Wednesday, September 29, 2010

For Samuel...


Until we meet again, my little friend...

Tuesday, September 28, 2010

Grief


When I was pregnant with Abby, I remember praying daily that nothing would be wrong with the child that I was carrying inside my womb. I have a distinct memory of putting my head on the steering wheel of my car at a red light one day and begging God with everything in me to give me a healthy and "normal" child. What did I fear during those times? Was I just being selfish in begging God for a perfect child? Or did my heart know that I would once have a child who was not deemed as "normal"?

To say that the past few days have been tough is a severe understatement. Samuel's death has had a profound impact on not only me, but my entire family. It has made us discuss issues that we have never discussed and frankly, want to ignore. It has awakened us to the fragility of life. It has made us seek God for comfort, guidance, and love.

I never expected to have a child with special needs. And I never expected for death to be such a prevalent subject in our life...in our family...in our conversations. I never expected to lose friends...loved ones...children. I never expected any of this. But God did. God knew what was in store for my life the moment he knew me. And I take solace in the fact that God not only knows my past and present, but he also knows the trials and triumphs that lay before me...and he knows how to hold me up in these times. He is God.

Abby has asked a lot of questions lately about mito. She's a smart little gal, and she has caught on quickly that there are quite a lot of people that die of this dreadful disease. I have reassured her over and over that Nathan is healthy right now, and while it is a serious disease, we do not expect Nate to pass away any time soon. Those are not the conversations you expect to have with your children.

I told Abby about Samuel's death a couple of days ago. She had seen pictures of him from our previous visit and heard numerous stories about him. Abby is my internal kiddo...she seems to trap her feelings deep down inside of her heart so that no one sees her hurting. She took Samuel's death with sadness, but seemed fine.

I did not tell Emma. As a mother, I want to shield my children from everything in this world that can cause pain. I didn't feel she was ready to hear that children as young as her can die. She has so far been under the immature assumption that only old people die, and I didn't quite want to ruin that ignorance...

However, Emma came to me in sobs today telling me that she was going to be so sad when I die. Obviously, she must have heard me talking on the phone to other mito families and inadvertently heard of Samuel's passing. I then sat her down and explained about Samuel and showed her pictures and recent videos of the sweet cutie pie. Em was an emotional basket case today. She definitely does not internalize her feelings.

Due to the recent conversations with the girls, I felt that it was appropriate for us to use today to send balloons for Samuel...green balloons for mito with a letter of memories of Samuel attached to the string.

Before releasing the balloons, Emma asked to pray for Samuel's family. In her prayer, she asked that God would allow Samuel to eat anything he wanted in heaven. She also prayed that Samuel's mom and dad and sister would be able to remember him by looking at pictures and videos of him. It was a precious prayer...a heartfelt prayer from an emotional little 4 year old whose heart was touched by a boy she had only heard about.

Abby prayed next...that Samuel's sister would be okay as an only child and that she wouldn't feel too sad not having her brother to play with anymore. She then asked God to make sure that Samuel's mom and dad would not feel lonely for a long time and that they would know that he was better in heaven.

We were all a sobbing mess after this. I had no idea that my girls comprehended so much regarding Samuel's life. I had no idea that they understood this much. I held them tight against me as my shoulders were soaked with the tears of my daughters, experiencing extreme hardships in life at such a young age.

I never expected this to be part of our life. I never expected to worry about death for our children, much less worry about my children expecting death for those close to them in their life time. But God did. And He will carry us through.

Please keep Samuel's family in your prayers through the next few days as they lay their son to rest and celebrate the life that God gave them to love and enjoy during Samuel's time here in earth. Please remember this family.

Friday, September 24, 2010

Samuel Knight


Every once in a while, someone comes into your life and instantly steals a piece of your heart. It happens when you least expect it and is usually someone you wouldn't expect to love so much and so quickly.

This is what happened when I met Samuel Knight.
Samuel and Nathan see a few of the same doctors in Houston in the mito clinic, and we had the wonderful privilege to be able to spend a lot of time with the Knight family on our last trip to Houston this past April. Samuel's mom and I had a blast chatting up about anything and everything over dinner, lunch, waiting around for various things in the hospital, and while our children ran up and down the halls of their house, tangling their oxygen tubing in messes that were almost impossible to pull apart.
Samuel hopped right into my lap numerous times to snuggle right into my chest, and I soaked up every little minute of his love during those moments. I was his and his sister's patient as they performed pretend cyndledectomies (a very medical-sounding term they conjured up in our pretend session of something that involves their life daily: playing doctor) and cured me with a routine dose of psuedomycin (or something that sounded like that). We laughed and snuggled and laughed and had the most fun. You see, God blessed Samuel with the most winsome personality, an infectious giggle, a zeal for life, and eyes the glint with each precious smile...God gave him these amazing characteristics to bring joy to each and every person who came into contact with Samuel.Before we left Samuel's house that warm April evening, he told me that he and Nathan had made a plan to switch roles...Samuel would come to live with me for a while and Nate would live with his family for a while. After some convincing that I had no idea how to access his port and that would be a problem if he came to live with me, we agreed instead to make fun plans for the next time we came to visit in October...next month. After some hugs and a kiss to his forehead, I left a piece of my heart with Samuel Knight that evening in hopes to gather more hugs in 6 months during our next visit.Samuel passed away last night. He left this world where he was hooked to tubes and monitors for most all of his life and is running free and completely uninhibited alongside our precious Savior in Heaven. In his short 4 years of life on this earth, he brought immense love and joy and courage and happiness to everyone who had the amazing chance to know him, along with numerous others who only knew about him.

Please keep Samuel's family in your prayers...his father Ben, mother Missy, and 5 year old sister Lauren, along with his extended family. Also pray for the medical team who have walked beside the Knight family over the past few years, as I know they are hurting deeply as well. Pray for Samuel's little mito friends, especially the ones who are old enough to understand that they will not see their friend on this side of heaven again...those who know that they too are suffering from the same disease as their friend who is no longer with us.

Our lives are better for having the wonderful opportunity to know Samuel for even a little while. He has truly been an amazing gift from God in this life.

Wednesday, September 22, 2010

Raising Awareness in Central Florida


I always say that while the circumstances aren't what we imagined with our family, we have met some amazing people throughout this journey with Nathan and I wouldn't want to trade meeting those special people for anything! The doctors, nurses and therapists that take care of Nathan on a regular basis all have places in our hearts forever...they are indeed a big part of our life for now on. Another group of people we would not have ever had the privilege of meeting if it hadn't been for mito are the parents of other children affected with this disease.

(Jennifer in front of our UMDF booth at the Rays game...she's my good friend and counterpart for the UMDF Central Florida Mito Group...)
We have had the wonderful privilege to meet many families experiencing the same life from a medical standpoint as our own...friendships have formed that will be life-long. Our UMDF Central Florida Group is a fairly new group...we've been meeting and participating in fund raisers and awareness activities for a little over a year, but we are becoming a very close group. I love that. Jump starting mitochondrial disease awareness week, the Tampa Bay Rays agreed to allow the UMDF to be showcased in the Community Corner spotlight for the Sunday afternoon game against the Angels. They even allowed the kids (Nate showed up a bit late and was cranky anyway) affected with mito to meet a couple of baseball players on the field before the game. Rocco Baldelli (shown in the second picture below) was so gracious to come down and talk with the kids some as well, as he knows fairly well the importance of such awareness for this disease.
All in all, I believe we had 85-90 participants in our awareness activity this year, which is loads more than we expected would come. It was a wonderful day, and even though the Rays lost, much fun was had by all. Thanks again to the Rays for allowing us to help spread awareness of mito to others in Florida.

Monday, September 20, 2010

Mitochondrial Awareness Week: Sept 19-25, 2010


Most everyone has heard of cancer, cystic fibrosis, cerebral palsy, down syndrome, and muscular dystrophy. Due to the wide array of awareness the public has with these medical diagnoses, there is also a huge amount of funds given to them for research in treatments and potential cures. That's great!

The key element to the complete formula of treatments and cures for diseases is awareness. Awareness of a disease equals more funds given for research...equals potential ground breaking information that could lead to a better and possibly longer life of those affected with these diseases.

The third week in September has been devoted to Mitochondrial Disease awareness. Obviously, this is something that is so near and dear to our heart and on our minds often. Below is a short video about Nathan's life with mito.

Friday, September 17, 2010

An obituary for Bear-Bear


Life is full of transitions. Babies transition from nursing to bottle to sippy cup; milk to pureed food to big ole people food; diapers to pull-ups to skivvies; bassinet to crib to big kid bed. Children transition from home to school to college; addition to long division to algebra; chutes and ladders to connect 4 to chess; trike to bike to car. We continue to transition through adulthood...married to married with kids to empty nest syndrome; aspirations of traveling to aspirations of buying new brakes for the mini van to aspirations of getting a nice area in the assisted living place; hanging out with friends to visiting with other PTA parents about the cool new running track the school is getting to talking about what dose of Benefiber gives the best and quickest results.Yes, life is full of transitions.

In the midst of all of this, there seems to be one right of passage that most babies and toddlers seek and enjoy...the finding and intense adoration of a transitional object during the tough time when they realize that mama or daddy will not be by their side or at their beckon and call at all times. During this time, most children gravitate to something they can hold onto...something that gives them comfort: a pacifier, a blanket, fingers or a thumb to suck, or a stuffed animal.Meet Emma's transitional object:
Bear-Bear has been a fixture in our home for over 4 years. When Emma was about 5 or 6 months old, I broke the cardinal rule of parenting and put a few stuffed animals in her crib. One of those stuffed animals was a white bear wearing a pink outfit that someone had given to Abby when she was a baby. And for some reason, Emma picked that bear up and held on to the tip top of its hat while she sucked her thumb. After a few days of the exact same routine, we realized that she had found her "lovey"...her item to give her comfort in the times that her parents were not there to love and dote on her.Bear-Bear became a permanent fixture in Emma's hand. He followed her in play in addition to sleep. He "pretended" to go potty in the midst of potty training. His hat became snot-covered and utterly disgusting during the winter cold and flu seasons. He was cried over during each and every 2 hours he suffered through the washer and dryer. He learned to deal through the many nights he fell off the bed, only to be found by a parent sometime in the middle of the night. He was stuffed in trash cans, dresser drawers, closets, toy bins, tricycle baskets, baby carriers, strollers. He visited the hospital a couple of times to see to the needs of a little girl who needed him more then than ever. He endured a parting from the ball of his hat to the disappearance of his nose...all while noticing that the fuzz and color that he originally wore proudly was being worn away day by day...by the close contact of a little girl who loved him like no other.Bear-Bear was not only a transitional item for Emma...he became her best friend. She talked to him daily, telling him about the adventures the two of them would encounter together. She dressed him into delicate dresses and tuxes that were meant to be for other stuffed animals but fit him so perfectly. We learned about 3 years into Bear-Bear's existence that he was indeed a BOY bear, though he often donned beautiful wedding dresses and gowns because we were short on boy bear clothes. Jay even conducted a Sunday afternoon wedding for the two of them a few months ago, in which the BOY bear wore a gorgeous white wedding dress because that was the best clothing he had. Bear-Bear earned the main role in many plays, showcasing his talent on the make-shift stage behind the living room couch. He pretended to be a "fetus" on the numerous occasions that Emma pretended she was pregnant and was succumbed to the natural way of feeding a newborn baby...right under Emma's shirt.
He was her very best friend. Not only the one who was constantly shoved under her nose for a "quick fix" of sucking her thumb...he was real to her.But unfortunately, Bear-Bear was an enabler. Emma has always sucked her thumb while holding onto his hat. That is the only time she sucks her thumb. Most of the time Bear-Bear was around, she was taking mini-breaks to suck her thumb...the poor thumb that is now flat and soft from 4+ years of sucking. We knew that if we had any chance of breaking her from sucking her thumb, we were going to have to put Bear-Bear away. We have know this for a long time now, but it has been so difficult to go ahead with this plan due to her intense relationship with this stuffed animal...with her best friend.
Originally, we started telling her that we had to give up Bear-Bear when she turned 5...but that back-fired when she started dreading her 5th birthday. She didn't want her birthday to come. She didn't want to turn 5. So, we decided to move the date up a few months, unbeknownst to her at first. With just a couple of days to go until "give up Bear-Bear day", we let her in on the plan...with a twist. Once this tough transition was final, she would be accompanying her family and some great friends from Indiana to Disney World for a big girl celebration. This was the catalyst that helped move her to this new life without bear-bear...this new life without the need to suck her thumb...this transition into being a "big girl".
Today was the day...the day that Bear-Bear would make his way to a memory box on the wall of the girls' bedroom. Poor Emma has been an emotional wreck all week thinking about this day. To say that this week has been heartbreaking to watch for all of us has been an understatement. Bear-Bear has become part of our family. I know that we will all miss seeing his worn-out hat pressed to Emma's nose as she sucks her thumb. But I also know that we will not miss him nearly as much as Emma. Seeing your child's heart hurt is one of the most difficult things to do. However, as a parent, we must always think about the long-term...Emma needs to stop sucking her thumb for many reasons and it is our duty to help her through this difficult journey.Today was definitely Bear-Bear day! He accompanied Emma to pick Abby up from school, where she sucked her thumb the entire time, pausing briefly to tell all her friends and friends' moms about him and that she was putting him in the box today. I had one last hurrah of rocking Emma while she held her best friend tight and sucked her thumb...I can not tell you how many hours this scenario has played out in the past 4 years, and I wanted one more chance to put it away in my memory banks. We held a little going away party for Bear-Bear, where Abby and Emma sang a going away song to the sweet guy...complete with Emma falling apart in sobs at the end of the song. Bear-Bear had cookies with frosting as his last supper before being put in the memory box.
It was a tough day. There were many tears...both from Emma and myself. It's funny how we get attached to the things our children love. It is almost as if our hearts seem to unite with those so close to us in even these genuine ways. Tonight, Emma looked at Bear-Bear through tear-rimmed eyes as he sat in a glass covered memory box and decided to take a stuffed giraffe to bed. She did not suck her thumb, as we knew she wouldn't. Jay is sleeping with our middle child to give her the additional comfort she may need through the night, but all in all, it has been a better transition than we imagined.

Sometimes parents have to make hard decisions in order to direct our children in the ways they should go. This was indeed one of those hard decisions. But in the long run, we may have a non-thumbsucker now.

Wednesday, September 15, 2010

Wordless Wednesday: And they glow in the dark!


Some things are just entirely too cute to pass up...

Monday, September 13, 2010

Just an evening on the soccer fields


Abby is quite the tomboy. She's my tree-climbing, 6-pack bellied wonder woman who is the first to tell you that she is NOT a barbie lover. The beautiful blonde-haired, blue-eyed gal would rather play minion freeze tag (whatever the heck that is) with the boys at recess than hang out with the girlie girls. So the kid was super duper excited that two of her good freeze tag buddies from her class were also on her soccer team. These three are a trip!
Emma, who is indeed my girlie girl, would rather eat a jalapeno hot dog sandwich than run up and down a soccer field. Her new found adventure is ballet, which should bring some new pics of the lass in her tee-totally adorable leotard and slippers soon.
Nate, well, he will go anywhere for any length of time as long as he has his trusty side kick: zee ipad. This little guy is now being referred to as our little gamer.Abby's long muscular legs make her look like a genuine soccer player. Her gazelle type running is quite fun to see as she gallops back and forth across the field playing both offense and defense and whatever else may be in between.
This year is different for our kids playing this exhausting sport. This year they seem to "get it". It is quite fun to see them try different strategies to run the ball to their end and communicate with one another on the field in a group effort to try and score. This year, they really do seem to be enjoying it...not just appeasing their parents who want them to do something other than sit at home and watch Spongebob for the umpteenth time that week. Even on the bench, they are making up their own little chants and screaming orders and encouragement to their other team mates on the field. This year, they are looking so much more grown up.
But they are still kids who enjoy post game pile-ons and laugh until their cheeks hurt. They slide purposefully onto the grass to create streaks of green stains on their brand new uniforms. They role around with one another until the itchiness gets too them. They create long-lasting memories and amazing friendships on these muggy late-summer evenings...
...all while their parents stand back and wonder how in the world they are growing up so fast.

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