Beach Bound

Well we are headed to the beach. What's that? Why yes, it is the week before school, t-ball and golf starts. Well ya know, only a man would plan a vacation during one of the busiest weeks of my summer! I am determined to block out all the open houses and parent meetings I will be missing, and just enjoy my time lounging on the beach. Wait! Did I say lounging on the beach? Hahaa NO..I have been reading a novel where people actually get to do that, and I must have still been in the fantasy. I will be chasing 4 boys around, making sure two don't get sucked out into the ocean and cleaning sand out of places I didn't know existed, several times a day. If I can avoid a sunburn, I am doing good!

Ahhhh...the beach! My idea of a grand vacation is quite different. I'm more of a cabin in the woods kinda girl. If it's snowed in, that's even better. A fire, comfort food, and a good book are all very appealing to me. A very close friend of mine had recently introduced me to books by Grace Livingston Hill. I was instantly addicted! I have read all the ones that are free on Ibook and Kindle, and am now in withdrawls. If you have any kind of a romantic notion in you, you will love them. They are of course Christian as well, so they are clean :) I'm glad I got all that reading out of the way before heading to the beach..this way I'm not disappointed. The boys are all so excited to go to the beach that I can't help but be excited as well. It's about making memories together, and sharing moments. Besides, I like to go cold turkey on the first day of school anyways! It gives us all a little JOLT!

A Great Honor

I'm very excited about Pediatric Cancer Awareness month that is approaching. The month of September is "wear your gold" month! I am so honored to have been asked to speak at the Joan Hisaoka Gala being held in Washington, DC next month. I feel very blessed to be able to represent the Life With Cancer center and help raise funds for all the programs they offer.  I am going to post the video that they will be showing. It's a video we made last Fall, and I choke up every time I watch it. It makes me think..hmmm..I never really knew all what Levi was feeling and going through when Lukey was sick.  Afterwards, I get to share a little of our journey through cancer.

http://bcove.me/fxcouv1e

September is a good time to make donations to organizations raising money for Pediatric Cancer. CureSearch, American Childhood Cancer Organization, and Candlelighters are all great organizations. If you have several hundred laying about and you're not sure what to do with it, well buy some tickets to the upcoming gala and raise some funds for all the great programs they offer.
Joan Hisaoka Gala 
The Life With Cancer center did so many wonderful things for my family. Levi had a place to go where he could relate to other kids and what they were going through. He called it "his other school". I'm very thankful to them for that, and for making a huge impact on him. According to him, they always had Awesome pizza!

A New Season

This post is dedicated to Missy! My faithful reader and friend who keeps reminding me to post! Well it has been awhile since I have posted. I think I have been trying to maintain some illusion of normalcy..although normal is completely overrated. What is normal anyways? I think it's different for everyone. Our normal is constantly changing anyways. School is getting ready to start again! Wow..I am so excited about that. This has been a great summer with lots of memories made, but the noise and bickering and boys tussling in the other room will not be missed. Levi is entering 4th grade, which is crazy to me! When did he get that old? Luke is starting Kindergarten, and the twins will start their last year of preschool. Once all those buses have pulled away carrying my precious cargo, I will be sad and think, well all that noise wasn't so bad. Fear not..it will start up again in the afternoon, so I will sit and enjoy my cup of decaf Earl Grey without having to reheat it 2-3 times.

I'll just update you on the status of the boys health. We had quite a lot of appointments this summer, trying to get things done before school starts. Luke had his complete blood workup done and an ultrasound of the liver. Everything looks great!! Thank you Jesus! The twins had a protein assay done that we have not gotten the results back yet and a full blood workup from an immunoligical standpoint. Their immune systems are holding. They have a low IgA..but it is still about the same as last year. They are doing very well at writing despite what I was told last year, they can almost write their names entirely by themselves! Thank you Jesus! We did find out that Luke is not a carrier of the gene, but Levi is. Our God is a healer though, that I know for a FACT!!

I am finally bringing a dream into reality. I have had a project I have been working on for the last year. Well, with a great partnership with my friend Missy, I am looking to have the first of a series published. I can't wait to share with you what it is all about. We have several more in the queue, that are works in progress. The idea first came to me when I was on a tour of the Loudoun County Landfill with Levi's cub scout den. I know you are chomping at the bit to find out..but you will have to wait :) Missy is extraordinarily talented and is bringing it all to life! I have been praying God's favor on this project and I believe it will be Awesome!! More news on this..I promise!

Pediatric Cancer Awareness Month

I cannot forget what we have come through. September is a month for raising awareness for pediatric cancers. A cause that is seriously underfunded and not in the public eye or thought. It's sad and shameful! Luke is a cancer survivor..a miracle! We have been blessed by so many organizations like ACCO, Candlelighters, CureSearch, Life with Cancer Center, Teardrops to Rainbows...all of which need funding to operate. They dedicate their time and money to pediatric cancer patients and their families..they deserve a huge THANK YOU!! They deserve the funding they need! By raising awareness we may be able to someday buy a case of bottled water with a gold ribbon on it..or a can of soup...not criticizing (all cancer research needs funding), but these are our kids...the future generation...something more must be done!!

                                                  Luke in the hospital after diagnosis

 

                                                                  After transplant

                                                              Our hero Uncle Michael

                       Always with a smile...he helped me get through it with his sweet smile

                                                                     Our Survivor!

                                                                           Sweet Baby

                                                           Luke and Levi...Brothers!

Luke today...a healthy, strong, funny little boy. Almost 4 years in remission, he continues to bring joy to our lives with all of his crazy ways! His journey prepared us for what lies ahead. You will all hear about Rare Disease Day as well. We need funds for Ataxia-Telangiectasia research also. We have a lot of work to do, we thank you for all your support. Lets get the word out!!

A Call For All Out TRUST

Trust- firm belief in the reliability, truth, ability, or strength of someone or something. The dictionary of legal terms defines trust as -A relationship created at the direction of an individual, in which one or more persons hold the individual's property subject to certain duties to use and protect it . I like that. Ben and I have received a call for all out trust. There is no other option. I have a relationship with God, he holds my children in his hands, it's His duty to use them and protect them, and I know he will! 

Psalm 20:7
  Some trust in chariots and some in horses, but we trust in the name of the LORD our God.
Psalm 56:3
  When I am afraid, I will trust in you.
Psalm 91:2
  I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
Psalm 112:7
  He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
 Job 13:15
   Though He slay me, yet will I trust him.

That last verse really touches my heart. Though He slay me, yet will I trust him. Job was a man of all out trust. All or nothing! He lost everything..everything..we can't even fathom that kind of loss, and yet he continued to trust in God. I am honored to be the mother of these 4 very special little boys. I am honored that God felt that Ben and I could be trusted to love, comfort, and raise up these boys. I was thinking back on everything we went through with Luke and thinking of all I had learned through it. He changed me..in fact He did more that that..He healed me. The miracle was not all about Luke..it was about us as a family and each of us as individuals. He healed me of fear...fear of death, and of failure. He healed my mind..my way of thinking. He changed me, for the better. We are better for having come through that. We are stronger now for the battle we face. It's time to go to war again, wearing the whole armor of God. We will fight for a cure, a treatment, anything that will help my babies...our Hope is in you oh Lord!

A New School Year!

Well, it's about that time again. To make it a little more difficult this year, they decided to do away with preschool at Belmont Station and move the twins to Newton Lee. Now I can get Luke on the bus at 6:55 am to Frances Hazel Reid, then Levi at 7:24 to Belmont Station and then drive the twins to Newton Lee by 7:50. Should be exciting!! I have been in the process of rearranging the 2nd floor and thought I would be finished by now..I'm not. I moved the office to my room (condensed version), moved Levi into the office (needed his own space, Lukey free), moving Lukey into the twins room, and moving the twins into the big room in big boy beds. I have to still make the transition for the twins and pad the foot and headboards on their beds. They make me very nervous with all their bouncing around. They have really bad balance and coordination, so when you put that jumping on a bed, you usually end up with a split lip or goose egg:( I was thankful that Aunty Sarah got to come for a visit this summer and spend some time with the boys. We were able to sneak away to the Outer Banks and relax...relax? HAHAHAHAHAAHA...is that even possible?

We made some fabulous memories with our boys and that's what is important. We went to the NC Aquarium and they just loved it. I made a trip out to California with Levi, which landed us in Minnesota and 3 days on a Greyhound back to Virginia, but that is it's own post. I cherish these days, even though they drive me crazy some days..I am sad when they are all gone at school...until they get home and then I'm like..what was I sad about again? I LOVE MY BOYS!!!! They are gifts to me, God saw something in Ben and I, and trusted them in our care. I will be a little weepy on the first day of school, but I think a lot of moms are :) It's part of what makes us moms.

Emergency Evacuation Route

There was this sign hanging on the door in the room where we met with the Dr.'s, it said Emergency Evacuation Route. I kept staring at it as the Dr was talking..thinking how badly I would love to run out of the room right now take that route and disappear. Like a child plugging their ears and going lalalalalalalalalalalala I can't hear you...but I can't do that. I have to sit in the chair again, look into the face again, listen to how sorry they are to have to deliver such news. Looking over at Ben and thinking..here we are again, but we are stronger this time...more resilient...you didn't just deliver our boys a death sentence..you delivered a challenge. Challenge Accepted!

I can still vividly remember the face of the Radiologist that told us Luke had cancer..I have not seen him since, but if I did I would know him. Some images have a way of embedding themselves..faces..an emergency evacuation sign...you just remember where you were and what you were doing when you hear devastating news. The news that followed the twins diagnosis might have been equally disturbing. They are looking for a link for this gene that we carry to the cause of Luke's cancer and the fact that Ben and I are also at a higher risk for getting cancer ourselves. It's time to get screened..colon and breast. It is also time to make sure Ben and I are as healthy as we can be, so we can care for the boys. It's time to get back to training and eating clean. We will do it for our boys.

Today I am focusing on today..everyday I am going to make it the best day. Looking out too far is scary...I get scared and unsure if I am enough, I am not made of steel, I cry..sob in fact..but I BELIEVE and that is enough for today. Tomorrow I will wake up and be enough for that day...every day is a gift from God and we will make it the best.