Heartbroken

I woke up to heartbreaking news this morning. I found out that Samuel lost his fight with mito last night. He is now dancing in Heaven, eating ice cream and brownies (as his mommy Missy put it). To say that I was shocked is an understatement....this little boy has fought through so much. We met Samuel Knight this year, during 2010 I got to meet him several times, along with Mom, Gina, Chris, Mrs. Mia, and Mr. Ricky, and this little boy was truly amazing. I met his mom through the March of Dimes, and this is one of those connections that are so unlikely, but later on I have thanked God over and over that I met this wonderful family. People often tell me that I am a super mom, that I do so much for Tucker and they wonder how I do it all. Well Missy and the Knights are one of those families that I look up to, and wonder how they do what they do, and keep a positive attitude through it all. I have gone to Missy so often during this past year (starting in October 2009) for questions, advice, and guidance on the "big monster", mito. I knew Samuel had mitochondrial disorder, and that Tucker likely had it as well, even though their cases present so very differently. Last October, I attended my second Share Union, which is an annual convention for NICU families, held by the March of Dimes. It is very important for me to see these women (and few men!) face to face because they really get what the NICU experience was like. Well there are also a few women who understand what it is like to take your child's problems home with you from the NICU, and watch them get worse, not better. Missy, Kate, and I joked about how our three boys lick their snacks and dinner instead of eating it, and how we order their own burgers and food, only to throw it all away. I just looked at a picture of Samuel, he is wearing a "hungry" shirt; Tucker has the same shirt. It was so nice to be around other moms who had encouraged me online for years, and Missy and I discussed Mito in depth that weekend; this is the point when I decided to look at further testing in Houston. At the Remembrance Ceremony for our little ones, Missy was chosen to read a speech or poem. I went up with her and stood next to her as she read a poem she wrote about how proud she is of Samuel....and her words brought me to tears. This week is Mitochondrial Disease Awareness Week; last week the Mito Clinic held a big fundraiser and awareness event in Houston. Missy and Ben shared their story, and she read the poem she shared with us last October. I am sure there were no dry eyes in the place. Missy and her family opened up their home to us, and gave us detailed directions for every part of our visits. In March, Mom, Gina, and I stayed at the Knights' house. Meeting Samuel was such a big deal for me; I had prayed for him for so long, and he was such a sweetheart. He was very interested in what kinds of medicines I was giving Tucker and if they matched up to the ones his Mommy gives him. He also wanted to help me feed Tucker, since he was apparently an expert:) In July we saw Samuel and Missy twice in one week, he was in the hospital and Missy said she had been praying for me. That was the day we found out Tucker had mito....I can't really express how much it meant to me that she was sitting there with her child in the hospital, and she was praying for me and offering me advice, helping us out with navigating the hospital and getting Tucker's labs drawn. Samuel spent years hooked up to monitors and tubes, with many many meds and much pain. Samuel endured more procedures, tests, and pain in his 4 years than most people can imagine. He amazed his parents and doctors over and over with his positive attitude and funny personality. Missy and Ben have done literally everything they could do to give their two kids the best chance at healthy futures. I doubt they ever took one day, one milestone, or one breath for granted. After four years, it just wasn't enough; in the end, the disease won. Samuel's fight is over, and he can now run around in heaven, with no tubes or wires to slow him down, no pain or worries to bother him. His family's new journey is just beginning; please pray for them as they try to move through their grief and this new "normal" if that is what to even call it. Also please keep his sweet sister Lauren in your prayers. She is 5 years old and just started kindergarten. I only saw Lauren and Samuel together once; and Oh my Goodness, what a pair! They giggled and loved eachother, it was one of the sweetest sights. I know that she is old enough to understand that Samuel is in heaven, and my heart is breaking for her right now. Please pray for the Knight family, and pray for a cure for Mitochondrial Disease.