

I have written before about our sweet neighbor, Sam. He was born with hypo-plastic left heart syndrome. He has endured three open heart surgeries in his short three years of life. Sam is one of the cutest, smartest, and definitely most athletic little boys I have ever known. He loves keeping up with  all of the big kids in the neighborhood and is just the sweetest little guy.
God has been so good to Sam and his family these last three years. He has been able to live a relatively normal life despite having half a heart and having his surgeries to make the heart he does have functional for him.
Last week it was discovered that he most likely has a rare condition called Plastic Bronchitis. Plastic bronchitis is very scary and can have grave impact on Sam. His cardiologist here and his medical team at U of M are in the midst of figuring how exactly what this means for Sam. His family has been thrown into some pretty scary realities including the possibility that Sam may need a heart transplant sooner than later.
Its been pretty somber around here. All of us who have come to know and love and live  in community with Sam sometimes forget that he even has a heart condition. He lives such a vibrant life. He has so much energy. He brings everyone so much joy!

This morning I read on a friend's status a devotional from "Jesus Calling". It said the following,

"Stay calmly conscious of Me today, no matter what. Remember that I go before you as well as with you into the day. Nothing takes Me by surprise. I will not allow circumstances to overwhelm you, so long as you look to Me. I will help you cope with whatever the moment presents. Collaborating with Me brings blessings that far outweigh all your troubles. Awareness of My Presence contains Joy that can endure all eventualities." 

I got teary reading it. It was perfect for Jaime and her family and for all of us. I posted it on Jaime's wall. I spoke with a mutual friend of ours later in the day and discovered God has brought that devotion to Jaime's attention three times in the past couple of days. WOW! That is what I love about our God. He knows as humans our tendancy is to freak out. He knows that even though we are faithful we get scared, especially at the unknown. He also knows sometimes it takes three people to drive His words and promises home.
I am still sad that this medical crisis has developed but I stand strong in knowing what that devotional says is true. I especially love the last sentence,"Awareness of My presence contains Joy that can endure all eventualities."
Please pray for Sam and his mom and dad and two sisters. Pray for his medical team, that they would have wisdom beyond measure on how to treat this plastic bronchitis. 

Trek Atlas

I have never hidden the fact that mothering has definitely gotten the best of me at times. It has brought my weakest characterisitcs to the surface. It has taken me to my knees on more than one occasion, that's for sure!
Over the years I have had the priviledge of reading several mom's blogs who are struggling with their children's illnesses. I have read blogs of mother's who have lost their children to cancer and other random diseases. They have all touched me in unique ways. I have lifted them in prayer. They have all, in different ways, taught me something about how to approach parenting and mothering and faith, with fresh, grateful eyes.
A few months ago  I stumbled across a blog about a baby named Trek Atlas. Trek was born with a rare genetic disorder called Niemann pick disease. It is a devastating and cruel disease that is fatal by the age of three. Trek's parents Chelsea and Jarrett and their other two sons had been planning on traveling abroad with their entire family after Trek's birth. When they discovered that their son was going to die, they had a choice of what to do with their lives. They had to decide whether or not to continue with their travel plans or make a new plan to accomodate their son's fatal diagnosis.
In my opinion, they embraced life. They knew their son was dying. They knew they wanted to show him the world. And so they did! They traveled to six different countries. Even if they had remained in the United States there was little the medical community could do for Trek. Comfort care was really the only option and I guess Trek's parents figured that they could provide comfort care he needed while exploring Hawaii, Texas, Japan and Thailand to name a few of the places little Trek was able to see.
According to the blog, Trek was constantly in his momma's arms. His only source of nutrition was his mommy's milk. He was most comforted safe in her arms. Apparently he saved his most spectacular smiles for his daddy:) On June 21st, little Trek left this world. My brain knows Trek is in heaven. He is no longer in pain. He no longer has a fatal disease. He is safe and cradled in the arms of Jesus. But the mom in me can only imagine the horrible pain Trek's mommy is feeling. I can't stop thinking about how her arms must ache for her sweet,sweet boy. I know she must want to see his sparkling blue eyes one more time. His daddy can't imagine he won't see that sweet smile again on this Earth. His brothers, who are young must be reconciling their grief in their own ways too. The family is in Thailand, which was there dream but I can't help but wonder if they want desperatly to be with their family and loved ones here in the United States? I pray that don't feel as far away as they are.
Trek's story has taught me that we really do only live once. The way his parents embraced bad news and decided to continue to live life with adventure is inspiring. We all can learn a lesson through Trek's story.
The same day that Trek died I read an unrelated story about another little boy who died. His mother's only wish was that families all around the world would have banana splits for dinner. That through this simple treat you are creating a lasting memory. I have to admit that when I do this my kids will surely never forget it. It is a small gesture with large symbolism. It screams to your kids that we can break the rules. We can decide to do something special for our family. Mommy can be fun.
Sometimes I think it's sad that it takes the death of 15 month old to get my priorities straight when it comes to parenting and being grateful for my kids. It shouldn't take a tragedy for me to realize what blessings God has bestowed upon me.

Dang!

Dang is the word that comes to my mind when I think of what I felt in church yesterday. We've been going to a new church for about two months now. The kids love it. Jeff and I have liked it. To be perfectly honest, we've been in a rut this past six months.  When we left our previous church it took us awhile to get our bearings. I can't speak for Jeff, but I know that I let the irritation of why we left our last church rub like a bad blister. I just let my emotions and feelings about people and circumstances that let us down fester. I refused to pray about any of it. I wanted to be irritated. I just couldn't let it all go. I certainly had no intentions of giving it to God. Well you can guess how that ended up? With me being miserable. It's funny to me how many times a person can continue to make the same crappy decisions. How have I not learned this lesson? I can't even begin to answer it. Well, that's not true, I can. I know exactly what the problem is. If I look through previous blog posts over the last six years I am sure I will find at least 50 posts expressing these exact same sentiments. Uggh, I can barely stand myself right now!
Thankfully I was exactly where God wanted me to be yesterday. The series our Pastor is doing is called, Follow Me. Yesterday, Jeff Port talked about following God and how Satan never picks on those who aren't living up to their Christian potential. Satan knows better than to bother with people like that. Now  I won't say that I am fond of the idea of Satan attacking me but when Pastor was talking, I felt such conviction. I take no chances with my faith. I live for myself. I am not overflowing with Christ. I am ill-equipped spiritually and in many other areas of my life as a result.
I won't go on and on about my plans for renewal and recommitment. I think, this time, that will remain between me and my God. I am hopeful that the convictions I felt yesterday remain shouting in my mind each morning when I am tempted to put off yet another quiet time. I am prayerful that one day of practicing good spiritual habits will turn into all of my days. I am confident that if I fill my mind and time with holy things, I will become holier.
One thought terrified me more than any other yesterday. It was that when I die and meet Jesus, He will say, " You could have done so much more for my kingdom. You had so much to give but you chose to live for yourself". Ouch.